Looking for a London oncologist who is realistic about Tamoxifen

Hi there.

I had breast cancer surgery and radiotherapy three years ago, and have been on Tamoxifen ever since, with all the usual side effects. Some more worrying ones have emerged recently - complex ovarian cysts, which I’m currently having investigated as suspicious.

My oncologist has been a bit rubbish from the start, for example not spotting interactions between medications I was taking, suggesting herbal remedies for hot flushes etc. I’ve been meaning to switch from her for ages and I’m now looking for a London-based clinical oncologist who works for the NHS and is sceptical about Tamoxifen. As most of you will know, it’s not the wonder-drug the press makes out it is and I want to have a grown-up conversation with someone who won’t just tell me to follow the NICE guidelines for the sake of it.

Any suggestions?
Many thanks in advance.

Hello Risal

Welcome to the forums,  you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

You may also like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes

June, moderator

Hi

 

If you are in London then it might be a good idea to check out oncologists at The Royal Marsden. I can’t remember who it is but I’ve read various posts by someone about The Royal Marsden and that person is very pleased with the treatment she has received there. It might be a good idea to start a thread called The Royal Marsden and no doubt she will see it. I can’t say that she will be able to recommend an oncologist but at least it is a starting point. Try putting it in the Going Through Treatment section. Most of the time I read the chemo and rads sections so the poster is on one of those sections. x

Hi ladies,

I am said Royal Marsden lady!! I’m at the Chelsea branch and can honestly say that hospital has changed my life. Its such a place of hope and your’re safe in the knowledge you will have all the latest treatments and research. l I’m now involved as spokesperson for the younger womans group. DM me Risal if you want more details Dee xxxx

If u click on help it comes up in the right hand corner. Took me a while to work it out Risal. Be only too happy to discuss oncs with u at RM Chelsea,

Hi Risal,

 

I know this thread is a few months old, but I wanted to find out how you have got on with Tamoxifen and ovarian cysts. I have been on Tamoxifen since December 2013 (dx May 2013) and had some period-like bleeding every other month from November 2014 to March 2015. Last month I received the results of an ultrasound which showed a large (8cm x 4cm - how did I not know?!) complex ovarian cyst on my left ovary. 2 weeks ago I had a repeat scan which showed the cyst on my left ovary is now smaller and simpler but there is now a small cyst on my right ovary too. i see the gynae consultant on Friday.

 

I am trying to see these cysts as a warning sign of how out of balance my body must be. I have read that the indicate high oestradiol (the bad oestrogen), which doesn’t sound like great news. So I have started taking DIM along with Tamoxifen to try to convert the oestradiol into less harmful forms of oestrogen. I’m wondering whether there is anything else I can do to reduce the cysts without drugs or surgery (or the obvious - stopping Tamoxifen). If you found an oncologist willing to talk through it all, have you found out anything about treating these cysts a bit more holistically? Or is Tamoxifen so powerful at disrupting hormone balance that there is nothing else to be done?

 

Thanks in advance.