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

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?

I’ve been on Letrozole 8 months and I despise the side effects it creates! I wrote this in the wee small hours one night. Necessary EvilLying in bed wide awake,Everything points to the meds I take.The side effects give me the shits!Reality of 112 more months, thrills me to bits.Occupied with the weight I’ve gained,Zombified by insomnia hurts my brain.Oncologist I might just Obloguy,Letrozole is my sentence and time drags by.Ecstatic is not how I feel, it really is a lousy deal!Just excersizing my right to a pity party... a new day and a better attitude.... but Letrozole definitely sucks!!

@kezmusc - forewarned is forearmed so thanks for the links.I go looking for the most devastating example I can find of everything.I've read what I should be having is some THZ1 with equal portions of fulvestrant.(sounds like TLC with a ciggie)As soon as I find out what they are I'll investigate how they react together and get back to youse all.Yeah sure! LOL@kmakm - My oncologist wanted me to start taking calcium immediately until I told him I drink a litre of lassi a day, am a big cheese eater and love hot chocolates and lattes. I also remind him that I had a heart attack 2 and a half years ago and don't think I need to add to my heart condition (another area where drugs are dished out willy nilly) by adding extra calcium.@"Holly Prevails" and @Zoffiel - The only specialist that has been brutally honest with me has been my radiologist. She told me my circumstances were bleak and that she would be frying me down to the bone, if necessary. She's the only one that has said there will be pain and here are the painkillers. I love her and so do all her other patients. When strolls thru the waiting room she talks and laughs with all her patients, is very tactile and naturally friendly. The rest I wouldn't trust to save myself!!!

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...

But we do trust them to save ourselves @PatsyN Despite all our fears and misgivings, our insecurities and internal conflicts, we hand ourselves over and hope for the best..Ive had my trust betrayed more often than its been rewarded, but what choice do I have?Some of the medicos I've met have changed my life for the better. Some have been arrogant, dismissive a***. It seems the bigger the a***, the bigger the ego and the less substance there is to the soul. The worst blunders I've experienced have been perpetrated by people who are totally incapable, despite all the evidence, of admitting they f*** up. They have also had the highest qualifications.I do make allowances for those who's personality types are better suited to life in a laboratory because they have no empathy for living things. I just wish they wouldn't venture out into the public domain.

Ditching the 5-year sentence of hormonal therapy?

76 Replies

adean
Member
8 years ago
Realy interesting subject a lady in my support group who has been with us and on tamoxifen was a mess. I didnt tealise till she came of it and the transformation over a short time was unbelieviable but recently her cancer returned.and she questioned was it because she stopped? Who knows she said regardless she still would have stopped it to feel ok again.many of us have not many issues re the meds, others of us suffer who knows whats the go.tricky isnt it. Adean xx
Zoffiel
Member
8 years ago
Moderated for using the 'a' word. Here we go again.
Zoffiel
Member
8 years ago
But we do trust them to save ourselves @PatsyN

Despite all our fears and misgivings, our insecurities and internal conflicts, we hand ourselves over and hope for the best..
Ive had my trust betrayed more often than its been rewarded, but what choice do I have?

Some of the medicos I've met have changed my life for the better. Some have been arrogant, dismissive a***. It seems the bigger the a***, the bigger the ego and the less substance there is to the soul. The worst blunders I've experienced have been perpetrated by people who are totally incapable, despite all the evidence, of admitting they f*** up. They have also had the highest qualifications.

I do make allowances for those who's personality types are better suited to life in a laboratory because they have no empathy for living things. I just wish they wouldn't venture out into the public domain.
kmakm
Member
8 years ago
@"Kiwi Angel" It's all food for thought, that's for sure.
Kiwi_Angel
Member
8 years ago
Interesting article on the Vitamin D @kmakm
kmakm
Member
8 years ago
@PatsyN It's all so bizarre.
PatsyN
Member
8 years ago
@kezmusc - forewarned is forearmed so thanks for the links.
I go looking for the most devastating example I can find of everything.
I've read what I should be having is some THZ1 with equal portions of fulvestrant.
(sounds like TLC with a ciggie)
As soon as I find out what they are I'll investigate how they react together and get back to youse all.
Yeah sure! LOL

@kmakm - My oncologist wanted me to start taking calcium immediately until I told him I drink a litre of lassi a day, am a big cheese eater and love hot chocolates and lattes. I also remind him that I had a heart attack 2 and a half years ago and don't think I need to add to my heart condition (another area where drugs are dished out willy nilly) by adding extra calcium.

@"Holly Prevails" and @Zoffiel - The only specialist that has been brutally honest with me has been my radiologist. She told me my circumstances were bleak and that she would be frying me down to the bone, if necessary. She's the only one that has said there will be pain and here are the painkillers. I love her and so do all her other patients. When strolls thru the waiting room she talks and laughs with all her patients, is very tactile and naturally friendly. The rest I wouldn't trust to save myself!!!
Brenda5
Member
8 years ago
From reading online it seems much of our problems are directly from Menopause which can be pretty brutal on its own. Women with no breast cancer may allay some of the symptoms with hormone replacement therapy but we don't have that option at all.
One menopause study said symptoms may extend for up to 8 years so I can imagine why we blame our Tamoxifen or AI's for side effects.
Be uplifted in knowing in a decade we will be better than ever before. We just have to ride it out. Thank goodness for this forum where we can have a rant every now and then and find some sympathetic ears. <3
Zoffiel
Member
8 years ago
http://www.abc.net.au/news/health/2018-04-24/making-sense-of-seemingly-contradictory-health-news/9343684
This might help a little with some of the terms that you find in 'research' articles. Not exactly high end, I know, but there seems to be a fair bit of Googling going on which will, without exception, find you an article that aligns with what you want to hear.
It's all about the source, the size of the study, who pays for it and how the information was peer reviewed.
kmakm
Member
8 years ago
@Sister @"Kiwi Angel" I spoke to my GP last week about taking calcium to support my bones while I take the AI as it can lead to osteoporosis. She said that the best way was to get calcium from diet (four serves a day I think for women in menopause) as cardiologists aren't happy about the supplements as apparently they can cause heart problems. She said the best thing to take for bone health is Vitamin D. I don't make it very well so have been taking it for years.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125316/

I have read that a Vitamin D deficiency has been connected to higher rates of breast cancer as well. The article below from 2016 says it's been "linked", I'm not sure it's considered definitive yet.

https://www.cancer.gov/news-events/cancer-currents-blog/2016/vitamin-d-metastasis