Trying to decide if I should have hormone treatment

Hi there.

Sorry in advance…  this may be a long story!

Diagnosed with Bc end of last yr. Had lumpectomy 2 weeks ago and due to start radio in 6 weeks. Tumour was grade 1 with er of 8 and pt? 8 so the consultant is recommending tamoxifen.  I am nervous for a list of reasons.

I am 45 and my hubby and I were hoping for one last ditch attempt at having a baby this yr. I was told tamoxifen is dangerous for a baby. This is not my only reason and the chances of me falling pregnant are slim to none.

We have been through 5 cycles of ivf previously but my uterus is riddled with fibroids. I believe that the ivf treatment has contributed to the fibroids and also contributed to the BC… which my consultant reluctantly admitted there is an increased risk.

The result of the fibroids mean that I suffer badly from heavy periods 2 weeks in a month. I am taking tranexamic acid and mefenamic acid. The consultant found out that tranexamic and tamoxifen are not compatible so I probably would have to drop the tranexamic. And the same with the mefenamic. I really don’t think I can cope if I cant take anything to control my periods.

My gyno offered me to have a hysterectomy which i declined.

I have also heard of side effects of the tamoxifen being thickening uterine lining. I really don’t want to mess my body up anymore and am so scared.

Is there anyone here in a similar position?  Can I decline the treatment?

Thanks in advance 

Hi Melville

sorry you been having a hard time…you can decline any treatment…that is always your right as someone with capacity to make a decision…but I would say, make sure any Decision you make is informed…the higher the Allred score, the more beneficial hormone therapy had the potential to be ( mine was ER 7/8) …speak to your team…tell them your fears…at the end of the days, it’s about weighing up the risks and making a decision based on these and your priorities…we are all very different people and have different starting points…for example; I have had primary BC 3 times, I am not a risk taker and my real fear is not another recurrence , but getting secondary BC…so my priority is avoiding this at all costs if possible…which is why I will take my hormone tablets for the 10 years recommended, even though the side effects are not great…however, I am post menopausal, I am 57, so have grown up children/grandchildren and am not in the same position as you.   I wish you well with any decision you ultimately make.

Hi Melville

When I saw your title, I thought how foolish anyone would be to turn down treatments of any kind. Then reading your post, I was so moved. It brought back a lot of painful feelings about being unable to carry a child, living a childless life and facing secondary breast cancer with just me and my husband muddling through. My heart goes out to you but I also know there comes a point in the infertility treatments where enough is enough. There is only so much hope and pain a couple can bear, especially the woman, who usually pays the price, both physically and socially.

As for the period issue, again I really feel for you. I had probably 3-4 days a cycle where I wasn’t suffering with either PMS or prolonged painful periods. I think I’m the only woman I know who welcomed menopause with open arms. Not only the end to all that pain but also an end to that niggling hope that this month it might work. I truly hated my body for letting us down and menopause brought us such a release, despite all the grief and loss. A few hot flushes was a small price to pay.

There is little point in wondering about the cause of your breast cancer. What’s done is done and you can’t change things. But in my local secondary bc support group, almost half of us have at some time had infertility treatments of different kinds. Coincidence? If you need to know the cause, you can latch onto that but it won’t change anything.

You are fortunate that your breast cancer was caught early but it is heavily hormone-receptive. Personally, I wouldn’t take the risk of rejecting an additional treatment. What you need to remember is that reported side effects are often anecdotal. I remember my mum taking tamoxifen. She said she just had to take this tablet for 5 years and that was that. Never mentioned a side effect. We use the forums here when we need support - I don’t even know if there’s a forum for celebration of no side effects. So you generally hear the worst. Do you read a paracetamol list of possible effects - do you think about those when you have a headache? Probably not as you think it doesn’t apply to you. So why would a list of potential tamoxifen side effects apply to you? Each is only a possibility. Sometimes a remote possibility - and if you do get intolerable side effects, you come off it.

Statistics are misleading. Tamoxifen apparently may make a tiny difference in your chance of recurrence. But that’s the average - you might be one of those for whom it takes you up to 100% chance of no recurrence. If you are one who does get a recurrence, you’ll be blaming yourself for not taking tamoxifen. And next time, your breast cancer may not be so ‘easy’ to treat.

I have no answers, only sympathy and a bit of wisdom that comes with the value of hindsight (better than admitting it’s age). I know what it’s like to have to let go of a dream and accept that life’s treated you cruelly. I know what it’s like to have to live with that in a world where the norms involve children, grandchildren… it never ends. So I do understand your wish to try once more. But now is not the time. You have to focus on your treatment and if your treatment involves hormone therapy which will impede IVF, there is your pretext for deciding what your priority is - you or a gamble.

I wish you all the best, whatever you decide

Jan x