Breast Cancer Treatment’s Collateral Damage – Let’s Talk About It, Part 1

This post has been sitting in my draft folder for a while. Sometimes I hesitate to write about breast cancer treatment’s collateral damage (aka cancer crap fallout) that goes on and on and on following a cancer diagnosis.

Notice I say, following a diagnosis. I don’t say post cancer or post-cancer treatment because as far as I’m concerned, there is no such thing as post cancer. Unless you’re talking about dying, which I am not.

Once that cancer beast barges into your life, you can’t completely be rid of it because along with the ongoing threat of recurrence, the collateral damage lingers, for most of us anyway. You can’t go back.

And if you’re metastatic, the collateral damage goes to a whole different level.

A long time ago, I decided I would allow myself a good rant here on the blog now and then about some of that cancer treatment collateral damage.

Are you ready?

Breast cancer treatment’s collateral damage is a big deal. Let me repeat, it’s a BIG deal.

Sometimes, this collateral damage is short term. Sometimes it’s long term. Regardless, talking about collateral damage you have does NOT mean you are a complainer. Or a whiner. Or that you’re ungrateful. I don’t know of one single cancer patient out there who is not extremely grateful.

But being grateful does not mean you must keep quiet. No, it does not. 

This post touches on a half dozen or so collateral damage issues, of the physical sort, that I deal with. There are others, but some things are private and shall remain that way.

Besides, we don’t have all day, right?

When you get done reading about some of my breast cancer treatment’s collateral damage, I would love to hear about yours. Commiserating about this stuff can be helpful and downright good for you, too.

You don’t have to keep your “issues” secret. You don’t have to remain stoic. Really, you don’t.

Besides, who doesn’t love a good rant now and then?

Well, that’s what I’m hoping anyway. So, let’s discuss some of that breast cancer treatment collateral damage, shall we?

My hair, or rather, my lack thereof

I hate my hair these days. In a nutshell, it’s wispy. Hell, it’s sparse. If I sound vain; I do not care. Before cancer, my hair was one of my better features. No more.

I wonder if things will improve up there when I go off Exemestane, one of those blasted drugs we love to hate. Some say, yes. Some say, no. Time will tell.

These days, every day is a bad hair day. And btw, when someone loses her hair to chemo, or due to whatever reason, do not say, it’s just hair. Or, it’ll grow back (mine didn’t, okay, it did, but not the way it was before). Do not say those things. Just do not.

I can’t tell you how many times a day, I check my bald spots and strategically rearrange things. It’s embarrassing to even type those words. But I am typing them anyway in case you are doing the same thing. I have over a dozen caps now. Before cancer, zero caps. These days, a cap is my most-often-used accessorizing essential. Sad, but true. And oh yeah, my brows and lashes, those are sparse too.

I fully realize my friends who are metastatic would say they’d gladly be bald for the rest of their lives if it meant having an extended life. I also know most of them are some of the kindest, most compassionate and understanding women on the planet, and they totally get this hair thing. They really do. They’ve told me so.

Fatigue – Why the heck can’t I get more done?

Fatigue is still a big fat nuisance. I don’t know about you, but I have yet to find my mo-jo, new normal or whatever the heck I’m supposed to have found by now.

Are those little white pills the culprit?

I don’t know for sure, but I do know I gave up my day job of substitute teaching because there is no way in hell I have the stamina to stand in front of a classroom anymore. Seriously, I would not make it through the day.

Writing blog posts and completing freelance writing gigs is all I can handle work-wise these days, and even on the blog, I’ve cut back to one post a week. Cripes, I used to write two.

I have yet to find the energy to start my next book; I have plans for at least two more. I’ll get to them. Eventually. I hope. I try not to think about the fact it took me five years to write my memoir.

Do you ever feel as if everyone gets more done and in less time than you?

Yeah, me too.

Taking this one step further, sometimes I wonder if blogging and writing I do manage to get done is “real” work that matters at all. Whenever I mention I’m a writer, of course, the natural question that follows is, well, what do you write about?

When I say, cancer, let’s just say, the eye-contact avoidance, fidgeting and uneasy side-ways glances begin. Sometimes there are actually audible sighs of relief when the subject gets changed. I kid you not.

Who can blame them? Other than you guys, who wants to read about cancer shit anyway? (Thank you, Readers.)

And, I cannot forget about the state of affairs inside my house; it’s not pretty many days. Who has the energy to deal with housework? Or yard work? Let’s just say the bar of tidiness has been lowered.

Fatigue, you do not belong here. Please go away.

That other ‘F’ word – Fat!

Do I really need to say more?

I didn’t think so. Many of you know exactly what I’m talking about, am I right?

If not, click here. 

A little bedroom talk – we both miss my original parts

There is so much I could say here, but Dear Hubby is a very private person; heck, believe it or not, so am I. Maybe I’ll write a post about this topic at some point, but let me just say again, I miss the old me my breasts. They were mine. I had them a long time. I liked them. Dear Hubby liked them.

Now during intimate moments, my reconstructed ones give me no pleasure whatsoever. They are numb, after all. In fact, they cause me angst and discomfort. I wonder if the darn things will shift, or leak, or break.

And that special erogenous nipple zone. Gone. Forever. Luckily, Dear Hubby and I have figured out ways to amuse ourselves with the parts I have left, but the reality of what has been taken by cancer remains very real to us both.

I need my bones not to crumble!

An important issue for many of us post diagnosis is bone health. Before starting on an aromatase inhibitor, my bone health was stellar. Now I am labeled as having osteopenia. I am not happy about this development. Not one bit.

A person my age should NOT need to worry yet about taking a tumble and breaking her bones. I shouldn’t have to over-worry about slipping on the ice this winter or thinking about giving up my daily walk with the dog because I might fall down. And let me remind you, I live in Wisconsin. The winters are long here. Very long.

After my recent oncology check, another health issue was revealed. I’m not ready to go into this one, so I won’t. Nothing terribly serious, but it is ONE MORE THING! And it pisses me off!

I would also like to suggest that medical professionals are not helping when saying something like, this type of condition isn’t all that uncommon for a woman of your age. 

Drives me crazy when things obviously (to me) linked to cancer/cancer treatment are attributed, far too often in a cavalier manner, to normal aging. Not buying it.

Besides, even if is it normal aging, does that mean, sorry, you’re on your own from here on out? Really?

Regardless, can I just say, f*** off, cancer?

(Why yes. Yes I can say that.)

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

Oh, those tingling toes…

Your feet don’t lie. They let you know immediately if something’s wrong underfoot, do they not?

I read somewhere that there are some 7,000 nerve endings in each foot. Incredible. Other than podiatrists and shoe salespeople, who thinks about feet umpteen times a day?

Well, people with neuropathy in their feet do, that’s for sure. I have a mild case, and let me tell you, I think about my feet every single day. Many times. Thank you very much, chemo.

And then there is my chronic arm and shoulder pain, joint pain and ongoing watch for lymphedema…blah, blah, blah.

Enough, right?

Even I’m getting tired of this rant!

So…those are some of the areas of collateral damage I deal with. I have a sneaking suspicion many of you, Dear Readers, are dealing with them (and others), too.

And the thing is, who knows what issues are yet to come?

Sometimes, procedures and treatments that save or prolong lives also impair them. This is just reality in Cancer Land. However, patients should be warned beforehand and also offered guidance when impairment does happen.

The risk of developing long-term side effects from cancer treatment is very real. It’s important to be aware of them – not paranoid,  just aware.

You might want to read, Are the Long-Term Side Effects of Chemotherapy & Other Cancer Treatments Under-discussed?

Part 2 , when I get to it, will address cancer treatment collateral damage of the non-physical sort, of which there can be a lot as well. And as we all know, the scars we cannot see can be even harder to deal with.

I bet you relate, right?

Finally, let me repeat, I am grateful. Very grateful. However, I am allowed to be grateful, AND I am allowed to vent now and then about cancer treatment fallout shit.

So are you.

Rant over. Thank you for reading it. I think I do feel better now.

Now it’s your turn!

If you like this post, please share it. Thank you!

If applicable, what are your top cancer treatment collateral damage issues, physical or otherwise?

Do you ever feel you are expected to keep quiet and/or remain stoic about them?

How do you see yourself these days when you look in a mirror?

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Breast Cancer treatment's collateral damage, Let's talk about it. #breastcancer #cancer #sideeffects #hairloss #chemotherapy #lymphedema #health #womenshealth

108 thoughts to “Breast Cancer Treatment’s Collateral Damage – Let’s Talk About It, Part 1”

  1. I see a scarred, deformed, breastless person. I am still trying to let one wound heal. I forgot to mention I see fear of reocurrance and an envious shrill. But on the other hand I see a fighter and survivour. If I could just get past the first part. For me the emotional carnage is the hardest.

      1. I would rather die at this point than be in more pain, be fatter, be unable to walk up and down my laundry room, get u p from the ground without help , not have energy, be confused and disorganized, my hair is thin on the top of my head and I definitely do not want a bald spot. I have had nothing but a crap life , i was at the end of my misery when i got diagnosed. Then i suffered thru chemo, some weightloss then stabilized at still too fat because of the steroids and anti nausea they give you…then herceptin and the lovely nulesta shot which would lay me out for three days and no eyebrows and drains for weeks, implants that are a bit too big because i have a freaking wide collarbone , i went to every dr visit alone (save for one where the spouse was jokey joke and he still doesn’t know the name of ANY of my doctors. Cancer is my problem unless he has to stay at home to help out, then I”m his problem. ) I didn’t want tamoxifen. I was scared and shamed into taking it by other cancer survivors who had no side effects and told me i was being selfish and a good mother wouldn’t think twice about taking it. Then i took it for 53 days before I realized that the reason i felt like my knees were turning to dust…my tiny feet and hand bones were aching…my back itching…unable to sleep….massive hot flashes all day and night…low energy…deep dark depression…nipple reconstruction (all with the hope that i’d continue to lose more weight post end of treatment and get my life back and maybe meet a guy on teh side before i turn 60 and officially become totally invisible to the opposite sex as if i’m not already). No that’s not good enough for anyone. Now i have to give up all my favorite foods, i ahve to work out extra hard and eat very little and not care about food while i cook it for other people every day…and i have to take AI’s because I’d be stupid, irresponsible, selfish, clueless, self centered and cowardly not to. I’m sorry. I do not feel like this is life. The universe clearly hates me.

        1. Viki, Your opening sentence is worrisome, and I hope you are talking with someone about your feelings. If not, please seek someone out. You’ve been through a lot and you deserve to have someone who listens and validates. The universe does not hate you. And you’re not alone. Please take care of yourself. Thank you for sharing.

        2. Viki, have to agree with Nancy that your feelings need to be listened to. Maybe especially by someone outside the relationships you are in. My experience has been with family that want to help but can’t because my feelings of vulnerability get confused with my criticizing them. When I just want HELP it isn’t like I want to go outside the support network of family, or name them as contributors to my problems. What I want to do though is to set the complicated explanations aside and deal with the direct problems.

          Looking for plain, practical and natural acknowledgement that things can suddenly overwhelm us is sensible and straight forward. As is having a conversation with those who are having or have had similar experiences. Are there counselling services where you are being treated? Also support groups–not feeling alone is the first step.

          1. It sounds like you have similar problems as I do. I actually thought I had PTSD after my second round of breast cancer. I ended up going to talk to a nurse that I hardly knew. It really helped talking ( or dumping) on someone who was basically a stranger. I am still working things out!!

  2. You cover the bulk of my issues, hair like a dandelion gone to seed, a toddler’s gait do to neuropathy (I am told this is highly amusing to watch), a fat lymphedema arm that determines I wear baggy tops. Missing body part & a blipped thyroid (radiation scatter hit), fat. Permanent shape change inspired me to give away my clothes & invested in carters for grown ups. Permanent loss of energy mojo. Being a senior docs think all this does not matter & I am supposed to be gracious & grateful. Being a widow I commiserate alone, the obvious physical changes label me older than I am. My social life now consists of offers for help when I grocery shop, If I am extra good maybe the church will let me launder the linens.

    1. Lin, I’m sorry you have all that collateral damage. It’s hard. We can be grateful, and gracious if and when we choose to be, but I don’t accept that we should just grin and bear it. All patients, regardless of age, deserve validation and guidance in managing impairments brought on by cancer treatment. I appreciate your willingness to share. Thank you.

    2. I agree with you. I’m constantly fighting the thin hair and lymphodema. We have a wonderful clinic here. Have you checked into physical therapy. It has worked for me. Good luck

    3. Lin, I have to agree with all you say. Loss of energy is huge for me. And it’s hard to maintain much interest in anything. I hate food and preparing it. Being a widow I live alone, so why cook anyway? I don’t have the energy to keep up my yard, let alone my house. I am only three years into this, but I fear my life as it was is over, and never returning. I also feel friends and relatives don’t really want to hear about it. That makes me feel isolated. I am so exhausted all the time it makes me wonder what’s next? I wear two leg braces to help alleviate the pain in my legs. Can’t take pain relievers cause I’m on Coumadin, from a titanium aortic valve. Thanks for letting me vent

      1. Hi, I know you can’t take, Naprosyn because of the Coumadin. That was the med that helped alot with the Inflammation in my knees, now I shouldn’t take that because I take Eliquis. I sneak a Naprosyn every once in awhile or I won’t be able to walk. My left knee had been bothering Me off & on since 2-1-2020, now since 6-5-20, it’s bee painful everyday. I just got a MRI. Go to Orthopedic Surgeon tomorrow, don’t know what if anything the results will show. I can handle alot of pain, but not this, si I take NORCO 5mg when needed. I forgot to mention I was diagnosed with Stage 111C Inflammatory breast cancer in 2014, 19 lymph nodes removed 12 nodes had cancer.I can’t be suffering. I wish you well. Love, Janet from Sacramento, California

  3. Hi Nancy,
    Excellent rant, and I hear you loud and clear. Unfortunately, there’s so much cancer fallout, and yes, I HATE when doctors tell me my symptoms are due to normal aging rather than cancer treatment. That response to my concerns contains many shades of bullshit.

    I’m in osteopenia-land as well, and it’s not a good place to be. Just thing: I can break my hip and die. And I’m too f–ckin young for this. Before cancer happened to cross my path, I had really nice breasts, and now they are poor imitations of my former ones, the ones I was born with. And I hate my new prosthesis. My other one just imploded, so I had to get a new one, and it has a nipple that is annoying me to no end. Just hate the look of it.

    I could go on and on….sorry, this comment has become a mini-rant. And I’m very grateful to be alive.

    1. Beth, I remember that you are in osteopenia land too. Ugh…And yes, you’re too young for all this crap too. I like how you put that, many shades of bullshit! That gave me a chuckle. Sorry you hate your new prosthesis. I have a feeling many of us could on and on and once in a while, we need to do exactly that. Thank you for sharing. Grateful here as well. I’m pretty sure we all are.

  4. Thank you, I don’t feel so alone. Fatigue, “not my chest”, soreness, and nueropathy. I am trying to get my hair under control…never has my hair been curly. My house is a mess. One load of laundry does me in. Leg pain from the meds for osteopenia. Worry that it really isn’t gone. I am only guessing I will be crying more in part 2, emotional scars. Cancer sucks, and “f” cancer! All kinds! But I WILL beat it!

    1. Beth, It’s always nice to know we aren’t alone, so there’s that…Cancer sucks indeed. Thank you for reading and sharing about some of your collateral damage.

  5. Ugh, (rant to ensue) I was so tired of my oncology doc blaming age I fired him. I had none of these things before breast cancer. The side effects from the AIs were so debilitating I had to stop taking them after a year. Now I live with increased fear of metastasis. My energy levels will never be the same, and I have to work. The sexual side effects are numerous and hard to work around so I’ve mostly given up and I’m married. Yes, I too am grateful to be alive but…

    1. Lynn, I hear you. On all of it. I am still on my AI, but presently taking a break for one month until I meet with my PCP to discuss my most pressing collateral damages issues. I almost feel sorry for her! ha. Thank you for sharing. Your comments will help others feel less alone, I’m quite sure.

      1. I am curious about what side effects go away when you stop the AI for a short time. I’ve heard women say they felt so good they did not want to go back on. Sometimes we get so accustomed to feeling crappy that we forget what good feels like.

    2. Please don’t give up on the sexual side of life. It keeps the bloom on your cheeks and the spring in your step. There was an extended period after breast cancer that I had no Desire, but Arousal almost always worked. My husband is well into 95 and I am 87 and we are still sexually active. There are ways to keep going. And we feel it is worth it.

      1. Lois, Great to hear from you! You are an inspiration, as always. And you’re right about not giving up on the sexual side of life. Thank you for chiming in.

      2. I agree with all you’ve said! AND I’ll add that chemo really did a number on my nose. It wasn’t enough that it was raw and bloody all through chemo – now I can’t go anywhere without blowing my drippy nose every 20 minutes!

        1. Lanne, Are you still on chemo? If not, it takes a while for those little nose hairs to regrow. I didn’t even realize they disappear during chemo, but they can and often do. Hopefully, things will improve. Thanks for sharing.

  6. Collateral damage – Dry thin fly away hair, wrist pain and weak hands, sometimes breast and armpit swelling, bone loss and sexual side effects. I am waiting for test results from the Cardiologist to see if I have heart damage from the letrozole or if it’s anxiety that is affecting my heart. Either way it sucks but I am voting for anxiety.

    1. Laura, I hope the test results don’t show heart damage, although as you said, either way it sucks. But at least you’ll know for sure what you’re dealing with. Thank you for sharing about a few of your issues. We understand. Good luck with your cardiologist appointment.

      1. Hi,ladies,its the eve before my bilateral mastectomy.
        I had a lumpectomy last year Feb,in my right breast and tested positive in my left breast a few weeks ago. I made the decision to remove both…not an easy decision,cue crying,depression,more sobbing,more depression coupled with intense prayer and supplication. After radiation I took the decision NOT to continue with first letrosol and then tamoxifen.What is it with oncology doctors and their ability to make you feel stupid,ungrateful to be alive and unthankful to them for comdenming you to a slow death with thise hated tablets.I immediately had the worst textbook side effects…including green discharge(excuse if it too much info!!!)but as a single parent I could not deal with the bone aches and fatigues as well as earning a living and raising a daughter.
        I actually have my life back,am able to work a full day,as well as cook,spend time with said daughter and DO life!!! Let the chips fall where it will.I made my decisions,am going into this with my eyes wide open and my trust in God!!!
        I appreciate all comments,rants,opinions.Its made me more prepared,realistic and able to face this life altering experience full on!
        My sincere thanks and appreciation to all
        Keep well and continue to be strong!!

  7. Hi Nancy, another excellent post! So thankful I found your site, it has been a source of incredible validation and support for me as I try move forward. No one can describe the ordeal like someone who has experienced it. The collateral damage for me has been everything you say physically and emotionally and a number of additional issues. My story is heavy as I carry extra scars of dealing with bullying, betrayal and oppression from so-called professionals during my cancer treatment. Still struggling through the healing process but hope to be able to write about it one day to give everyone but especially women, a heads-up about how things can go wrong and what to do to better protect yourself.

    1. Rose, I am sorry to hear about all you’ve been dealing with. It’s totally unacceptable to think you’ve been bullied and feel betrayed by professionals during your cancer treatment. Things like that should be reported to someone. I encourage you to do that writing you mentioned as that will be healing, I’m sure. Perhaps start with a journal. Thank you for sharing about these personal things. I’m glad you find my site to be validating and supportive. Keeping it real. Support you can use. Two of my goals. Please take care of yourself.

  8. Nancy, great post. My damage is lymphedema, osteoporosis— yeah I’m beyond osteopenia— thanks to tamoxifen induced uterine cancer, a hysterectomy due to that as well and surgical menopause. Sexual function impacts. Accelerated aging.

    A nurse at my work tried to give me a pink pen, and we have a colleague who’s deep into chemo toxicity and the nurse just doesn’t get the traps of the social narrative that insists we are all triumphant survivors. I’ve explained and explained. I ask her if we celebrate our patients heart disease and force them to be grateful (insert any other disease that is sudden and life threatening).

    Thank you for your truth and honesty, and walking the journey with me. And validating my reality.

    1. Kira, Accelerated aging, that’s a price we pay, but I don’t appreciate or accept being told by my care professionals that it’s normal aging. It’s not. And of course, we’re all grateful to be here, but I sure hope one day treatments become less harsh, more effective and leave patients with less collateral damage. I am sorry you have to deal with lymphedema and osteoporosis. Are you taking meds for the latter? I have a feeling I might be talking about bone strengthening meds at my next appointment later this month. And yes, that stale social narrative insisting we should always portray ourselves as triumphant warriors/survivors – it gets old. Thank you for reading and sharing your truth and honesty too. Validating one another matters. A lot.

      1. Nancy, at this point I’m not taking osteoporosis meds. I researched it extensively and talked to my great gynecologist who is a specialist in it, and decided to hold off right now. Dreading the next bone density test….there’s prediction models you can run to predict fracture risk, and the absolute number is low.

        1. Read my post below. The bone strengthening meds can help prevent bone mets! Not enough women avail themselves of this.

      2. Nancy, are you aware that some of the bone strengthening meds have been shown to help prevent bone mets, especially in early stage breast cancer? In the near future it is likely that women will be put on a bone med at the same time they start AI. I’m on Prolia and feel a bit more secure that I am protecting myself from bone mets while strengthening my bones.

        1. Dino, I have heard this. However, I’m not sure I’m in favor of being on another drug with more side effects. I’ve also heard there is risk in being on bone strengthening meds for too many years and that more research is needed on all this. It’s a balancing act, that’s for sure. Thanks for sharing.

  9. What a great rant! Thank you for expressing so many of the truths that we are all facing.
    I won’t go into all the collateral damage I’m experiencing since I think you’ve covered most of them. One thing I haven’t heard mentioned is tendon damage. I had two achilles tendon ruptures due to the effects of the chemo drug, Ciprofloxacin. One tendon has healed over time but the other is still problematic, so in addition to most of the effects you’ve mentioned I’m in constant discomfort and hobble about like an octogenarian. No more pretty shoes for this girl, just flat orthopaedics with extra support. Another blow to my already low self esteem.
    The fatigue is awful and ongoing and, like you Nancy, I had to give up my teaching job because of it. I’ve gained a lot of weight because those twenty minute power walks and exercise programs the doctors recommend are pretty tough when you are in pain and you just feel like falling down and going to sleep.
    Yes, I’m happy to be alive, and yes I realize things could be worse. I realize others have far more extensive and serious damage and my heart goes out to them. The point is, having to deal with this crap at any level is not easy and it just seems to go on and on and on without resolution. That’s what I wish friends and loved ones could understand.

    1. Lennox, I haven’t heard about tendon damage being due to effects of chemo, but who knows? It sounds pretty suspicious. I’m sorry you have so much discomfort and feel like you are hobbling around. And I agree, it’s hard to exercise when you have pain plus fatigue. I guess, try to do some sort of movement every day. Have you read my exercise posts? There will always be others with worse case scenarios than our own, but as you said, this doesn’t mean any of it is easy. I didn’t realize you were a teacher too. Sorry you had to give that up. Keep on keepin’ on, as they say, right? Thank you for reading my rant and for sharing. We understand.

    2. Lennox, sorry about your tendon ruptures. But Cipro is not a chemo agent. It’s an antibiotic. All floxacin antibiotics carry risk of rupture of any tendon in your body. FDA has a black box warning on these drugs requiring docs to warn patients of this risk. I’m an MD and I know the risk and personally would choose a different antibiotic. Most docs I know who choose a floxacin does so because the dosing is less frequent than other drugs which helps patient compliance.

  10. Hi Nancy omg I so enjoyed your blog. How honest, how liberating. If only I could write it down as you do. Its so hard been pc and stoic 5 years later when you feel like crap as everyone thinks sure her hair grew back shes cured now!!!! How could she still be talking about her cancer sure thats years ago!!! Hello, the fallout is for life, which no one tells you about. Yes im grateful to be alive but some days I ask is this living? Thanks for putting a smile on my face and hearing the other ladies comments has made me feel ‘normal’ for the first time in a ling time and knowing others are going through the same thing as really lifted me. Thank you so much. Im looking forward to reading your other blogs.

    1. Mary, I am glad you appreciated this post, and that I was able to put a smile on your face. Sometimes my humor is sorta under the surface. ha. You’re definitely not alone, as you can tell from the comments left here. Thank you for reading and sharing. I hope you find more of my posts helpful.

  11. Thanks for this Nancy. As a guy damaged originally by heart disease then on to cancer and awful treatment from an insensitive system, I almost feel out of place here–except for the hurt and the loneliness that comes with the “brave survivor persona” we are assigned as we tough it out.
    Your comments come at a good time for me as my health crumbles while my primary care person has disappeared and it’s necessary to star a whole new medical relationship as if my medical history occurred on another planet.
    And that brings up a question that as a male without breast cancer still seems relevant: I feel disassociated from my identity as a competent person by being damaged and subject to care, when not so long ago I was maybe not entirely self directing, but half-assed in control.
    Some of my parts are implants that came with warranty slips and I have a custom-made stent in my abdomen so that which was removed has been upgraded. So in a sense I’m “me” but there’s something missing in the “realness” of who I am as a complete human and I wonder if breast cancer with its replacements and loss of sensation robs women of their being “qualified” or “worthy” of being complete.
    And…is there a gracious way for the rest of us (male or female) to reduce the hurt?

    1. Scott, I’m sorry to hear about your issues. You’ve been dealing with so much, and it’s never easy to begin a new medical relationship. You bring up some interesting points about identity. Food for thought, for sure. Thank you for adding your insights on this, you’re not out of place at all. And thank you for posing that last question, too. More to think about in that.

  12. Thank you for this rant Nancy, and to all the respondents. I have stopped taking AI’s and tamoxifen. Not a nice decision, but it is my decision to make. For those who have been told it is selfish to stop taking these meds, well – everyone reacts differently to them, and for some of us the side effects are just too damn harsh. If someone else wants to judge me as weak, uninformed or whatever, go for it. I am fully aware of the risks, but I sure do like waking up able to notice something I like (beautiful sky, the sound of rain, whatever) rather than having the first thought be along the lines of “oh damn I woke up, hm should I try tripling the anti-depressant dosage, doubling didn’t work”.

    1. Ali, You have every right to make the best decisions for you. I’m glad you feel comfortable with yours regarding AIs. Thank you for sharing.

  13. AArrgghhh the fat, the weight gain! Growing up I was tall and skinny it was difficult to find clothes. It DOES seem whiny to complain that I cannot eat whatever I want, which I’d been able to do for the first 40 years of my life. Now, I gain it all the time–and I do NOT have a sedentary job. I’m on my feet ALL DAMN DAY
    Which brings me to fatigue. I sit down at night and generally start nodding off. I don’t have the energy to spare to write my blog–since I’ve had to focus on other sit down tasks this past year.
    And something tells me the memory/mental/chemobrain issues will be in part 2? I’m not as bad as I was, but I do scare myself at times, the things I forget.

    1. CC, Oh yes, those two ‘f’ words…I’m rather familiar with them as well. Do you hear, it’s because you’re over 40, from your medical professionals? I will likely be addressing those other issues you mentioned in part 2, whenever I get to it. Pretty sure you’re not the only one who scares herself at times. lol. Thanks for sharing.

  14. Nancy I have cpin chemotherapy induced peripheral neuropathy. I am being stung my a thousand bees in Borge calf’s to toe. The same sensation goes down both arms to finger tips. A lot of people went through waves of neuropathic Pain during treatment. I road that wave because I understood it was a side effect. Along with hair loss. The pain is constant. Nothing helps. I can’t sleep. When I am able to it’s not refreshing I am exhausted. So far bald and have issues using my hands fine motor skills are not there. I discovered the diagnosis and went to see my dr. Her response was she just wanted me to stop whining. I took a deep breath. I told her I wish I could give her just minute of what I feel. Some days I meditate at keep myself calm.and some days I can not do anything but give in. Toes curled. Oh and I need all my teeth pulled and dentures but that’s not covered, and I make to much money .

    1. Marianne, Your neuropathy sounds horrible. There are meds to help with it, although I know, adding more drugs might not be what you want to do. Your doctor’s response to just stop whining is unacceptable. Perhaps switch doctors. You deserve validation and help. Don’t settle for less. Easier said than done, I know. Good luck and thank you for sharing.

  15. Thank you for this post. Yes – I am grateful for still being around. But I am frustrated as heck with the changes to my life. My new “normal” is anything but normal but if I complain about it, I come across as ungrateful. I am not ungrateful. I value my life. It is just a bit harder theses days with reconstructed breasts that feel like painful additions (and no sensation except pain); the joys of having so much joint pain and the constant worry about falling and breaking a bone even though I am only 55. So breast cancer is not something you have and then get over and are all smiley and wearing pink. It has fall out, or as you say, collateral damage. Yes – I get to live but I have to live with so much more than I anticipated or that others can even see. Thank you for sharing.

    1. Kate, I am very grateful too. As we all are. Sharing your truths does not mean you are whining. Keep pushing for validation and help from your medical professionals when you feel you aren’t getting it. Thank you for reading and sharing.

  16. In July 2015 I had a lumpectomy for small stage 1 invasive ductal carcinoma and three weeks after thirty-three radiation treatments to the left breast at 9:00 position I developed:

    radiation pneumonitis treated with prednisone
    atrial fibrillation which is progressive
    peripheral neuropathy in feet and legs
    Nerve damage in chest and now, a
    pacemaker for sick sinus syndrome.

    Two and a half years ago I played tennis two or three times a week and now there are days at a time when I am unable to leave the house and have made six trips to ER for the atrial fibrillation. The last ER visit was due to fainting, hitting my head, thus the pacemaker installed four months ago.

    My Oncologist doesn’t plan to have me take hormone treatment for the breast cancer due to all the complications I have had.

    Meanwhile, I take it one day at a time. I know several women who have survived breast cancer and moved on with their lives however I have not been able to achieve this.

  17. ” would also like to suggest that medical professionals are not helping when saying something like, this type of condition isn’t all that uncommon for a woman of your age.

    Drives me crazy when things obviously (to me) linked to cancer/cancer treatment are attributed, far too often in a cavalier manner, to normal aging. Not buying it.”

    YES. Just YES.

  18. Nancy, I love you for writing this post! Okay, my turn. First, I was triple negative, so I never went on any hormone inhibitors, but the fatigue has been and still is unbelievable. I’m sure those pills make it worse, but chemo alone left me a mess. I had quite a writer’s resume before cancer. I can hardly believe I haven’t been able to finish one book afterward. I have 3 in various stages. True, I’ve had to work outside the home, working 40 hrs a week for most of my recovery, which is why I’m completely burned out now, although not working so many hours anymore, thank goodness.

    I’ve always loved dance, but can’t do it much anymore, at least not for long before I get overly winded. The writing… I feel like I’ve lost a big part of me because I have no energy left to focus. I did okay for a while. Now I don’t blog consistently, let alone work on a book. I hope I get that back since my life has destressed quite a bit since my move.

    The hair, the eyelashes, arrrgh!!! I can work with them, but you can see my scalp through the strands if you’re taller than me, and at 5’1″, most people are taller than me. Being small boned, I was borderline osteoporosis before diagnosis. Now I’m full-blown. The neuropathy is mild. Most days I don’t notice it, but there are days, and then there are other days…

    I don’t begrudge those who have found themselves because of cancer and discovered new meaning in life, but I didn’t need to find me because I already had me. I’ve always had a rich inner life and never cared for the superficial. Cancer took so much from me. I admit, some days I feel sorry for myself. Cancer just sucks and no one but other patients really can understand why, after all this time, it’s still an issue. Thank you, Nancy, for this post. Sorry that my comment is so long, it could’ve been a blog post. xoxoxo

    1. Eileen, Oh my gosh, it takes me forever to finish a book these days. My concentration hasn’t been the same since chemo. I’m sorry your love of dance has been impacted, that’s a shame. You’ve mentioned before here and on your blog about your hair and lashes…Ugh, right? I didn’t know you have osteoporosis. Are you on meds for that? There are days and then there are days, yep. Same here. And yeah, don’t get me started on the new and improved post-cancer dx BS. Cancer sucks. Period. That’s my story and I’m sticking with it. And none of this means we are not grateful. Thank you for “getting it” and your comment is perfect. Thank you for chiming in.

  19. Brain fog. If I could get past the fatigue, pain, swelling, lack of sleep, neuropathy, hot flashes and just plain exhaustion, I would still be hit with the fog that has me getting off at the wrong exit, not remembering how I got there in the first place, leaving the Baby at therapy and forgetting the basic concepts of my job let alone passwords, procedures or performance. My second stint of long term disability is making me realize that being an attorney with breast cancer is not going to be as easy as they would have you believe. But I have 2 little ones and I’m doing it alone so there is no option but to persevere. For them. I have to get them to 18 and out of high school.

    1. Erin, You didn’t mention where you’re at in treatment, so I am hoping things improve for you with time. Regardless, with all you’ve had and still have on your plate and doing it all alone, things will not be easy at all. I hope you are able to carve out moments to focus on yourself. Good luck with everything. I appreciate you taking time to comment here.

  20. My collateral damage at the moment is that a mysterious infection has invaded my breast. I’ve been on IV antibiotics for 5 weeks now, with one more to go. If it doesn’t clear up, I”m back to body mangling surgery where they’ll need to cut a muscle and skin from my back. On a postiive note, my cancer (I’m stage IV) is under control for the time being. Always something with this disease.

    1. Liz, I hope you’re infection is clearing up and you don’t have to go the surgery route. Very glad to hear your cancer is under control for the time being. And you’re so right, always something with this disease. Thank you for sharing and good luck with everything.

  21. Brain fog, fatigue, obesity, leg and joint pain, and lack of sleep from issues listed. Plus my new “thing”. My new thing is pain and tingling in my which started in my left side of my chest but which now extends into my left shoulder and neck. The tingling feels like a “tens” treatment if you have ever had one of those, and the pain feels like stress pain or a “crick”. My doc thinks it stems from chemo and or radiation on that side. We started with muscle relaxers which didn’t help. Now we are trying a nerve pill. The kind designed to settle the actual nerves in the body. No help from either. Soon I will have some kind of scan to look inside the shoulder, but I don’t expect that to show anything either. It will just be one more chronic thing, I believe. I don’t want or need “one more thing”, thank you very much. I a grateful that I can do all I do. I just returned from a 7 day cruise. Had a great time, but the plan trip home left me with swollen feet that looked and felt like painful blobs. What do you do, but keep on keeping on.

    1. Janet, I am sorry to hear about all your issues. I also have shoulder, neck and arm issues. Seems it’s always something. Good luck with your upcoming scan. Keep on keepin’ on, that’s what we do. Good luck on all fronts. Thank you for sharing.

  22. Oh could I relate to this post. Last year I went from osteopenia to osteoperosis and now I need to see another specialist. My hair is thinning fast. This summer it was falling out onto my black computer keyboard. Depression caused by the meds and for which I am now on anti-depressants.

    Thanks for the opportunity to rant. Usually when I mention anyn one of these things and how frustrated I feel the response is, “I’m sure it will be fine…”

  23. This breast cancer club really does suck, doesn’t it? At least your wonderful rant makes us all feel we are not alone. As for myself , 4 years from diagnosis I am still remarkably happy to be among the living when I thought that would not be the case. Neuropathy, lymphedema, random pains in numerous places, alien hair and a nearly unrecognizable body in the mirror are all things I have learned to live with and even ignore most of the time. Thankfully I am retired so the extremely reduced energy level and lingering chemo brain are also manageable.
    The thing I have the hardest time with is the loss of my husband who died a year into my treatment. I will always blame the stress of my treatment as contributing to his heart attack. Life does go on though. Did I mention that I am glad to wake up every morning and try to live a purposeful life?

    1. Jackie, It sucks for sure. I am very sorry about your husband. That is awful, but I hope you don’t blame yourself too much. I think we are all glad to wake up and try to live purposeful lives. Thank you for reading my rant and again, I’m sorry for your loss. Thanks for sharing.

  24. Collateral damage—Surgery for attempt to remove Stage 4 tumor went haywire and I ended up on trach. Hole didn’t close up after removal due to being on chemo. Couldn’t surgically repair for a year until chemical was stopped so it could heal. Lived with a hole in my throat for a year. Also the second time I lost my hair, every piece on my body, my eyebrows didn’t come back. It’s only hair they say but without eyebrows i look like a scary clown. Also got glaucoma from all the steroids. Had one laser surgery to release pressure. Will need more. Heart damaged from herceptin. Now on heart medicine. Tumor crushed my lungs. After tumor shrunk the left one won’t reinflate. Now on oxygen 24/7 because my heart was racing to make my lungs more productive which wasn’t working. Bone marrow has decreased due to chemo. Most noticeably in jaws. Due to chemo from Stage 3 cancer got 6 root canals and crowns. After treatment for Stage 4 the roots of teeth with root canals are rotting because no bone marrow so teeth must be pulled. Jaws now are starting osteonecrosis. Bone is dying from fasamax I took with tamoxifen for 5 years. It was suppose to prevent bone loss but later caused bone to die. When in Hospital for Stage 4 tumor removal attempt I was bedridden for almost 3 months. Lost all control of bodily functions. Bladder control came back after 3 years, yes years. But sphincter muscles are nonfunctional now. Control bowels with medication now. Surgeon has recommended a pacemaker for my bowels. Yes, that’s a real thing, with an external remote control. Not ready to take that step yet. In bed so long with surgery, had to learn to walk again. Took 2.5 years of weekly Therapy to go without a cane. Left leg still doesn’t work right. Neuropathy up to elbows and knees. Can’t tell if I have shoes or socks on without looking. Ugh. I can only type one finger. I can’t feel my fingers so never know if they’re hitting the keys so must watch each letter. So coupled with extreme fatigue, I had to retire from my perfect job at age 57. They opened my chest to try to remove mediastinum tumor but I bled out so closed me up. Because of compromised immune system, everything got infected and antibiotics were ineffective. Had to remove sternum and ribs that wouldn’t heal. To provide protection for heart since no sternum, another surgery was done to take my stomach muscles to cover my heart. Recovery was long and rough. But I’m here and know I should feel blessed. It’s just some days it’s easier than others.

    1. Debbie, Good heavens, you’ve been through a lot. I’m sorry about all the collateral damage and of course, some days are anything but easy. Good luck with things and thank you for sharing.

  25. Nice post and interesting comments.
    My top three complaints are fatigue, fatigue, fatigue. Had to quit my full time job as a radiologist after I started on AI. Could no longer spend 12 hours a day reading cat scans, MRIs, etc. I do work part time and have PTSD when I read scans on breast cancer patients with recurrence.
    Musculoskeletal issues are also really bad. I went from a super active, very fit and healthy 54 yo to a stiff old lady overnight. Had to adjust my workout routines and do specific exercises targeting my joint problems but it really helps. Takes me an hour and a half every day to s it all but it manages my pain and enables me to stay on the AI.
    Collateral damage of decreased bone density was a blessing since I’m now on Prolia which has been proven to help prevent bone mets! Yay!

    1. Dino, I’m sorry you had to give up your full-time job. I have heard that certain bone strengthening meds possibly help prevent mets, but not sure if it’s actually proven to be true. I do not consider my zapped bone health to be a blessing. But good for you for looking at yours that way. Thanks for sharing about your collateral damage.

  26. I just found your blog, and will have to tuck in and catch up on some good reading! Myself, I just blogged about the Collateral Damage of Cancer

    I’m still recovering and changing every day after 8 months of surgery, chemo and radiation for Triple Negative Breast Cancer. For me, the greatest loss is my brain. The fog, the short-term memory loss, forgetting names. Not sure how I can function in my job when I go back. I mourn the woman I was.

  27. Hello Nancy,

    “Normal” people do not want to discuss cancer, or brush it off with the commonest of cliches or moralisms, so it is refreshing to hear honest talk from people who know what it is like in this strange alien land.

    Unbelievable fatigue, cognitive impairment, fat (partly due to meds), and several heart conditions: congestive heart failure, atrial fibrillation, and sleep apnea.

    Because of the fatigue I must now choose between eating or getting dressed, between going out to get some needed social contact ( I am a widow with no family) and cleaning my bathroom, between exercise or going to medical appointments.

    And the costs! Of additional therapy or medical devices or or medications or doing things that keep my spirits up. Like travel. I could sit at home alone, or I can sit on a bus with happy people and see fascinating things. Like concerts. I find music a solace.

    Pace of life. One little thing and I must rest. It takes so long to do anything. Decisions are hard to make. Finances give me a head ache.

    It is so good to know that others understand and “get it”. Somehow that helps immensely.

    Thank you so much, Nancy.
    Honey Bee

  28. Breast cancer, the gift that keeps on giving! I do feel that after “active” treatment is complete, our culture has determined that it’s behind us and it’s time to move on. I mean really, they cut off my breasts, inserted two odd s jelly and injected me with a toxic substance…so this part ain’t nuttin!
    I just don’t think that people can see what you’re going through, so it kind of doesn’t count.
    I found that treatment was easier, quite frankly. There was an attack plan and I put my head down and plowed through. Now there’s….this????
    I keep telling myself, really “this” is better than no this! Hot flashes, vaginal dryness, can be moody (can you tell??? lol), fatigue, bone loss, hair loss. And let’s talk about HAIR! So funny that friends are more obsessed with my hair than I. I have come back completely gray, to color or not to color????
    I keep thinking about my implants, all lump and really much bigger than I wanted. When I lose the weight, maybe I will replace them? Maybe that’s when I’ll get the tattooed nipples? Until then it’s on hold. BRB grabbing some cheese!
    That little white pill, that I won’t give up!
    So yes, Nancy, you surely hit a note here! Thanks for your smart honest blogging!

  29. Just found this post today, and I hope this won’t depress anyone, but I’m almost 15 years out from treatment and it seems like I feel worse every year. Constant bone pain, osteopenia in my hips and neck, developed panic attacks during chemo and only got those under control last year, zero energy, lose things constantly, random neuropathy attacks that start in my arm and then start zapping me in other places, lymphedema that seems to be spreading through my whole body leaving hard, painful masses of fluid you can feel, weird eyelash growing cycle where I go from some to almost none, fatter than I’ve ever been, and my feet have never recovered from taxotere. My ankles are extremely swollen at all times. I’m 5’2 and loved wearing heels, that’s completely out now. I’m not in orthopedic shoes yet, but I wonder if it’s coming. I plan activities around how much walking will be required, and I just turned 50. This is how I thought I would feel around maybe 70 or 80. Finally just gave in and started taking pain medication in order to function better, and of course that causes concerned, raised eyebrows every time because I ‘look fine’ and am therefore assumed to be a pill popper taking them for the fun of it. I really don’t care any more, no one seems to have a solution for any of it, and I’m tired of my doctors just saying ‘hmmm,’ while I limp around in constant pain. Primary care doctors have minimal understanding about collateral damage from cancer treatment. The general public has even less awareness about it. I’m definitely not ungrateful or prone to whining, I know this is the price I had to pay to still be here, I just wish there was more awareness about long-term side effects. They really suck 🙁

  30. Thanks for your post! I relate to so much of it. I keep telling people that I’m angry but I doubt have anyone to be angry at so I just keep it in. I have neuropathy, lymphedema, chemo brain, fatigue, lack of energy, weight gain, vaginal dryness. I’m never going too be the same person and at 46 that is really hard to swallow. And I feel like a ticking time bomb. There is no way to know how much cancer is still lingering around. I was diagnosed with lobular two years ago, stage 2b and was as aggressive as I could be with treatment. But it’s hard to detect

  31. Thank you for re-posting this one – it’s so good. And allowing people to rant. There are a few things that I live with that I was not expected: my inner thermostat is wonky; I wake up with aches; and osteoporosis. I’ll start backwards from that list. i was borderline osteopena before I got cancer, but chemo caused my bones to ‘look like Swiss cheese’ according the the oncologist after a bone density test. The good news about it was that I could take a medication that is meant to help bone loss AND fights left over cancer radicals that can go into the bones. So I took that for as long as allowable (bone drugs are scary things), and now I’m on another one – I don’t know? for the rest of my life? No one tells me. But, I did fall and break my arm (I have horrible balance issues, made worse by cancer), and the bone doc was very matter of fact about it all as I sat there freaking out about my bones. “Breaking a bone is breaking a bone. Treatment is not different for a person with osteoporosis.” Oh! also, the new bone medicine does not allow any dental work to be done one month before the injection, or one month after. Okay, then. Waking up achy was something I did not expect to happen and no one told me about. I was one of the lucky ones on Anastrozole; no aches. Then I got put on Lipitor by a cardiologist and WHAM – instant, horrible achiness. Now I take Turmeric which seems to help. But not every day. And I wonder if it’s just because I am getting older and this happens, or am I getting cancer in my bones. I try pushing it out of my mind. Finally, my innter thermostat is way off. I didn’t know that this happens to chemo patients until my aunt sent me a hand knit scarf and I asked someone why the old lady was sending me these things. Caps, I got, but scarves? sweaters? then I start to get cold when no one else was. To this day – almost 5 years after treatment – I carry a shawl or jacket because when I get cold, it is freezing.
    As you said, Nancy, I have a lot to be thankful for. But sometimes I get so mad at medical people for not telling me what to expect. I am not stupid, I am not demented. But I don’t have a M.D. and I don’t even know what to ask!

    1. Linda, You have had to deal with so many medical issues no wonder you get mad! As you’ve commented before, we all need to be our own best advocates, whatever that means to us in our own particular situations. I know what you mean when you say sometimes you don’t know what to ask, as do most of us, I’m sure. Thank you for sharing. I understand.

  32. My heart has been damaged by past chemotherapies. Instead of being on immunotherapy – I’m on heart medicine because my heart isn’t working good enough for immunotherapy. My fingers and toes get numb. My body is full of scars. My jaw lights up during bone scan because my current meds might be giving me osteonecrosis. Google it – it’s bad. I’ve lost most, if not all, of my sex drive. I have cancer in my bones.

  33. The title says “Part 1.” Is there a Part 2? I have been looking, but haven’t found it.

    By the way, your blog has been extremely helpful for me. It is what made me realize that I am not going crazy, it’s chemo brain. And I’m not the only one in the universe who struggles with fatigue and stamina issues that magically appeared post-treatment! Using your blog as a jumping off point, and following links, I have learned so much! And I’m probably going to be looking for a new oncologist–mine is just glancing at bloodwork and moving on. If I ask him a question, it’s obvious that he doesn’t want to take the time to discuss it.

    Please, keep on writing your blog!!

    1. Ellen, I have yet to write that part 2. Sorry. I will get to it. Eventually. In Part 2 I want to address things like cancer’s impact on careers, relationships, finances, mental health – those sorts of things. Thank you for your kind words about the blog. Glad to hear it’s been helpful.

  34. Thank you for writing this! I saw many things written about while you are going through cancer treatments but now as much about after. I am grateful to be able to say that “I am still here” but I am not the same. I had 3 lumpectomies so I still have my breasts but I am very definitely lopsided. And the hair! I thought it would grow back but I am always trying to cover the bald spots and I have a wardrobe of hats that I never needed before. My lack of hair bothers me, a lot. The worst though is my feet. The bottoms of my feet ache nearly all the time. If I am on my feet very much during the day, and sometimes that is just a shopping trip to get groceries, when I go to bed it feels like someone is beating the bottom of my feet. I only wear shoes with really good support but that doesn’t always work. There is more like sometimes my fingernails ache like they are too tight and my toenails never completely grew back after the chemo. I take anti-depressants now to help me cope at work and just life. I am a project manager and some days are rough when the deadlines are demanding more from me than I can give. But I still take that little white pill in the hopes that the cancer doesn’t come back.

  35. How about loss of cognitive function? I was forced to retire–one month into a new school year. Not a great time for a teacher to retire. But I taught kindergarten, and besides just not being able to keep up physically, having the prepping and planning take about 3x as long as it used to, not being able to think on my feet, forgetting was the biggie. Forgetting what day of the week it was. There was one scary incident–nothing bad ended up happening, but the fact that I had put 5 year olds into a situation where it could have, was sobering. I knew, deep in my heart of hearts, that I was not doing right by the kids. But then HR got involved, and, though I would have gotten there on my own in another couple of weeks, I was forced to retire, in the most painful way I could have imagined.

    My doctors are having me go for a neuropsych eval due to all the changes in my cognitive functioning. Since dementia runs in my family, early onset dementia is not a far-fetched notion. At this point, I am hoping and praying that things don’t get any worse; that it turns out to be “just” chemo brain. At least that, hopefully, will not get worse (unless I have to go thru chemo again).

    I was encouraged reading about a woman with metastatic cancer whose IQ had dropped 20 points, but was able to regain all but 5 of those points thru speech therapy. However, even if I get those IQ points back, I can’t get my teaching job back–one of the conditions of retirement is that you can’t go back to teaching full time. And with my reduced stamina and endurance, there are few prospects, especially at age 56, of employment out there that would work for me. Not to mention ones that would compensate me at the level I had when I was working, with a master’s degree and quite high on the seniority ladder.

    In many ways, I have it easy compared to many cancer survivors. I recognize, and am thankful for that. But I resent the hell out of what cancer has taken from me–of the neverending achiness and lethargy. I miss food tasting good! Nothing ever tastes as good as I remember it once did, and there are many things I can’t even put in my mouth anymore without instant nausea. And they change from day to day–often I don’t know this until I have already put something in my mouth. My choices are to spit it out, or try to swallow it, and risking my throat just closing off, or my stomach instantaneously sending it right back out.

    The change in my mental processes has affected the way I interact with people. Frequently, the message I think I have sent, and the message people receive are vastly different. This has created difficulty in my professional life (when I had one), and with my family, as well. I have pretty much lost my relationship with my youngest daughter–at least for now–due to my low frustration tolerance and difficulty choosing words that get the point across, yet are not unduly harsh. I do a lot better when I can communicate in writing, but sometimes you have to talk.

    It’s sad to say that I have found it encouraging to read about other women with severe “chemo brain–” it gives me hope that what I’m dealing with is chemo brain, and not early onset dementia. How sad is that? At this point, I have no idea what I am going to do with the rest of my life. I am thankful that I still have it, for sure, but I’m faced with the daunting task of reinventing myself with the function and skills, both mental and physical, that I have left.

    1. Ellen, I’m sorry you had to retire early and that you dealing with significant cognitive issues and relationship issues as well. It’s good you are going for a neuropsych evaluation. I hope you get some answers and assistance in figuring out where to go from there. Thank you for sharing. Good luck with everything.

    2. Hi Ellen,
      I know you commented over a year ago but I thought I would take a shot and reply anyway. Your post resonates with me SO much, as I am experiencing eerily similar cognitive function issues. I was also a teacher but no more. No idea where I go from here. I am 2 years post chemo (AC + Taxol) and have what my daughter and I lovingly refer to as “swiss cheese brain”. I had surgeries and radiation as well, but I believe the year of Tamoxifen also contributed greatly to my cognitive decline. Oncologist dismissed my concerns, made me feel ashamed almost, and would not treat my side effects! This went on forever. I am no longer participating in hormone therapy. Perhaps the “fog” part has lifted a bit for me since ditching the Tamoxifen…but I am simply not the same. My brain is not the same. I honestly thought I was losing my mind at one point. I too have a family history of dementia so I share your concerns there. I even compared whatever this is, to what I imagine dementia must be like?
      I am curious as to how your neuropsych eval experience was? Like what was the process? Is this something an Oncologist, or PCP, or Psychiatrist refers you for testing? Did it help in finding some answers for you? I hope so, be well, and thank you for sharing this!

  36. I hear the line “women of your age” a lot whenever I complain to a doct about feet tingling, cramps, etc. I hate that.
    My biggest issue following treatment is Osteoporosis. I was close to ostepena when I started treatment, knew it. Following treatment my doc had me get a bone density test and it revealed that my bones were ‘swiss cheese.’ (her words). The good news – to her – was that she could treat me with a medication that also fought off free radicals. Now, almost five years later, I’m getting shots instead of infusion treatment (and, oh, by the way, the shots cost over $2,000 every six months and insurance pays about half), and I have had some bone ‘regrow’, but it’s an ongoing worry. AND no one told me that my Anastrozole can cause bone loss untilt he tech doing the latest bone density test told me. When I brought it up to the cancer doc, she said, “Well, you have to weigh the pros and cons of all drugs.” There are lots of cons for each med you take for cancer or otherwise. I did not think my bones would be so affected by chemo.

    1. Linda, I hear that age comment too – also hate it. Bone health is one of my biggest issues too. Women should be better informed about the potential side effects of these drugs other than just reading the long list of side effects that is included with your filled prescription. Thank you for sharing.

  37. Thank you everyone for sharing and your heartfelt honesty. This is not a club that anyone wants to belong to. For the past two to three years, I have had aches and pains and fatigue that I thought were the result of the cancer treatments for my breast cancer in 2011. Either that, or I was aging ungracefully. It was easy for me and my GP to explain it away. It turns out I have metastatic breast cancer, diagnosed in December of 2018. Apparently MBC symptoms, particularly bone mets, can be confused with treatment side effects or aging. Who knew? So please don’t accept that explanation from yourself or your doctor that your aches and pains are just a normal part of aging. Trust your instincts, insist on further testing. Now, I am really fatigued from coping with the psychological effects of dealing with a terminal diagnosis and the side effects from all the drugs I am on. I don’t know how to find the “me” in all of this, especially as I thought breast cancer was behind me. Now, once again, I am being defined by my disease. That is the worst collateral damage of cancer and its treatments: people see the cancer first and forgot who I once was. Cancer has taken so much from me: my career, my peace of mind, my future with my family, my husband and sons’ joy and sense of security and eventually it will take my life. Yes, cancer sucks!

    1. Janet, I’m sorry to hear about your recent metastatic breast cancer diagnosis. You’re right about a person listening to her instincts. It is important to self-advocate and push for further investigation if your instincts are telling you to do that. Cancer is a thief in so many ways. Your mbc diagnosis is very recent and you have a lot to process. That alone must be exhausting on so many levels. Good luck with your treatment. Thank you for sharing and yes, cancer sucks.

  38. I could have written this!!!
    I have been BC free for 5 years and still reminded every day of that day (11/5/13) often!
    One difference, I’m a 54 year old single woman…you have your hubs, try dating! Ohhhh the stories

    1. Cara, There are constant reminders for me. You’re right, I have my hubs. Dating must be such a challenge – to put it mildly. I bet you’ve got stories! Thank you for reading and commenting.

  39. Does anyone live in the Columbus OH area? If so I would love to help. I can do housework, laundry, yard work….Free of charge. Let me know!

  40. Thanks for another great article . Pain n tiredness are constant for me . I get tired of hearing about “being positive and fighting and battling”. I am greatful to be here as I have been living with mbc for almost 2 years and have seen many pass of this while I have been living with it . I do feel that a lot of days I m just taking it one day at a time , it’s never going to be the same .

    1. Deb, One day at a time is all any of us can do. Pain and tiredness are difficult to manage, I’m sure and yes, hearing people tell you to just stay positive isn’t that helpful. Thank you for sharing. My best to you.

  41. I was first diagnosed with breast cancer in Oct 2016 bilateral masctetomy in Nov 2016 did the chemo and radiation treatments wet back to work thought things were good then in Aril of 2019 had my routine scan and BAM!!! The brick wall hit me .my cancer had metastasized to my lymph nodes started chemo wasn’t bad on 2nd scan after 2nd diagnosis it wasn’t working know I’m on a new chemo drug and a immune therapy drug they are working. I completely understand the lasting effects had to quit my job which I dearly loved loved, and the bald doesn’t bother me it is coming back a little bit I was blessed the first time and this time not having been the throwing up sick I just don’t have a good appetite. I have emotional break downs this time I can’t do things as well as I use to such as house chores, but I do have two family members that have experienced cancer too my Mom and my brother so when I make comments about side effects they understand, my Mom has been cancer free for almost 20 years she still has problems. Thanks for your rant it helps to know that other cancer fighters get me and I don’t start think I’m going crazy. May God truly bless you!!!

      1. There’s just too much, Nancy. Thin hair, thinner eyebrows that I mostly pencil in, eyelashes I’ve given up on putting mascara on. I used to take more pride in how I looked when I went out, now, not so much. Neuropathy in my feet, but gabapentin helps. More pills than I’ve ever taken in my life. Pains in places I’ve never felt before. Insomnia. Pills for that too. Implants in, implants out. The never ending worry of a recurrence. Less of a worry now, these days more of an eventual acceptance. The loss of breasts that I loved and needed, the fatigue, the loss of memory. However, I am grateful for a wonderful family, more good days than bad, best husband ever, best kids ever, best dr ever. So, I guess it’s a wash! Hope for the best, prepare for the worst. That’s our motto. That’s our collateral damage!

        1. Donna, Yep. You summed it up nicely. I struggle with mascara (among other things) these days. Just can’t seem to get it to go on decently anymore as my lashes are so sparse now. Since the pandemic, I’ve probably applied it a handful of times. Those other things you mentioned – I hear you on all of them. Grief and gratitude certainly can and do co-exist. Your motto is spot on. Thank you for chiming in regarding collateral damage. Maybe someday treatment won’t cause so much of it.

  42. Where to start? I was lucky enough to keep my breasts, my favorite physical feature, only to wake up to having them permanently changed anyway. No lumpectomy, just lymphedema in my breasts causing them to now (and likely permanently) be noticeably even. I developed lymphedema in my left arm a week and a half after surgery and resent the sleeve and glove I will wear until I die. I have a bald spot right in the front of my head on the top. Impossible not to see. The fat is unbearable, especially since everyone thinks I should have lost weight on chemo. Don’t even get me started on the vaginal atrophy and the nightmare that entails. I’m sure there will be more, but I’m OT quite two months post surgery and still undergoing radiation and HP. We’ll see.

  43. The collateral damage is the life that I worked so hard for. It’s like all of the nights that I spent studying in college and the days I spent working my way up the corporate ladder were all a waste of time. I am no longer able to work, my life is dictated by cancer – it’s many appointments for treatment, all of the pains that I now have, the neuropathy in my fingers and toes, the constant fight in my head to not go down the winding road of depression and surrender. I now feel like I’m collateral damage.

    1. Angela, I’m sorry you are dealing with so much collateral damage. It can’t be easy. I hope you have a good support person or two (or more) to lean on. I wouldn’t think of all those accomplishments as a waste of time. They are part of who you are too and though the trajectory of your life has been drastically altered, you are so much more than cancer and the collateral damage it caused. I hope some of your issues improve and/or that you get the support you need and deserve to deal with them. My best to you. Thank you so much for sharing.

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