Rejecting hormone therapy
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BCat40---that was a good article, I had not seen that. I am not a researcher but it still seems to be that most oncological practices base their directives to patients by a protocol and in this day and age of corporate -driven healthcare have little or no time to even fathom doing research or collecting data. That is where University based oncologists bring their findings to ASCO, etc. and come up or share guidelines or new theories. I still think that the AI's have been around and used long enough (Tamoxifen much longer) that when they started prescribing these to patients prospective studies would have been looked at. Retrospective studies now would be a chore since many women might have just stopped meds on their own and not even told their oncologists. I know one friend right now who is doing that.
The other huge issue is the huge effect that estrogen has on the cardiovascular system, and these drugs may certainly accelerate the aging process and atherosclerosis. AI drugs certainly plunge estrogen levels and most oncs do not even measure levels? Heck, coronary artery disease is already a future worry for those of use who had left sided whole breast radiation.
I guess in the end it is the long term effects (medically) and the physical effects of tolerating these drugs that are the decision maker and deal breaker. Will be starting the AIs after the holiday and if the effects are horrid, I will most likely walk. I am just now feeling like myself after this 1 year journey. I want QOL.
Moth, you did everything right for yourself. And Beesie, you had a grade 2-3 similar path as with IDC, except I am triple positive. My only second guessing for myself is whether or not I should have just done the BMX. Such a crapshoot for everyone. Being older, I so feel sorry for those diagnosed in their 30-40 or even 50 year old range. Such different decisions.
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Racheldog, I am with you on this. I chose to try tamoxifen rather than an AI because of the cardiovascular and bone thinning risks of the latter, plus the AI's greater overall effects of estrogen deprivation on both body and brain that is well documented in the cited Ganz study. Now of course I worry about the very serious side effects of tamoxifen on the endometrium/uterus and DVT. I have taken a low dose of the drug for more than a month. The SEs so far are not terrible, but they do change how I feel and I'd rather feel fully like myself than a slightly reduced version. My risk of ipsilateral recurrence and BC mortality are not greatly improved by taking an estrogen hormone blocker per the Tufts and Predict tools. My OncotypeDX test score is 8. We all want to do whatever we can to reduce risk but it's not like these drugs eliminate recurrence.
My plan is to continue taking tamoxifen through the end of the year and see how it goes. I will discuss my risk/benefit with both MO and BCS at my December follow up appointments and my other health issues with my PCP.
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Having read through this thread and consulted the three predictor models, it appears that my overall survival would increase by 1-2% if I take hormone therapy. One model indicated 204 days, roughly 6 months. I was pretty much on board with taking tamoxifen. I figured I would tolerate it or I wouldn't. I do have some elevated clotting factors although I have never had a stroke or thrombosis and there is a ton of GI cancer on one side of the family. One thing I do know is that response to medication tends to be highly individual, so I was generally optimistic about taking the drug. Now I am wondering if it even makes sense for me. My oncotype score was 6 and I believe it indicated that recurrence would likely be low but I don't recall if that presupposed that I would be on some sort of hormone therapy. I can manage my way through incidental side effects, but I don't want to up the ante for an equally serious adverse health outcome like additional cancer or thrombosis for an extra 6 months. I also know that these stats are not absolutes in any sense of the word and I don't want another recurrence much less mets. Hard decisions to make.
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Rubytoos, yes, the recurrence risk associated with Oncotype scores does assume that you will be taking either Tamoxifen or an AI.
I don't know how old you are, but whether you are <=50 or under >50 (Oncotype have different risk scales based on these age categories), your metastatic recurrence risk with a Oncotype 6 score will be only 2%-3%, if you take hormone therapy. Here are the TAILORx charts that show risk by score; I have marked in (in green) a 6 score:
A 3% metastatic risk, assuming you take hormone therapy, translates to about a 4.5% metastatic risk if you don't take hormone therapy (based on a 35% risk reduction from hormone therapy). So that's a 1.5% absolute benefit, which matches what you found from the predictor models.
BUT, as I was looking to see if I could find out if you are over or under 50, I saw a post that I think says that this diagnosis is a recurrence. Is that correct? If so, I don't know if Oncotype scores are valid for you. I'm not saying that they are not, but I just don't know if any testing has been ever done to see if Oncotype results are reliable for those who have experienced a recurrence rather than a new primary breast cancer.
Secondarily, if you've had a lumpectomy and still have both breasts, hormone therapy will provide the additional benefits of reducing your risk of a localized (in the breast) recurrence and reducing your risk of a new primary breast cancer in either breast.
Not saying here what makes sense for you - only you can know that - but laying out the considerations. Your overall benefit from hormone therapy relative to metastatic risk might be quite low, at 1%-2%, but if this is a recurrence, that's uncertain. And there are other risks to consider.
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Thanks Beesie. I call my second bout of cancer a recurrence but it is very complicated, which is why I haven't buckled down and filled out the DX info yet, and is basically new primary. Two, actually. Very diseased breast. Over 50. Where I sit, every percentage point counts because I think breast cancer is insidious to say the least. I am at the highest end of the range as far as estrogen/progesterone positive cancer, and don't have a lot of independent things I can do to mitigate that as I already eat well, exercise, maintain normal weight etc. Not a candidate for AI for various reasons. Looking at that chart, thinking about all this, am thinking I will talk at greater length with my MO but will likely begin tamoxifen. Your explanation and the chart are very helpful.
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Beesie , I enlarged this chart for the >50 group and still juggling to figure mine out. But since this has something to do with Oncotype and that is not measured for Her2+ does this apply to me? I had an 8 mm tumor (0.08 cm) which I can imaginarily see on the vertical column. Does that equate with an 11% risk in my situation? Where does grade fit in to this?
I have done chemo, rads, herceptin, but no endocrine yet.
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Ten yearsago I studied all of the charts and statistics and decided not to take AI or Tamoxifen. I thought I had made the right choice until a year ago when I found out after rib pain as a result of some lifting that I have diffuse bone mets. I was so shocked because I felt just fine. My initial cancer was found at age 60, so I figured I had low estrogen going in my favor. Wrong! You can bet I am taking AI now and hoping it will hold back progression. I don't notice too many side effects. My hands ache a bit and I use CBD cream to alleviate that. My hair might be thinning, but not a lot. If I had to do it over again, YES I would take AI's for 10 or 15 years. Finding out the cancer had spread after all of that time has been devastating.
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GiGiL, what CBD cream do you use? I keep looking at those and never know what to get for muscle/tendon pain.
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Racheldog, the graph is specific to Oncotype scores so it's not relevant to your situation. The vertical column is not tumor size - it is 9-year metastastic recurrence rate by percent (.10 being 10%). The horizontal axis is Oncotype scores.
GiGiL, I'm sorry that you've had the metastatic recurrence. I'm glad you are finding the AI to be tolerable. As I said in my post a few days ago, "For most patients, the risk of serious side effects (from hormone therapy) is low - only 1%-2% - so it is worthwhile for most patients to try Tamox or the AIs to see what quality-of-life side effects they experience."
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Bessie, I use CBD formulated by a group in Minnesota. This is a link. It is a little spendy, but a little goes a long way. Look for CBD that is 1500 mg. Strength. https://www.thehempdropzstore.com/product-page/pain-cream-cbd
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I think it is important to know that living isn't always the goal, being alive is nothing to *me* without quality. I don't want to "live", I want to thrive and continue doing everything I always have. Without good QOL I truly would rather not live
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My cancer was on my left side, so I made it VERY clear that I would NOT be having radiation regardless of lymph node status or physician preferences. If they didn't like that, then too bad. As a Nurse I see too many people with later effects from radiation.
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I find myself wondering how reasonable is it to want to do everything just as before as we age? I mean we all have to slow down and accept limitations if we're fortunate enough to have time go on.
for me being alive is definitely my goal because my cancer is incurable now. I've managed 20 months and each one has been a pretty active struggle. I have no intention of letting this cancer rob me of even a single day.
& the thing is, it is also possible to have limitations in activities & still live a full and meaningful life. IMO, the whole QOL phrase needs to die in a dumpster fire as it is ableist and ageist. I appreciate that people may have their own preferences about what treatments they want to do at each stage of their disease, but the rationale & language around this needs to change.
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moth,
Your post hit the nail on the head for me. Quality of life is a huge umbrella and its meaning is as fluid as a blob of mercury and changes over time. I have been fortunate to not have severe side effects but I have some. I managed them through the ten years I worked with mbc and was able to retire as planned from a much loved career. I do feel more physically limited especially as I tire more easily. Is it aging, mbc, or treatment? Perhaps all three. My lifestyle has changed in some ways by these circumstances but I have never viewed it as having diminished my life in any way. It simply changed it and change is a part of all lives. I suppose I could have forgone tx to maintain my lifestyle but then I would have missed so much, including 3 wonderful grandchildren. Since I have never expected life to stay the same, I’m okay with changing and adapting. If it wasn’t bc that fostered these changes it could just as easily have been something else.
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You definitely can't expect life to not change. It definitely requires changing and adapting. I've found as I go along trying to control things and prevent all the bad things from happening, that things have a way of happening anyway. I remember a year ago when side effects from tamoxifen were causing me so much trouble. I didn't know one year ago that I was actually living the good life at the time, compared to now. I thought it was trashing my QOL. Now I wish I could just be on the tamoxifen. I wish it had worked and kept the cancer from returning, because chemo and my upcoming ALND and zoladex and Aromasin are way worse (imo) than tamoxifen, but I dare not skip these things. I have a sweet little daughter who I would really like to see grow up. Cancer took both her grandmas, a great grandma, (and the cat, incidentally), I don't want to be next.
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Moth and exbrnxgrl - You both bring up really good points about the whole quality of life thing. I am definitely much more fatigued and physically "challenged" since cancer treatment, due to side effects, etc. and in my case I don't think it is aging, but cancer treatments. I was 66 when I was diagnosed and I'll be 69 next month and I do not believe that all of the changes I've experienced in these last 3 years could be chalked up to normal aging. It would be the fastest aging on record. Had I not gotten cancer and had treatments I'm sure I would be at almost the exact same ability level that I was at 66. I hate these changes and would love to be what I was just a little less that 3 years ago. That said, I am still very glad that I'm around and can spend time with friends and family and still work, and be a help to other people, although the working has really scaled down and I am looking at gradually easing out of it over the next few years, if I don't get "let go" first. I don't like that I had all those treatments or that I continue to take Letrozole, but the alternatives might be worse.
When my father was in his late 80's he and I randomly wound up having a bit of a conversation about his "quality of life" at the time and how he felt about it. At that time he had multiple health problem (CHF, prostate cancer, high blood pressure, mild dementia, etc.), and struggled through most every day just doing the routine things, showering (reduced number of days per week), getting dressed, fixing meals, etc. His whole day was taken up by doing "just the basics", because everything took so much more time and he'd have to stop and rest in the middle of everything. He could no longer go out and work in the yard, couldn't drive out to see me; could drive to the store once a week, but with difficulty and probably shouldn't have been driving. My mother had died about 4 years prior and most of all the relatives and friends he'd had had were long gone. He spent most all of his days in the house, just getting through a daily routine, and then watching the news, some TV shows, or reading some of a book (that he wouldn't remember most of later) in the evening. He told me however, that just being present "for the day", the weather changes, an occasional letter from say a spouse of long deceased friend, just asking how he was doing; the anticipation of what he might make for lunch, the visits from his 3 children and 2 grandchildren, and continuing to plan things in the future - even if a just a short future, provided him with a "quality of life" that he felt was "worth it", i.e. he did not feel like "packing it all in" and that life was not worth living with all of the limitations he experienced at that time. His heart failure eventually got him and he died at 91, but it wasn't until the very end, after being in the hospital for about 10 days and determined to be in a terminal state by the doctors, that he appeared to feel that there was no longer quality of life and that he was "ready" to die.
I think I feel similarly and that while I can't do what I used to do, due to all these cancer issues and treatments, I still enjoy what I can do and think that a whole lot about life is still very worthwhile. I have good friends, enjoy getting out for walks, going to the store, learning new tidbits of information, seeing agency clients that I work with who are elderly, disabled, have dementia, etc. When I see them, I really count my blessings and realize that while I am now less able than before, I am still very abled in comparison to many. I absolutely hate the side effects that surgery, radiation, and letrozole have left me with and would love to throw that bottle of letrozole away forever every time I look at it, but since I don't know if my "quality of life" would improve without it, or if I would experience a spread or recurrence sooner than I might otherwise, I'll never know, so I keep taking it. Even if I quit the Letrozole, I'm left with side effects of painful chest muscles, neuropathy, and fatigue, etc. from the chemo, surgery, and radiation, so even without the AI, I assume my quality of life has been lessened for good. It's just that it still is "good" in the grand scheme of things.
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For me, tamoxifen was intolerable not directly because of quality of life but indirectly because of the need to earn a living. I could've had a fine life on it if I hadn't also had to work a job to pay for my needs and my health insurance, but with that constraint, I was able to basically do nothing else but work, and it was full of anxiety as well. I'm very lucky though that I was able to find an alternate SERM that lets me actually both work and live.
I agree that there's a ton of ableist bs and assumptions wrapped up in the QOL discussion. I also think that for hormonal treatment, there is this extra layer of WTF because for many of us, we have no idea if they're even needed since we don't have scanning or personal diagnostics like oncotype. I thought about that a lot when I was struggling with the tamoxifen, barely think of it at all now that I'm living well with the fareston.
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I recently completed five years of tamoxifen and was advised to stop treatment by the oncologist. I also arranged the BCI Test which came back as a 2.9% chance of recurrence in the next five years, but also indicated that further endocrine treatment is unlikely to benefit me.
I think it is important to understand that we can take the drugs but they are no guarantee against metastatic recurrence. In fact, it is less likely to help than not as it will prevent recurrence in only 35% or so of those who would have gotten metastatic disease. No one should blame themselves for not taking the drug. If you had some good years, appreciate them because there is no guarantee that the outcome would have been any different if you had suffered through them.
I am not sure what I would do if faced with a recurrence. Five years of being unable to experience joy and dealing with nearly constant fatigue made me a shadow of my former self. What if those years were wasted and I could have been enjoying life more fully? Right now, I am dealing with a diagnosis of a different cancer and I am still much happier and feeling better than I was on tamoxifen.
There are no simple answers because we are individuals and statistics don't give much insight for a sample size of one.
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I have one data point to add after switching from Letrozole to Aromasin last month. I wasn't looking to change AIs, but at my last appointment my MO suggested it based on the number of symptoms I was having on Letrozole and how negatively the drug was affecting my quality of life. One of the most frustrating issues has been severe reflux, to the point of my making an appointment with a GI specialist.
Before I could even get in to see the GI, I began to notice much less reflux with Aromasin. I still take daily Prilosec, and will still see the GI soon, but this has been a pleasant improvement in my quality of life. (There are other new issues, such as increased hand and wrist pain on Aromasin, but at least I can function better now.)
I also learned that I can go back to Tamoxifen if Aromasin doesn't work out for me. The goal is to get to a total of 7 years of AI meds. I'm at 3.5 years now, between Tamoxifen, Letrozole, and Aromasin.0 -
This thread prompts a question about quality of life vs lengthening of life. The side effects of the suppression medications aren't discussed by the doctors. The oncologist just matter-of-factly speaks as if those are just part of the program for the next decade of "life". Without talking about the severity of the side effects and how small the potential life expectancy improvements actually are. 50% of 16% is 8%. I watched my mother-in-law endure surgery, radiation, and chemo for three years to ultimately die from a destroyed immune system. At the end she said she wished she had done nothing except enjoy whatever was left.
I read that only about 1/2 the women undergoing hormone suppression complete the treatment and that a fair fraction of those never return to their oncologist after stopping.
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Amen Elfrida!
Many MOs present these drugs to patients as if it's a given we will take them, and it's unfathomable that we wouldn't. It is always OUR CHOICE. I had to go through 3 other MOs before I found a wonderful one to follow me who doesn't bully me by insinuating I am going to die if I don't do the hormone deprivation treatment or minimize the SEs (i.e., "just do acupuncture" or "drink tonic water and re-start the medication"). I did actually try the drugs but ultimately could not tolerate them. My current MO acknowledged that some women can't tolerate them and said it is completely up to me if I want to try some alternative in the future.
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I don't think it is ableist and ageist to talk about QOL. No one is saying that people with permanent or incurable physical limitations are less important or shouldn't want to live. People are using the term to address their own tolerances when they have a choice about whether or not to pursue a treatment, when pursuing the treatment would make their daily life more challenging and they have the option to forgo experiencing that. The choice is very personal. Some women on this board want to take advantage of every possible treatment, and that is valid for them, and other women choose to forgo any treatment at all, and that is valid for them as well.
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My MO's area of research specialty is 'the side effects of cancer treatments', so I certainly had a good and open discussion with him both about the potential side effects and the absolute risk reduction benefit that I'd get from either Tamoxifen or an AI. The decision to take endocrine therapy clearly was mine, and while he was leaning towards Tamoxifen for me, he had no problem when I opted to take an AI and he agreed with my rationale.
As I've said several times in this thread before, certainly there are some very low risk patients who get little benefit from endocrine therapy, and it irks me that most MOs assume that every ER+ patient should take these meds, without consideration of the amount of benefit, and sometimes even bully very low risk patients who are hesitant. That said, to Elfrida's post, personally I think an 8% lower chance of dying from breast cancer is a pretty significant risk reduction, and except for those who either have serious comorbidities or those who are elderly, 8% would greatly outweigh any serious risks associated with these meds.
As for the QOL discussion, there's no question that we each view QOL from our own perspective. And if our situation were to change, how we view QOL would likely change too. Someone older with a low risk Stage I breast cancer will naturally put a different weight on quality-of-life side effects than someone who is younger and is Stage IV. Two people of the same age and with similar diagnoses may have a very different tolerance of QOL side effects if one already deals with side effects from other conditions and/or meds - and for one person, dealing with these other side effects might increase the tolerance for new ones ("it's just more crap on the pile but it's all helping me stay alive") while for someone else, the addition of new side effects might be one step too far ("I'm already dealing with so many difficult side effects, I just can't tolerate any more").
Given all that, I guess what I'd like to see in any discussion about QOL is more sensitivity and awareness. I can see why some of the strong proclamations I've read here that quality-of-life is more important than extending life might be hurtful to those who are Stage IV. I'm Stage I, and the vehemence of some of those statements have made me cringe. By the same token, those who have decided that they are willing to tolerate almost any QOL side effect if it means possibly extending life should recognize that QOL is a more important factor for some people, particularly if they are measuring QOL against an already very low risk of mets.
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Thanks as always for your excellent post, beesie. I have been on one AI or another for ten years and will continue until I have progression and have to move on to something else. My QOL is not 100% what it was before bc, but it’s pretty darn good. It is surprising to see some members decide not to try an AI because of se’s that others have experienced. My QOL, as I said, is somewhat diminished but does that mean life is not worth living? Hardly and please bear in mind that there are hundreds of reasons your life might change over the years. So I will gladly keep the joint pain as I enjoy my family and life in general as death does not seem like a good alternative even if I have had to compromise on that QOL thing.
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Good points, Beesie. I am curious what language people think might be more sensitive. "Pros/cons"? Because it's 100% valid discussion to weigh risks (including "QOL" issues) against benefits. I also know that I have read from ladies with very advanced disease in the holistic forum refusing any conventional treatments. And they do cite QOL.
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BCat40, I am referring to when people say things like "I'd rather not live than have a reduced QOL" or "Quality of life is more important than quantity of life". Those types of uncompromising comments are more often made by people who have an early stage diagnosis, people who in reality face a pretty low risk that they will ever really face that choice. Even if someone is clearly speaking about themselves only, which is perfectly fair, it is still an insensitive way to make the point, when you consider that there are people reading and commenting here for who are Stage IV and who wake up every morning facing a very real quality vs. quantity choice. Make the point, state a personal opinion, but in how it's said, consider the audience, consider other members, and show empathy.
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BCat40,
I know you addressed your comment to beesie. Yes, some on the alt forum cite QOL as a reason for forgoing conventional tx but QOL is an incredibly broad term. I have been stage IV for ten years and I have some bone and joint pain in quite a few areas of my body. There are some things that are now more difficult for me to do, including knitting which has become difficult. But, I was able to work full time until I retired in June and my life is still very much worth living despite a few compromises I’ve had to make. I also believe that AI’s have been what has kept me from having progression or dying, so the trade off is more than worth it.
What is a bit hurtful is when people make comments that any compromise in lifestyle/activities makes life not worth living so they will not even try certain treatments. Anything can happen in life that might compromise ones QOL. If you lose the use of your legs or your eyesight your QOL is compromised but most people would still be quite happy to be alive.
At stage IV, the stakes are clearly higher for me than for lower stages. No one can predict the course of lower stage disease nor guarantee anything about the future. As for QOL, well, I’d rather be alive and cope with se’s than be dead. If people who are advised to take anti-hormonals choose not to because of fears of diminished QOL that is certainly their choice as long as they have no regrets in the event they develop metastatic disease. I am not living in a manner identical to my pre-bc days but I am living and living well. I have no trouble accepting that some things are more difficult to do. The trade off has been more than worth it.
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ebx, I'm glad you are doing well on your treatment.
I think that when many people cite QOL for a reason not to take a medication, they truly did have debilitating SEs and were not just mildly inconvenienced. One of the SERMs I tried made me so nauseated I couldn't work and the constant muscle cramping made it impossible to sleep through the night. I can see how it might sound especially insensitive from someone who never even tried the meds, but they are likely coming from a place of imagining worst case SEs and not just some minor aches here and there. This is where I think many on this board do a good job of tactfully suggesting trying the meds first, and then deciding (though I have definitely seen some people state it in an insensitive manner as well).
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Yes, it’s those who have never tried and are convinced that they will have every possible se to the Nth degree who baffle me and those who are uncompromising in terms of anything changing in their lives that can seem a bit insensitive. Having bc in and of itself changes ones life. For some it is a temporary blip. For others a beast to be wrestled with until the end. It sometimes makes me feel that people are implying that stage IV lives are not even worth living because many of us have compromised lifestyles. Personally, I prefer that to being dead.
Not ebx, Exbrnxgrl
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Sorry, Exbrnxgrl.
While I am not in your shoes I have an idea how that can feel from a lesser perspective. I woman I know from a professional group (not knowing I had had BC) told me she was called back from a biopsy from her mammo and that they said it was probably just a calcification but that she was so devastated she hadn't been able to eat for 3 days. It was like the prospect of getting BC was so horrendous she couldn't function. I just thought, yeah, been there, done that, you should chill and not make me feel like the world ended because I got BC.
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