Rejecting hormone therapy
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threetree, I saw your post in another thread. I'm so sorry. I remember reading the word, "metastatic" in my chart, and thinking, "WHAT??? ME???" I did "everything right" and still progressed. I even had chemo the first time. I was part of the TailoRx study. My onco-type score was somewhere in the middle, and I was randomized to get chemo. I was glad at the time, as I wanted to throw everything possible at my Stage II cancer. Now people with my score (don't remember exactly what it was) are thought no to benefit from chemo.
It's easy to fall into thinking about all what what-ifs we did or didn't do to have our cancer come back. You're right when you say it's just a crapshoot! Again, I'm sorry you've progressed to Stage IV. The women in that group are wonderful. Come on over to that thread, if you haven't already.
Carol
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Sunshne99 - Thank you so much! I've seen your posts and stats before, and thought it seemed highly unusual, given your initial stage, etc. Crapshoot indeed! I haven't quite migrated over to the stage 4 group yet, as I'm still feeling "tazed" by all of this. This morning, my mind is all over the map. All sorts of thoughts floating around in my head, but nothing sticks. I'm doing some "normal and routine things" like making coffee and reading the news, and then I lose it for a while, and then go back to "normal" again. I can't focus or decide just what to do next at this point. They wanted me to call the oncologist this morning, but I don't think I can. I might just message them and see about an appointment for later this week.
Again, thanks so much for you message. You absolutely know what this is like and I really appreciate hearing from someone whose had this happen.
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threetree, I'm so sorry to hear your news. This is something that can happen to anyone even if we do everything the oncologists tell us to and more. It's easier to deal with the hypothetical "what if?" than the avalanche of the reality. Taking your time to gather your wits is a good first step. Best wishes for finding an initial treatment that works for a long time and is not too hard to tolerate.
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Thanks so much Maggie15. I absolutely agree that it's so much easier to deal with the "what if's" than the "reality". I'm trying to find my bearings and "gather my wits" (my father used to often talk about wanting to be left alone in the mornings so he could "collect his wits" for the coming work day - an old nice memory of mine.)
Thanks for the good wishes about being able to get treatment (if any). I am real worried about side effects, but will just have to weigh it all I guess. Some of those drugs and procedures are highly intolerable. I think I'm going to find myself between a real rock and a hard place with this one.
Yes we can do everything they say, but sometimes it's just not enough.
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Threetree, I have followed your posts. I am shocked by your transition to Stage 4. I have not done the AI's and only tried Letrozole for a short time which was awful. I am still being pushed to now try Aromasin but I fear the same side effects. Crapshoot is right.
I am so sorry this happened. I was in a Zoom breast cancer group and I recently decided to stop since it was depressing with hearing about recurrences.
You have done so much to prevent this. Did you have any symptoms or did this randomly show up on a scan ? Keep us posted.
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Threetree, I am sorry to hear your news. It can happen to any one of us. All stage 1 have a 30% chance of recurrence. In case you want to ask for exemestane, here is another the benefit you can get out of it:
"Exemestane is potently anti-inflammatory and antioxidant and can thereby protect against development of cancer and chronic degenerative diseases," conclude the authors. Whether the aromatase inhibitor may be able to be used by a larger population beyond those with breast cancer still needs to be tested, but the study suggests the agent could be used to prevent damage from the onslaught of inflammatory and oxidative damage to different tissue types, in both women and men.
https://www.cancernetwork.com/view/commonly-used-breast-cancer-drug-may-have-wider-benefits
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Hi Racheldog - Thanks so much for your message. Yes, I have been taking the Letrozole for 3 years now, but this is what I got. I have no way of knowing if I'd declined whether the same thing would have happened or not; or happened sooner or later. No way to ever know. It came on fairly suddenly, but I think symptoms might have also been clouded by the Letrozole side effects. I've had chest and back pain ever since the surgery and radiation and any problems I had were always chalked up to tight muscles from surgery and radiation or poor posture from hunching over my laptop, etc. I heard that again, as late as last early November, but with hindsight, I think it was likely these bone mets. I even had a CT scan in early Nov due to my back pain complaints and nothing showed up. Only showed up a CT the other day. Also, chest pain and back pain are listed as routine side effects of Letrozle, so who would know?
Even with all the vaccinations, etc., I got Covid last April. Not a severe case, but then I also thought I had some "long Covid" lingering things like more brain fog, fatigue, and muscle aches (also Letrozole side effects). I've never been the same since Covid, so I wondered if it could have weakened my immune system enough to "encourage" a recurrence. After googling a little it looks like there is some preliminary research into just that possibility. Some researchers have hypothesized that while the Covid virus doesn't directly cause cancer or recurrence, it very well may set up the "tumor microenvironment" to trigger those dormant cancer cells that might have never awakened without a stimulus, i.e. the virus might have offered the stimulus. (Hope I wrote that in an understandable way.) There is also the hypothesis that continued overall body inflammation from "long covid" might keep the immune system down in such a way that it just can't fight cancer cells as well anymore. More food for thought.
I also can totally understand why you dropped out of the Zoom group due to hearing about the recurrences. I've never been able to read about them very well on this forum. It's not because I'm not moved, or don't care. It's just the opposite, and a person's brain can only take so much. You can only let so much in at one time. I'm just gradually now dipping into the Stage 4 threads that I couldn't really read before. Slowly testing the waters there. One thing that is standing out to me on the bone mets thread is how many are telling me that they did endocrine therapy for about 3 years and then had their recurrence. Weird.
I follow your posts too, Racheldog, and I will try to keep you all posted. Just wondering how much anyone wants to read about the negatives of all of this. Thanks again, and take care.
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Lilly hello, and as always, I am appreciative for your post. Very interesting statistic about 30% of stage 1 having a risk of recurrence. I would not have guessed it was that high, although now that I'm seeing more about some recurrences on the bone mets thread, I've been struck by how many there had relatively "safe" initial diagnoses. I don't think there is any such thing as a "safe" diagnosis anymore; no matter how small the tumor or how low the grade. I did have a large advanced tumor, so was well aware that this sort of thing could happen, but I am truly shocked at what I've been seeing happen is some with very early cancers.
Re exemestane, I've been hesitant to look into any more because it's a steroid and steroids and I don't get along very well. After reading the article you linked to, I might have to re-consider the possibility of asking for that with my future treatment regimen. It looks like that was published 10 years ago. I wonder if there has been any further research along that same line. I am amazed at how much research gets done at the test tube and petri dish level, looks promising, but then never goes anywhere else - not even to the rodent studies. I guess it is all industry politics and money? If exemestane could be shown to work in humans like it does in vitro, it could be a real boon to many. I'll look around some more and see if there's anything further about it.
Still reeling over that 30% recurrence rate for stage 1. Wow!
Thanks again so much, Lilly. I always enjoy reading your comments.
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Threetree I am so sorry about your news.Sending hugs and hopes for good treatment options. I have followed some of your posts all through my membership here on this site and wish I could help the emotional rollercoaster for you like you did for me in the past.
Lillyishere Could you please tell me where you got the 30% recurrence rate from? My doctors don't discuss statistics well, even when I push them. My MO wouldn't tell me any figures at my last check-up despite knowing that I quit the AIs. I would like to show her at my next check-up.
Racheldog I do understand the fear that is imparted by doctor visits, group meetings, etc. I am doing a neuropathy research study for past breast cancer patients. One of the recent interviews covered the common depression concerning fear of return of cancer, especially mets, that is instilled in breast cancer survivors by their own doctors. It's so hard to not be scared daily by our own thoughts.
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Oh OldLadyBlue, how nice of you to think of me and offer such good wishes. Thanks so much. I'm glad to hear too that there was something in my posts that helped you at some point. Sometimes I think my posts are mostly just venting and not necessarily all that helpful to others, so it's nice to hear that sometimes they are a help.
I've also noticed that the doctors don't like to deal in statistics. My oncologist completely ignores and dismisses them, as she thinks every case is unique, and she rolled her eyes big time once when I told her about some statistics another doctor had quoted me. I do agree that every case is unique and the collective statistics are no good in that regard, but on the other hand, they can give you some idea of some things, so I wouldn't dismiss them altogether and do like to see them. It's all part of the weighing and measuring overall.
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I'm so sorry for what everyone is going through but the 30% of stage 1 relapsing is not accurate. It's almost 30% of patients with breast cancer who are free of disease after initial local and regional treatments present with disease recurrence during follow-up. That includes all the stages except four - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4933127/#:~:text=Almost%2030%25%20of%20patients%20with,....
I've researched specifically early stage relapses and no one really seems to know the exact specifics. "According to the Susan G. Komen® organization, women with early breast cancer most often develop local recurrence within the first five years after treatment. On average, 7 percent to 11 percent of women with early breast cancer experience a local recurrence during this time." Doesn't say anything about the percentages years later but considering most people relapse in the first five years it's not going to be 19 to 23% relapsing later.
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Thanks for this info.
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oldladyblue, my MO gave me 30% and I googled, and here it is:
Almost 30% of patients with breast cancer who are free of disease after initial local and regional treatments present with disease recurrence during follow-up.1 The timing of breast cancer recurrence varies considerably, influenced by classic prognostic factors1 as well as adjuvant treatment strategies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4933127/#:~:text=Almost%2030%25%20of%20patients%20with,disease%20recurrence%20during%20follow%2Dup.&text=The%20timing%20of%20breast%20cancer,well%20as%20adjuvant%20treatment%20strategies.
I am not a fan of statistics in cancer cases since I am in the 2% group. This makes me think, everything can happen to us all.
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Well lillishere, I had 2 tumors each 1cm one idc and one ilc, I see you share the same er+ pr- her2- with me.
I did 4 years on different AI drugs I discontinued exemestane, had severe dry eye. Thank God it cleared up when I stopped exemestane. I am starting on year 12 NED. I had no positive nodes but my Oncodx score was 34, I didn't do the chemo, I chose just the AI drugs.
I had left side mastectomy no skin sparing and DIEP reconstruction which still looks good.
My oncologist told me my late recurrence risk was less than 8%. I think everyone has an 8% risk of breast cancer in general so I don't worry that much.
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half
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I encourage patients to ask your oncologist about the 30% recurrence risk for early stage bc. I asked mine at my last check up, and she rolled her eyes and said it simply wasn't accurate. (Important to note that Stage 1 and Stage 3 are both considered early stage, and there is a significant variance in the respective recurrence risk.)
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My MO told me that if I don't take AI, my recurrence is 25-27% since I am early stage.
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My first diagnosis was ER/PR+, HER2Neu- and after doing 4 rounds of AC and radiation, I took Tamoxifen. I was 41 and pre-menopausal.
I lived through the hell of Tamoxifen for 2 years until the degradation of my quality of life was so bad that my onc agreed it was time to stop.
However, the unrelenting hot flashes remained continuing to make my life miserable. For a while, acupuncture stopped them cold, but that eventually stopped working as well and I had to figure out how to live a life of coping with hot flashes.
Forward eighteen years to a second diagnosis, this time even more highly ER/PR+ but also HER2Neu+ as well, i.e., a new primary. After a double mastectomy with immediate DIEP reconstruction, I did 16 rounds of Taxol and Herceptin followed by a full year of just Herceptin.
A month after completing chemo, I started anastrozole. Had to stop it because of an intractable cough. After a short break, I re-started it, and soon thereafter became debilitated by arthritic pain. It got to the point that not only could I not get up from a chair or out of my car, but also I couldn't even turn over in bed. Stopped anastrozole, took a short break, tried exemestane with the same results. Took a break, started Tamoxifen, and returned to life changing hot flashes. So I called it quits. What was the point of having NO quality of life in hopes that I wouldn't have cancer again? Not worth it. My onc agreed.
I was left with lingering pain my left wrist which I figured I'd just have to put up with along with the never-ending hot flashes. However, when I broke my right wrist the next year and became unable to use either hand at all, I discovered that the hand therapist could address the DeQuervain's tenosynvitis in my left wrist caused by the aromatase inhibitors. Why my onc never told me this??? Maybe in my overwhelming misery from the hot flashes, I didn't tell her?
I would never counsel anyone not to take an anti-hormonal based on my experience because even my onc agrees that she's never seen such intensive hypersensitivity to drugs. That said, though, I do think that oncologists are reluctant to admit and address that these drugs – in some cases – permanently alter your body. I've been coping with hot flashes for 22 years now and although they are less intense now, I still cannot sleep without a fan in my bed, nor can I go anywhere without a fan lest I have a hot flash. I've ruined more clothes than I can list and my discomfort level in meetings, social situations, and other public places affects me deleteriously. The flashes are often in tandem with mood swings and frankly, people simply do not understand how uncomfortable both physically and psychologically they are. This started thanks to Tamoxifen and has never let up even after going through menopause ten years after treatment. And after taking the aromatase inhibitors after my second bout, my menopausal issues worsened considerably and changed. It's been a long and very lonely struggle which continues.
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Some interesting things I’ve learned about breast cancer and its treatment in my short 16 months since diagnosis and surgery: IDC has a higher rate of recurrence in the first 5 years from diagnosis, ILC has a higher rate of recurrence after 10 years. I had ILC Stage 2B with 2+ nodes. Oncotype Score was 4. I was premenopausal at age 57 and I chose bilateral mastectomy with no reconstruction, no chemo, no radiation, 1 injection of Zoladex after which I immediately developed angioedema, and then decided for an oophorectomy to put me into menopause. I did try (very briefly) Anastrozole and Exemestane, then decided to say enough and chose no more treatment after the horrible side effects along with the knowledge of the even worse adverse events of osteoporosis, CVD, etc I work as a nurse in long term care and it’s my nature to question every drug that is recommended. I detest the part of my job which has me popping literally hundreds of pills in my 8 hour shift and am forever advocating to deprescribe meds. This thread piqued my interest and I have been reading the comments with curiosity. Maybe I’m insane. Maybe I’m jaded. One thing doctors don’t tell their patients when prescribing a medication is the NNT (number needed to treat). Plain talk, it’s how many patients need to be treated with a medication for 1 person to benefit. In a perfect world, that number would be 1:1. Everyone treated would benefit. Real world number for Exemestane is 1:160. The 159 who don’t benefit just get the adverse reactions. For how many years I have left, I choose quality of life. Perhaps I would choose differently if I had young children. As so many others have said, it’s all a crapshoot. If I have a recurrence or Mets I might reevaluate, but my mindset has always been quality over quantity. A book I highly recommend is Being Mortal by Atul Gawande. It helped me to think about end of life care and what is most important in making those decisions, as we are all mortal. God bless all you wonderful brave women who battle this life changing disease with honesty, empathy, humor, and love
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My MO is primarily a researcher with fewer patients and I am a math/science nerd so he spent time coming up with a more personalized recurrence score for me. He used the 21 genes/proteins information available to physicians in the Oncotype DX report along with the score (24), treatment (lumpectomy, radiation) and the usual items (tumor size, grade, nodes.) Then he looked at the good (highly ER+ with more likely late recurrence, micromets, good diet and daily exercise) and the bad (LVI, under surveillance for precancerous conditions in 4 other organs) along with his experience to come up with a 15% ten year recurrence score with 10 years of AIs and 20% without. While he recommends the AIs since that is his job he understands my decision to reject them because of limited benefit, side effects, detrimental influences on other health issues and a shortened life expectancy (6-8 years due to a very rare treatment adverse effect.) I won't blame him or myself if the cancer recurs and I would take the AIs and SERDS since as of now they would be my only treatment options.
Most doctors don't have the time or interest in doing this so I appreciate the individualized stats. However, we both know that statistics can't predict individual outcomes; my 6/10,000 probability adverse reaction is an example of that. Recurrence is a crapshoot in spite of what you do and part of dealing with bc is accepting that you can't control the final outcome. Everyone is in a different situation and has to make decisions based on that and their comfort levels. Dclancy64, thank you for your book recommendation and your kind words.
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Thank you for your post maggie15. May I ask what is shortened life expectancy (6-8 years due to a very rare treatment adverse effect.)? I always thought AI does plenty of damage to someone's body even if you don't have SE but I don't know what type of damage.
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lillyishere, I never took AIs. The adverse effect is progressive radiation induced pulmonary fibrosis. RIPF happens to 3/1,000 breast cancer patients who undergo radiation and 20% of these cases are the progressive type where scarring spreads outside the portal. It's more common in lung cancer patients but any radiation to the chest can cause it. People with autoimmune diseases or a family history of IPF are more susceptible to it so they are advised to avoid radiation. My pulmonologist told me that since I have Barrett's esophagus I had sub clinical interstitial lung disease caused by micro aspiration of gastric acid. This helped the radiation cause out-of-control scarring. My lung got a higher dose than usual since my RO was trying to avoid my esophagus. A year ago I was on high dose steroids and oxygen for 3 months but I survived. My right lung doesn't work much but the left is still OK. I'm using inhaled steroids to try to control the horrible cough and following my pulmonologist's advice to avoid respiratory infections, intubation and drugs that exacerbate ILD.
Any medical treatment has risks; some breast cancer patients probably die in surgery. I don't worry about the statistics. I have to live like those who are immunocompromised since an exacerbation causes further damage but there are others on this site who do the same. I wouldn't generally advise skipping radiation since this is so rare. In my case, hindsight is 20/20.
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Oncotype Distant Recurrence Risk (at 9 Years) says 4%. MO says without hormone therapy this rises to 6%.
Tonight I'm reviewing my first visit notes where I wrote that the MO said benefit from hormone therapy can be inferred from the Oncotype report. My notes say "take 40% off of that to get benefit with anti-hormone therapy."
My notes could be wrong. I'd like to understand these numbers, though.
Does anyone know the formula for deriving estimated hormone-therapy benefit from the Oncotype report?
There are other factors, of course (several of them not good, and a story for another day). For now, I just want to make sure I understand this one piece of it all.
If anyone knows and can reply, thank you!
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krisk,
Did you see the post by "moth" from May 2021 on the very first page of these comments? She gives the website "Predict" where you put in your stats to see how survival rates over 5/10/15 years play out, with and without hormone therapy. However, Oncotype score is not one of the stats they ask for, so it doesn't answer your specific question:
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weninwi: Yes (and very grateful).
I've entered my numbers into that tool many times over, including when the updated (and worse) grade info became available with the surgical pathology report.
The tool says 1.6% benefit from hormone therapy. 1.6 is 40% of 4, so maybe this aligns with what the MO said in the first meeting (though I do note your reminder that Predict is not using Oncotype). Maybe the MO rounded 1.6 up to 2 on the theory that patients process whole numbers more easily.
Because of my other health problems, hormone therapy itself is risky/riskier. If those risks equal or exceed 1.6, that would be good to know.
I'll keep reading and trying to get my head around all of this. There are still weeks of radiation ahead...
Thanks so much again for taking time out of your evening to reply.
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krisk, According to statistics on hormone therapy benefit, tamoxifen reduces the risk of recurrence by 40% and AIs by 50%. As you wrote, 40% of 4 is 1.6 while 50% of 4 is 2. Your MO may have been calculating based on the benefit of taking an aromatase inhibitor. There is very little difference between 5.6% and 6%. Whichever med you take would give you about a 2% lower risk of recurrence. I find it helpful to think of the same numbers the opposite way, 94% or 96% chance of not having a distant recurrence. Predict and your Oncotype report give you essentially the same result. Of course, statistics deal with large populations and can't tell what will happen to you as an individual.
Since you have other health conditions you should consult the doctors who treat them about the potential effects of HT meds. Based on feedback from my PCP, endocrinologist and gastroenterologist I decided to decline HT and live with the higher risk of recurrence.
Other things to consider are your age, tolerance for possible medication side effects and your comfort level with the extra risk. Also, you could start hormone therapy and discontinue it if it caused issues which outweighed the potential benefit. Good luck with your decision.
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Thank you, maggie! These different ways of expressing the numbers are especially helpful. (I wish oncologists would do more of this; it's very hard to get numbers expressed in any way other than relative risk percentage reduction. That number is hard to understand when not accompanied by the others.)
Also appreciate the anxiety-lessening reminder that there are choices.
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I personally wouldn't go for alternative treatments. I would suggest considering her age and perhaps getting a second opinion from a rheumatologist. I guess the AI decision would depend on her age and how severe her severe osteoporosis is.
I was diagnosed at 59 with invasive (and aggressive) breast cancer that spread to the lymph nodes. I had neo adjuvant chemo, surgery, and radiation and am currently on letrozole.
I had osteoporosis when I started on Letrozole. This progressed to severe osteoporosis. Due to the cancer history, my rheumatologist recommended (and fought my insurance company) for Evenity which is a fairly new drug which builds bone, not just stops progression of bone loss. It is a relatively high risk drug and I was nervous about it as it is not recommended for patients with heart issues. I don't have any heart issues but I did have a couple months of adriamycin in the mix, which is potentially cardio toxic, years after use.
In any case, if I were 80 at diagnosis, and read up, I probably would have refused the hormone therapy. A hip fracture, as far as I can tell, is hard to recover from than mild chemo. However, in my case, I realized that a hip fracture would knock me out as well, given my personal life. So I am taking Evenity and while it might be more lethal than chemo, the results are impressive; in six months, my z score has gone from -4 to -2.9.
I really don't want to continue the letrozole past the 5 year mark. Breast cancer can return while you take hormone therapy, and I just can't imagine doing what I did during treatment before (work, take care of my 90 year old mother, etc) with a broken hip.
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I was diagnosed with lobular invasive breast cancer just this month and already had my lumpectomy. I am presently waiting to heal so I can start radiation. My surgeon oncologist said that most likely I will have to go through 5 weeks and be placed on hormone therapy. I am in my 60's, very active and healthy, and still am even after this diagnosis. My gut tells me not to take these hormone pills because I have worked so hard at maintaining a young and healthy body, spirit, and mind. I don't want to have bone issues, or hot flashes anymore, barely had them when I did go through menopause. It appears this hormone therapy will just make me age even faster. I had one lymph node removed and it showed no signs of cancer spreading. My follow-up appointment is June 5th and I have so many questions to ask about treatment. Has anyone out there tried natural remedies?
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@roz27 , The hormone therapy decision is a tough one. Before deciding one way or the other it is best to get an estimate of your recurrence risk and how much HT will reduce it. Was an Oncotype dx done? Your MO should be able to give you an estimate based on your tumor characteristics and other medical information. It's their job to recommend everything possible to prevent recurrence but it's up to each individual to evaluate the pros and cons. I was diagnosed in my late 60's and felt that I had more choice since I was older.
The problem with natural remedies is that their effectiveness is unknown. No clinical trials have been done and all the published information is anecdotal. There are studies showing that exercise, a healthy diet and avoiding alcohol can reduce risk of recurrence by 40 - 50% but HT statistically improves that by a varying amount for each individual. Statistics are unable to predict what will happen to an individual so there is no guarantee that you will remain recurrence free whatever you do.
I decided to refuse HT principally because I have other precancerous conditions for which estrogen is protective (along with all the other SEs.) Some people opt to start HT to see how it will affect them knowing they can quit if they find the side effects intolerable. My MO still recommends AIs for me but is satisfied that I understand the risk I'm taking. All the best getting the information you need and deciding what to do.
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