I’m an oncology pharmacist specialised in breast cancer treatment management and I’m researching the gap in NHS support for women experiencing menopause symptoms caused by breast cancer treatment — things like hot flushes, brain fog, low mood, and sleep problems that come from chemotherapy, hormone therapy, or surgery.
I’ve watched many patients finish their cancer treatment and then spend months — sometimes over a year — trying to get proper support for menopause symptoms that were caused by that very treatment. Passed from oncology to their GP, from their GP back to a menopause clinic waiting list, and often told along the way that nothing can be done. It’s not good enough, and I’m trying to do something about it.
If you’ve experienced this and felt like your concerns were passed around without being properly addressed, I’d really value hearing from you.
I’ve put together a short anonymous survey (5 minutes):
Your responses are anonymous, and your experience will directly inform what better care looks like for women in this situation.
I’m off to do the survey but am just popping on here to say there was no offer of support for my side effects after 3 months (my initial prescription) no one asked how my symptoms were just assumed I’d take it for another 5 years.
When I asked about side effects I was told ”just menopausal symptoms”by my male surgeon. My experience was a very intense menopause (I’m post menopausal so have something to compare it to) with depression and severe joint pains which meant I couldn’t even open bottles or jars. Brain fog and memory issues so that I felt I was going mad or senile.
GP sorted vaginal dryness and itchy feet. When I mentioned horrendous hot flushes (over 20 a day lasting at least 5 mins) there was no suggestion anything could be done to help just sympathy.
I tolerated it for 3 months but cannot live like that for 5 years. Surgeon didn’t suggest anything could be done to help nor did my oncologist. I’m therefore going for quality of life and if that impacts the quantity of it so be it.
Vaginal dryness is a prescription for Yes vaginal moisturiser. I’ve been told to go back if that’s not enough and assured I can have an oestrogen preparation if required as so little would enter my bloodstream it would be equivalent to 1-2 HRT tablets a year.
Itchy feet (something I’ve had since perimenopause) is an incessant itch when my feet have got hot in shoes and socks and can last 48 hours,reactivating if my feet get warm in bed. The solution has been taking a daily over the counter antihistamine plus a 1% menthol aqueous cream I’m applying morning and night.
Ah thanks for that. I have been prescribed the oestrogen vaginal stuff but the leaflet clearly says “do not use if you have had breast cancer”. I am also avoiding anti-histamine as it seems to make restless leg much worse. I am taking a herbal tea as an antihistamine instead. It seems we have so many issues it is all a balancing act!!
I was told any antihistamine would help (I’m using Fexofenadine) so might be worth trying a couple? I was told there were other prescription ones I could have if it didn’t work. The menthol cream is bliss and I’m guessing you don’t need a prescription for it. It might help with restless legs too.
Research and advice says vaginal oestrogen is safe to use. I was scared, but miserable. My GP convinced me to use it. Have a read of this helpful thread
@yg909 thank you for doing this research to see how you can help. This is a much needed area of research.
We all get told we should be grateful to be alive and to get on with it after active treatment ends. As someone who got to the point of feeling suicidal though I am so so grateful for anyone willing to at least try and help us. Hopefully, if enough people do the research and try to help then others in the future won’t have to get to where I did. Again, I thank you and now I’m going to complete the survey so that I can have my share in helping others in the future.
I think the odd thing about breast cancer is that generally we go into it feeling fit and well. We don’t have symptoms we just have a lump and even then we might only have found it through screening. I’m not sure the medics get that.
It’s the treatment that makes us feel sick not the cancer.
Having come off Letrozole I am mentally back to myself, just waiting for my joints to catch up.
@bluetit11 Thank you for sharing your experience and completing the survey. What you have described is also unfortunately what I see often in practice. To some surgeons, taking out the cancer follows by discharging. “It’s just one tablet a day” - but it’s also the treatment comes with horrendous side effects. They are supposed to be closely monitored and actively communicated. There are non hormonal measures available to assist with the symptoms. Effectiveness might vary but there should be a platform/ pathway for women to seek information and get consultation quicker.
Oestrogen vaginal gel for a short term course is considered safe to use in many oncology conferences I have attended. Especially if the hormone treatment is tamoxifen. In theory, even if some vaginal oestrogen is absorbed systemically, tamoxifen would compete at the receptor level and reduce the effect.
Thank you for your support and kind words! What you’ve described is exactly why this research matters. It might start small but I hope things can be better for every survivors.
My journey has been the same as BlueTit1. Was totally amazed by my BS when he suddenly said I could take a break from Anastrazole after I’d spent 18 months of telling him about the side-effects!! Survey completed.
