Hormone therapy or not if bad side effects
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Hi all, thank you so much for your posts, I've used some already. I just started Anastrozole a bit over a month ago. Noticed side effects right away. My doctor asked me to hang in there as prescribed till my appt with her in June. However, I found an article about taking it every other day and in the AMs instead of PMs and now my hot flashes are gone and aches are much better. I am not happy with the way I feel overall though, I seem to have a mental fog always and the insomnia is still bad. I am toying with the idea of stopping, as benefit takes an 11% risk of recurrence down to 6%, which isn't too much difference in my opinion. My doctor is not very good at explaining things to me, and I haven't told her I've halved the dose.
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Hi, I am wondering if those who posted on this thread earlier, or anyone new, are willing to update what is happening these days re hormone therapy with side effects. I have been off of Anastrozle for enough time to return to "normal" i.e. no hot flashes, no body aches and pains, no insomnia, no huge mood swings. I feel good for the first time in a year. However, I am still haunted by the Femara bottle on my desk that came in the mail after my last doc visit 2 weeks ago. She wants me to try it. I am afraid those horrible feelings will all come back. My doctor understands I don't want to take AIs, says it is my choice. But says it will provide a 6% reduction in chance of recurrence (from 12%. Chemo was only a 2% reduction, so she doesn't understand why I don't want to take the AIs.
I was 65 at diagnosis. Oncotype 28. Otherwise not on any medicines at all.
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Hi all,
Like oldladyblue HT would take me from a 12% chance of distant recurrence to 6%; I was diagnosed at 69 with an Oncotype 20. However, I have osteoporosis, arthritis and familial hypocholesterolemia which make AIs a bad choice. I have three siblings who had strokes/DVTs, so tamoxifen could be dangerous. My MO agrees that the potential adverse effects probably outweigh the benefits in my case, so I am skipping hormonal therapy with his blessing. Also, six months after finishing rads I developed grade 3 late stage radiation pneumonitis ( a rare side effect.) Low O2 levels and SOB were scary and my pulmonologist figured I had a 50/50 chance of making it, but thankfully prednisone stopped the progression. I'm left with fibrosis in my right lung and am still taking inhaled steroids, but I now know that there are other things just as bad as stage IV cancer that can get you.
HT is definitely helpful and it is wonderful if you can tolerate it, but everyone's situation is different. Do what is right for you.
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Hi Maggie15, thanks for posting. I understand your risks with either Tamox or AIs. Sorry about the radiation SE, wow. Glad you pulled out of the 50/50 chance on the living life side! for sure. Rads was not a problem for me, but on chemo I ended up in the hospital for 5 days. Re AIs, even on 1/2 dosing of Arimidex, I was having bad side effects by June, and so stopped taking it and am still off.
Recently I an the Predict tool https://breast.predict.nhs.uk/tool which helped me to understand that I have a 24% risk of dying of something other than BC in the next 15 years, and only a 6% chance of dying of cancer. Docs don't talk about statistics to me much, even my Oncotype score of 28 was not explained well. I rarely don't do what doctors suggest. So this is really the first time if I finally settle that I am not going back on AIs.
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Hi oldladyblue, While my MO supported my decision and my breast surgeon was OK with it (after reminding me to be sure to exercise and eat healthy,) my RO scolded me for "doubling my risk of recurrence" and couldn't believe my MO "allowed" this. They all work together on the same team and all are professors at Harvard Med School so I guess even good doctors can disagree. My BS figured that I was much more likely to exercise if my arthritis wasn't getting worse and I was sleeping at night (statistically this prevents recurrence by more than 50%.)
Statistics just apply to large populations, not individuals. I'm a math teacher and will have a class of 24 each toss a coin 100 times. One student might have 90 heads and 10 tails while another might get 10 heads and 90 tails. When all the data is put together we always end up with something very close to 1200 heads and 1200 tails, the theoretical probability. This is how the Predict tool works. You are just one of the little people on the graphic view and could be a figure that dies of cancer, dies of something else, or survives. Also, you need to look at the population considered in the study. The risk of DVT from tamoxifen is under 2% when the study includes women of all ages, but I found an Italian study of tamoxifen use in women over 70 (my age now) where the DVT risk was much higher and got worse with each passing year.
Good luck with your decision.
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Hahah Maggie, 50% reduction in recurrence by exercise and sleep? No doctor told me that! Made me laugh out loud! I guess I should get my lazy butt off this chair then and exercise. Haven't done regular exercise in years now. Used to do hot yoga regularly like 7 years ago. I was in great shape and happy mind then. Now I mostly sit around except for some gardening.... and am NOT in great shape and happy mind at all.... Hmmm, back to yoga? I'd rather do yoga than take those pills for 5 years... and it affords the same reduction estimate of 50% less? hahah, makes me laugh. Why hasn't a single doctor told me that?
The coin toss story is a great one too. More laughs. Yep, which little dot I am in that grid of dots on Predict???
And your personal background that 3 different Harvard doctors can disagree among themselves over what to recommend for you? I really helps me to know that some of the best minds in medicine can't agree. So who am I to find a way to agree with my own decision/indecision with my miniscule understanding of cancer. More laughing at myself.
My head is frozen trying to make up my mind. Flip flop, flip flop. But the bottle of pills is still sitting there on my desk unopened, so I guess I've sort of made my decision.
Thank you so much for your answers on this thread. I feel so far less serious now, and good laughs always help don't they?
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As they say OLB, laughter is the best medicine. I used to do yoga when one of the teachers who is also a yoga instructor offered it after school. She left a few years ago so my muscles are much stiffer. I should probably take it up again because it made me feel good. Right now I walk three miles every morning which covers the 2.5 - 5 hours of gentle exercise a week recommended.
I know women who have done everything the doctor recommends and had a recurrence as well as those who have not followed all orders and are still NED. I decided that I'm not going to make certain aspects of my health really bad just for improving the odds of preventing the cancer raising its ugly head again.
Keep that bottle of pills and look at it to remind yourself of the ways your life is better by using it as a paperweight.
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Hi everyone: Ah.. that innocent looking bottle of pills. It was 5 years ago this month that I was staying at the cancer lodge, having daily radiation treatments.When radiation was over, tamoxifen began. Took my first tamox early August 2017. So this is the five year ALL CLEAR mark. I hope.
These things were going through my mind and I presented them to my onc. I said, women who are taking tamoxifen still get metastatic disease and can still develop a new cancer! And he said, yup. I said, no studies exist ANYWHERE that state what the LOWEST effective dose is, it's like they realized women were tossing this pill in the garbage at higher doses so they lowered the dose until more women managed to struggle through the side effects, but no dose effective studies have ever been done! And he said, yup. So here was a drug that seems to have many supporters to its great effectiveness, but none of those supporters can point to the studies done that determine the lowest dose that helps women avoid cancer without drying up their vaginas and crunching their joints . So how much stock should I place in this cheer squad for tamoxifen? Do the benefits outweigh the misery and potential harm?
Five years of this drug and I still do not have an answer to this question.
I felt that I was being asked to do something 'on faith'. Just trust us. Relax. Take the pill. Everything will be alright. I am a skeptic by nature and not likely to take anyone's word for anything without pretty solid evidence. But I was also completely in a state of panic thinking I would not live to see 60. (I was 53 at diagnosis, 58 now, it occurs to me that I still might not live to see 60 !!) As I have stated many times before on this site and I am sure everyone is sick of reading, my solution to this problem was to take 1/2 a pill 5 days a week and a whole pill 2 days a week, which works out to about a 60% dose rate. I think. (whole dose 7 pills a week, my dose 4.5 pills per week, so slightly over half the suggested dose). What this did for me psychologically was make me feel like I was doing something to ward off more cancer while also hoping to make it tolerable enough to not quit, to stick it out for the whole 5 years. I will never know if my approach was medically effective or not, but I do know that it allowed me to feel more in control of my destiny and choices and less like I was on that damn cancer conveyor belt that we fall into.
It also helped that I was 11 Oncotype. Had I been at higher risk of return that would have seriously changed my mental calculations. But even then, we STILL DO NOT KNOW what dose is needed for what women with what risk factors. Even at my lowered dose I had the full meal deal of side effects, some of them quite miserable. It was whole body aching that made me throw in the towel 2 months earlier than my planned end date. I see the onc end of this month and if he tells me he thinks I should stay on another 5 years, I will have a meltdown.
I truly understand that pill bottle struggle. It was hard for me to swallow (pun intended!) but now that it's over, I admit there is a feeling of vulnerability. The TRUTH is that vulnerability was there the whole time and taking that pill never did provide me the fool-proof protection from mets or new cancer that I had hoped. It was a 'better' chance of no more cancer, but understanding how big that chance was and at what cost I bought it, I still don't fully comprehend.0 -
I am comfortable with my decision not to continue medicine. After a few months on Letrozole and posting this discussion thread, tried another. No change. Miserable existence. I used the predictive web page someone linked and my oncologist agrees with my decision. My chances of survival only increases 1 % for 5 years 3% for 10 and my chances of recurrence was already not likely at 95%. I gain 3% to 98% on hormone therapy. My oncologist said he was good with my odds. The adrenaline rushes with the hot flashes, the panic attacks and depression…not even considering the high cholesterol (which immediately returned to normal) or what it might due to my bones..was not worth that low percentage gain. I am thin. So the bone damage could have been very bad. I exercise regularly…but all the things I could control to stop from getting it did not stop me from getting it. The two factors I could not control my breast density (Birads D) and late menop(age 55) must have just been enough. I wonder what they really know. We all face hard choices. I prayed about it. Talked to hubby and my parents. My oncologist agreed. And if it comes back it does. I am in my 60 th year now-turend 29 a monh agoWanna live well wih the not more than likely two decades remaining. That’s my choice.
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Oh thank you so much for sharing runor, luvmy4sons and maggie15! It is really good for me to read of your own struggles regarding a decision on "the pills". Thanks to you, my haunted feelings are lightening up. I feel your compassion in your own stories and really appreciate knowing your views. I think the key is finding happiness with choices despite doubts. Maggie, telling me to use the bottle as a paperweight made me LOL like I haven't for a while. Luvmy4sons, thanks for sharing your statistics, which seem close to mine, but better. Runor, I think it is great that you made it through the 5 years! You were quite a bit younger than me when you were diagnosed, as I was 65. I understand and can see how I probably would try harder to stay on the pills if I was your age at diagnosis. From what I read, sometimes 10 years are not recommended anymore, my surgeon had said 5 would be enough for me after first saying 10 years. It seems funny to me that even doctors aren't persuaded by the research totally one way or the other.
Searching for the "right" answer and trying to quiet the multiple conversations swirling in my mind is a drag. I know personally 2 women on estrogen suppression who are doing OK on them and keep calling me to urge me to try every drug before I stop. A friend of mine is 84 and just fell in a grocery store two days ago, breaking her back. A neighbor at 82 just passed of covid two weeks ago after surviving cancer (the constant UTIs after getting a stint because of cancer I guess made the covid unfightable despite hospitalization). My late ex-husband got hit by a car and his neck was broken making him a quadriplegic after he survived cancer (he went to hospice rather than live like that). My kids' friend's mom is living with Stage 4 cancer 13 years after her mastectomy and called me to say "do all treatments you can" as she only did surgery back then. I just have sad thoughts generating almost hourly because of my indecision on these pills. Maybe it's still some of the side effects wearing off, maybe not.
Thanks for listening and letting me vent my way through my decision. The pill bottle still remains unopened. So, I am smiling, thinking, again, that the decision is made, it's just my living with it that is what I have to adjust to now.
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I've written a similar post, but asking again. I've been on Letrozole for a couple months. Though I'm nearsighted, I'm getting annoying floaters (along with blurry vision). I've been to a retina specialist who insists my med isn't causing it. My oncologist says the same. Anyone experiencing vision problems and feel it's the AI? Thanks for responding.
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Hi roro123, I have had some floaters and my left eye cataract seems to be growing more quickly that it did before chemo, rads and the AI. I was only on the AI for about 2 months and am now off of it for about a month I think. I haven't gone back to the eye doctor or even said anything to my MO.
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I had no indications of cataracts before my cancer diagnosis. My vision was getting steadily blurrier once treatment started. I have been on letrozole about 18 months. I had to have cataract surgery in both my eyes in May. Although all my doctors are doubtful, I am convinced it has something to do with it. Complete lack of estrogen ages your body quickly. Why wouldn’t it affect your eyes too
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Hi all, My MO told me that there are vision side effects (including cataracts) from tamoxifen but didn't know of any studies that had been done looking at vision side effects from AIs. He spends more than half his time doing research and running clinical trials so he is pretty up to date on what is going on in the bc research world. I'm going to have to start eyedrops for glaucoma, but that is a known side effect of the corticosteroids I'm on for the lung fibrosis caused by rads. It seems everything that kills cancer cells can cause adverse effects somewhere else. I've decided being able to breath outweighs the eye issues.
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