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

Kiwi_Angel
Member
8 years ago
I’m currently waiting in my oncologist office for my appointment! This is on my list of questions. I would be too scared not to take it and hope I fall into that lucky group of women who have minimal side effects but I have had some sensitive reactions to different contraceptive pills in the past so makes me a little anxious about hormone type things. Just will have to continue to take it one day at a time like we all do.
kmakm
Member
8 years ago
@"Kiwi Angel" I have high levels of dread round taking the AI. However I keep reminding myself that many people have few problems. I'm trying to keep an open mind. I'm seeing my oncologist about it Friday fortnight. I will be questioning her very closely based on what I've read here.
iserbrown
Member
8 years ago

Kiwi Angel said:

I’m really starting to dread taking this Tamoxifen more than the surgery and the chemo - the next thing to get anxious about

Please don't stress on it too much! I settled into taking Tamoxifen at a set time of day, it took a little experimenting and settled on just after lunch. Routine is the key.

Being hormone receptor positive meant going through the Zoladex route as well as.

It has been 3 years and now have hyperplasia and high risk for Uterine Cancer hence at my next Onc appointment in May I will be going off Tamoxifen and onto something else

Not everyone falls into my category and most sail through with hardly any side effects, as I say for me, it was about routine of when I took it that suited my body.

Take care, you'll be right!
Zoffiel
Member
8 years ago
It is incredibly difficult to sort out what is responsible for what when it comes to side effects from BC treatment. To be fair, we need to know what could happen and need to be taken seriously when it all fucks up. Thing is, there are thousands of women who take the leap of faith every year. It doesn't wreck everyone's lives.

When I started taking Tamoxifen in 2007 I had pretty much zero side effects. A month or so of hot flushes then my periods came back and I never gave it a second thought. At the time I wasn't convinced that the apparent resumption of my menstrual cycle was a good thing when I had hormone hungry cancer cells but no-one else seemed concerned, so I just went with the flow. In hindsight, maybe not such a great plan.

I was not at all worried about Letrazole as past experience had suggested I'd be fine. No. Maybe it's a matter of no pain, no gain? I hope so, as I'd hate to think I was doing this for nothing.

You went into chemo hoping to be on the low end of the Totally Screwed Up scale. Take the same approach to the next stages. Mxx
Summer_Prevails
Member
8 years ago

Zoffiel said:

I think this is very unfair and verges on being unethical...
..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.

OMG YAS. This.
Thank you! I am so glad I made this discussion because I’ve honestly been saying this exact thing to everyone who would vaguely listen and they basically wrote me off as being paranoid/fragile. I could not agree more @@Zoffiel. At every single major meeting with either oncologist radiographer surgeon whoever, I swear they all just gave me this practised polished totally abridged version of what would REALLY happen to me. And I of course was too heavily fogged/overwhelmed/exhausted to be sharp and on the ball enough to ask more detailed questions and really push for answers at those times. As a result I ended up knowing about 30% of what I now know is the truth about all of those treatments I endured. And I get that they don’t want to get sued for being seen to discourage me from having potentially life saving treatment. But why can’t they be more honest and detailed and REAL about it? Why can’t they tell me the full gamete of what having an axillary clearance means upfront for example, or what ‘some joint stiffness’ really translates to? I would have done things very differently if I had been truly informed! I would have been less afraid of the unknown. I would have made decisions coming from a more solid place rather than that awful fear-based grey wobbly zone I’m sure you’ve all been in.

I do think it’s verging on unethical. It’s like they omit the details just enough to make you take the pill, and keep you alive. Great, very grateful my treatment worked and I didn’t die. But it’s like selling me a car and not telling me the fuel system is gonna crap out in six months. It’s dishonest somehow.
Kiwi_Angel
Member
8 years ago
I’m really starting to dread taking this Tamoxifen more than the surgery and the chemo - the next thing to get anxious about
kmakm
Member
8 years ago
@iserbrown SO true :#
iserbrown
Member
8 years ago
Awesome as it is so true!
kmakm
Member
8 years ago
@iserbrown It was me quoting Liz O'Riordan quoting Eric Topol:

"Eric Topol, an American physician, in his book 'The Patient Will See You Now', says that the patient is the single most unused person in healthcare."
iserbrown
Member
8 years ago
Now there's a response from someone who has been extremely frustrated by the system and what it can put us through. It's only when you're into it and the side effects start to take hold that the response can be somewhat dismissive if you're not presenting as cookie cutter............

There was a quote on here the other day somewhere, that said "The Patient will see you now" - a book written by Eric Topol.

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Ditching the 5-year sentence of hormonal therapy?

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