Post breast cancer hormone blockers

[TheRealMummyPig]

My mum has spent the last 18 months undergoing gruelling treatment for triple positive breast cancer. She's had a lumpectomy, various rounds of two different types of strong chemo, radiotherapy and intravenous herceptin. She's now expected to take hormone blockers for five years. She started on anastrozole which made her feel dreadful and she came off it. She's now expected to start tamoxifen.
After all the treatments she's been through already does anyone know how crucial these tablets are?

I am taking Tamoxifen after treatment for breast cancer last year. I don't know how crucial the tablets are but I do know I am willing to take anything for reassurance that this horrible disease will not come back. I think if it's part of the treatment suggested by the doctors it must be beneficial. They have the knowledge and expertise to know what is right for me.

Agreed with the poster above, and I talk because I’m taking it. Tamoxifan might not give her bad side effects at all.

I'm taking Tamoxifen rather than the alternatives because the side effects are milder for me. I'd encourage her to give it a try. She will also be able to ask her oncologist for an idea of how they affect her survival statistics.

Thanks everyone. I've read that the science is unclear on hormone blockers and after enduring such a gruelling amount of treatments already it seems her quality of life is set to be impacted even further for the next five years. The oncologist seems to be only interested in statistics rather than impact on quality of life.

@TheRealMummyPig my DM has been through similar recently although couldn’t have the radiotherapy sadly due to some previous treatment from years ago.

She is also on tablets now, I can’t remember the name but not tamoxifen. She was feeling awful on them and was desperate to stop but the Dr was adamant she had to keep taking them. Possibly due to not being able to have the radiotherapy he would have liked her to have.

However over time, the side effects have really diminished and she’s feeling a lot better. Hopefully this might also be the case for your DM?

Sending best wishes for her and hope she feels better on the new meds.

I've been on Tamoxifen for the past 7 yeas (have to take them for 10) with a break of a year when I had Letrazole. No obvious side effects day to day on Tamoxifen although did have a polyp removed recently which apparently is a side effect of taking Tamoxifen.

Letrazole on the other hand was awful. It made my joints so painful I could barely walk and was hobbling around like an old woman.

Thanks @LaLaFlottes that's reassuring to hear your mum has adapted to the medication over time and is feeling better than she was

Thanks @VirginiaQ I'm glad to hear tamoxifen is less brutal on a day to day basis. Some of the other medications sound like they have dreadful side effects

Hi @TheRealMummyPig I'm on tamoxifen and it's OK. At the outset I asked for information from the surgeon about the difference it makes in terms of survival. The nhs have a predictor system that gives loads of info about this. It uses your personal details to give a better picture of survival chances taking into account all variables - meds, chemo, Radiotherapy etc. It's quite a tiny extra potential life span.
Here's a link
breast.predict.nhs.uk/tool

OP, I'm a little confused by your posting.

I have had two types of breast cancer, oestrogen based and triple negative (one in each breast and a year apart .

As far as I'm aware, hormone blockers are used only for oestrogen based cancers, not triple negative cancers. And herceptin is used for HER2 breast cancer. Not wishing to doubt you, but are you sure you have the correct information about her treatment?

In any event, in relation to oestrogen blockers, I was prescribed letrozole and, when I couldn't cope with that any more, tomoxifen. I stuck it out for about 4 years, with one fairly lengthy break, before I gave up. They made me feel about 90 years old and, in fact, when I looked at the statistics, they did not reduce my risk of dying by very much at all. The truth is that triple negative is more dangerous and that informed my decision to stop taking the blockers. However, I know that some people do very well on them.

I wish your mother luck and good health.

The hormone treatment as far as I know is used for hormone positive breast cancer and the predict breast tool online linked to below will tell you what adds to survival rates. In my case I think its something like a 6% more chance of being alive in 10 years so if 100 women stopped taking it 6 would die within 10 years. Best to discuss with her team, ultimately its her choice, there are also good Facebook groups for women with breast cancer.

@FallenMadonnawiththeBadBoobies
My DM has triple positive breast cancer - not negative. So there is an ER component to it.
The NHS calculator is interesting. It looks like taxing tamoxifen for 5 years would be the difference between 94% survival 5 years later versus 100%. I'm sorry to hear it made you feel so awful 😞

I had BC two years ago, negative ER though so not on hormone blockers.
I belong to a group of lovely women who have all had BC and the majority are on Tamoxifen or similar years later.
I have to say it affects all their lives long term wheras I don't have those problems. More so those who were pre-menopause before hand. I don't know how old your mum is? Many of them have switched drugs and found fewer side effects.

However I haven't got a drug I can take to prevent recurrance and if there was something I could take I would.

I think she would be best to listen very carefully to the advice from her doctors. If all else fails she could stop it later. And TBH side effects from Tamoxifen might be a walk in the park compared to chemo and all the other stuff she has already had.

Apologies OP - I need to learn to read, it appears 😳.

The Predict tool is really useful. The really great thing is, as time passes and they feed more recent statistics in, you can see that the chances of survival are getting better.

I think the science is pretty clear that if a hormone positive breast cancer hormone tablets increase survival rates and Predict model gives a rough estimate. The treatment process is gruelling and can be incredibly hard to cope with mentally and some people do stop things temporarily or permanently but that will have an adverse effect on survival rates and reoccurance rates so its something to discuss with a doctor. I was at breaking point with my treatment and booked a few nights away and I do not know if something like that would help or asking doctors about a short break. I presume your Mum is not that old if offered Tamoxifen but its something where would get all the facts then weigh up what she wants. Side effects I have read can change over time and some medicines doctors can prescribe other things to counter side effects so worth asking. There is a cancer support thread on here in general health she could join if she wants to chat to others.

Thanks @Silkierabbit My DM is 70 next month. She started on anastrazole as she's post menopausal but it was so awful for her that the oncologist has agreed to let her try tamoxifen instead. It just seems unfair that after everything she's suffered since diagnosis that these tablets are going to be so unpleasant for such a long time. Hopefully she can stand the side effects and that they do what they're supposed to.

I've done 5 years of tamoxifen and am half way through 5 years of letrozole.

Although I do suffer from side effects, ie aching joints and tiredness, they are not all consuming and to be honest, I'm not sure I really notice them anymore.

I have found that certain brands made me feel much worse. Through trial and error, I've found that the original Letrozole under the name Femara is the best one for me (apparently it is more expensive so I needed to get my GP to specify it on the prescription).