The Dark Side of Aromatase Inhibitors, Part 2

The Dark Side of Aromatase Inhibitors – Part 2

I have so much to say in this post I don’t even know where to start. I guess you could say this one is a bit of a rant. I’m a firm believer that a good rant now and then is good for you, even a healthy thing, so that’s one reason I’m sharing about my experience with the dark side of aromatase inhibitors.

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

First of all, many women hesitate to talk about the nasty side effects of AIs because they don’t want to be perceived as complainers or whiners.

What does this say about me?

I’m not sure, but guess what? I don’t care.

I say if you don’t speak up, your doctor will just naturally assume (and rightfully so) that everything’s fine. If a whole bunch of us don’t speak up about whatever the issue might be, why should we expect things to ever change?

Can “complaining” a bit be a form of advocacy? I say yes.

As I mentioned in my previous post, the three FDA approved drugs most commonly prescribed for adjuvant hormonal therapy for post-menopausal early stage , HR-positive breast cancer patients are anastrozole (Arimidex®), letrozole (Femera®) and exemestane (Aromasin®).

It should also be noted that such drugs are also sometimes used for other purposes, such as treatment of metastatic breast cancer and even for prevention purposes.

AIs have been proven to be effective in preventing recurrence. This is a good thing and it’s important to take them and keep taking them if one has been prescribed for you and you are able to tolerate it.

I am not suggesting and would never suggest that a woman do otherwise.

The side effects of all three of these drugs are similar and include bone loss, weight gain, fatigue, hair loss, vaginal dryness, loss of libido, joint pain, insomnia and bone fractures to name a few. And of course, some of these same side effects also affect some women taking Tamoxifen.

The AI drug of my original oncologist’s (I’ve had five oncologists due to various reasons – trust me, I’m not that difficult a patient) choosing was Arimidex®. I started on it shortly after finishing up chemotherapy and have been on it for two and a half years.

I am taking a short break at the moment because, well… because of that dark side.

At every oncology appointment since I began my adjuvant hormonal therapy, I have been asked the same question; you might very well know the one, are your side effects tolerable?

Finally, at my most recent appointment I said, “No, they are no longer tolerable.”

Stating this was really hard for me and it was a very unpleasant appointment for a whole variety of reasons that I won’t go into, but I had reached a breaking point of sorts as far as side effects go…

Do you want to read more articles like this one? Click Here.

Shortly after I began taking Arimidex®, sleep issues due to leg pain and leg cramps (to name a couple) started up. Aches and pains in my joints/bones became significantly bothersome 24/7. I began to feel like an eighty year old woman when trying to get out of my car, rise from a chair, sit through a movie or just move around period. In addition, quite quickly after beginning on the drug I gained fifteen pounds (am I actually admitting this so publicly?) Last winter I was diagnosed with osteopenia (bone health previously was excellent) and this spring it became nearly impossible for me to walk to the stop sign at the end of my street because of the crippling effect on my feet and toes. Before the drug, I was used to walking two to four miles a day by the way.

I could probably write an entire post on each one of these side effects, but I’ll spare you too many details!

And I get pretty annoyed when my issues were/are brushed aside or attributed to normal aging.

I’m just not buying that. Why not?

Well, because I’m not that old, because I know my body and because I can pinpoint when my side effects/symptoms kicked in.

The bottom line is these issues became bothersome enough that I finally said enough and forced myself to finally admit (to someone other than Dear Hubby) that the side effects were no longer tolerable.

This is a difficult thing to say to your oncologist; at least it was difficult for me to say it to mine because my oncologist was adamant about me staying on Arimidex®.

I feel damned if I do and damned if I don’t.

I want no regrets down the road. After all I have done everything in my power so far to keep the cancer beast at bay.

Why would I stop now?

Sometimes you have to listen to your body. Sometimes you have to follow your gut. Sometimes you have to take a break.

I am sharing about my experience for the same reasons I share about so many things, in the hope that it might help somebody else feel less alone and more empowered to not suffer in silence.

I know many women out there are suffering in silence.

At every single support group meeting I attend the conversation always circles back to the side effects of these drugs. Someone always brings it up. Just the other day I received an email from a woman who wished to remain anonymous, but she gave me permission to share her reasons for keeping quiet about side effects. She had this to say:

… the most troubling side effect is my lack of libido. Not only do my oncologists seem lost about this troubling effect, I don’t feel worthy enough to really push to get answers because 1) It’s embarrassing and 2) I feel lucky to even be alive; I feel like this side effect is small in comparison to what other women are going through.

I just needed to share this with you.

Again, there’s that guilt thing… and not feeling worthy to discuss bothersome side effects with one’s doctors or push for answers is just wrong.

I also know that patient adherence is a huge issue with these drugs. Many women are not taking their little white pill for the recommended five years.

Is this a problem?

Of course it is.

Do I understand why so many women stop?

You bet I do.

I will even admit that I have seriously considered being deceptive about my own adherence. I have considered tossing my little white pill in the trash while pretending to take it.

Can you believe that?

Ultimately, I decided the heck with that deception nonsense.

So, what am I going to do from here on out?

My plan is to stay off all AIs for two months or so. I want to see how my body responds. I want to see if things improve. I want to see if I start feeling better.

My oncologist did say to me, “Nancy, you won’t go back on if you go off because you WILL start feeling better.”

This logic seems quite twisted to me.

I don’t necessarily agree with the not going back on part of her prediction, and this is one reason (only one) that we parted ways.

So I will detox for a bit and then switch to Aromasin®. For me taking a short break and then switching things up and trying a different drug is the best option right now.

Is it the best one long term?

Who knows, but I’m comfortable with my decision. It feels reasonable.

I wish there were better options. Women deserve better options.

I know that doing everything in my power to try to prevent recurrence matters – a lot, but my quality of life matters too.

Why must I choose between the two?

Why must anyone?

Okay, I’m done – for now! Thanks for reading!

You’re turn!

Update:  I am still taking my prescribed AI, and I now have a different oncologist. I feel it’s important to state both of these things. For many reasons, I couldn’t tolerate Arimidex, and switching to Aromasin made a difference for me. I still hate it, but I’m doing better. Also, just a reminder that this blog is never intended to be a substitute for sound medical advice. It is a place to vent, share, support, learn and advocate. Because no one should suffer in silence. No one.

If you’ve been on an AI or Tamoxifen, what side effects have you experienced?

Have your doctors been helpful in dealing with side effects?

Have you stopped taking a drug due to side effects?

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

The Dark Side of Aromatase Inhibitors

Get access to my FREE resource library with free eBooks, the first chapter of my memoir, audios and more! Click Here!

791 thoughts to “The Dark Side of Aromatase Inhibitors – Part 2”

  1. Thank you so much for this blog and for all of you who have posted. I get so much more info here than from my “team.” I was diagnosed with breast cancer in May of this year. Only need radiation after my lumpectomy. I am now on anastrozole. After reading all of your posts I understand now why my legs hurt so terribly in the mornings. As I was taking low dosage HRT meds for hot flashes/night sweats (age 60 post menopausal) I am back to suffering from them. Doc has given me Venlafaxine to help, but so far it hasn’t helped. We have increased it three times. She has Sid if this doesn’t work we will have to try something else. I am awake every hour at night and don’t sleep well. Anyone found something that helps the hot flashes? It’s embarrassing when my glasses steam up at work.

    1. Jody, the venlafaxine only worked for me for about 4-6 weeks. I was not going to increase dosage, nor keep taking other meds to counteract the side effects of medication. I stopped taking all of it. Still feeling the joint pain and stiffness – trying to work around that. I’m gutting out the hot flashes during the night. We have our thermostat kept very cool, and an overhead fan on high every night. I have found that drinking a lot of water helps. Since I have been off the meds the hot flashes kind of increased, but now they are slowly decreasing some in intensity. I’d rather put up with that than the other stuff. I am trying different supplements to see what works. Turmeric, may be taking the edge off of them. I do know that black cohosh didn’t help before, but I may try it again. Good luck

      1. Update: I stopped the AI as my “team” suggested to see how severe the hot flashes were. However, coming off of venlafaxine has been HORRIBLE. Thought I had the flu. Doc said it was withdrawal symptoms. Did I mention it was HORRIBLE? Now I have to go back on it to come off slowly. Before all the meds I felt pretty good. I will be talking to oncologist about coming off everything and finding something that works for hot flashes. Thanks for saying the hot flashes diminished some. There is hope.

        1. Venlafaxine is an evil drug. I had a similar issue w withdrawal, and came off very, very slowly. It didn’y Do much for the hot flashes anyway, but gave me insomnia and restless legs!
          Evil drug.

    2. I started anastrazole in September 2018. After 15-20 major hot flashes a day, and little sleep, I was changed to examstane. Hot flashes cut in half and are milder, but, I have crushing fatigue, joint pain and muscle aches, and anxiety!
      I am at a total loss as to what to do next. I also have epigastric pain, which is very unusual for me….
      Not sure this is an upgrade…

  2. It was horrible for me.. started out with hot flashes, really bad ones! Then anxiety and mood swings.. would cry for no reason…called Dr. and he changed it to another one, It was no better…ended up depressed so had to go get something for that and anxiety..I decided that is no way to live so I got off of them 2 weeks ago…not sure what I am going to do…

  3. Hello! Thank you for this post. I may have missed it, but has anyone had the mental fog that I have experienced on Aromasin. Until I looked up depression, I thought that was what I was experiencing, I didn’t know that Aromasin affects the brain. May even cause early Alzheimer’s. I found this info on the American Cancer Society page in an article written by a neuroscientist. His wife refused to take it.

    1. Alice: While the joint and muscle pain was horrible, I think the brain fog and forgetfulness of taking the anastrozole was the WORST part of it. I commented on my own below. I finally had a meltdown at the end of October and stopped taking all meds I was on. Still experiencing the body aches and brain fog, and I was only on the medication for 5 months….I don’t know how anyone has taken it for 5 years! Letting my body try to detox and heal through the end of the year. I’ll regroup after that and figure out some other alternatives. My quality of life suffered horribly from this stuff; and I’m afraid it might end up being permanent.

      1. Alice, Annette, I suffer from brain fog, but I always ascribe it to my menopause, not the anastrozole! Regardless, my acupuncturist has a treatment point on the crown of my head that cuts through that fog! She’ll treat me for that about once every 3 months for a few subsequent sessions, then I’m good. You may have the same results!

        Love to you all!

        1. I am new to this site and I am wondering how long you were on an AI, did you stop taking it, and if you ever had a recurrancr? I am taking one now and have been on it for one year, I don’t know that I can tolerate it much longer.

      2. I have the brain fog and forgetfullness only after 3 months on the drug. I had heard about “chemo brain” and that is fog and forgetfullness, so I thought it was from that. But now that I read what other women are saying, I truly believe it is the ANASTROZOLE.

      3. As a husband and care taker, I am at wits end. My wife moans and groans in pain, after the tears stop. Doctors, are educated guessers. They are baffled, and can only say. Wow this must be hard.

        Well it is. I am sorry more people are going through this. And the drug company is getting profits. Stay strong and maybe we can find help. God bless and a good 2020 to all.

        1. I refused AI- instead go once per year to Verta life clinic in Mexico for hyperthermia and dendritic cell vaccine- I feel amazing – this my 5th year will be my last.

          I do not support medical castration for prevention

          Phuli Cohan MD

          1. Please provide references to scientific journal articles that show hyperthermia and dendritic cell vaccine therapies reduce the rates of local or regional cancer recurrence, new cancer occurrences, and distant recurrence or metastasis as well as aromatase inhibitors.

            You have no AI symptoms, but do you get the same level of cancer risk reduction? How much does your therapy cost? Do you have a financial interest in this clinic or these therapies?

            Frankly, I think you are entitled to your choice of therapy, but your statements imply that these are evidence-based and have equivalent benefit with the magic of no side effects. I don’t buy it.


            In response to reply below. First we are all entitled to our opinions, this is mine to share. There are many women unable to tolerate AI and I felt it important to let women know of alternatives.

            The above link is recent study on dendritic vaccine in USA- the USA is lagging in alternatives to harmful drugs, my opinion. I had 3 tumors in my right breast after one month therapy, 2 tumors were gone and third was half its size. I also suffered from Lyme as do many breast cancer patients and could not tolerate drugs or radiation so was forced to look for alternatives.

            I have no financial gain from this clinic. Google hyperthermia and you will see many research articles regarding its use in many forms of cancer and Lyme.

            I remain Lyme free (vaccine cured my symptoms) and cancer free, fifth yer out.

    2. I forget wear i’m driving, what i’m going to the freezer for…. which way to turn the wheel to back the boat up…yes the fog is real…. i’m 1.5 years into Arimedex “however its spelled” and now my hands hurt so bad i’m taking it every other day until I see my doc in awhile. I had double mast. after only having a small tumor but the DX score was off the roof….but I have no work anymore stress is so less, both breasts are gone, I think i’m going to go off the drug totally at the 2 year mark. I just need to get on with life….. I hate taking this AI, yes the risks are real…. I just can’t see that far ahead….

  4. Thank you for this blog…I, too, have/had been on an AI; Anastrazole. Prior to all of this breast cancer nonsense I was still teaching group fitness classes 3 time per week and also working out in between along with working my full time job. I have been a group fitness instructor for nearly 35 years. Had my surgery (lumpectomy) in February of 2018, radiation for 6 weeks and then started the AI in late June of 2018. The bone, joint, muscle pain became intolerable. I also started getting numerous calf cramps in the middle of the night; not to mention being up every hour with hot flashes. I honestly think the last good nights sleep I had was the day AFTER my surgery! I think even worse has been the brain fog and forgetfulness that has plagued me since being on that medication. I was put on generic Effexor for the hot flashes; it worked for about 4-6 weeks. By the end of October I stopped taking ALL meds…I am fed up. I don’t know how you made it for 2 years, I barely made it 5 months. As of this writing I am still experiencing some joint pain and body stiffness, but I am also barely working out anymore due to my job(s) and also the fact that I am still so fatigued from lack of sleep its all I can do to get up in the morning, work 8-14 hours some days, then get home. I have put on some weight, not enough to be significant to most anyone but me, however, it is still unacceptable. I had to switch to a new oncologist due to a change in jobs/healthcare systems. She wanted me to start taking Letrozole; I filled the RX, however I am still not taking it and I told her that this past Friday. I am going to give my body a chance to “regroup” through the end of the year at which point I am supposed to be seeing a “holistic” MD who is part of my healthcare system. I am also going to continue my own research into supplements, diet changes, and other things that I can do to naturally help my body heal. I am 58 years old and this has been THE only medical issue and surgery I have had in my life. (even my 3 childbirths were easy!). If anyone out there has any research or info that they can share of a holistic nature, please let me know!!!!

    1. I had Diep flap unilateral ,mastectomy April 9 then radiation in June….I started anastrozole sept 1…depressed,hair thinking,anxiety and severe bone pain….I work out 5 days a week,aerobic,power yoga,yoga and strength train. now dr game me resroril yesterday for insomnia so sever,going to bed at 7 M…I don’t think I’ll ,are it longer…Iam 59…I eat plant based diet as well taking supplements. my onco dx score was 9..I hope in June the trial will be used as gold standard which is your recurrence. rTE FOR CANCER WAS SCORE 9…..VERY LOW….if THEY DECIDE A LOW SCORE IM CONJUNCTION WITH ONCO DX TEST USED AS GUIDELINES FOR TREAMENTS…..I MAY STOP DRUG…hope I CAN MAKE IT TO June

      1. Hello Debora, which study are you talking about that it is going to occur in June? Is it something to do with a low onca type DX scorel? Is there an opportunity or a possibility that we may be able to stop taking the AI if we have a low score?

      2. Did the anxiety and depression stop I’m sorry I just want to know I quit anastrozole 8 days ago and I’m still depressed I am 29 and a man taking it with my Trt sorry if I am on wrong blog but not many men take this and the anxiety and depression is unbearable

      3. If you stopped anastrozole did the anxiety and depression and crippling panic attacks stop I’m a 29 year old male but I’m taking this med for Trt and it has been horrible I can’t find make blogs sorry if I am intruding but I need hope this will stop I quit the anastrozole 8 days ago still horrible anxiety took it for 3 months 2 x a week

    2. I started seeing a naturopath in January last year to help me detox from my post-lumpectomy radiation treatment. She used all my labs from the numerous tests I’d had in the prior 6 months, we discussed vitamin therapy (high doses of D3 (above the 50th percentile I fell in) and iodine (I take cholella, a seaweed supplement). She uses BIE (BioEnergetic Intolerance Elimination), which is a natural, non-invasive method that helps a person’s body identify stressors that are causing symptoms. It sound hookey, but I trust her and I trust the pseudo science behind the diagnostic tool.

      I also advocate for seeing a massage therapist and an acupuncturist.

      I love you all!

    3. Get the book “Cancer Outside of the Box”, which approaches cancer treatment holistically and has lots of information regarding breast cancer.

    4. Dear Annette,

      I will only say this: beware of holistic anything! A colleague of mine who also had BC decided not to do any medical things, went holistic, tried acupuncture, homeopathy, naturopathy, the lot – and she is pushing up the daisies in her village’s cemetery.

      Knowing this, I take medical expertise very seriously and don’t fall for any esoteric theories. Science is what saves us, or at least prolongs our life. However, I will not lie: Aromasin is making my life very difficult. My hair is falling more and more, I have pain everywhere, especial the legs and feet, and constant anxiety, nervousness and insomnia. But I want to put all the chances on my side and not end up like my colleague, so I am holding on…

    5. Look into the book “the plant paradox” by Dr Gundry. He has videos you can watch too. It is a way of eating that is suppose to be healthier , prevent and cure disease ad well as fight or keep cancer from coming back. I have been treated for stage 1 breast cancer with 4 weeks of radiation, and am on anastrozole for 5 months. Have been having some joint pain after extreme excercising and Charlie horses once and a while at night. Am mostly following the Dr Gundry diet, no sugar and no animal products except wild caught fish , shellfish and grass feed chicken eggs. Cancer thrives on sugar and there is a enzyme in all animal products beef, chicken, pork, cheese , milk that have a enzyme neu5gc . Neu5gc is found in all tumors. So in theory us cancer people shouldn’t really be eating any animal products. I do eat the wild caught fish aND shell fish occasionally. It’s a difficult diet to follow, but he has a lot of scientific research to back up his claims. He is a heart surgeon by trade.

    6. Yes – you can take DIM and work up to the full recommended dosage. (you will detox a bit for a while) DIM occurs naturally in cruciferous vegetables but we cannot eat enough of these vegetables to get the benefit of estrogen control. It works naturally by metabolizing estrogen correctly and even helping you excrete the excess. I am still trying to regain my strength after a month on Tamoxifen and then a month on Anastrazole. AIs harm your heart and while you may no get another cancer, I read that about 20% of women on these drugs have a stroke or heart attack. Huh?! I just don’t want to die period! The heart is effectively damaged. No Thank you! Now I would not encourage anyone to take my advice unless they are already OFF AIs because they can’t take them at all, like me. I have been off a few days and still can’t take a deep breath. My heart rate stays elevated which makes a good run impossible and I miss my runs and work-outs. I miss any energy at all. Check out the Truth About Cancer online for more info on ways to fight back naturally. I have lost all faith in western medicine at this point, although it was all I had available. Yes, lumpectomy was needed and the “safe” radiation knocked me for a loop but I’m Not Doing anymore of theses horrible AIs!!! Is it toxins?, I dunno but it’s not good. Asia incorporates many types of alternative treatments and patients Live, but you have to research. The Truth About Cancer just had a docuseries called Eastern medicine. I learned so much and I hope you do too! Big Hug, Kelly

    7. I had my cancer surgery December 2017, chemo in February and ended radiation July 16th, of 2018.they found 2lymph nodes with cancer.
      They put me on anastrozole. Have been on since June 20th, 2018. In a few days will be 1 year, the pain is so bad in my joints, I thought it was my fibromyalgia.
      So glad I cameon this article. This past week has been my worst, I will be 60 at the end of the year and feel like I am in my 90s. Cramp in my legs and my knees have so much pain and stiffness. Do not sleep nights and very irritable and fly off at the smallest thing.
      I asked my doctor if they changed my meds, if my pain would go away and he said he cannot guarante.
      where is our quality of life!

      1. Hi Nancy, I have been on Anastrazole for three years. I don’t get bone pain as I take Curcumin capsules twice a day and walk up to five miles. I eat lots of veg and fruit. The biggest side effect I have is foggy brain, and being more nervous.
        I Believe is best to stay on these horrid drugs, as there it is 50 percent more likely to stop the cancer returning.
        Take care. Sheila

    8. Hi Annette,
      I had lumpectomy in January of 2019. Then was radiation and in April my oncologist prescribed Letrozole to take for 5 years. At the beginning, 4-6 weeks I only experienced some hot flashes, but I thought I should tolerate that. Somewhere in summer of 2019, mid August, I started to cough and had some difficulty to breath, short breath. I though that it was because of heat and air conditioning in the building where I worked.
      In September it became a bit worse and in October my hands and feet swollen and the face puffed. I wrote to oncologist. He instructed to stop Letrozole and do the blood test. After he received the results of the test which was pretty bad, it appeared that I have muscle inflammation in the whole body (I could not climb the stairs) and right now I am under investigation to find out what caused it. I was very healthy and active person before the surgery, but right now I am on Prednisone and I do not know weather the muscle disease will go away or ….. I will experience muscle weakness in future. Besides the fact that I am not sure which AI I can take to avoid the severe side effects that I already have.
      I understand that everyone has different reaction to different drugs, but I am 99% sure that my muscle problem started from the time I started to take Letrozole, although oncologists (two different once) say that they have not heard about the severe side effects of AI-s which is clearly not true. I have read many stories of different people saying that they rather have quality life than struggle with the side effects of AI-s.
      I wish you all the best.

      1. Annette,

        I hope in the last year since your post, you have tried acupuncture for your AI symptoms. Here is a summary of a 2017 randomized clinical trial that showed benefit.

        Acupuncture Reduced Joint Pain Caused by Aromatase Inhibitor Treatment
        in a Randomized, Phase III Clinical Trial

        SAN ANTONIO — Acupuncture significantly reduced joint pain for postmenopausal women with early-stage breast cancer receiving treatment with an aromatase inhibitor compared with both sham acupuncture and no treatment, according to data from the randomized, phase III SWOG S1200 clinical trial presented at the 2017 San Antonio Breast Cancer Symposium, held Dec. 5–9.

    9. I consulted by phone with Dr Dave Allerdice at Sage Cancer Care, Portland OR. 503-206-6218.
      I had a lumpectectomy in 2015. Took Arimidex for 6 months following, quit because of side effects and have been following Dr Dave’s plan since then. I got his info from this blog.

  5. I started on the devil drug Aremidix in April 2018. My last pill was Mid November. I have COMBED the web for info on how to reverse the horrible side effects but I have come up with nothing. I am 64 and was just fine before this drug. Active in ALL aspects of my life. Now I hurt every where in my body especially feet, legs, hips, chest, shoulders, head, & hands ALL THE WAY TO THE BONE. I have NO sex drive. My skin & hair & nails are fragile and dry. Everything about being a woman has changed. Are there any suggestions for reversing the damage this drug has done? Thank you in advance.

    1. Jaine- I also had terrible side effects – my body hurt everywhere and the pain in my hands kept me awake at night. My doctor and oncologist were ok with my stopping the meds, My cancer was caught early and I choose mastectomy but I could not live as I was living. I was told it would take about 6 months to feel better in my hands and joints. I have followed up with an orthopedic doctor who did some X-rays and gave me a steroid pack to knock back the pain ( which has helped very much) This may be short term but I am grateful to know there is no evidence in my X-rays that the hand pain is permanent. Within a week of quitting the meds ( i tried all of them BTW) I began feeling like myself- mentally! For me – the worst part of this has been the AL’s – so I am working to find the answers to helping my body feel better. ( As much as possible without meds) I believe that Yoga, massage, naps, and working with a body roller, and lots of stretching is my ticket. My doctor also told me that research has shown that exercise would offer me close to as much protection as the meds. So – I’m gonna go with that since I could not live with the meds. I believe the use of my hands and sleep were a top priority for me. Also- the meds made me feel like I was sick everyday – like I had Cancer or the Flu! which worked against my efforts to want to fight, exercise, or try to live my best life. Good Luck to you and God Bless!

      1. Thanks Lisa for sharing. My cancer was so small they couldn’t oncotype it. I had bilateral mastectomy, no node involvement so am really wondering whether I have much risk at all, other than the almost certain debilitating effects of the exemestane I am on. I was doing okay with the tenditinitis in the hands with lots of supplements (evening primrose oil, glucosamine, HA, Algae cal, turmeric, Vitamin D) but now I am having tendinitis symptoms in my hamstring, and I read that some folks have tendon rupture from AI. I’m going to take a vacation from AI which may be permanent. My oncologist is useless. She always seems surprised at side effects! Isn’t it her job to know this stuff? They have such tunnel vision – it may generally keep cancer away (who knows whether you ever would have gotten it?) but it kills you in a different slower but more likely way. It ticks me off that no one seems to care about side effects.

        1. change your oncologist. They enjoy making patients feel stupid. I had one who has been in the USA over 30 years. She still cannot speak English very well and i find myself trying to figure out what she said, as I drive back home. I changed to another oncologist.

          1. Ha! My oncologist laughed and said OH it couldn’t be that bad! The brain fog is making me crazy…I can’t find words, I forget appointments, (which never befor happened), hand, wrist, elbow pain, now the legs are hurting. I worked out at a gym almost everyday my whole life. If I didn’t have a wonderful dog I probably wouldn’t bother to walk anymore. Partial mastectomy March of 2019 followed by radiation for 6 weeks the radiation was awful, always tired. Started on anostrozole and the joint/bone pain was bad. Even my facial bones and teeth hurt. After laughing at me she switched me to exemastane. Now my hair is falling out and the pain is more muscular than bone pain although my hand and wrist bone still ache. I think most of this is a racket, pharma, big med, and insurance. I will give it until the end of the year and then no more. Thank you so much for this blog, and good luck Ladies, it is nice to know there is company and i’m not nuts!

  6. I failed to mention the ANXIETY and MOOD SWINGS and INSOMNIA were intolerable as well. So I have the Nero part of me back since I quit the Aremidix but I still have all the rest. I’ve detoxed, detoxed, detoxed…. oh and no matter what I eat I have constipation and bloating. I cannot believe how this drug wrecked my life!

  7. I have found no articles or comments about taking lesser dosages of AIs. I would think this is an option. Maybe some people are being overdosed. Apparently everyone is prescribed the same AI dosage, whether they are 6′ and 300 pounds or 5’1 and 100. Are body weight and size related to the side effects?
    After trying two AI and feeling miserable, I decided to stop. I was bi, Stage 1 and Stage 0, ER and PR Pos, HR neg, Onc 11. Had radiation. My radiation oncologist didn’t think it was a bad decision, but my medical oncologist felt I should try tamoxifen. Then I read how it effects cognitive function more than AIs, among other things. Being 76, and already having trouble concentrating and forgetting words, I did not want to go that route. Also, with advancing age, there are a lot of other things coming down the pike.
    The wife of a friend of my husband had decided to forgo chemo and AI, and went for some Chinese mushroom soup therapy. Her cancer has spread throughout her body in about 3-4 years. I pointed out that she had stage 3 cancer, but my husband is nervous and wanted me to go back on the pills.
    I had already tried 1/2 every day, with problems. So I have decided to try a half every other day so that I don’t have to spend my life with depression, weakness and insomnia. There is not a lot going on in my life, so I can tolerate down days, as long as they are not my total life. My reasoning is that some reduction in estrogen is better than none. I also try to exercise, eat well, and have more cruciferous veggies and shitake mushrooms. I have lost ten pounds, and hope to lose some more.
    The problem is that we are not relying on an exact science, but statistics. The cancer math tells me that without AI, my chance of dying from cancer is 1 or 2% higher than if I take the pills. (Actual, not relative percentage.) You can take the pills and still die of cancer, albeit a slightly lower chance. They are improving on the ability to assess the aggressiveness of the cancer, but it is still a roll of the dice in the end, sometimes with the odds more in your favor.

    1. right now i’m going every other day, with that little white pill…. no change in my hands but its only been a short time. I’m going to quit the pill at 2 years and really log the walking miles…. I can’t give up meat and chicken and pork that’s not going to happen…. all are days are numbered, I just want a full life…. i’m almost 60….. did the double mast. and had no node involvement….. I have retired that was a huge stress, I think the white pill is going to go by by….. fight on all my friends….

  8. I tried the lower dose, but still had side effects. I decided to just forget about the pills for now.
    My radiation oncologist is running a fitness program for cancer patients, which I have joined. So far we have had just two meetings, so nothing much to report about it.

  9. So glad to find this. I, too, was prescribed Arimidex following lumpectomy and radiation tx. Took for approx. 3 months and could not tolerate at all. Could hardly get out of bed. I am a nurse, I work 12 hour shifts and spend most of that on my feet. Had leg pain, back pain, ribs hurt, hot flashes were constant, not really “flash” but continuous…no energy but couldn’t sleep. I stopped taking and felt better after about 3 weeks. It has been a little over 2 months since I stopped taking it. My doctor wants me to start the aromasin and try that but I am afraid…I am 59 but I felt like 100. I am not sure what to do….but I am glad that there are other people who feel the same, and it is not in my head. I feel like my Oncologist is just saying well, this is what you have to take and that’s the end of it.
    Thanks for letting me vent.

    1. Denice, I too am glad to fine this information. I have a lumpectomy on left breast April 2018followed by 20 dosesof radiation. I am a nurse work 12 hour shifts. I am also 59 looking at working 2 1/2 years more. I lived With the 6 months of aches and real pain daily. The breaking point for me was my left thumb swelled up and became unusable. I am right handed but worried it I would start having the same thing happen to that hand. I first thought I slept on my hand. Took me four days of extreme pain and no mobility in my thumb to decide to stop taking the drug. After two weeks my thumb is about 70/ improved. I called my oncolist and asked for RA referral and PT/OT therapy out patient which they did referrals. They told me to take a “medication holiday”. In a month to try another medication.

      1. Screw them, the ones who have so many suggestions. They won’t understand how difficult life is with their miracle drugs until one day, they too get sick and are told they have breast cancer. Oh yeAH SURE. nOW GO TELL YOURSELF HOW TO GET USED TO ALL THE CRAP.(tO THE DOCTOR)

    2. I am 77. Had the same as you. I have been on Arimidex for 6 months. The last month I have had severe pain in my hip and upper theogony. It started with pain but now I can’t even walk without severe pain. I felt so good before this pill.
      Thank you for making me know I am not crazy.

  10. I’m so glad to find this! I am actually going through fertility treatments and the fertility docs have put me on Letrozole. I already have acid reflux pretty bad and I felt much worse in the few days (5) that I was on this medicine. Also, the overall light headed and groggy feeling and aches and pains made me just want to hibernate! I would like to detox my body from this drug as soon as possible, but not finding a lot of information for this one specifically. Any ideas or suggestions on what would be a good start? Thanks so much in advance!

  11. I have been on hormon blockers for almost one year. I started out with letrozole. I was on it for 7 months and started to itch every night after I took my pill. My doctor switched me to Arimidex. I have on it since December. I have horrible acid reflux which wakes me up.

    1. Though I’m sorry you have had itching, I am relieved to hear your experiences. I too have had horrible itching and breaking out in hives, and my lips swelled up as if I’d been punched in the mouth. I was on Anastrozole for about 4 months when the itching and swelling started; my doctor switched me to tomoxifin about 6 weeks ago, I still have some itching and hives-but it’s better than the Anastrozole. I stopped taking anything for about a week when I had out of town family here for a visit, and I felt like my old self again! I’m sure starting and stopping isn’t a good idea; after all it’s the estrogen that ‘feeds’ the cancer cells and fluxuating levels by not taking the pills can’t possibly be a positive for us. I’m learning to live with it, and ways to make it more manageable by taking Zyrtec and lots of anti-itch creams and lotions. Bottom line… it’s just another reason that this damn cancer is not for the faint hearted!

  12. Thank you all for sharing. It’s so important to have a forum where we can speak openly and honestly and where we are heard. I had a breast cancer recurrence in Jan 2018, 16 years after first experience (chemo/mastectomy, radiation) and on the road with 2 surgeries, 2 different chemos (CMF and taxol) and then 6 weeks of radiation for the recurrence. Thought I had enough side effects from them until I started reading about the AIs. I was not going to take it, but my cancer was so strongly estrogen positive that I knew I had to try to prevent a recurrence if I could. But, I told my oncologist that it was also about my QoL. He had me start taking fish oil, turmeric curcumin, recommended melatonin and I also started myself on Vit B complex. He also had me “ramp up” on letrozole. 1 month at 1x/week, then 1 month at 2x/week, then 1 month at 3x/week (M/W/F). If I could tolerate the 3x/week, I was to go to every day and see how I did. If side effects got worse, he said to drop it back to 3x/week. I am at end of my 3rd month and will be ramping up to every day. So far I am abe to tolerate, except I do get some leg cramps at night, my joints get stiff, and my knees are terrible. Feel like 80 instead of 56. I am very fortunate as I have retired, so mentally, I am ok and not heavily stressed with work. I don’t think I would be able to take doing the work I had to do. I can only do so much at one time. I am “fatigued” from a physical and mental perspective. I have pushed myself and started exercising more – yoga, pilates and walking – and generally feel “ok”. I have put on 20 pounds which shocked me, so now really watching what I take, which has caused me to start eating a lot better and so far I have dropped 5 pounds. I am not sure the vitamins help, but will stay on them and I KNOW the melatonin (3 mg) has helped me with falling asleep. In fact, I probably sleep more than what people think is good – 9 hours a night. I realize that 3 months is still quite early, but I will see where this takes me. My dear hubby is also “watching for signs” and said he would be honest with me if he felt I needed to stop. For what it is worth, there is an article published in 2015 regarding the dose of letrozole. Interesting. Some of you may want to talk to your doctors about dose. Good luck everyone. Prayers for long, happy and healthy lives.

    1. Just wondering how you are doing. I have also had lots of joint pain with my ai. I also found that 2015 study regarding the alternate dosing. I am kind of doing the 3 times a week. I would like to go lower like maybe cutting pills in half. Anyways I really would like to know how you are doing and on what regimen you are following.

  13. I am coming up on three years post unilateral mastectomy for Stage I, grade 2 invasive ductal carcinoma. Three widely dispersed tumors. Two sentinel nodes were biopsied and were clear. No reconstruction. My oncotype score was “0,” a number my oncologist had never experienced before. At the determined and threatening insistence of my woman oncologist, I tried Tamoxifen for four months, along with Gabapentin to ameliorate the hot flashes. I had had very strong reservations based on my sister’s experience with five years of Tamoxifen and five years of Femara. She would still tell you they ruined her life (19 years out, now). In those four months, I had severe thinning of my vaginal walls, urinary incontinence, vaginal bleeding, thickening of my uterine wall (9 mm), bladder prolapse to the opening of my vagina, rectal prolapse, difficulty retrieving thoughts, words, ideas as if I were aphasiac from a stroke, blurred vision, slowed reaction time while driving a car, severely affected libido, hair loss, heart pounding vasodilation six times per night, and suicidal thoughts about ten times a day. I would not have said I was depressed; I just saw almost everything around me in terms of how successfully it could end my life — tall trees, ropes and bungee cords, highway overpasses, steep slopes by the side of country roads, cold rushing rivers and tides, pawn shops. I had a 3 cm polyp prolapse through my cervix. My oncologist discounted my symptoms as normal side effects, until the prevalent suicidal thoughts. Before that, she said most of the effects (I was 61) were just part of the normal aging process and having given birth. I was 14 years post menopause at the time and had had no symptoms before Tamoxifen. I left the oncologist’s care, asked my surgeon to be my follow up provider, and warned all of my physicians that discounting my very strong feelings about my treatment, my side effects, or my pain were triggers for memories of childhood molestation. I started exercising fiendishly, stopped all meds, and started a new business in retirement. I experience intermittent and unpredictable PTSD during January and February as I approach my annual re-check — inexplicable crying, nightmares, anxious dreams, intrusive thoughts while trying to fall asleep, depression, reluctance to go to bed. So far, the PTSD has cleared with the arrival of concrete news from the annual check and with the arrival of spring temperatures, more sunshine, apple blossoms in the yard, and the promise of another year without thinking directly about it. I guess a trial run of Tamoxifen was useful in proving how damaging it was to my body, and it got my brain’s attention, for sure. Some side effects resolved (vision, hair loss, suicidal thoughts, uterine wall thickening) but some have remained constant — prolapses, vasodilation at night that awakens me four times a night, frequent urination. At this time of year, I find it helpful to share my story and to read others’ stories. I am so grateful to have found this site. Blessings, strength, and endurance to all —

    1. Thank you for sharing. I was only able to tolerate tamoxiphen for a month. I too experienced the severe depression, flattened affect and profound fatigue. My knees swelled and it exacerbated lymph edema. They only started listening when I said I have lost interest in life. One week after stopping it my happy returned, the fatigue is lessened and all edema is virtually gone. I will remain “toxinfen” free going forward. How do women tolerate this? 40 year old drug? No alternative in 40 years? I’m speechless! Shame on the industry for this, 40 years and nothing better nor improved.
      Take care! I wish all of you well, I just can’t do it.

  14. Hello. I started off with Arimidex and then changed to Aromasin. ARIMIDEX Was awful. All the probems that have been previously described and especially the dryness. I am estrogen positive, and second time cancer, so I had my ovaries out as well as, my left breast removed. I was stage 0/1 cancer lumpectomy, and radiation. Same breast stage(1) mastectomy on left breast. No reconstruction. I took Arimidex for two months or so before I changed to Arominson. So far I have been taking this for around 2 years. More severe side effects in the last few months or so. Thinning vaginal walls, as well as, uncomfortable using the bathroom just to urinate. ( lots of times using the drug that turns your urine a reddish color ( similiar to AZO but more powerful). Going to oncologist Friday the 22 of February. Planning on asking her plenty of questions, and what happens if I stop the pill totally. I have joint pain especially in my hands: but tolerable considering the other. Just hoping that there might be a better alternative. Hopefully, I can have some news that can help us all. Thanks for reading. Prayers for us all

  15. I just finished a 3 week break off of Anastrazole … After 5 months on it and thru 6 weeks of radiation the bone pain was severe ..not to mention the hair thinning , dry skin and all the rest of the side effects .. During the 3 weeks off my bone pain is almost gone , I feel like the brain fog is gone ( I did not have chemo ) but now I have to start on Aromasin tomorrow … I picked up the rx today but battling with myself to take it… I’m 67 years old .. I’ve always been very active in the past and enjoyed fun times with my husband , family and grandkids, but these pills greatly affected my quality of life .. I will start these pills tomorrow but I don’t have alot of hope that the side effects will be any easier … Cancer itself is a crappy hand of cards to be dealt to begin with but continuing these for 5-10 years … I don’t know …

    1. So glad to have found this site. Breast cancer twice 2015 and 2016. Chemo and rads first time, Rads second time, after botched invasive diagnostic procedure. Tried ‘em all, Letrozole, Tamoxifen, Aromasin and now, Anastrozole. All intolerable side effects. Came off Anastrozole December last year (my choice) Started taking last week, absolutely rubbish side effects, going to try taking a tablet once every 3 days. Methinks quality of life over quantity! Ps my mum lived for 34 years after her breast cancer WITHOUT ANY medication. Pause for thought?! This is a brilliant forum for expressing feelings and experiences. Big love to all bc survivors

      1. Hey Ladies. This site has been so helpful. I was diagnosed last year at the age of 63, Stage 1 no lymph nodes ER+, PR+ Her2-, 1 cm, and I had a double mastectomy in June. I was surprised my Ocn score was 24, but no chemo per Oncologist BUT of course, an AI (Letrozole). I really resisted and researched, and every Medical opinion was to take it. In the meantime, 2 friends had recurrences after over 10 years, both had similar original diagnoses, and they had NOT taken the AI’s due to side effects. So I caved in and started first of February taking the meds. Using a lot of supplements to help with the joint and muscle pain, exercising, etc. For the first time in my life I am so “blue”. It’s a struggle to want to do anything. I have to really push myself. I just had bloodwork for my thyroid and my cholesterol has really taken a jump (I eat clean and really watch it) plus have gained 15 pounds since my surgery last June. What is so confusing to me is the scoring websites (Predict Breast and for recurrence show very little increase in percentage of survival with the meds vs. no meds. So if that is the case, why does every medical person act like hormonal therapy is the main thing that keeps survival down. I am having to weigh the definite side effects against the benefits for sure.

        1. I have found weight watchers helped me. Weight loss was slow, but no weight gain & I eat healthier. Also take b-12, cbd oil & meditate for anxiety, colace & miralax for constipation. I am not a doctor & not recommending anything here. I did ask my oncology meds doctor before taking cbd oil & rogaine for thinning hair. I tell people who stress me to stop or speak lower & most people around me have reset. I run my own business and it can be stressful. I delegate where i never did before too. I have made changes to my life & will continue to accommodate the anastrozole. Good luck to all & keep fighting! Never give up! (Sorry for those having such a hard time.). Just wanted to add my thoughts for what they are worth. I’m not saying that those of you who cant tolerate anastrozole arent valid. I’m just saying I took a different approach & hope it helps some ladies. I have had most if the symptoms you all describe.

    2. Please let me know how you do on the new medication. My joint pain has gone from achy to unbearable in the last two weeks. Prayers for you.

  16. I had a 1cm grade 1 invasive ducal carcinoma in 2003, a lumpectomy , re-excision for clean margins followed by four rounds of A/C chemo and 28 rounds of radiation. I was burnt badly by the radiation. I had jelly bean size blisters on the top of my breast and the skin underneath sloughed off, yellow and oozing! I felt I had breast cancer treatment overload and refused tamoxifen and AI.
    I thought after 15 1/2 years cancer free I was cured but in December I found out I had a 1.3 cm invasive lobular carcinoma, grade 2 in the same breast! I should mention I felt pain deep in my breast for several months and told my gynecologist about it. She ordered a diagnostic mammogram. Nothing showed up on the mammogram so they did an ultrasound and they found an area of suspicion that I was told should be biopsied. The entire time I was sure it was not cancer because I was always told breast cancer doesn’t cause pain! I had a mastectomy with DIEP reconstruction in January. I am almost 9 weeks post surgery and still have three open circular wounds on my breast that are very slow to heal! I am still out on disability. My medical oncologist wants me to start Letrozole at the end of this month but I think I will skip the AI! Quality of life is more important to me than quantity. My oncotypeDX score was 21. I am post menopausal but I can’t afford to retire anytime soon and my job requires me to be on my feet all day. I have joint replacements and I am not willing to suffer for a hypothetical reason. I don’t even know if I will be alive in 5-10 years, but I read that AI’s don’t change survival rate. Ultimately I am the one who must live with the consequences of my decisions.
    Personally I am angry that this is the best the research can do! By the way, my thought is that most side effects are from lack of estrogen, not the AI, which is what the AI is supposed to do. Women deserve effective treatment that doesn’t have such horrific side effects!

    1. By the way, i had great pain the month before I found my grain of rice in my breast………
      i’m going to try the every other day Anastrozole, see if my hands feel any better….. all the heart reports and other problems, Ugg…. I had a double mast. no node involvement….. I think i’m just going to roll the dice. when I got the BC work was horrible … now I have no work retired…. it took 58 years to get a hit, maybe it will take another 58 years…. Take Care

  17. I was on anastrozole for about 5 months before I simply could not do it anymore. I then started taking Letrozole and within a week began having suicidal thoughts. I quit taking it over a weekend and when I started it again I had the same result. My oncologist said the risks outweigh the benefits and I can no longer be treated with estrogen therapy. I don’t know what my future is but I prefer to truly live for 2 years than suffer for 5.

    1. Hi Rebecca, I am sorry to hear about your struggles. I had trouble with Anastrozole at first, but my Dr. put me on Effexor XR. I took 37.5 mgs at first and then up to 75mg. The first 48 hours was rough, but I have taken both together for nearly 9 years. I don’t think I could have done the Anastrozole long term without the Effexor.
      It might be worth a discussion with your Dr. BTW, I take mine together in the morning. Note, I do have wild and crazy dreams, but if that is all I have to complain about then I am happy.

  18. Wow! Ladies, I am so happy to have found this site. I am a breast cancer survivor like the rest of you. I was diagnosed at 47yrs old with Invasive Ductal Carcinoma. No lymph nodes. I had a mastectomy and chemotherapy and then put on Anastrazole (Arimidex) I have been taking this med for nearly 9 years. In the beginning I was suffering from depression and mood swings, and many of the side effects mentioned about. My Dr. put me on Effexor XR to counter balance these symtoms. I had to ramp up at one point to 150mg to keep things going well. Over-time I asked to try and scale back onthe Effexor (Venlafaxine) as I was worried about taking a drug this strong for so long. My husband swears he can smell the medications on my skin. I am now taking 75mg per day which seems to be the magic number. When I tried to go to 37.5 I felt very foggy, moody, unhappy, etc. so back up to 75mg. I still have many of the stymptoms you report although have determined I can live with them as they are not severe enough to want to stop the Arimidex. I have considered it my insurance against reoccurrence. My mom and I both had cancer at the same time. Her’s came back after 5 years and she is no longer with us. My biggest saddness about the effects of this drug is my total loss of libido. My hubby and I haven’t been sexually active for several years now because it is painful for me. He is super supportive as we have been married over 30 years and he said he doesn’t want to take any chances of losing me. His own sister passed from breast cancer at 42. I am writing today because after nearly 9 years of taking Anastrazole, I have new symtoms of severe pain in my pelvic area (right side) and my sacrum on the left side. Both are extreme enough that I have had to take Vicodin to get through the day. I had a nuclear bone scan on my hip back in September and an exray of same hip/pelvis last month. Nothing shows a fracture, tear of any sign of cancer. Last week my Dr. suggested that maybe these new severe pains were a latent symptom from taking Anastrozole. She suggested that i stop taking it immediately and wait a week. If no change she will order an MRI, if better then we will assume it was the cause.
    After 4 days, I have to say that the sacrum pain and pelvic pain have subsided substantially. I haven’t taken any pain meds for two days. On the other hand I have been feeling blue and having diarrhea. I have also had a headache, but that my be just a cold. I am still on the Effexor and will try to taper off once we decide about the Arimidex for sure. Thanks for all your comments. It is nice to feel I am not alone with all of this

    1. After 9 days off Arimidex I a am feeling like I am having withdrawal symptoms. Has anyone else experienced withdrawal symptoms when stopping arimidex?

    2. Your husband is right, there is a smell. I couldn’t put my finger on it when I first started to smell it. We changed our washing liquid, creams, everything. I think it was worse in bed, we changed sheet every other dayish, what with hot flushes an sweating. My poor girlfriend would be wringing wet. It’s just not fair what your all going through.

  19. Well by the name you know I’m a man 🙂
    Our storey,
    My girlfriend and I were together for 9 years. When we met I was 53 she was 42. We met on a dating site, and our first date was at the cinema, I saw her from a distance, she was at a cash point carrying a semi see through plastic bag with something square inside covered in foil, I thought wow lucky me my first ever internet date and I’ve got 3 bells and a pressy. I walked over to her, tapped her on the shoulder and said “ hi gorgeous I’m Paul and I’m bricking it haha” anyway we made it into the cinema, sat down were she then presented me with the plastic bag, saying you don’t have to eat it now but feel free to if you want. It was a banana cake and yes it got demolished before the film ended. From that time on we were joined at the hip.
    For 7 years we had the best fun ever, we bought a house in Spain where we escaped the UK winter, we are bikers both types pedal power and petrol power. My daughter had a baby which my girlfriend loved to bits, our lives were perfect until.
    While in Spain at Xmas time 2015 we noticed a small pea sized lump in her right breast. We didn’t panic, as it was so small and quite hard to find without being quite rough trying to find it, our first thoughts were, it was just normal tissue or at worst a cyst.
    In June 2016 we came back to the UK and made a immediate doctors appointment.
    I won’t bother going through the procedures and anguish we went through as you all have been there.
    It turned out to be a 10 mm cancer but thankfully not detected elsewhere.
    Treatment was a lumpectomy, radio and Anastrozole for 5 years. We then put the cancer to bed and focused on the dreaded drug. At the beginning things were fine. For the first year we carried on as normal. We still made love, we both finished if you know what I mean. The dryness wasn’t a problem there’s ways around that. Her hair was falling out a lot, we had wooden floors and her blonde hair showed up everywhere, I just picked it up no probs. I think the hardest thing she found coping with were the constant night time flushes and insomnia. I recon she read a book every other night while I irritantly snored my head off.
    Going into the second year of the demon drug things were taking a nose dive sort of overnight. My lover and best mate ! I became her enemy. I tried, we tried. It destroyed her and us. We’ve parted, I wanted to hold her in my arms through the nightmare. I love her to bits. She won’t speak to me, her narssasit daughter sends me hate mail and says her mother isn’t experiencing any side effects whatsoever! I can’t bare thinking of what she’s going through, plus 3 more f******g years of it.
    There must be another way. Sorry I ranted a bit, it’s not about me I know, but I’m in bits too.

    1. Paul – Has your girlfriend used the predict tool?
      In 2013 I was told I should do 5 years of Ai. I suffered every side effect with the dreaded Anastrozole for 1 year and then even more with Letrozole for the next 2 years but when, in 2016, my oncologist told me that research now said I should stay 10 years on the drugs I wondered if I was actually being used as a guinea-pig for statistical analysis. I did a HUGE amount of reading into the subject, found the Predict Tool, entered my pathology details and discovered that the difference for me between taking the drugs and not taking the drugs would enable me to live until 86 instead of 85. I double checked this with my oncologist and then explained that I would prefer to stop taking the drugs. He said that would be fine and I would still have my annual check for reassurance that I am Ok. Within weeks I felt so much better. You are both having a traumatic time so it will help if you both take some control of the situation – eat a healthy diet, follow an exercise regimen, make quality time together that does not rely on the demands of sex but just enjoying each others company. And definitely do some research into the effects (benefits & otherwise of Ai) Put her pathology provided by the hospital into the Predict tool and make informed decisions about the way forward. All good wishes.

      1. Hi, thanks for replying. I will suggest this to her but won’t hold my breath. She is a teacher and has a inbuilt thing that, what she says to her pupils is gospel. Therefore what the oncologist says to her is gospel too, and they have advised her to do the full 5 years. Personally I don’t think they care about the side effects, they just look upon the drug as a treatment.
        I have 2 close mates, both their wife’s have breast cancer. One was on tamoxifen for 5 years, she endured those 5 years of grief from it. Three months after she stopped taking it she was dead. This drug doesn’t stop it migrating to other organ. I don’t know her full storey and neither does my mate, her husband, as we think she kept lots it to herself.
        My other mate, his wife found a lump Sept, 18. At first they said it was 10mm, I believe from ultra sound. Then on mamo it was revised to 25mm. She had a mastectomy they also found it in lymph. The treatments were for chemotherapy and tamoxifen for 10 years. She declined the chemotherapy and opted for radio. She is 3 months into the tamoxifen, I hope she took the correct choice. She is a paramedic helping people all her life, there’s no rules in this world.
        Getting back to my girlfriend, as you suggested, we were doing all that. No red meat, just fish chicken. She is also coeliac, so we both had not wheat. We ate a variety of veg and loads of fruits. We are also fitness conscious, long walks and cycling. I also took on board that her libido was diminishing to almost nil and never demanded or even tried anything, I can deal with my urges easily! really all I wanted was a cuddle, but that wasn’t really on either. I don’t think she was bothered, plus I seemed to bring on one of her flushes within 10 seconds of cuddling.
        I will send her that link, whether she takes any notice I doubt, especially the one year life expectancy gain.

        1. Paul,
          I am so sorry to hear that your girlfriend’s cancer and treatment have led to your breakup.

          I can understand how that can happen—the medication can be pretty miserable and the side effects and stress can literally change a woman’s personality (at least it did for me).

          I was interested to hear that your touch caused an immediate hot flash in your girlfriend. I thought I was the only one that happened to. It started after being on Letrozol for a year. I went off of it after six years and continued to have those hot flashes for another year. Miserable.

          Good luck to you.

          1. Oh the touch thing is real, it happens to me all the time….. especially a touch on the back and I just flush …. its like my back catches fire….its a real thing…. Have to love the AI…..

  20. I took tamoxifen for 3 years with little side affects and then was switched to anastrazole after that. After one month the nurse called me and asked how I was doing on it, did I have any side affects. I told her I hurt all over and had turned mean! I was mean only to my hubby who has the patience of a saint. She consulted the oncologist and called me back. She said stop taking it and come in to see him. I stopped and saw the Dr the next week. He talked about other options including an monthly injection that would take approval from the insurance company. It is approved but not for adjunct treatment. (I do not remember the name of it) the Dr said it had a lot fewer side affects.
    My dr consulted with the team and they ended up recommending I not take anything. In my case, the triple positive cancer was gone after chemo when they did the surgery and pathology. I had 2 different kids of cancer and the other one that was in the other breast was estrogen negative and didn’t need the AI treatment. So, I am not on anything now and just hit 4 yrs as a survivor.
    I love that you are providing a place for women to talk, fuss and support each other.

  21. I have been on Tamoxifen (post breast cancer) for a little over 1 1/2 years now. The first 3-4 months were terrible for me and my family. I was constantly angry, constantly crying, picked fights with everyone. On top of that, wasn’t in the mood for any intimacy. Things were so bad that I started referring to tamoxifen as “the devil” My doctor said to give it a few more months and we’d re-evaluate the situation. I think prayer was the only thing that got me to the point of being stronger than the drug. Now my only issues with tamoxifen are uncontrollable weight gain and horrible foot pain. Before taking this drug, I had zero aches and pains, and now I limp around from the burning, stabbing pain in my feet. Not sure how much longer I can keep taking it….

  22. Our DS has been prescribed Arimidex by his pediatrician becuase apparently this medicine doesn’t let the bones fuse together and since ds had precocious puberty, doctor thought it was best alternative to help him gain some height. DS is 5 ft 5 in right now and doctor says expected to reach 5 ft 9 in. But my problem with the medicine is that son;s feet have been increasing a lot!! he is s a size 13 shoe! Doctor says there are no gurantees which part of the body the medicine will work on! That doesn;t make sense to me. Has anyone had similar experience with this medicine?

  23. Hello,

    At my five-year anniversary of taking Letrozole, my oncologist said it is now recommended for women to stay on it for ten years. I lasted one more year before stopping it.

    How many years are all of you taking your Aromatase inhibitors?

  24. I am terrified reading these accounts. I am 70, and I have just had surgery to remove two very small hormone receptive cancers, nothing in lymph nodes, still some pre cancerous cells to be removed, and about to start radiotherapy for 6 weeks and medication for the five years. I already am on the edge with all these symptoms, as have CFS and a range of sensitivities to all sorts of things in the environment. also insomnia, body aches and pains, and still have hot flashes sometimes esp in summer. Medication has always been a major struggle for me as am super sensitive to their chemical toxicity. The symptoms I read about here, I know I would not last a month. I actually think, I am not going to start, and am going to take my chances, increase good healthy living practices and just hope for the best. I have no financial security and no one to support me, I need to keep on working for another 5 years. I love what I do, but I have to manage my fatigue and other symptoms all the time. Imagine this horrible drug on top of that, I know I won’t be able to endure it. Very troubling. I have not found a single woman who has been able to say “I was not troubled by side effects” as it seems EVERYONE IS to some degree or other. No one seems to say either, that they settled down after a few weeks/months. If I did not have a son and daughter who I want to live for as long as possible it would be a no brainer for me, I would point blank refuse to ever take this stuff, but because of them, I am undecided what to do. Thank you all for sharing your experiences. Has anyone decided just to never even start?

    1. Marion, You might do just fine! I certainly understand your worry and skepticism. Of course, the decision to start or not is yours, but why not give your prescribed med a try?

    2. Dear Marion, I am a mere 6 years younger than you, had ER/PR+ invasive BC and had a lumpectomy for a large 4 cm tumor in June 2019. Prior to surgery I took Letrozole (Femara) for 4 months to shrink the tumor (it worked) and following surgery had radiation treatment, I am still taking the Letrozole and will happily follow the protocol (barring research that says otherwise) for the next 4 or so years. I can say without equivocation, and in response to your post, that I have not been troubled by a single side effect! Not one bit. While I do have some concerns, I have researched the AIs as much as I can and believe they are the best miracle drug available right now. Whether this is the answer or not, when I was diagnosed in January of this year (2019), I made the immediate decision to “get healthy.” I had become somewhat sedentary and lax about my diet. I immediately cut out all sugars (All of them!!) and went very low carb. I joined a gym and stared working out again. I may be one of the oldest in the gym now but I can out pace and out lift many of my younger gym mates. I changed my lifestyle as soon as I went on the AI (and read about the side effects) and I have not had any untoward effect at all. (In fact, I have never felt better despite taking a tablet of Letrozole every damn day.) I don’t intend to preach, but consider my experience and see if it may help you tolerate the drug.

  25. Marion, I am 71 and had surgery last April for hormone positive tumor with one node positive, then radiation. I lasted one week on Anastrozole in July. It made me so sick that I started reading up on all the side effects and decided it was too much for me. Quality of life is much more important to me than quantity. You’ve probably heard the saying “it’s not the years in your life, but the life in your years” and that sums up where I’m at. Someone above posted this link and it really helped put things into perspective for me.

    1. Please be aware that while the benefit of hormone therapy does not look that great in the NHS Predict model , you need to interpret the results as: out of the total deaths from BC, how many were prevented by hormone therapy.

      In my case without hormone therapy, my 10 year outcome is 2 BC-related deaths out of 100. With hormone therapy, my 10 year outcome is 1 BC-related death out of 100. This can be interpreted as hormone therapy decreasing my odds of dying from BC by 50%. The other interpretation is hormone therapy decreases the odds from 98% to 99%, which may not be that significant. Just two ways to look at the results, both equally valid.

  26. I believe I posted earlier on this subject but here’s an update. I have been on Femara (Letrozole) for almost a year now with NO SIDE EFFECTS whatsoever. Maybe my genome allows me to tolerate the drug but I also attribute my lack of all those nasty side effects to my lifestyle. I eat a very low carb/no sugar/mostly plant-based diet and avoid the processed stuff. (I still enjoy dinners out that goes outside this regimen.) I do stretch /individual yoga exercises every morning & work out every other day at the gym which includes heavy free weight/machine lifting (for my age and body type) and 20 minutes of cardio. I just turned 64 and I feel great and I would bet I am healthier than many women half my age (and can out-lift them). I had oncoplastic lumpectomy in June (2019) and radiation treatment in July-Aug (not completely on board with that decision, but did it). Is the absence of side effects from the AI due to my healthy lifestyle? I don’t know, but I would encourage all who are suffering AI effects to first cut out the carbs and sugar and then get into an exercise routine. At the time of my diagnosis I made these changes and I have never felt better. All my research points to the benefit of AI’s (for my oncotype) so I want to do everything possible to tolerate the drug.

  27. Thank you for this post. I have been struggling on Tamoxifen for almost a year now. The bone pain, back pain, hot flashes, stomach pain, anxiety, nausea, and lightheadedness are making life difficult. These symptoms seem to take turns on my body. My MO prescribed Effexor which made my pulse high and my blood pressure into stroke range. Then coming off the Effexor was awful. I am on a Tamoxifen break for 6 weeks and my body seems to be much better. I am dreading getting back on Monday. Every time I go to the MO I feel so guilty for complaining. They have to come up with a better alternative.

    1. Jen, You’re welcome. I am sorry about your pain and other discomforts. Hope things are going ok after going back on. I, too, wish there were better alternatives.

  28. So glad I found this site. Three years ago I had breast cancer in my left breast and a lumpectomy. Followed by 6 weeks of radiation. I refused any medication at that time. This summer I found another lump in the same breast. So the end of Sept. (2019) the surgeon did a mastectomy on that left breast. After finishing with her, I went to the oncologist. She prescribed Anastrozole, which I have been taking for about 2 weeks. I didn’t notice any specific side effects, until yesterday, when my urine turned red. I went to urgent care and they took a specimen to test. Their initial thought was a bladder infection, but I had no other symptoms. The Dr. said he wasn’t sure it was really blood. He was going to send it to the Quest Labs for microscopic testing. Since it’s a weekend, I won’t have the results for a couple of days. I have a feeling that these new pills has caused this. (The nurse at the Oncologist office said she hadn’t heard of this.) Has anyone else had this problem? I’m stopping these pills a few days to see if it goes away. More later…..

  29. I was just diagnosed with stage 1 invasive lobular carcinoma which hasn’t gone to the lymph nodes. I have only seen the oncologist and not the surgeon. From all my research I pretty well knew what he was going to tell me. I was already skeptical of going on an AI inhibitor, but after finding your blog and all the women’s comments I am absolutely petrified. I have been so depressed the last two weeks I don’t know where to turn. I am 69 years old and the thought of putting up with all of these horrific side effects is killing me. I just wonder if it’s better at my age to just take my chances of cancer reoccurring rather than have a miserable life for the next five years. No where have I read about chances of reoccurrence and being on an inhibitor how much that decreases your chance. I am absolutely scared to death of what’s in store for me.

    1. Good morning, Sue – I was dx in 2015. I tried to take Arimidex and held out for 5 months. It took me about that long for the side effects to go away after I stopped. I was not able to tolerate it. First – I want to ask if you have had the Oncotype Dx test done on the cancer cells? It is a very expensive test, but if your insurance does not cover it, the company/lab that does this test will work with you. I don’t believe I ended up needing to pay any part. The test looks at the cancer cells and gives you a score that predicts your chance of recurrence in 10 years. Low score – chemo will make no difference. It has saved many women from needlessly getting chemo that wouldn’t help over long haul. Second – once you have those results, ask what percent the AI inhibitor will reduce your 10 year recurrence percentage. For me, my Oncotype results were about 14% chance of recurrence in next 10 years. The AI would reduce that by 40% – or about 5.6%. I found one scholarly research article on diet and exercise that found that the combination of exercise (walking, etc.) 5 times a week combined with eating the foods known to help fight cancer reduced the recurrence percentage 5%. My decision was that I could not exercise and eat right with the side effects of the AI, but could do both without the AI. I will be 5 years out in March 2020. I am not perfect in my diet or exercise, but that’s my goal. I also take Vit D with K2, and DIM – both to help with ca prevention. God bless you as you struggle with tough decisions. Only you can decide what is best for you. I pray you can see light through what may feel like a dark tunnel right now, and enjoy this holiday season knowing that you are not alone, and that because you also have been dx what seems to be early – we can now count our years in “bonus” years. I just turned 60 – my 5th bonus year. 🙂

      1. Hello Beth! Your story is so much like mine (my post is below) and yes, I also take Dim (Nature’s Way – Dim Plus). Thank you for adding that, because my oncologist feels that it might be a factor in my good tumor marker results. I also had the Oncotype DX test (I did have to pay some) and it told me my chances of recurrence were also slight – around 8%. So the AI’s went in the trash. You gave some great insight and information in your post that I think really helps. Hugs! Gaye

        1. Thank you, Gaye. I am so happy that you are also just about to your 5 years! Information and decisions were so overwhelming for me – even as a nurse. I think one of the biggest things for me was to realize I had time to think and make decisions – it was not an emergency even tho it felt like one! Have a wonderful holiday season.

          1. Hello Beth! Have a wonderful holiday season too! Oddly, when I was diagnosed, they wanted to rush me into surgery immediately. We had a vacation planned for two weeks out and I said, nope, I’m going on my vacation and I’m going to enjoy it. They were horrified and thought I was insane to wait. It was definitely not a life and death emergency and we had a great time. We DO have to be our own advocates.

    2. My mother in law has been on an AI for the last 5 years. She has had no side effects at all. She is 87.
      From everything I’ve read, it’s often not as bad if you’re well past menopause. Many women have no issues, so they’re not the ones commenting on posts like this. In your shoes (and I’ve been on two different AI’s for nearly 5 years), I’d try it. If the side effects are intolerable, stop. But you won’t know until you try.

      1. Sue and Cathy – This is good advice. That is why I did try to tolerate the AI, and my mind is settled that I did what I could. Had I tolerated it with little side effects, or had it made a much larger reduction in my recurrence chances, I probably would have continued. (And my side effects did resolve in time.)

    3. Hi, Sue!
      I had side effects from the AI’s, but took them for nearly 4 years until I finally said enough is enough. I then switched to the old standby medication of Tamoxifen, which caused me to develop clots in my leg, so I had to stop taking that. I have not taken any breast cancer meds for 2 years now. I worry some about recurrence, although my chances for recurrence are small. By now I no longer think about recurrence every day. If it happens I will deal with it then.
      Ask your medical oncologist to give you some articles on the odds of recurrence taking and not taking the AI’s. You can call ahead of your appointment to ask his/her nurse to get those articles ready for when you go in for your appointment. Then take your time making your decision.
      Breast cancer is a scary thing. With help from your family, family, friends and treatment team you will need to make your own decision and do what’s best for you. Just so you know, not everybody has side effects from the AI’s I have a dear friend that took the AI’s for 5 years and did not have even one side effect!! So, even though many of us do have the side effects, many don’t! You can at least give it a try, but talk with your doctors ahead of time to have a “plan B”.
      Try to continue to get some regular exercise once you start the AI’s, eat as healthily as possible. Do lots of things that make you happy. Take care of yourself and don’t feel selfish about it!
      I was diagnosed 6 years ago. I am still here and have no evidence of further cancer. I do an annual mammogram and an annual visit to the oncologist. I feel fortunate and am grateful I am getting a chance to see my 3 granddaughters grow up.
      Keep following this group as many share ideas of what has worked for them, how to deal with some of the feelings and emotions we experience, but remember we are all individuals and learn different ways to cope with any issues that may arise.
      Keep us posted on how you are doing!

  30. I completely understand your fear. I chose not to take the AI medication, actually more like refused. I also had Stage One that did not go to the lymph nodes. For me the decision was about quality of life for me. I am currently taking a medication called toremifene. Instead of eliminating your estrogen it blocks the signal from the estrogen to the cancer. I have had not one side effect form this drug. It was actually my breast surgeon who suggested it. I have been on it for three years and I am doing fine. Please don’t let any doctor scare you into taking any medication that you are not comfortable with. The side effects of the AI are real and usually ignored by the doctors. There are other drug options. If your oncologist will not work with you to make a decision that you can live with then get another doctor. I am a huge supporter of being your own advocate. Educate yourself so you can make an informed decision not one out of fear. I wish you the best. If you would like to talk more about this just reach out. This site was a huge support for me.

  31. Hello Sue – I was diagnosed the same back in May of 2015. Stage 1 – no lymph node involvement. I chose mastectomy with reconstruction. My oncologist (which was a woman) was a total jerk. (I had been on bio-identical hormone replacement therapy up to that point.) She told me I basically gave myself cancer with that and I HAD to do the AI’s. So I started it and had terrible side effects almost immediately. I changed oncologists (another woman) to see if there was something better. Tried another one – same story and again bad side effects. I was 63 at the time and already had my share of aches and pains just from age. Someone recommended another oncologist (a man) who was much more proactive and kind. I told him that I was having such a problem with the AI’s and personally, I thought it was overkill considering there was no lymph node involvement and the mastectomy took everything. (Yes, I know there could still be those cancer cells out there.) But we discussed my chances of reoccurrence, which were small and he was on board with me choosing not to take them anymore. Yeah, I was afraid, but my quality of life was suffering and I was pretty much a newlywed at that point. I was becoming a monster from anger, pain and just all around feeling like crap. So here I am – 4 and 1/2 years out. No AI’s and my tumor markers have remained in the 3-4 range which is excellent. Next May is year 5 and my oncologist said he still supports my choice. So here I am at 67 and so far so good. This is just my story and I’m glad I did what I did. Had there been lymph node involvement, I think I would have probably kept on the AI’s. I don’t know. So my suggestion is to really have a heart to heart with your oncologist. Good luck on your surgery and all of the choices you make with this. Only you can make this decision. Hugs!!!

  32. Hi! I took the aromatase inhibitors for over 4 years, then switched to Tamoxifen as the side effects of the AI’s was just too much (had tried 3 different ones). Then I got blood clots in my leg from the Tamoxifen!! Anyway, my question is, how long does it take for the muscle pain to go away after stopping the AI’s? I have been off for nearly to 2 years now and still have a lot of pain. Crazy!!
    Anything anyone found helpful to get rid of this pain?
    Thank you!

  33. I go in for surgery Wednesday. I had previously commented how scared I was to go on the AI inhibitors. Now I have another issue that I can’t wrap my head around. I had breast implants 37 years ago not because I wanted bigger boobs. I just wanted boobs. I couldn’t fill out an A cup. I have been to two plastic surgeons ( one female and one male) and they both advise against replacing them. I will spare you the details, too long a story. I have cried, and cried for weeks. The thought of going back to being flat chested again is terrifying and depressing. I am not prepared for that first time I see myself in the mirror after surgery. I have been down a rabbit hole for so long that I need some encouraging words to dig myself out of that hole. Any uplifting advice or kind words would be a godsend.

    1. Sue, I want to just give you a hug. I don’t know how old you are but I’ve found boobs do not measure the woman or femininity or beauty and the only people that care are boys in their 20’s. And boys in their 20’s are stupid, remember ;-). When I did reconstruction from multiple lumpectomies I told the surgeon to put things back where they were when i was 20! I ended up much smaller than expected due to scar tissue (smaller than A cup for bras lol) but I love every minute of my tiny boobs. No more bras for me. I wear cami’s if needed but mostly nothing but a shirt and I couldn’t be happier and feel more free and comfortable having eliminated the D plus saggy boobs I had and that elastic contraption I couldn’t wait to take off at the end of every day. I look at is one of the super positive thing that came out of BC. Embrace your small boobs girl, now you can wear any type of clothing any time or go braless. BC insurance is required to give you prosthetics is you want so if ya need them big for an event or outfit grab a set of those. I in no way mean to be dismissive. I’m sorry this is upsetting to you but all things in perspective. You will conquer this and be more powerful in the end as so many of us become.

    2. You can always consult with more plastic surgeons. The first two may agree with each other, but what if the next two disagree with the first two? Every doctor has a unique perspective from their training, experience, mindset, etc. I encourage you to make the rounds and see if there is consensus.

    3. Hi, Sue – Oh, I am so very sorry for what you are going through! So easy to say and hard to do… but try to take this in steps. This week you are doing what needs to be done right now to remove the cancer. That takes tremendous courage and strength. You have been dealing with so many emotions and hard decisions that have put so much stress on you. And it’s ok to cry and grieve now. One thing my surgeon did that I really appreciated – was to use a pretty post-op black bra to hold the dressings/drains in place. When I saw it I just cried because it wasn’t the horrible first look I had anticipated. Underneath, I was definitely pretty flat and not ‘me’ – but, somehow that pretty bra just helped. Here is the link if you are interested.
      Then, after surgery, can you research other possible options? I was given 2 options, implants or a DIEP flap. Basically, they would have taken/transposed stomach skin and fat tissue to create new breasts. (I was told this DIEP flap was possible to do later even if I choose implants now.) I don’t know if this would be an option for you?
      Whether there are other reconstruction options or not, you will continue to be an amazing, strong, courageous woman. I will put you on my calendar to pray for your surgery this Wednesday – and for extra courage, strength, peace – and pockets of joy this week and as you continue to heal. God can bring ‘beauty from ashes,’ and I pray that for you. Hugs, Beth W.

    4. If you decided to take the AIs, know that there are some options for managing side effects. There was a very well designed “gold-standard” clinical trial that established that acupuncture reduced joint pain better than sham acupuncture (placebo) or no acupuncture.

      Acupuncture Reduced Joint Pain Caused by Aromatase Inhibitor Treatment
      in a Randomized, Phase III Clinical Trial

      Acupuncture significantly reduced joint pain for postmenopausal women with early-stage breast cancer receiving treatment with an aromatase inhibitor compared with both sham acupuncture and no treatment, according to data from the randomized, phase III SWOG S1200 clinical trial presented at the 2017 San Antonio Breast Cancer Symposium, held Dec. 5–9.

      Wishing you well for your surgery this week.

    5. Hi, Sue – Oh, I am so very sorry for what you are going through! So easy to say and hard to do… but try to take this in steps. This week you are doing what needs to be done right now to remove the cancer. That takes tremendous courage and strength. You have been dealing with so many emotions and hard decisions that have put so much stress on you. And it’s ok to cry and grieve now. (One thing my surgeon did that I really appreciated – was to use a pretty post-op black bra to hold the dressings/drains in place. When I saw it I just cried because it wasn’t the horrible first look I had anticipated. Underneath, I was definitely pretty flat and not ‘me’ – but, somehow that pretty bra just helped.) Then, after surgery, can you research other possible options? I was given 2 options, implants or a DIEP flap. Basically, they would have taken/transposed stomach skin and fat tissue to create new breasts. (I was told this DIEP flap was possible to do later even if I choose implants now.) I don’t know if this would be an option for you?
      Whether there are other reconstruction options or not, you will continue to be an amazing, strong, courageous woman. I will put you on my calendar to pray for your surgery this Wednesday – and also for extra courage, strength, peace – and pockets of joy this week and as you continue to heal. God can bring ‘beauty from ashes,’ and I pray that for you. Hugs, Beth W.

    6. Hi, Sue – Have been thinking about you and hoping all went smoothly with your surgery, and that you are healing quickly and without discomfort. I’m sure this has been an emotional and stressful week for you, and I just want to send some encouragement and hugs. You have made the right choice for you right now, so give yourself time to heal and then you can think about any future options. You are a beautiful person, and so much more to you that is unchanged. Be patient, and proud of yourself for being brave enough to do a really hard thing, and know that there is so much more good out there. Praying for strength, healing, comfort, courage and “in spite of” joy. Hugs, Beth W.

    7. I had 15 year old implants when I found out I had breast cancer. (It was pretty much time for a replacement anyway.) I had a mastectomy on my left side with an expander put in to prepare me for new implants. Both my surgeon and plastic surgeon had no problem with replacing the old ones. I was never very big – just a 34 almost B and I went with the same size. They did the new implant on the right first and 3 months later, I had the other put in my mastectomy site. It was fine and there was never any doubt about not doing it. So I say yes, get another opinion, or three or four. Good luck and remember, you are the boss here – not them. Hugs! Gaye

  34. I’ve been off this site for a while but your comments pop up in my email so I feel compelled to update my story for so many of you that have questions/issues about the AIs. I tried them all. They turned me into a crippled old woman (55 yr when started). I finally quit at 2.5 yrs and it’s taken me another 2.5 years to begin to feel the pain leaving my body. The last few years have been constant doctors trying to find out what was wrong with me and misdiagnosing me and giving me meds that made no sense. They won’t say it but I truly believe it was auto-immune/inflammatory chaos triggered by AIs. I’ll hit 5 yr. cancer free this year and had I know how bad the AIs would be for me I would never have started them. That said, my odds of recurrence are only 10-15% so not the choice for everyone. If your risk is low think long and hard about them. As the nurse said to me quality of life counts and so many have recurrences and also beat those odds. With the oncologist’s blessing I quit them, best choice I ever made. Now to reinvent my health is going to take me a bit longer. But just another challenge along the path of living.

    Peace and don’t forget to take care of your heart and soul as you trod this path.

    1. Hi, Beth,
      Thank you for sharing. Would you be open to conect with me about quitting the AI with me? Intotally understand if you decline.
      But the way you approach all this and your experiences, decisions and your last remark about taking care of our hearts and souls really resonate with so if anything thanks for reminding and sharing that message with us,
      Wishing you well,
      Love and light,
      Kind regards

  35. Thank you I completed stage 3 bc treatment and have been on anastrozole for 1.5 years. It is indeed awful. For me the most difficult thing was to go through the awful chemo, surgery, and radiation, and praying every day for the point when it was all over and I would feel better. Then they put me on anastrozle and I feel like I have a horrible flu every morning when I wake up. So there is no relief. Oncologists couldn’t care less about side effects but I recently told my doctor that I would evaluate how I feel after my 2 year mark. I told him I am sure anastrozole might help me fend off cancer but what’s the point if I feel like hell every day. By telling him that I at least feel more in control of me, my body, and how I want to live my life.

  36. Hi Everyone,
    I was on letrozole for 16 days. I took my Fosemax as prescribed Tuesday morning, and by Wednesday afternoon I noticed muscle and bone pain in my sternum that radiated across my chest. Early Thursday morning I was in excruciating pain. I couldn’t move without wanting to scream or cry but it hurt to move my face to cry. I’m officially never taking an AI ever again or Fosemax. I have metastatic breast cancer in my lung so I will ask my oncologist to prescribe Tamoxifen for now. It’s the original drug for metastatic breast cancer. Hopefully I can manage it. This site saved me from despair once I read that others have had difficulties with AIs.

  37. Hi, all. I’m so happy to find this discussion. I am 60, was diagnosed in January 2020 with er+. pr+ her2- invasive ductal carcinoma. All the cancer was removed with the biopsy. Had a lumpectomy, 16 days of rads, which wiped me out. I started arimidex on May 15, 2 weeks at every other day, then on to every day. Hot flashes are the only side effect and they’re not bad. I, too, had been on HRT. My oncotype is only a 7. If I take the Arimidex, my chance for recurrence is only 3% in the next 10 years. If I don’t my oncologist thinks it’s 7-10%. So low. My primary care had uterine cancer 3 years ago and had been practicing natural remedies for 40 years. She has me on DIM supplements and Calcium Di Glucarate as natural aromatase inhibitors. I am also going to acupuncture every two weeks with a woman who has been practicing oncology support for 30 years. Both of them are life savers. I do not like my oncologist and am looking into switching. she’s like “Just suck it up or let me give you all kinds of meds to cover up the side effects”. I figured I would at least try the AI. I’m so glad to hear about the red urine! I’ve been wondering. I really want to just not take this stuff but the fear seems to overrule. If my side effects become bad, I am definitely out. I sort of feel over treated for my type of cancer and my oncologist just has tunnel vision. She doesn’t think about my over all health at all. Soon, I will be seeing a functional medicine doctor to get his take on everything. I am just refusing to stop looking for more information. My blood work showed that for a 60 year old woman I actually produce quite a bit of estrone and dhea which seem to be the things that need to be blocked from turning into estradiol.
    On top of it all, I am just now entering a relationship with a wonderful man and the thought of the effects on libido and vaginal tissues is just breaking my heart. Thank you so much for letting me vent here. I’ve been looking for a place that validates all my misgivings. I have no idea really what to do at this point.

    1. Re: relationship. I could not tolerate Arimidex form more than 5 months, and my oncotype DX was also very low. I have chosen to use supplements, diet and exercise to reduce my 10 year recurrence risk by basically the same percent as the med would have done. Everyone must make their own decision and weight their own risks/benefits, however. But even without the med, I experienced severe dryness and vaginal atrophy. I tried the Monolisa touch laser therapy with minimal benefit. About 6 months ago, I spoke with my gynecologist who had just been to a conference, where they presented research that shows that the risks of cancers from vaginal estrogens are no different between women with ca and those without ca. She prescribed Imvexxy vaginal suppositories for me, and while not exactly back to ‘normal’ it is 80% better. There is a discount program for the med also you can check into if your insurance does not cover it. Just something to talk to your gynecologist/physician about and consider. If this man is patient with you and ‘gets it,’ he is definitely a keeper. 🙂 There are good ones out there! Blessings, courage and hugs. Beth

    2. Elizabeth, You might do alright on an AI, so I would give it a try. If you don’t like your oncologist, you probably should consider finding a different one if that’s a possibility. Good luck with things going forward. Thank you for joining this discussion. Feel free to vent any time.

  38. Mary, I’m glad to hear from someone that is in their seventies. I have been on letrozole for six weeks. I have stage one cancer, too. My oncotype DX was 14%. The only issue I’m having is dizziness. That is why I stuck with it thinking it will go away or get better which it has, but not to the point that I can live with it. My oncologist has put me on letrozole every other day, but it’s still not curing it. Is there anybody else that has had this issue? My oncologist can’t give me an answer why I’m dizzy. He has now suggested I switch to anastrozole. I know that anaztrozole has more joint and muscle pain. I have so many questions, but feel the medical field is clueless when it comes to these drugs.

  39. Can anyone out there tell me how you find a good oncologist? I have been to three different ones and don’t like any of them. I have come to the conclusion that this field is clueless when it comes to aromatase inhibitors. I also feel they don’t want to give you the time of day and are just interested in going to the next patient. They won’t give you concrete information and it’s just trial and error. I live in Phoenix, Arizona and if anybody lives in this area I would appreciate knowing who they see. Thanks,

  40. Hi,
    I was just strolling through the internet and came across your post. My mother is currently taking Aromasin and I don’t know how to help her. She’s been taking it for about a year and a half and I see her strength declining. It breaks my heart to see because before she was diagnosed with breast cancer she used to be so active, she was a baker and enjoyed making bread. Now just trying to wash a spoon leaves her hands in pain. I worry all the time that the cancer may come back. Just now she was telling me her back and neck are hurting. Her doctor just tells her to take Tylenol for the pain. It doesn’t do much to relieve the pain and everything is worse at night. We have recurred to giving her chocolate laced with THC/CBD so she can rest. Knowing that there’s other women out there going through the same thing alleviates my worry a little but I wish there was something I could do. I don’t want her to give up, I want her to keep fighting because she’s my best friend and even though I know that someday she has to go I’m not ready for that day to be any time soon. She has yet to meet her grandchildren. I haven’t been able to talk to anyone about my feelings. I try to stay strong so my mother won’t worry so it was nice being able to just let it out, even if it’s just on a blog comment section.

    1. Hi Melissa, Your mother is lucky to have you looking out for her. I can hear your frustration and sadness and want you to know there are cancer support groups specifically for caregivers. Take care.

    2. Hi, Melissa. So sorry for your concerns for your mom. It sounds like you are a wonderful support for her and it makes such a huge difference to know you are not alone when going through cancer and it’s treatments. I know she must be so thankful for you! Is there an alternative medication she could try? Was she able to have an Oncotype Dx test done to know the chances of recurrence over the next 10 years? Sometimes if the test result is low, it may not make a huge difference to take the med vs. a healthy lifestyle, supplements and exercise. (I was not able to tolerate the med, so have had to do what I can in these other areas.) Is it possible to take a short break from the med? I felt very depressed on top of bad physical reaction to the med, and that makes everything more difficult. If she is depressed from the, could her physician address that? Sorry for so many questions – these are things I had to question for my own case. It is difficult to be a caregiver, and it does take alot out of you emotionally. It is good for you to talk and to not feel alone yourself! Hugs and courage. Beth

    3. Melissa, I’m glad you shared here about your mother and about your worries. It’s exhausting trying to stay strong, isn’t it? I hope reading some posts and comments here helps just a bit. As others have said, your mother is lucky to have you as a wonderful support person. Remember you need support too. Wishing you both the best.

Leave a Reply

Your email address will not be published. Required fields are marked *