Forum Discussion
Ditching the 5-year sentence of hormonal therapy?
Hello everyone,
I am currently doing my second attempt at hormonal therapy drugs, and I hate it; no surprises there. I do all the things...take all the advice, all the stuff that is meant to make HT easier. But there’s only so much mindfulness you can do before just saying hey this stuff sucks and I don’t know if it’s worth it.
I may be looking for a needle in a haystack lol but I’m really curious to know if the stats my onco tells me every time I see her can ever be wrong. I guess I also am in horrible denial about having to take these drugs for the rest of my life. I just can’t believe the only choice I have is life-stealing HT side effects or more breast cancer. I am very rational and scientific so of course I will take them based on the evidence and hope it prevents a relapse. I still feel so ripped off though.
My question is: have any women out there started on that long jail sentence of HT meds, found that it completely ruined their quality of life, tried their very best to make it work but couldn’t, then went off it completely and DIDN’T have a relapse of breast cancer ever again? Has anyone heard any stories like this?
H xo
I am currently doing my second attempt at hormonal therapy drugs, and I hate it; no surprises there. I do all the things...take all the advice, all the stuff that is meant to make HT easier. But there’s only so much mindfulness you can do before just saying hey this stuff sucks and I don’t know if it’s worth it.
I may be looking for a needle in a haystack lol but I’m really curious to know if the stats my onco tells me every time I see her can ever be wrong. I guess I also am in horrible denial about having to take these drugs for the rest of my life. I just can’t believe the only choice I have is life-stealing HT side effects or more breast cancer. I am very rational and scientific so of course I will take them based on the evidence and hope it prevents a relapse. I still feel so ripped off though.
My question is: have any women out there started on that long jail sentence of HT meds, found that it completely ruined their quality of life, tried their very best to make it work but couldn’t, then went off it completely and DIDN’T have a relapse of breast cancer ever again? Has anyone heard any stories like this?
H xo
76 Replies
- @primek Are those stats relating purely to aramatos inhibitors or taking into account the advances in pathology, early detection etc.
- My mother had brutal sledgehammer chemo in 1986. She was told it was the strongest known to man. She'd found a lump, had a mastectomy and was told the cancer was in her lymphatic system. She didn't even have an oncologist. She was 51. There was no radiation, no hormonal therapy, no reconstruction. She is still alive today annoying the bejesus out of me at 83, and has said the hardest medical thing in her life was her heart valve replacement last year.
My sister found multiple lumps at 45, had a mastectomy, chemo, radiation and went onto Tamoxifen. It came back and she died at 47.
There is much we understand, and much we don't. Everyone's cancer is different, our bodies are different. We all just have to do the best for ourselves, which is very individual, and hope for the best, which is universal.
I'm throwing the kitchen sink at mine. However I'm yet to start the HT. I'll get back to you...
To me these stats speak for themselves.
The stats your onco gives you will give you odds without the tamoxifen. Which for some cancers are a 40% or more chance of recurrence. It all depends on uour pathology and nodes of course.
I gather you haven't been through menopause since on tamoxifen. Honestly that time of transition absolutely sucked but I eventually felt like me again. Starting a aramatose inhibitor only gave me some joint stiffness and and dryness in the nether regions...both have improved with some help from the chemist. I was worried it would be like peri menopause again but it wasn't.
Consideration to ovaries out might be an option but you are definitely in menopause then and will have to adjust to that. It's a hard decision if symptoms unbearable but do talk through options to improve symptoms with your oncologist.- I lived in Mullumbimby for over 20 years. We have a lower than 3rd world rate for vaccinations to our babies and as for breast cancer... Hardly anyone I know even tries to take them.
2 of my close friends have gone off them after less than 12 months finding the side effects untenable, another has been on Tamoxifen for 3 years and has no problems.
I know quite a few others who had breast cancers 20 and 30 years ago with no radiation and no hormone therapy and no relapse.
I have made a point of asking all and sundry of their experiences post breast cancer, regarding aromatase inhibitors, which your team will tell you is integral to your treatment - like everything you've done to date will be wasted if you don't take these pills that are gonna stop it coming back.
I start on Arimidex in a week or 2.
I'm hoping to put on some weight as a side effect. I weigh only 41 kilos and I'm, 5'5".
The first sign of a dry scabby vagina and I'm off em!
I would like to know the numbers on the women who present with a recurrence.
How many followed thru with the tablets and how many didn't. - Hi Holly, I ditched HT after the first bc and I had a recurrence in the same spot 7 years later.I didn’t dare not take Tamoxifen the 2nd time. But the only way I could put up with bad side effects was to take a mild antidepressant called Endep 10mg. It really helped- however after 4 yrs, I was getting quite a few health issues from Tamoxifen so I stopped it- that was exactly 4 yrs ago and I’m ok. We are all different and I think some women metabolize HT better than others.My oncologist was comfortable with my decision and that made me feel confident to stop. I know ladies who breezed through 5 yrs of HT and others who struggled only to have bc come whilst still on it. Where’s my crystal ball?!! Give it your best shot,talk it over with your oncologist because they should help you and not let you endlessly suffer.Goodness knows we’ve done enough of that!!
- At 43 and new to BC, I pretty much did what I was told. It seems the earlier you diagnosed the more likely you will die too young. So you do what you can. The stats suck, from a scientific perspective.
Who knows if it will work. Unpicking the research he exhausting. At 55 I'm over it
YAS! This is my whole thing! Every B Ca is unique and she can’t be held up as proof that HT is unnecessary or ineffective. But that’s the first time I’ve heard a story of no relapse (so far so good) without any hormonal treatment after the core treatment itself had finished. Very interesting!Artferret said:I do have one friend who had BC in her 30s, 2 lumps, don't know the details but had surgery, no further treatment at all, and so far 20 plus years later no recurrance. She's in her late 50s early 60s. Sometimes i think it's just the luck of the draw.- @Zoffiel Can I ask you, do you feel like you could have gone without Tamoxifen completely if the recurrence was slated for you anyway? How do you process that, it’s hurting my brain and it didn’t even happen to me.
- My oncologist was at least truthful to me when i asked how successful the endocrine therapy was in preventing recurrance as i couldn't find anything conclusive on the net. She basically said that according to the studies/ trials done it was successful but it was also a leap of faith...i wasn't surprised. Some days i feel like an 80 year old, hands, hips, knees, ankles. Gardening has to be done in stages which irritates me but i know if i don't i pay for it dearly with my hands. Would i give up the drug? No...only because I'd stress even more and now that i have finally got to a peaceful, calm stretch in my life I'm prepared to put up with all the crap that letrozole throws at me. I do have one friend who had BC in her 30s, 2 lumps, don't know the details but had surgery, no further treatment at all, and so far 20 plus years later no recurrance. She's in her late 50s early 60s. Sometimes i think it's just the luck of the draw.
