Hi
First of all hello and I hope everyone is as ok as can be.
Cam anyone please help.
I have been asked to take part in a trial to have the Mirena coil fitted to see if it can help with cancer of the endometrium. They have apparently done tests of women previously who have been on Tamoxifen for atleast twelve months and now want to do tests of women who have been on Tamoxifen from the start. I agreed after consulting my Onc and trial nurse but am now concerned after reading som posts on hear. I am ER+ and that is what is bothering me. I had a score of 5+3 =8 apparently a high score. I know the hormone released from the coil is defferent but still highly concernd. Can anyone please help me. I have posted a couple of ‘postst’ about this but now only have till tomorrow to think about it. Any help would be truly apprecieciated.
if it turns out wrong I promise not to come after you!!!
I had a mirena coil inserted approx 2 years. Diaganosed with lobular cancer this Feb. The mirena is progesterone and my oncologist said I could leave it in and he feels, as I do it is not connected with breast cancer. Im ER+ as well. Having Chemo at the moment. (2nd tomorrow) and then in July will be starting Tamoxifen. I had the coil fitted for contraceptive purposes only. I think youre brilliant even considering doing research for them but if you dont need the mirena coil and its not going to benefit you. You could also have it removed any time if you decided to go ahead with it and had second thoughts.
Ive been approached to do supremo trial which may benefit me in the end as it is to do with breast cancer.
It is personal choice.(Isnt everything we keep getting told) Im in two minds subjecting myself to radiation when Ive been advised that I dont need it. But it may help in the long run.
Not much help at all I know. You may feel that you would gain from this research and thats great. Do what you really really want to do.
Lyn x
I asked the BCN on Tuesday about the fact that I have a mirena coil fitted and am er+ as I had read about a few ladies who’s onc have wanted them removed, my GP, consultant and onc knew about mine but no1 had suggested whipping it out.
The BCN says that as far as she is aware there is no reason to have it removed - says the risks of the mirena are much less than the risks if I fell pregnant… now cancer I can deal with, pregnancy would be a different matter!
Thank you for you replies. I went yesterday with a few final questions in mind to ask, which I did to then be told I had been randomly allocated to not have the coil!! Still taking part in the study though. Had bloods taken to gain hormone levels. Then Womb measuresed and photographed followed by a biopsy, it was Very painful, they forgot to tell me that bit until just before! I had a flush just as they were finishing and started to feel really nauseus and dizzy. Doc told me to sit still for a while as I look ‘Grey’! Then a glass or two of water later I legged around to other side of LRI for my radiotherapy.
I feel that atleast another part of me is going to be kept an ‘eye’ on as such and will be interested to find out if the tamoxifen does make a difference with the lining of the womb. They said they don’t normally give out the results etc unless any tests come back with something bad, but were quite happy to when I said I would like the results.
I thank you again for replying and thanks Lucy for the number.
Has any one else had conflicting advice about keeping a Mirena coil while taking Tamoxifen? I have had the coil for years and was told by the surgeon that it would probably have to come out, but by the consultant oncologist that it is fine to leave it in. Is this what the trial (above) is trying to sort out?
So much conflicting adivce. I was told to take it out the day I was diagnosed (which I did 2 days later) but other ladies have not had the same advice - just don’t know what to think now.
A PLEA FROM THE UNCERTAIN - can the clinicians please get their act together and come up with a united front - one way or another.
Hi,
I personally believe the mirena is one of the factors why I have BC at all, so not a fan. My 3 friends with BC all had one put in a while before getting it too and one has secondaries now after being told it is ok to keep it in. This may or may not be a coincidence but I felt that it was one of the only things I could control. I was told all along that they are not a problem but still felt unsure. I quizzed my surgeon and onc and said ‘you say my BC is estrogen and progesterone receptive, you are giving me tamoxifen to block the estrogen so do you think it would be safe to keep a coil that produces progesterone?’ I was then told to go and get it removed and did so. They changed their response with one question from me. I think medical staff are quoting the manufacturers claims and don’t really know. There have been several threads on here with people for and against them, if you do a search. It is your decision but if you are also progesterone positive, you could ask them why this would not help the cancer cells grow. I am very anti them so this is not a balanced view from me.
Good luck
Lily x