What to do afdter 4.5 years of tamoxifen . . .

Hi All

I would really welcome some help here.

I was dx in Dec 2005 with a 1.4 cm lump. node negative. I had lumpectomy, chemo and rads and then 4.5 years of tamoxifen. I went for my annual check up last week expecting to be told to take tamoxifen for 6 more months and then waved bye bye and was really upset when onc suggested I Stop tamoxifen now after 4.5 years and as I am still perimenopausal - I am 47 - go on 3 monthly injections to shut down my ovaries and go on an AI for 5 years!!!

I have a 1.4% per year chance of a recurrence if I take nothing and a 1% per year if I go on this hideous regime!!

I was really upset. I thought that because I was deemed “low risk” if there is such a thing I would have had 5 years on tamoxifen and that was it. I have osteopaenia and mild arthritis in my spine and I am so frightened at what Femara and these injections will do to me.

Given the low risk I am thinking I will just have a few more months of tamoxifen and then stop but . . . .I know I will then be thinking what if . …

ANynoe been in this position that can help?

Thank you

LOve to all

Alize, I haven’t been in your situation, in fact I am only due to start taking tamoxifen in the new year. But I have just been reading a new book by an Australian oncologist, which has a long chapter on hormone treatments. I was worried that if tamoxifen does not agree with me then there is no alternative to the pre-menopausal woman.

The relevant bit stuck in my mind, i will copy it from the book:
“One study has shown that after five years of tamoxifen, five years of Femara is helpful. Nobody really knows the right duration, or whether or not everybody should get a total of ten years of treatment, or even longer, and clinical trials are ongoing to work this out… In general if your prognosis was pretty good at the start(node negative, small cancer) the extra benefits are small. If you had node positive disease or a larger tumour, then it’s probably worth giving aromatase inhibitors a try”

There is a lot more information about the differences, you might like to get hold of a copy. Breast Cancer, Taking Control by John Boyages. I borrowed my copy from our local bc support group.

Hope this helps. If I were you I’d have lots more questions… Good luck.

Found the study in the references-
Goss, P.E. Et al 2005. Randomized trial of letrozole following Tamoxifen as extended adjuvant therapy in receptor positive breast cancer; updated from NCIC CTG MA 17 Journal of the National Cancer Institute 97: 1262-1271.

The stats would suggest that it is not worth it. The NHS loves handing out pills.

I am only 6 months into tamox. It is difficult to say what I would do until I was in the situation, but I am sure that I would say no to further treatment (if my stats were similar to yours), and look at the other options for preventing cancer i.s diet, exercise reducing xeno-oestrogens in the environment etc

Thanks for the book recommendation, it sounds interesting.

Thanks you so much for your replies.

AM going to see my GP and will let you know. Hope to get a copy of the book.

love ALise x

Hi Alise
Yes, do let us know. Not sure how much use the rest of the book will be to you, I think it is aimed more at those starting their journey. The early chapters were not all that useful to me, I am nearly at the end of chemo, but the hormone stuff was new to me and more detailed than I had come across before, but then again I haven’t done that bit yet, and you have. Just don’t want you to waste your money - can you borrow a copy? I wish I could lend you this one!
Good luck with the GP