Are the long-term risks of cancer treatment under-discussed?

Are the Long-Term Risks of Chemotherapy & Other Cancer Treatments Under-discussed?

One of the great things about blogging is reading blog posts other bloggers write. It’s how ideas and opinions are exchanged. It’s how connections and friendships begin. It’s how conversations get going and sometimes snowball into bigger discussions across the blogosphere and beyond. Reading what others write always gets me thinking.

While recently reading the words of Dr. Elaine Schattner who writes Medical Lessons, a blog from the perspective of a medical professional who also happens to be a breast cancer survivor, my mind was immediately taken back to a day two years ago when my oncologist recommended chemotherapy.

Oncologist Number One, Dear Hubby and I were huddled together in one of those typical exam rooms with the buzzing florescent lights and poor ventilation discussing and analyzing blue, green, red and yellow colored bar graphs depicting how doing or not doing chemo added percentage points to my statistically based odds of being around in five, ten or more years.

It was a very odd topic of conversation.

After finalizing our decision to go ahead with chemo, I distinctly remember Dear Hubby looking at Oncologist Number One very seriously and asking him, “Is this the most aggressive treatment path possible for fighting Nancy’s cancer.”

Oncologist Number One nodded and said, “Yes it is. We are choosing the most aggressive regimen available to us based on the pathology of her type of cancer.”

I think that’s probably about the time I lost it, stood up and headed straight for the Kleenex box.

Of course the three of us went on to discuss the usual side effects to expect like hair loss, nausea, flushing, mouth sores and the like.

However, the potential for serious long-term side effects was not discussed.

This gets us back to Elaine’s post in which she asks the question, “How much do you want your doctors to say about risks of treatment?”

This is a great question.

I must admit, two years ago I was pretty much focused on the immediate future and the immediate side effects to come. I wasn’t looking too far down the road.

Was I worried about feeling nauseous and having my hair fall out? You bet I was.

Was I thinking about potential heart, liver or kidney damage or other possible lingering side effects such as neuropathy and cognitive issues which might affect my life down the road? Not so much.

As I’ve said before, cancer forces you to deal with the here and now. The fallout, or domino effect, often comes later.

I do remember Oncologist Number One t talking a little bit about heart damage risk. I remember this because before beginning chemo, I was required to have an electro-cardiogram (very painful procedure less than two weeks after a bilateral, btw) to see if my heart was strong enough to even begin chemotherapy, in the first case. I’m pretty sure this is standard procedure for certain drugs.

Despite being “sort of informed” about the potential heart damage risk, I don’t think this really sunk in for me, and I’m not sure it does for most patients.

I don’t remember any other long-term risks being discussed at all.

With Robin Roberts recently announcing she has a blood disorder called myelodysplastic syndrome (MDS), which more than likely was caused by her chemotherapy regimen (entirely different from mine), I wonder if doctors and patients will be discussing long-term potential health risks of chemotherapy (or any treatment) a bit more in depth.

I hope so.

While I certainly do not think a rare case such as Roberts’ should influence others to not undergo chemotherapy or any other recommended treatment, I do think her case brings to light once again how important it is for patients to be given the complete picture about all aspects of treatment, including short and long-term potential side effects.

I also think it bears repeating again that you (or someone close to you) must be your own best advocate on all fronts, including this one.

Never hesitate to ask questions and don’t quit asking them until you are satisfied with the answers.

Of course, some patients want only the bare minimum amount of information. Their wishes need to be respected too, so there’s a fine line here. However, many patients (like me) do want to know as much as possible and I think they deserve to have the entire package, the good, the bad and the ugly, thoroughly explained to them.

Some people say doctors don’t have this much time to give patients. To that I say, “bull****.”

In the end I have to ask myself, would I have changed my treatment path if I had realized at the time the risks were greater than I understood them to be?

Probably not, but that’s not the point.

The point is this: I had a right to know about long-term potential risks and side effects of my course of treatment. So do you.

Do I wish I had delved a bit deeper and asked a few more questions about long-term risks and lasting side effects of chemotherapy?

You bet I do.

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Do you feel the long-term risks or side effects of cancer treatment (of any kind) are under-discussed?

Are you grappling with cancer treatment (of any type) fallout?

Are you a “I want to know everything” or a “tell me as little as possible” kind of patient?

 

 

 

 

44 thoughts on “Are the Long-Term Risks of Chemotherapy & Other Cancer Treatments Under-discussed?

  1. Great post – with lots of discussion points Nancy! This once again leads me to a plea for a standard Follow-Up Care Plan for all cancer patients transitioning from treatment. This plan would address the chronic effects of cancer (pain, fatigue, premature menopause, depression/anxiety), monitoring for and preventing late effects like osteoporosis, heart disease, and second malignancies, and promoting healthy lifestyles.

    1. Marie, You raise a terrific point/issue – the need for a standard follow-up care plan or as some call it a survivorship plan to deal with the long-term issues. I think we’re taking steps in this direction, but tiny ones. The risks and long-term side effects need further discussion on both ends of the treatment time-line spectrum. Thanks for sharing your thoughts, Marie.

  2. I’m a “tell me everything” sort of patient, because if you don’t tell me you can bet that as soon as I get home I’ll be on the internet checking it all out, including looking for confirmation that the treatment offered is the best for my issues.
    My doctors touched on the long term side effects, but mostly the more serious ones like heart issues, the risk of getting a different cancer, those type. I’m dealing with lesser long term side effects from my treatments, pain, fatigue, neuropathy, and cognitive issues, all of which are dibilitating to the point that I couldn’t hold a job any longer. I know these were probably barely touched on at my initial appointment, in my head I figured they were all minor and could be dealt with, and I understand that the docs don’t want to “scare the heck out of you” at the beginning of treatment, and knowing wouldn’t have changed my course of treatment. I wish that there was a survivorship program that provided individualized help for dealing with my residual side effects.
    Just for the record – all of my doctors have been very supportive and have never told me it’s all in my head, etc.., they’ve helped me in many ways, we’re working together to help me deal with my side effects. So even though I don’t like living with these side effects, I’ve been blessed with a wonderful support team, both medically and in my friends and family.
    And I totally agree with Marie!
    Linda

    1. Linda, It sounds like you’re a lot like me then as far as what kind of patient you are. I understand, too, that doctors don’t want to scare the heck out of people before beginning treatment, but still I think patients deserve to hear about possible serious side effects. You’re right, a survivorship program would be helpful. This issue is being discussed more and more. I’m glad your doctors have been so supportive, Linda. Thanks for your insights.

  3. Well said Nancy. It’s been 8 years since my chemotherapy treatment and I cannot specifically remember discussing what the longterm “effects” would be. I remember more of a discussion of why I should do chemo to be here in the longterm. Your article and recent events makes me question why a 30 second commercial has the responsibilty and the time to disclose possible short and longterm effects and yet we are considering whether or not our doctors should have that same obligation when prescribing meds to us.

    1. Angela, You raise a very good question about those 30 second commercials which very quickly spell out serious side effects to watch out for. Don’t we deserve that and a whole lot more when our own doctor is prescribing meds for us? That’s very interesting isn’t it? Thank you for raising that question.

  4. Nancy,
    THIS is a great discussion and one that really needs to be discussed. Another thing that Elaine is doing? Idelle Davidson dug up an ASCO “template” available to any member oncologist setting out the potential side effects from chemotherapy. GLARING omission? Possible memory or cognitive issues. Since Idelle wrote a real book and I wrote “the” book (joking here) on those cognitive issues, I suspect ASCO will be pushed to modify the form. The debilitating effects (long term, late term. later onset) of cognitive difficulties are worthy of their own line…. not just something to be handwritten under “other” ….

    I think we should know…. and I think if WE can’t listen at that moment in the doc’s office, someone ELSE should be gathering all of the information to see exactly how much they might “spoon feed” to us when we are in the comfort of our own homes rather than in the sterile environment of the exam room… in a gown, sensing you are backing up the entire schedule with questions….

    GREAT discussion (as usual.. as always…)

    xoxox

    1. Ann Marie, Yes I saw Idelle’s recent post on that. I definitely think cognitive issues should be placed on the potential side effects list. I only learned about cognitive issues as a potential side effect after reading a book about chemo during my treatment. At first I thought chemobrain was kind of a joke as the term sounds rather condescending or trite, but no it’s certainly no joke is it? Thanks for adding to this discussion.

  5. Nancy,

    This is such an excellent post on a thought-provoking topic. It is also a huge hot button for me…this whole business of lack of informed consent. Your meeting with Oncologist 1 reminds me a lot of my meeting with my oncologist. At the time of diagnosis, as you know, your mind is reeling and you’re so busy trying to improve the odds of trying to stay alive, that questions may not readily come. And the focus is just on how to stay alive, not the long-term implications of treatment.

    I do believe in informed consent and know that long-term effects of cancer treatment are under-discussed. It makes me angry.

    That being said, it’s so hard to prove whether an illness years after chemotherapy has been caused by chemo. That’s what’s so hard about this. For example, my friend has leukemia, but she never had chemo prior to her illness. Had she had chemo for breast cancer, say, years before, we might all be suspicious that her prior treatment might have caused the leukemia.

    Finally, I try hard at this point not to think of the long-term effects because it would drive me crazy. However, it’s always in the back of my mind — and sometimes foremost in my mind.

    You are right about the blogs getting us thinking and learning. I have learned so much from your blog, and it is one of my favorites. Great posting that needs to be read by doctors and patients alike!

    1. Beth, I do realize that at the time of treatment the aim of course is to think about the action we need to take here and now to give us the best chances for long-term survival. That has to be the primary focus. Still quality of life can be impacted by treatment and informed consent means just that – being informed. Patients need to know the complete picture. I call it the “good, bad and the ugly” meaning the benefit of treatment, the less serious side effects and the potentially serious side effects. Thanks for your insights and for you kind words about my blog, Beth.

  6. I agree that all patients need to know more about long term effects. One that I didn’t see mentioned was peripheral neuropathy. That includes tingling of fingers and toes, loss of grasp, sensations of walking on cardboard. I know several survivors that have some neuropathy. My own oncologist wasn’t particularly concerned when I mentioned my symptoms to him. And the continued issues of hot flashes are not fun. Hopefully we as a group can convince physicians that changes in aftercare are overdue.

    1. Meg, Thanks for the great comment. I actually have some mild neuropathy issues. I was made aware of that particular side effect, but some people are not informed about it perhaps and they certainly should be. My doctors have never seemed overly concerned with my symptoms either…but they do listen to me. As a group, maybe we can change things a bit in regard to after care issues that linger or crop up. I hope so. Some people really suffer post treatment.

  7. Hi Nancy,
    Thanks so much for extending this conversation. Reading the discussion and comments here provides convincing evidence this topic merits further attention – by doctors and by patients.

  8. In my experience, I think maybe cancer treatment can go on so long that dr’s either forget or get lax on what is supposed to be followup care. For example, my onc made a big deal about needing to do tests throughout the year I would be taking herceptin and even after to look for heart disease, but he only called for the first two tests– before treatment and one three months in. I had to call and ask for (with ridicule from his nurse, “Why do you need that?”) ones at six months, nine months, then three and six months after treatment. My heart function did drop throughout treatment but came up after. After treatment when I would mention symptoms, he would ask me if I had any nodes involved, so I’m sure he forgot my basic stats over the 14 months of treatment. I felt like I needed to wear a button with all the important stuff to help him (or me, really) out. I hate that we have to accept so much risk to effectively treat bc. I wasn’t happy about it at all, but like most of us, I had no choice. Cure Now!! I mean RIGHT NOW!!!!!!! Oh, and I’m a tell me everything kind of gal.

    1. Lopsided blogger, Thanks so much for sharing about a couple of your frustrations. Being ridiculed by the nurse was unacceptable. I’m sorry about that. There is a lot of risk involved isn’t there? But of course, we pretty much do as we are told. Still, it’s important to be your own best advocate and learn about all the side effects and potential long-term risks. I do feel they are at times glossed over and not talked about in enough depth. And I kinda figured you were a “tell me everything” kind of gal too!

  9. Those diagnosed with breast cancer absolutely need to know the skinny about long-term side effects and risks of treatment. While I was told Adriamycin/Cytoxan posed a risk, they didn’t scare me. It’s hard to be any more scared than “you have cancer and it will quite probably kill you if not treated.”

    I also think I viewed long-term side effects as I do TV commercials for everything from Aspirin to high blood pressure meds: “Could cause nausea, vomiting, diarrhea, headaches and sudden death. Call your doctor if you experience any of these symptoms.”

    That said, I developed A-Fib/A-Flutter, a potentially life-threatening heart condition. Everyone, BUT my oncologist, assured me it was caused by chemotherapy. It took a trip in an ambulance, a trip to the ER and wearing a heart monitor for most of the Summer to confirm the problem. Even then, I still passed out, greyed out and it took three months before they tweaked in my meds.

    If I’d know then what I know now, would I have done anything differently? No. I’m glad I had chemo, and I’ll just deal with the memory loss, neuropathy and heart problems.

    XOXOXO,
    Brenda

    1. Brenda, Your experience sounds scary. I’m sorry you developed those heart issues. It’s interesting you mention your oncologist didn’t attribute your symptoms to chemotherapy. I wonder why that was… Of course you’re absolutely right, knowing risks probably doesn’t change treatment decisions very often, but informed consent means just that. Thanks so much for adding to this discussion.

  10. This is a great topic, Nancy. I agree with you completely that the long-term risks of cancer treatment are under-discussed. In my case, in 1996, I don’t think they even knew what the long-term effects were. I was a guinea pig, and they would just have to see. Most people weren’t living very long, so they were happy just to hope to extend my life by a few years.

    I do grapple with side effects all these years later, side effects that make me a high risk patient when it comes to underwriting an insurance policy.

    I am a “I want to know everything” kind of patient. The more I know, the more I can try to slow down progression or brace myself for my future. I’ve never been a “put your head in the sand” kind of person. Maybe that’s why I’ve lived this long; if I had not gone to the doctor when I first detected a lump, I might not be around now.

    Thanks for the excellent points you make. xx

    1. Jan, Many survivors feel the same way you do, Jan. The side effects often continue on many years later. And then, of course, the more serious risks sometimes do play out as well. Such things need to be discussed before beginning treatment in my view. I would have guessed you to be the “I want to know everything” kind of patient. No surprise there! Thank you for sharing your thoughts.

  11. Nancy – it was the long term cummulative fall out from the conventional hyper-aggressive treatment that informed my decision not to undergo that path. My rationale was that IF I only had a 4% potential of efficacy of treatment, why subject myself to the 100% aftermath and further diminish the quality of life I had left to embrace. It is the long term cummulative effects of radiation that dictate my decision not to be screened as often as my oncologist would like me to. It’s not about her wants, after all. It is my hypervigilince that make conventional MDs absolutely crazy and adverse to dealing with me. THEY do not want to have that conversation. Who’s right? We all are — we can only do what our own personal limits allow us.

    1. TC, I respect you for taking charge and making decisions you feel are best for you, even though it means not following the conventional path at times. I’m sure that is not easy. Each of us needs to determine our own personal limits I guess. That’s why open and thorough discussions about all the short and long-term side effects of treatments must take place. Thank you for sharing your thoughts on this important topic. I really appreciate hearing from you.

    2. TC, I’ve totally pissed off a couple of oncologists because I read the original studies with Tamoxifen and told them their numbers of 50% reduction of recurrences of breast cancer were based on relative, not absolute figures. And when you look at the absolute figures, it takes a stretch to call it 50%. I also threw out the 400% increase of uterine cancer in women who were post-menopausal. One Onc told me if I wouldn’t take Tamoxifen, then I didn’t need an oncologist and left the room! Onc #3 (now 5 years later) doesn’t know anything about using estrogen vaginal creams on ER/PR + patients. She said, “she hasn’t heard of that. ” Yikes. I told her I’d bring in the research studies I’d found. Really. I had to meet with #3’s PA who was condescending and, well, irritating. He said my hair wasn’t going to fall out. It did, in handfuls. He said I couldn’t have a follow up PET Scan to see for sure if the cancer had not metastasized because of money and insurance wouldn’t cover it, because it was not “Standard of Care.” (I’ve come to dislike those words). I asked him what I should look for if cancer metastisizes. He said, he’ll just be asking me how I feel. So, I’m on to oncologist #4 and a Survivorship program that is based more on outstanding research. Everyone needs to be your own oncologist these days, as there are just too many of us to insure the “standard of care” is adequate.

  12. I’ve just yesterday discovered that my thyroid is not performing properly, the results from routine blood work. I finished breast cancer radiation three months ago, three months ago and for my entire life (I’m 68) my thyroid was normal. Now three months after radiation my thyroid is damaged? I was never told about this from any of my doctors and especially my Radiology Doctor. I’m upset and think this should have been addressed. I can’t say with certainty that the radiation damaged my thyroid but it is too much of a coincidence to me.

    Has anyone every heard of of had this problem?

    Thank you,
    Roye

    1. Roye, I’m sorry to hear about your thyroid issues. I don’t blame you for being upset. I’m not sure if this is something that is associated with radiation treatment or not, so I can’t speak to that. Be sure to discuss it with your doctor at your next visit and voice your concerns and disappointment. You deserve to have all your questions addressed. Good luck with things and thank you for commenting.

  13. Hi Nancy and fellow bloggers. Here’s another interesting topic. To answer the questions posed, yes, long-term side effects should be discussed before the very first treatment. I have heard more than once “we think the benefits outweigh the risks”, but after many years of my own survival, I think long-term effects should be discussed. Some that I have experienced are – memory & thinking issues; neuropathy; estrogen-free body issues like dryness, loss of libido and more; cardiomyopathy (heart); low white blood count for years; physical weakness; fatigue beyond any previously known definition of the word; low energy levels; insomnia; and depression. I also understand the point of view that ignorance is bliss and perhaps the suggestion of side effects can make them actually happen. I have been both kinds of patients – from the need to know every detail to the “ah, it’s just like the other chemos, I don’t want to know the gory details”

    Have you ever heard of someone who went through treatment, cancer was gone, then they suddenly died of a heart attack? I have known three people that this happened to, but never heard anyone attribute the heart attack to the chemo. I suspect, but have no scientific proof that chemo kills a lot more people than the medical world is willing to admit. Wow – this seems a little negative and I don’t wish to be that way. Actually, I think that death occurs when it’s supposed to regardless of the cause. No one can avoid death forever, but we can all LIVE the best life possible with whatever challenges we have. I’ve been sitting at this computer all day. I’m going outside to breathe some fresh air and feel grateful for the many blessings in my life.
    Maggie McDee

    1. Maggie, I do not accept the ignorance is bliss concept. I completely believe in informed consent and that consent shouldn’t be given without a full understanding, or at least some discussion, about risks – both short and long term. I agree with you that those heart attack deaths sound pretty darn suspicious. How much risk is a person willing to take? That’s always the million dollar question I guess. Cancer treatment sometimes comes with more risk than patients realize. Knowing risk won’t change decisions necessarily, but knowing risk better prepares the patient in my opinion, for what might lie ahead. Hope you enjoyed that fresh air! Thanks for commenting.

  14. I was told by my oncologist that whatever happens to me over the next five years they caused it from the aggressive TAC chemo I had. However, when I go in with complaints, they say they’ve never heard of it and it’s probably not from the chemo, surgery, or rads. I realize that they REALLY don’t know. So many people under report side effects because they aren’t sure if it’s a side effect or not.

    1. Lisa, I agree. Side effects are under reported for a whole variety of reasons. It’s important to speak up about your concerns, even if there are no solutions. Again, validation itself means an awful lot. Thanks for your comment.

  15. Summary of lost comment.

    I don’t necessarily want to be TOLD everything, I want to KNOW everything and I expect my doctors to assist me in this. I found information everywhere I could, Internet, social media (that’s how I found BCSM – the best source of trusted information around), libraries, talking to people (it’s amazing how many people you know have been touched by BC). Using that info, knowing the sources were trusted, opened up all my discussions with all of my doctors.

    My OncoType DX recurrence score (RS) was 19, low intermediate range, so I chose no chemo.
    If a woman has an RS in the high twenties and must make a more difficult decision about chemo she HAS to know the long-term SEs of each set of treatment options (even if it is one) to make a fully informed decision. Even if that decision is to do whatever the onc recommends. It seems like that is the oncologist’s responsibility as part of ” First, do no harm”.

    Please post.

    Jane

  16. What was NEVER discussed was ‘post chemo pain syndrome’. Sometimes the pain is bearable. Sometimes the pain is unbearable. It just seems like this would have been discussed. During some of the extreme episodes, I felt like a big baby, to hear that nothing was wrong, and to be sent on my way, only to discover, years after the fact that post chemo nerve pain is extremely common.

    1. Debby, I’m sorry to hear about this pain you have. A patient should never be made to feel badly for expressing concerns about his/her pain issues – or about anything else for that matter. Patients want validation. I don’t thank that’s asking for too much in most cases and most patients do not bring up something at an appointment unless it’s bothersome. We aren’t there just to whine. If anything, most patients tend to not share enough. Thanks for commenting, Debby.

  17. Sometimes I feel like there is SO much not being said in those quick consultations. One thing I need to do is learn to get what I want from those exchanges instead of being such a nice patient. As for the long-term effects, I do think they matter. No one told me about fertility options involving freezing ovaries or IVM . . .

    But I really think the question of do we want to know is important. Do I want to know my survival odds with advanced breast cancer? Nope (even though I already know, but stats can change!), since it’s going to do me a whole load of no good. So there’s a give and a take, and I guess the doctors are just as uncertain how much to give or take. Maybe. Or maybe I’m just being the nice patient again!

    1. Catherine, For patients such as yourself, not discussing the possible effect on fertility well, that’s inexcusable and just plain wrong. I’m really sorry this was not discussed with you so you that you could have possibly explored options. It is a give and take for sure. And sometimes patients are too nice. That’s a balancing thing of a different nature. Thanks for sharing your thoughts.

  18. I know there were side effects not mentioned or underplayed, but I think overall my oncologists did do a good job of informing about side effects.

    My medical oncologist said since I am a pianist he would watch my fingers very closely for neuropathy and if needed adjust the treatment schedule. I do have an annoying tingling in my fingers, but I still have feeling and full use. My feet are another story.

    My radiation oncologist warned me about the possible effect on thyroid, although even he was shocked at how much my TSH had jumped when I went for my annual thyroid test a couple of months after treatment. I do not remember being warned about continued cramping even months later in the areas radiated, but maybe he used a more medical term for it.

    I was warned about fatigue from both chemo and radiation, but I was under the impression that it would be gone within a few months after treatment ending, but it seems to be either permanent or very long term.

    I do know a number of other breast cancer survivors whose oncologists were not as open with them about long term side effects or as concerned with after treatment quality of life.

    I believe it is important to balance risks and quality of life. I knew I was high risk (inflammatory breast cancer) so I knew I had few options, but many women with less aggressive cancers feel betrayed when they find they sacrificed quality of life for what turned out to be only a small difference in survival.

    1. Elizabeth, I’m so glad you were well informed and it’s wonderful your piano playing fingers are still functioning pretty well. That’s great. I completely agree with you about the balancing thing. It’s just important for patients to be fully informed and not have side effects downplayed or worse, ignored. Thanks for sharing.

  19. Is there a resource for survivors where we can read about long term risks of the treatments that we had? Do we need to look at our specific treatments and find out what if any long term effects relate to those treatments ?

    I have developed several issues lately that have been autoimmune related. I also have the chemo-brain stuff, tiredness, vertigo, and adnauseum. My friends tell me to get over myself that my treatment was 5 years ago, and I should be past all that.

    My doctor has dismissed me as cured because unless I have a new cancer there is no treatment. I had dcis triple neg, brac1! I have had all the recommended surgeries so I am medically done. This doesn’t feel correct. There should be doctors who treat just survivors. There are enough of us to support a whole new specialty. Just saying.

    1. Janet, What a concept – doctors who just treat survivors. It’s remarkable that some doctors even use the term cured. As to your question, yes, one does need to look at her specific treatments and the potential side effects. Every case is different. I’m sorry you have lingering side effects and that your friends and doctors seem dismissive. You deserve validation. Thanks for your insights.

  20. How about eye sight problems after tamoxifen? Have you experienced such a thing? I have and my doctor told me that it is because of my age (38 )!!!

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