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
Over the years, a repeating theme in these sort of conversations is the feeling that side effects of AI drugs are either underplayed or dismissed as being extremely uncommon. I think this is very unfair and verges on being unethical.
Yes, the drug companies list the 'less serious' side effects: dizziness, hair loss, muscle and joint pain, fatigue, sleeplessness etc. But then they mitigate the information by saying the majority of users do not have 'serious' side effects. You know, strokes, heart attacks, depressions, fractures due to loss of bone density and other great stuff. What isn't said is how terribly common the suite of miseries that accompanies the drugs really are.
Would we still take it? Quite probably. It's the absence of true informed consent that pisses me off. Then your general misery is discounted as being unusual, passing, all in your head and we don't want to frighten people away from the best chance of survival on offer. Humph.
It brings to mind the attitudes to post natal depression that proliferated until pretty recently. It was rare, uncommon, passing, all in your head, you will get over it and we don't discuss it because we don't want you to worry. As if you could talk yourself into wanting to harm yourself or your child.. How patronizing and destructive was that?
- Hi @iserbrown
I'm just following up now. - iserbrown said:Brenda5 said:It is a good link, thank you iserbrown but it was written 18 years ago. Are the problems still the same or now things are getting better?
@Marianne_BCNA
can you clarify - Brenda is wondering if things have changed since this report was written? Perhaps an updated research document on Tamoxifen may help a lot of people as there are some on here that would love to give up on it! - Makes you wonder huh. @Brenda5 The odds are better unless the stinky thing mutates! WTF.
thats awesome about your mum @poodlejules - I too hate what Letrozole is doing to me! I feel sore and stiff all the time especially in my knees and toes and can feel my weight creeping up. The night sweats are back and sleep is a fond memory. Both of my tumours were HER2+ and one 10% ER+ hence the 'need' for AI's. On the other hand there is my dear Mum, diagnosed at 43 ........not sure what type of BC as they didn't ask too many questions back in the 70's (!) and none of her records exist (I've checked)............but we're thinking ER+......single mastectomy , some lymph node removal, no radiation, no drugs, no lymphedema......she turns 85 next week ! :)
So from those articles we get better odds but no guarantees hormone therapy will absolutely keep the cancer away.- Agree with feeling like running away sometimes as well and just go F it all.
I've just read these two interesting but somewhat uninspiring articles which are recent. Now that I have yet again depressed myself (bugger you Google) I am off to work. Blah
http://www.bbc.com/news/health-41928647
https://www.sciencedaily.com/releases/2018/02/180212123332.htm - No cats for me @"Holly Prevails" but I understand your sentiment.
- @"Holly Prevails" I so totally agree with what you say and I haven't even started on mine yet. This is where, I believe, the real battle begins.
Zoffiel said:
I did what I was told too. I agree the researching is exhausting. A, I’m not a doctor so vast majority of info isn’t available to me, B, I am trying to be healthy again and it’s depressing to be immersed in obsessive research, C, it takes AGES too! I wish there was a patient-doctor interface that lets us be told the same info they are, and not have to become Google Professors Sigh. I’m either going to start a revolution about crappy HT research and get super active about it, or run away from it all and be off all treatment and live with 200 cats and dogs somewhere in the mountains.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
