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

Brenda5
Member
8 years ago
Exactly why I have given myself a 2 week half dose break from Tamoxifen. My quality of life was crap. So much so that I was thinking I may have been better off just letting the cancer take its own course. I asked my GP could I see the psychologist at the Cancer Care building but he said, 'Oh no, that's only for cancer patients actually having chemo, not for hormonal therapy patients.'
Kiwi_Angel
Member
8 years ago
After I finish my chemo I have to go on tamoxifen for 5 years. Pretty apprehensive about this given all the horror stories I read about it. Will just have to wait and see until I’m actually on it and how if affects me - like everything else on this journey it’s wll so individual. Worried my husband will end up with a dried up, grumpy, overweight, partially bald and lopsided wife!! The man is a saint so far. Bloody cancer!!
iserbrown
Member
8 years ago
I don't know............we all react differently to medications, some get the whole gamut of side effects and others nothing so I guess it would follow that some may never ever have a recurrence but is that a risk you want to take?

Holly Prevails said:

All the stats and percentages give me a headache.

it will do your head in as there's lots of years of knowledge and research that go into these stats

I have an Aunt and a neighbour who both had breast cancer recurrence, ignored it until it was too late! We're all different however I don't plan on following this path hence as much as I hate my treatment at times, I am in it for the long haul!
Summer_Prevails
Member
8 years ago
I hope you can stick it out @lrb_03! I’m going to try Anastrazole after hating Exemestane and being a 40yo in a 106yo body from the joint pain.

I would love love love to talk to any woman who made the choice to ditch it and just ‘live free’ again and stayed fine. And that brings up another point: if I chose to ditch HT at this age compared to say 20 years down the track, would my BCa come back no matter the age? Or would I be able to live a side-effect free (if not worry free) life for 10-15-20? years anyway before BCa was ‘destined’ to come back? I’m probably not explaining that very well..but basically what I mean is would it be a definite certainty that NOT taking HT for 5+ years as of this day would bring my cancer back?

If the stats say that it reduces cancer coming back by 80-odd %, then who are the other 20% and what happened to them exactly? Did they take HT and had cancer come back all the same? All the stats and percentages give me a headache.
lrb_03
Member
8 years ago
I'm sure the stories are out there.
You do ask a great question. I'm on my 2nd AI, after approx 2&1/4 years. My oncologist is talking about changing me to Tamoxifen due to the side effects I have, but for all those, I'd rather stay with what I know, now than go to the risks associated with Tamoxifen. After all, I'm nearly halfway, and my med onc isn't talking about extending it beyond 5 years
kmakm
Member
8 years ago
Bloody good question

Forum Discussion

Ditching the 5-year sentence of hormonal therapy?

76 Replies

Recent Discussions

Cording/axillary web syndrome

Regrowing hair

Genomic Testing experiences

Can anyone use a Prairie Wear Hugger Prima 2XL black bra?

Radiation tips?

Disclaimer: