Hi again all - this one is a bit tricky and though I’ve had responses from my GP and consultant, I’m still unsure.
In Nov 06 I had a Mirena inserted, partly for birth control and partly for the regulation of my out of control cycle. They can stay in for a period of 5 years max (which means it would be out before I’m done my 5 years of Tamoxifen).
The doctor’s have said I can leave it in for now, but I’m a bit baffled by that, as it produces a low level hormone that stays local to as opposed to going through the bloodstream. Given that I’m on the Tamoxifen, this somehow seems counterproductive, or am I crazy?
Is anyone else in a similar situation or have experience of using a Mirena during treatment?
Thanks in advance!
Nic
x
Hi Nic,
I have had a Mirena since last may and when I was seeing the Breast Care nurse she advised me to have it taken it out.
So I am back to really heavy periods now - how wonderful!! However I didnt really fancy keeping it in if there was any risk, and apparently
a doctor friend of mine told me you definetly wouldn’t put one in a lady with breast cancer!
Hope this helps
Val
x
I too am a bit confused over the tamoxifen and mirena issue - I had my mirena inserted in Aug 2007 and was dx with bc (er+) in Jan 2008 … ironincally I had asked for the pill but was told that as I was 40 and had been/was a trying to stop smoker the pill was ruled out cos of the risks of getting BC!
My consultant, GP, BCN and onc know about the mirena and none of them have mentioned having it removed. I raised the issue with the BCN at my rads unit as I had read comments from many women saying that they had been told to get theirs removed asap - she said that as far as she was concerned there was no need to remove it.
The main selling point aout the mirena for me was that for most women it stopped their periods … I also got excited when the onc said that for most women tamoxifen stoped their periods … I’ve had a period every month despite the tam/mirena combination … clearly I am not most women!
Wow, thank you both, it seems this is an interesting issue with no clear answer - though I totally agree, if you would not deliberately PUT one in a woman with BC, it would stand to reason that a woman with BC should have it out. Oi.
I’m hesitant, before the Mirena I had periods that lasted up to 14 days (yes, really) and now they are only about 6, which for me is a huge relief. However I’ll be interested to see if the Tamoxifen stops my periods as they are already pretty light. I’ve only been on the Tamoxifen for a little over two weeks now, so no idea how a cycle will be yet.
Thanks again Val and lilac, I’ll be seeing one of my doctor’s this week and I’ll pose the question to him as well and keep you posted.
Best,
Nic
x
Will be interesting to see how you get on Nic. I am seeing onc on Tuesday (post rads check-up) and I will be putting the question to her so I will report back on her answer.
How are you getting on with tamoxifen?
So far, it sucks. LOL
The hot flushes started almost immediately and I’m exhausted all the time, though as I mentioned in another thread, I’m trying not to blame it all on the T-fen, just yet 
I have found (mostly from trying things suggested here!) that taking them before bed lessons the flushes (either that or I’m good at sleeping through them!)
Congrats on finishing your rads! Mine start in two weeks!
I’ve been not too bad with the flushes - I did have some nasty ones in the 1st couple of months (started in Feb) but then I got my prescription from a different chemist and they use a different brand - amazing the difference, might be worth asking if you can try a different brand. Some others have posted that each brand comes with it’s own side effects so it might be a bit of a rock and hard place scenario.
I too get really tired some days but, like you I’m trying not to blame everything on the pills - I was working through rads and then went back full-time the day after I finished. I also had emotional upset a couple of weeks ago when my friend’s husband passed away so I think that is a factor.
Hope you
Great to read this. Diagnosed 2nd May, treated wide excision and node biopsy. Nodes clear and awaiting rads. Merina ciol in for 4yrs for heavy periods. Made my life bliss but onc wants it out. Information so confusing. Don’t want to go back to flooding again. Seeing gynea consultant this week. Any suggestions?
Hi Toffee - I can only say get as many medical opinions as you can and make the decision that feels best for you.
Will you then have the coil out in a year? Interesting that you’ve been told to have it out now.
Lilac - I agree with emotional stuff factoring in to tiredness, and I am sorry to hear about your friend’s husband, hope you and she are coping as best you can.
I’m more curious than ever now re: the Mirena - I’ll do more digging and questioning and let you know what I find out!
Best,
Nic
Hi Nic
Please feel free to use the ‘Ask the Nurse’ email service or the helpline for more information and advice about the mirena coil and breast cancer, they are accessed via the homepage.
Best wishes
Lucy
Hi Nic and Lilacblushes,
Dx Dec 06 SNB, WLE, rads and tamoxifen. I was on my second mirena first for 5 years and second 2 years before dx. My reason was very heavy periods which the mirena more or less stopped. My onc advised me to have it removed but GP couldn’t see why as progrsterone released locally. Onc said you never know with these things! I had removed 14 months ago and have ordinary coil now. I still have very heavy and very regular periods though and being on tamoxifen for 15 months hasn’t stopped them either!
Please keep us informed if you hear anything else.
Take care.
Shorty
Thanks Nic.Lilacblushes and Shorty,
I’ve looked at various web sites such as Cancer research Uk who says keep mirena in, and Cancerbacup who quote WHO which says no homonal coil should be used within 5yrs of diagnosis. I feel that all treatment is new and the long term effects are not really know yet. Meanwhile we are stuck in the middle. Seeing gynea con on Thursday. It will be interesting to see what he has to say. I’ll let you know.
Great to have people to chat to who know what I’m talking about. Thanks.
Toffee
I was told no more hormone-type contraception EVER. Barrier, sterilisation or abstinence are all fine, apparently. LOL.
Hi All
I was asked to go on a trial which would mean having the mirena coil fitted to see if it helped keep the lining of the womb thick and help prevent endometrium cancer. I was very dubious about it re the hormone release. I am er+ (very strongly) I liked the idea of being checked over more often and am pro trying to help forward treatments, but decided didn’t want the coil. I have agreed to trial but no coil (50% with it 50% without it) I questioned the gynocologist about it and she said the hormone stayed local in the womb but on telling her I had read it could get into the blood stream she said that yes it could but only a very small amount!! It is all so confusing. Just wanted to add this to this thread, whether it is any help I don’t know.
Take care all,
JulieL
xx
I was advised by both the breast doctor who diagnosed me and my BCN to have the Mirena removed as soon as possible. I’ve had WLE and SNB, now waiting for rads and I turned out to be er/pr ++, so glad I had it removed. I had the coil to treat heavy periods (not terribly successfully but they became manageable). My main concern was flooding again so GP prescribled tranexamic acid which is non-hormonal and does help to stem the flow. I’ve since started tamoxifen (5th day) so waiting to see if my periods change. Unfortunately there’s lots of conflicting information issued by clinicians but the cynic in me believes that gynae people recommend the Mirena and play down possible side effects because it’s cutting down on the number of hysterectomies carried out (Mirena or ablation offered instead), which in hospital waiting list and monetary terms makes it look good when the accountants look at gynae stats. The other side of the coin is that as side effects from Mirena begin to manifest themselves in the form of bc, patients end up being shuffled along to the breast surgeons/oncs instead. We’ve not gone away - just popped up in another hosp dept. The irony is that we’ll prob end up back in gynae anyway (tam side effects). Hey ho.
Hi all,
I saw my gynea con yesterday and he has let me keep my mirena in! Oh relief. He said that the benefits outweighed the risks in my case. I still have periods every month, I’m 52, although they are scanty due to the coil. My tumour was very small but oe+, not sure about pg. We discussed oopherectomy and ablation which we both felt were excessive in my case as the menopause will happen sooner rather than later. Hot flushes since last summer and I’ve not started tamoxofen yet,(Monday) so it’s about to occur. Start rads at end of month. Feel happy about this outcome and onc OK obout it too. This seems to be a very individual thing.
Thanks for all the discussion.
It’s scary that we get such conflicting advice. I am er+ and pr+ so was told by my onc to have my Mirena removed. I then started flooding (which included an emergency taxi back from a night out with it soaking though my clothes and I was straight into the shower for a hose-down). No periods since as I have been on chemo,.await their return (or not!) with interest and trepidation.
Louise
I was at onc check-up on Tuesday and registrar is happy for me to continue with mirena coil in … not happy about the fact that I am still getting periods but says too early to add in more medication. If I am still having periods in 2 months they will give me monthly injections to shut down my ovaries … I assume Zoladex but she didn’t say what. Now - if my ovaries get shut down will I still need the coil?
I am er+ 5% and pr negative. Now that I come to think of it I was (somewhere along the line) advised that the mirena coil contain pr so for an er+ tumour it was not an issue.
Hi
I was given a date when my surgeon said my cancer would have started from and this timed back to shortly after my mirena was put in. It was also when I started a stressful job and I wonder whether it was the 2 together that was the problem. The GP, onc, everyone said leave it in, but their only concern was a pregnant woman with BC and they saw this as the priority. I pinned my surgeon down and he said no there are no indications that they (mirenas) are a problem. So I said ’ so I have er+, pr+ tumour, you are going to give me tamoxifen to block the estrogen but it also grows on progesterone and I have a device making synthetic progesterone inside me every day, how is that ok?’ and he said get it out as soon as possible! You have to work out whether you are geting the Gov guideline or their real opinion. They say it only has a local effect but my hair growth pattern changed while on it and my skin too so I know it was not just local with me. I later found out my friend had one in too, got BC, was told to leave it in, and despite being grade zero has BC back, she has gone and had her mirena out now. GP tried to persuade her not to, saying been in years and so not a problem, she had a period start within days, after none for a very long time. So it is obviously not just local on everyone. You can look up some old threads on this, someone was thinking of taking the manufacturers on in a legal action, but that takes a very long time.
Personally I was so relieved when it was out because it is one less thing to worry about and one thing I can control and I cannot say that about much at present. By the way it comes out really easy, not like going in! Nothing has changed since mine came out, fingers crossed. Good luck with your personal decisions.
Lily x