Staying on Tamoxifen after 5 years


I’m new to the group and this is my first post , although I’ve always visited this forum for reassurance over the last 5 years .

I had IDC grade 2A, lumpectomy , LICAP reconstruction and radiotherapy , diagnosed Nov 2015. No lymph node involvement . Tamoxifen since then .

I’m now 58 and due a telephone consultation with my BCN next week . Not sure when I will get my 5th year annual mammogram but hopefully soon .

my question is , should I continue to take tamoxifen for 10 years ? I’ve read such conflicting information re this . I’ve been ok on it and almost feel as if it’s a “safety net” , particularly as I sometimes use an oestrogen gel for vaginal dryness .

last time I asked the BCN she said it would be my decision as to whether to carry on with it , but I just don’t know !

anyone else been through this particular scenario , and if so , what was your decision ?

thank you xx

I am in the same situation but am on letrozole and have tolerated it quite well apart from the usual joint pains!

@jtd  - I am about a year behind you. I’ve been on Tamoxifen for about 4 years but this autumn my consultant wants to change me to Anastrozole or Letrozole for the rest of the 10 years. My original consultant wanted to keep me on Tamoxifen for the full 10 years. I was pre menopausal when I was diagnosed and now post menopausal. I guess we all have our individual diagnosis and treatment, and consultants also have differing opinions. I had node involvement so maybe that’s why they want 10 years. I would definitely push your consultant/team for advice - it’s not really helpful if they let us decide on something like this, we haven’t read all the latest research or studies. All the best with your decision. Evie xx

Hi jtd, Warrier Jane, Evie, za and everyone else,

I’m just coming up to 7 year’s from diagnosis. A bit like Poppy I found my lump. I was too young to have regular mammograms on the NHS. I had noticed a slight pinching feeling inside my breast, a few times before I found the lump in the precise location of the internal pinching.

Re whether to extend Tamo beyond 5 years:

  • My onc said if the bc had have been in my nodes at the point of diagnosis, she would have advised me I should continue taking it for another 5 years (10 in total) due to the degree of additional protection.
  • However, because bc hadn’t spread to my nodes, she said it was up to me, and that I should weigh up the protective benefits against quality of life factors.
  • She did advise against having a break from Tamo (of anything more than a couple of weeks), since all the research is based upon taking it continuously.
  • I asked if there was anywhere I could read about the research results and she gave me the names of the 2 study trials:

The ATLAS trial   

The aTTom trial 

  • The studies indicated only a small increase in protection by extending Tamo for another 5 years for my stage/grade with no nodal involvement.
  • However - the studies did indicate that some protection was provided beyond the 10 year period, towards 15 years, although the trial hadn’t been fully assessed for that length of time.
  • At the end of the day, it was reflecting upon a secondary cancer scare (year 3 after diagnosis) which led me to my decision. A report (following nuclear bone scan) showing large areas on 2 of my ribs, stated highly suspicious of secondary METS. My oncologist took my hand (which is very unlike her) and said she hated giving bad news, I should prepare myself for the worst, that they’d need to check my organs…anyway, after another 2 weeks and more scans… they concluded fractured ribs (which I must have done years before…).  Ironically, in hindsight I think laying a patio singlehanded (and/or fixing a fence singlehanded), may have aggravated it…and my reason for doing the patio - a way of me showing myself I was somehow over the breast cancer!

What made up my mind re whether to extend Tamo?

I thought about how I’d feel if I had another secondary scare (or worse) in the future and had stopped at 5 years. I’d always be wondering… if I hadn’t have stopped the Tamo…Bingo, decision made, I’m in it (on it) for the long haul! 

If I’d been on Letrozole , I think how much it had/hadn’t been affecting my bones would probably have been a factor in the quality of life v protective benefits debate, primarily due to still being relatively youngish (in bc terms anyway).

Remember, you are not signing in blood that you’ll take it for 10 years! 6 years is still better than 5 re protection! 

It’s a very personal decision and what’s right for you that counts - hoping the above helps your individual debates!

Sorry the above is so long - hopefully the bullets make it easier to digest!

Seabreeze x