Hi,after having a bi lateral subcutaneous mastectomy,and a full hysterectomy at 29, i am now suffering from severe osteoporosis and constant migraines.My treatments for the breast cancer included chemo,(cmf) arimadex,tamoxifen and zoladex.I have now been advised to take hrt, dont know what to do,im ill all the time…but worried about the risks of a reoccurance. I also carry the brca2 gene and the cancer was oestrogen positive. Has anyone any advise, it would great2 hear…
Hi suebear.
I can’t give any advice but I’m bumping this for you as the forums are very busy this evening.
I am so sorry to hear that you are having such a rotten time of it.
I’m BRCA1 positive and had bilateral mx a year ago, no chemo or rads, Tamoxifen for 6 months until a recurrence last June, further surgery and rads and since the summer have been on Zoladex and Letrozole ( Femara). Seeing the gynae onc next week to talk about ovarian removal.
You don’t say how long you have been on the hormonal treatment or what measures if any you take to deal with your horrible side effects. If it is fairly recent (though it does not seem recent from what you say) then I was told things should settle down after 3 months or so. I have been on this latest combination since September. I take daily calcium and glucosamine (Osteocare Joint) to deal with joint and bone problems, although I realise I have not yet been taking the drugs that long for any real impact on bone density to show yet. I have aching hands and wrists every morning but it is manageable. I also take a supplement called Confiance which does not seem to have hormone- mimicking ingredients. I was also referred to the London Homeopathic Hospital and take various remedies prescribed there for joint problems, menopause symptoms and general well being. I don’t have a strong view for or against homeopathy but I wanted to try anything i could.
Earlier on with this medication I was having horrible migraines, something which I have not had for a few years. I have stopped any alcohol, by which I mean even a sip of wine, and that helps. Also lots of water and early nights…
I think some women find that having their ovaries removed makes the side effects easier to cope with than being on Zoladex, so that may be worth exploring if that did not happen as part of the hysterectomy.
One more possible idea is some gentle stretching exercises each day to deal with the tension and anxiety you may be feeling, which in turn can lead to more headaches.
I hope that helps, it is all very personal.
C2010
Hi claire, thankyou for your reply.I have been off treatment for 8 years now,and am still having seriuos health problems due to treatment.I take calfovit calcium d3 and ,was on fossamax for 6yrs for the osteoporosis, but had to discontiue as there was problems of irregular fractures with long term use.This is why docs are advising hrt,but im still worried . Also i have been taking amitryptaline for migraine prevention, nothing seems to work.I have only had this problem since treatment,and also have not had any alcohol since dx.Im sure these are menopausal problems ,that hrt would help, but i always thought this was a huge no no, with breast cancer risks.
Having your ovaries out so young they may still be keen to protect your cardiac, bone and brain health by giving hrt as you have had BIL mx and tah&bso your risk of a new BC is low but it would really be up to your onc based on the BC you already had… If small, hormone positive, with no nodes then your recurrence risk is less than a large tumour, hormone neg with pos nodes so he may think it warrants hrt…
There are many different HRTs the combined one is associated with higher recurrence but as you had your uterus removed you could have the oestrogen inky one which is associated with a very low rate of recurrence… Additionally using patches has a lower risk than tablets… Most of the research is done on women who were menopausal at diagnosis so not very much info for people in our situation who were well under 50 at diagnosis, but who have had their ovaries removed… I only had a hyst 15 months ago at 42 after finding out I was a brca2 carrier.
You do have to weigh up quality of life… Is it worthwhile going on being miserable… With a small risk you may get a recurrence anyway or do you increase that risk but life might be a bit easier… Or life may nt be any better on hrt… Ask your onc if he has any evidence to help you make up your mind… And what you sometimes find useful to ask him is… If it was his daughter in this situation what would he be advising?
I had just had my gp write to my consultant this Summer about going on hrt however I got a recurrence before I got the chance so no hrt for me for a while anyway as on Chemo… But may revisit it Later… Haven’t had BIL mix so would prob only do it after the breast tissue was removed… But not worried about oesteoporosis as have good bones… More concerened about the cardiac risk in a family where everybody has heart disease.
Sorry bit waffly… There is a very good consultant at northwickpark park hosp who runs a clinic for menopause after cancer and see lots of women in your situation and she takes outside referrals so perhaps you could ask for a second opinion from her… We aren’t allowed to give names on here but If you pm me I can give you the name.
Take care now
Lulu x