My oncologist has told me that it is up to me whether or not I take tamoxifen once I have finished chemo and rads. He says that because I have had my ovaries removed tamoxifen will not make much difference to my prognosis and comes with side effects such as DVT and uterine tumours which may outweigh the benefits.
He wants to save aromatase inhibiters in case needed in the future.
My BC was Oestrogen +ve 7/8, grade 3 with very heavy node involvement.
Any advice gratefully received!
Thanks,
Kate x
I had an oophrectomy in January due to a BRCA2 diagnosis. I was on tamoxifen before the op (hormone positve 7/8, grade 3, node involvement and extra nodal spread). My onc never even considered me stopping the tamoxifen. The only conversation we had was about switching to an AI as I am now post menopausal, but she believed that the bone thinning effects of an AI was not something I needed at my age (42) and I will probably switch to them after my 5 years on tamoxifen.
My understanding is that our bodies still produce hormones from our fat cells and tamoxifen still blocks these hormones.
As you know heavy node involement does mean you are at more risk of a reoccurance and I don’t understand why your onc is saving AI’s for later. Later when? When it has come back? For me the whole point of tamoxifen and AI’s is to help stop it returning in the first place.
If it were me I think I would like to have another conversation with the onc.
Hpoe this helps.
That sounds very strange taking you off all hormone therapy. I agree with all that cat107 said. Perhaps ask to see another onc for a 2nd opinion? I wouldn’t have confidence in an onc who stops treating you actively to reserve the treatment in case you get BC again later - he’s increasing the chances that you might get a recurrence.
Sarah x
Thanks for your replies. They echo my thoughts exactly.
I have always told my onc that I want to throw everything at this so was very surprised when he suggested not having tamoxifen!
I am very aware that I am at a high risk of recurrence/secondaries and if this happens I would always wonder if Tamoxifen would have made the difference.
I don’t know much about AIs, I’m going to have to research that one but I’ll definately talk to the onc about that one.
He said he’d like to save it for ‘a rainy day’ so I need to know what he meant by that.
My brain was not completely in gear when I saw him as I was only 5 days post tax 5!
He had also just given me the good news that my tumour markers have gone down to within normal levels so I was a bit dizzy from hearing the first bit of good news I’ve had since January!
Take care,
Kate x
Hi Kate
I went straight onto AIs after oophorectomy.I had been taking tamox for the 2nd time - this time was a recurrence after 12 years, when tamox had perhaps held things at bay for a while.
My understanding is that after oophorectomy we still have aromatase that converts other hormones from fat and adrenal glands into oestrogen and the AI’s literally inhibit the aromatase from doing this. (I’m sure someone will come on and correct me if I’m wrong, but thats my understanding of how they work and what they’re for).
There was no question of that not happening - I had a grade 3 tumour that was hormone +ive 8/8.
I know every case is different but it may be worth another conversation, even if you just get to understand why he isn’t going for it and it makes sense to you. I don’t much fancy the ‘rainy day’ argument myself but it might have been that he could have explained your specific situation more clearly - I think its worth another conversation.
Hope things go well
mon xx