What percentage of women have a recurrence of Oestrogen receptor positive HER2 negative cancer if they do not take Tamoxifen or similar.
I think it’s an answer we would all like to know but not sure if there are stats for that ?
You can take the hormone therapy and get a recurrence .
Or you might not take it and not get a recurrence.
I read a stat that said 29 women take AIs for 1 to benefit . Can’t reference that unfortunately 
. There is a great podcast
Menopause and Cancer , one about hormone therapy with an oncologist, talking about AIs.
There doesn’t appear to be any research done on that specific point, partly because many women stop taking endocrine treatment without telling their medical team so any results based on the smaller percentage of those known to refuse it, would be skewed anyway. On top of that recurrence depends on initial Stage and Grade plus age so how meaningful these even smaller sample sizes would be, is moot.
I attach a report from 2021 on er+ recurrence for what it’s worth. Yes, some women get recurrence whilst on endocrine treatment but there is incontrovertible evidence that it has significantly reduced breast cancer deaths.
The bottom line is none of us know and the medics aren’t able to tell us because they don’t know either. Recurrence is something which everyone who has had a cancer diagnosis of any sort, not just breast cancer, has to learn to live with alas.
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Tigress. Thank you for the report. I think I’ve come to the conclusion that it’s all luck of the draw, if it’s going to come back as either primary or secondary it will & I will have to cope with it. I’m 4 months post surgery & 2 months post radiotherapy & don’t take the Tamoxifen as I prefer to feel well. I’m concentrating on putting recurrence to the back of my mind & trying to get on with my life & hoping I’ll be one of the luckier ones.
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Yes Balchik I think it’s easier to accept that no statistics, no anecdotes from fellow BC women (favourable or unfavourable) and no prognosis from the medical teams can actually reflect what is going to happen to each of us as individuals. They may do but we won’t know until the end. Looking for evidence, which, as a retired lawyer, I did at the beginning, is an exercise in frustration and disappointment. The trick in refusing treatment is to not let the worry of the potential consequences spoil the improvement in your health and well-being. You’re still very close to it all and it’s going to take quite a bit longer for what has happened and what might happen to recede in your thinking but it will eventually.
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Hi there . I had lumpectomy and radiotherapy .
I thèn started tamoxifen but my side effects
have been horrendous. 2 weeks ago i was taken off it for 4 weeks and am feeling a lot better. I have an appointment in 2 weeks to decide wether i go back on them. Although i know it reduces the risk of reoccurrence but i worry about my quality of life for tge next 5 years xx
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I had the same, lumpectomy 31mm lump, excision to get clear margins & 5 radiotherapy sessions. Radiotherapist told me it was best to take Tamoxifen, but it would only give me an improved chance of 1-3% if I were not taking them. For me at 76 I’d rather be well & not suffer any side effects at all. Time will tell if I have to face a recurrence, but my quality of life is good at the moment.
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No one knows the percentages but I love to research so I’ll add in what I’ve found although it’s by no means scientific, I am not a scientist, and this is purely anecdotal. When women come on-line talking about getting secondaries I’ll look up past comments and see what their treatment plan was. More often than not I’ll find they didn’t take endocrine therapy as prescribed. It’s so prevalent in fact that I have decided to take it as long as they’ll let me which hopefully will be the remainder of my long life unless something better comes along. And in the states we just lost a celebrity who had been quite honest about her breast cancer and treatment. Shannen Doherty who died at 53. She did not take tamoxifen after her initial diagnosis and treatment.
Hi @balchik we can’t be all able to choose like that unfortunately…I was 43 when first diagnosed and the thought about not taking the treatments that my oncologist recommended and put me on never ever crossed my mind. I was even angry with him that he didn’t prescribe more chemo.
At 43 years old I want to see my children getting married, see my grandchildren so I would take everything that is thrown at me…and never think not to even if the side effects are awful…not when I haven’t lived my life yet it feels like. It’s a personal choice of course and I would not recommend not taking Tamoxifen. The fact that you are here on this forum and asking question like that shows that you are not 100% sure.
Good luck with whatever you chose to do and take care.
It’s such a personal decision that we all have to grapple with. My receptors were 8/8 so will be very receptive to anti-hormone treatment and I’ve just found out I will also be having zoladex alongside tamoxifen. At 47, for me, it feels like a no brainer to take them. I know there’s no guarantees and I could still end up with recurrence, but I think I would feel worse if I don’t take them and have a recurrence than if I do take them and have a recurrence, because I would think oh well I did all I could.
Very, very personal choice and I don’t there’s a clear black or white right or wrong decision. We all have to do what we think is best for us 
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Hi mun4o, You’re absolutely right, I have doubts every day that I may have made the wrong decision not to take Tamoxifen, my age has been the deciding factor, at 76 I feel I can take the risk, had I been 43 I would just have taken them. It is all about personal choice down to our situation. All the best
Hi - I think that’s a question we all consider when battling side effects. Your oncologists should be able to give you some information. I used the NHS Predict tool - if gives you survival rates, which might help you make some decisions. It’s a tough one and so personal but they wouldn’t recommend the treatment unless there’s a benefit. I hope this helps
I’ve read it is quite a bit. Unfortunately the percentages go up each passing year beyond the 5 year mark. I don’t think it is a matter of Tamoxifen, Arimidex, Lumpectomy or Mastectomy. They say each treatment helps and give you an edge, but they don’t know who gets the edge and who doesn’t. I had a lumpectomy, chemo and rads. I didn’t take Tamoxifen as it caused some very dark thoughts and I wanted my life back. Well, I had it back for 13 years, but the cancer has come back in the same area and the same type. No one will ever know why.
It does seem to come back for a lot of women. I could cope if it came back exactly as before after a good few years & surgery removed it. I think I’ve been really lucky as I didn’t seem to have any problems having 2 surgeries, lymph nodes removed & radiotherapy. My surgeon left me with scars that are already disappearing, it’s the thought of coping with a cancer that isn’t curable that’s so scary, but if it happens people do cope somehow.
I would rather have had these past 13 years of good health, raising my kids and enjoying my life than trying to keep mentally stable on a drug that may or may not have helped. I don’t know what the next few years have in store for me, but even with my recurrence I can say I’ve lived a good life.
At 76 and post menopausal, why didn’t they try Arimidex (Anastrozole) for you?
I’m with you on that, I want quality of life not tolerating any side effects from Tamoxifen or worrying what else the medication is doing to my body. If I were younger I’m sure I would feel differently. All the best. I have osteo arthritis & rheumatism, Tamoxifen was considered the better for me.
Oh, I see. I forget some of us have other conditions too. I will be 60 next month and if I was facing this for the first time I would be totally cool with skipping the side effects of the drugs. I guess I feel fortunate since my oncologist put me on Arimidex right away and so far so good. It’s only been 6 weeks, but the only thing I’ve been feeling is a tad more angry. I’m not sure if that is from the lack of estrogen, recurrence diagnosis or the politics right now :-).
I’m due my 3 month post op follow up on 23 Oct, except it will be 5 months since my surgery. I don’t really feel that I’ve been given a lot of information about a recurrence other than take the Tamoxifen or it’s likely to come back & possibly as metastasis, then you could die. It shocked me, but I still haven’t taken the Oestrogen blockers. I’m really hoping I’ll be one of the lucky ones. I know my family wanted me to at least try them, but I can’t.
Hi @rockym my view has always been that if one takes the personal decision not to take endocrine treatment, that is a legitimate choice as long as you are prepared to own that decision if it comes back. You clearly do, so fair enough. I’m sorry about your recurrence but hope the treatment is effective.
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