Hi,
I am new to the Forum so sorry for the ramble! Although over the last four months I have spent many hours looking at different posts relevant to whatever stage i was at! So thank you to all who contribute to this .
I was diagnosed on Friday 13 March with grade 1 10mm early stage tumour. I consider myself fortunate to have had treatment during lock down . I had a WLE for the tumour and also an excision biopsy of 45mm of calcification and a SLNB. Margins and nodes clear. Had 5 sessions of radiotherapy and prior to that was started on Anastrozole and adcal as my tumour was ER positive.
I felt I had dealt fairly well with everything despite a few tearful days. My Husband was initially supportive but increasingly I feel he has had enough of my struggle with this horrible hormone treatment and is fed up with me going on about it!
I found after trying Anastrozole for 10 weeks , it was difficult to take with various side effects, joint aches, dry skin, weak nails, mood swings etc, but for me the worst was hair thinning. The thought of 5 years of hair coming out is quite depressing.
I spoke to one of the fantastic BC Nurses and she got me an appointment to see my Consultant. When I mentioned my concerns she assured me I wouldn’t go bald and a lot of woman worry, but the hair thinning isn’t noticeable to other people. However because I was having SE and also finding adcal very unpleasant to take She suggested I try Tamoxifen. AS I am post menopausal this is not the preferred drug but she said the recurrence rate difference was only 4%, so worth trying.
We discussed NHS Predict which I had done and she confirmed only made 1% difference if I took Hormone treatment or not but of course this is survival rate and not recurrence ! So I agreed as she felt as I had also had some calcification as well as the tumour in her experience some woman just have a “troublesome breast”.
So I have been taking Tamoxifen for nearly 3 weeks and feel more like my old self. Then yesterday when I washed my hair I cried at how much came out. I suppose I hoped this would be the answer and it actually seemed worse! (I had been to my hairdresser a few days before and had some colour on the roots and a trim and she though my hair was ok).
MY questions to anyone please with any experience of hair loss/thinning on Anastrozole compared to Tamoxifen, did you find one worse than the other?
Does the brand of Tamoxifen make a difference?
Is it too early to be sure it is the Tamoxifen (was on A for 2 1/2 months before switching) ?
Could this settle down or will it continue for 5 years?
Do any of the other AI have less reported hair thinning?
Sorry for all the questions but am really struggling at the moment but also feeling guilty to be moaning as I realise some ladies have had to have chemo and would have lost all their hair.
I have had great support from Friends and don’t want to keep moaning , so it would be lovely to hear form someone who understands.
Many thanks
Jodonny