I find it amazing how we all get different advice. My bc is definitely e+ but not sure about pr. Jury still out on herc+. Surgery only 4 wks ago. I think that most of the treatment we are discussing is quite new and therefore the long term effects are not really known. I’ve had a mirena in 4yrs and can’t place a real link with my bc but it has made my life much easier. I’m pleased that this has provoked a discussion and how we can compare symptons. Thanks.
It is interesting that mine went in in August and I found my lump in January. However, on the other hand I do have relatives on both sides who had BC … both long before there was any hormone or HER2 testing and also before there was any hormone birth control… so that begs the question was mine caused by hormones (I was on the pill on and off between the ages of 17 and 35ish both for birth control and regularising periods) or was it hereditary?
So many questions and not enough knowledge to give guaranteed answers. I am still considering asking about them removing my ovaries … which of course would solve the birth control issue and also stop the periods once and for all, but would then raise the bone density issues … it’s never simple is it!
My gynea con told me yesterday that removing ovaries wouldn’t stop my periods as hormones affect the uterus lining seperate from the ovaries. I started e HRT in August 2007, didn’t need pr because of coil. Diagnosed bc 5 weeks ago. On pill in late teens and early 20’s only. No pattern for me other than HRT. No family history with bc. May be stimulated by HRT. Who knows? No one has really discussed this with me but then I’m new to this so far.
I speed walk and try and keep my bone desity up that way but once I start rads I expect I won’t be doing much of that. Not doing it now as arm too sore to swing but walking fast most days at present as off work. Don’t know if it’s helpful but someone suggested that it will build up my stamina for rads.
Hey presto I’ve just found out that my tumour is e+ and pr+++ so I bet I get called back to have the mirena out!
I’m soooo confused!
Hi ladies,
Just to let you know, I have spoken to my new onc (where I’m being sent for rads as opposed to where I had my surgery & where my main consultant is) she sees no need for me to have the mirena out and in fact feels there are some benefits to keeping it in at my age (36). My radiologist said something similar and I got some great advice from the website nurses here at BCC. One of the things mentioned that the coil can actually have a positive effect on the lining of the womb whilst on T-fen.
Toffee, just for reference I am ER/PR positive, and have not been told to have the coil out by any of my team (including GP).
Having finally had my first period on T-fen (just made it through my first box of 30 WHEE!!!) I noticed it was much lighter than even what I experience with the Mirena, it lasted 4 days then came back 2 days after that for a day - I gather this pattern may change yet again…!
Anything else I find out, I’ll post here again… this is certainly an interesting issue! Thank you all for your comments and experiences, I hope it’s been helpful to have this discussion, even if we are all still confused, we’re confused together!!!
Best,
Nicole
x
Thanks Nicole,
Spoke to my gynea con today abd he still thinks it’s ok to keep mirena in. He says that, like you, it will give some protection to my endometrium while taking tamx. My own body will sort cycle (52 and still menstrating reg). So I will go with this until such time it need to be removed.
Thaks to everyone for advice.
Maybe there are others who can shed some light on this.
Jo
I asked my GP tonight - he is brilliant and I trust him 100% - he said that there is no reason whatsoever to have mirena out as it is very low dose of pr and of no danger to an er+ patient. He said he would be more concerned about the risk of pregnancy than the mirena … further assured me that the mirena is in now way causing the itch in the nether regions.
I have had completely contradictory advice about the mirena (I’ve got one). Surgeon said it would probably have to come out (I’m ER+ and PR+) but onc said there was no need to remove it as the progesterone was very localised. Breast cancer nurse says it’s personal choice, but I don’t feel very qualified to make that choice! Mirena website actually lists BC as a contraindication… How do we know who to believe???
Jenny