Hi
Just found this thread, am extremely interested as i was fitted with mirena coil a year before i was diagnosed with pr+ BC, and have wondere3d about the link myself, I would like to know more details about any action being taken
I do not have, and have never had a Mirena coil - but isn’t it disturbing how much conflicting advice seems to be given out by professionals in whom we are supposed to have faith? It can’t be good to feel one goes to any medical appointment armed with information gleaned from the internet and ready to question the information we are given, but it seems to be that a great proportion of us do just that. Surely it undermines confidence - both on the part of the patient and the professional - but maybe inconsistent advice frightens those that subsequently share their experiences far more than their advisors realise? A little knowledge is a dangerous thing?
In Feb I emailed this suggestion to NICE: That NICE provides guidance for the use of the levonorgestrel-releasing intrauterine system (LNG-IUS) device Mirena, having due regard to the uncertainties relating to breast cancer risk and use in women who have had breast cancer.
Anyone can suggest a topic to NICE. They evaluate suggestions to see whether they are appropriate for them to provide guidance. So I’ll see what happens.
I had my mirena fitted 0ct 2004, mainly to help with my heavy periods.
As I have high B/P I was a bit wary but I was told it was fine as the hormone is released into the womb and not the blood stream.
So why were my breasts in agony 2 months after having it fitted? I remember lying with babywipes on them to cool them down.If it is just released into the womb, surely my breasts shouldn’t have been so uncomfortable?
I was dx oct 2006, and it took months of questioning the whole bc team to find out if I should have it removed.They told me it was completely safe to leave in.
Because my periods made my life a misery, I’ve left it in. It’s due to be removed oct, 2009.Hopefully by then I will have gone through the change. As it stopped my periods I have no idea of my menopausal status. And God Bless the NHS, they haven’t bothered to do a blood test to check, just nodded their heads and put me on tam.
So Daphne, please keep us informed
Dont you think this whole subject a bit scary, I too was fitted for mine due to heavy periods, then had to have it removed, my chemo was hurrendous as it coincided with my periods which have come back worse than ever, and have have stayed with me throughout the chemo. I have been told my only options now are a full hysterectomy at 35. There definitely needs more research
Anna
I’m still having periods with the mirena but had it fitted about six months after diagnosis. The first one had to be removed because the strings disappeared. I had the second one fitted under general. the strings are still there. Mirena produces local progesterone in the uterus. Progesterone is used as a treatment for some kinds of breast cancer which are oestrogen and progesterone receptive so i don’t think it can be very bad, particularly as the progesterone in the mirena affects such a small area.
the downsides for me have been irregular bleeding, almost constant for six months after the second mirena was fitted; and the fact that the first one disappeared and could only be removed via surgery - and because it was in the wrong place made no difference to my very heavy bleeding,.
Mole
I’ve had the mirena in for around 8 years and am feeling scared. If you look up the artificial progesterone used in the mirena coil it’s Levonorgestrel, a progestin, which is the same hormone that was used in the depo provera. This is linked to breast cancer from what I read. I now find that my doctor should have made the connection about 3 years ago to my onset of migraines, nausea, raised blood pressure and told me to take this thing out. I have repeatedly asked for it’s removal because I’m sure it’s made me really ill to the point where I’ve been unable to work and have developed all the symptoms of hypothyroidism but with normal range blood results. Clearly something has been wrong for a long time. I won’t bore you with all the details but the list is huge and I am really ill but being told to just lose the weight that I’ve found impossible to shift.
I will be insisting on having my breasts properly checked since all the symptoms that I was assured were nothing to do with this coil actually have now turned out to be to linked to it.
I just want to say how incredibly brave the women are who’ve come here and spoken in such a matter of fact way about their cancer. Thank you for making others aware of these risks. I don’t think it’s going too far to say that you may be saving lives.
I have finally found a female doctor who has okayed the removal of this coil but I think it’s robbed me of 8 years of health. Thank goodness I may be able to stop any further damage.
i was told not to leave mine in for more than 6 years at the most as the side effects for leaving it longer were unknown, seems to me that there needs to be more research and info available to doctors on this contraption!!! i will say whilst i had mine fitted i felt brilliant!!!
I had the mirena fitted in Summer 2005 and was dx last Oct 2007 with grade 3, DCIS, triple neg though, so not sure if there’s a connection in my case. Still have it fitted, may have removed after chemo and rads to see what’s happening with my fertility.
Good luck SusieK
I have had two mirenas in total have had them for about 8 years. Was dx last march with secondaries straight off. I have asked the onc and my GP and both have said that there is no need to have it removed. It is something that has been on my mind.
I know lots of people who have had this coil (including my sister) and do not have cancer so what are you meant to believe?
Caroline
I had Mirena for heavy periods and had it removed as a precaution after breast cancer diagnosis. I’ve had four years on another medication that seemed to sort out the heavy periods about 9 months after I started taking it - Tamoxifen.
Coincidence - who knows?
I developed a breast cyst within 3 months of having Mirena fitted and that’s what got me referred to a breast clinic and led to cancer being found in the other breast. After mastectomy I developed more cysts in the remaining breast. It all quietened down after I had Mirena removed.
If I’d kept it, I would have felt like I was participating in an unregulated trial.
I have just had a reccurence of breast cancer after 18 years, I had a mirena fitted in 2003, due to the heavy flooding that tamoxifen gave me, I went along with it because I thought they knew best but now I am beggining to wonder if for them it was just an easy option.
Been diagnosed today with bc - Grade I invasive duct carcinoma. Awaiting lumpectomy/radiotherapy. Have had Mirena since 2005 for heavy periods. Doctor and Breast Care Nurse have both said have it removed - got appt this Thurs with GP to get the thing out. Frightening.
Hi All
I have not been on forum for a little while. I am at present having 6 weeks radiotherapy, have already had chemo and mastecomy. I was dx with Invasive Ductal grade 2. A few people have mentioned about trials being needed. I have recently been asked to take part in on which involves having the Mirena coil fitted with release of Levonorgestrel. I have been told it is a trial for women taking tamoxifen to monitor the changes of the lining of the womb. I was also told that a previous trial for women who had been on tamoxifen for at least 12 months showed that having the mirena reduced the effects tamoxifen had on the lining of the womb, reducing the risk of endometrium cancer. I did ask my onc who cleared it to be ok, I also asked my trial nurse (on the Neo-tango trial) she looked into it also and ok’d it, so I have agreed to have this fitted. Supposed to have this done end of April but now I have quite a few doubts and not sure what to do.
It is randomly selected 50/50 who has the coil and who doesn’t but have been given the option that I can chose Not to have it but to still take part (keep a diary, be scanned, blood samples etc over 2 years) so wander if this should be the route to take.
Has anyone else been asked to take part in a similar trial? This is at Leicester Royal Infirmary where having radio at present. (all other treatment has been done in Peterborough)
Any advice info would be appreciated.
Wishes to you all.
Love
JulieL
xx
To work out how much of a coincidence it is that the Marina has been linked to BC within the ladies on this forum, it might be worth noting a few details which could explain something. It might be that all of you are part of the same demographic, which could suggest that it is not a general link, but a link between u all. Is there a common ethnicity, blood group, medical history, ago, weight? A little knowledge is very dangerous as already said, and this forum is a read which would persuade any woman to avoid the Marina, but is it enough evidence to be sure?
T
I think the reason a lot of women who have mirenas are diagnosed with breast cancer is that breast cancer becomes more common in the peri-menopausal years when women become prone to heavy periods.
That’s my theory. Mind you, 80% of breast cancer is diagnosed after the menopause when contraception and mirenas become superfluous
Mole
I had a marina coil for about a year had it taken out 2 years ago to be stirilised, now just about to start chemo having had all my nodes removed and a lumpectomy…always worried about the release of hormones
I am going to ask the hospital when I go for my appointment at breast clinic on Thursday, whether I should have my coil removed. All these stories are quite worrying, especially now I have a lump.
I’ve just read all these posts. One of the only things I remember from my appointment when I was diagnosed is asking whether I should stop taking the pill - I was told to stop immediately and was recommended by my BCN to use the Mirena coil instead. I didn’t bother going for the coil and I have since had my chemo and mastectomy. The subject of contraception came up again with my oncologist recently. He too suggested the Mirena coil. I don’t know anything about it (these 2 conversations were the first I’d heard of it) but there seems to be a lot of conflicting advice and opinions.
I had the Mirena coil inserted in Feb 2004 and in April / May 2004 I had breast cancer. When asked by the medical team if there was anything different done recently, I mentioned having had cysts / polips lasered and a Mirena put in - but they did not consider this of any importance ! The cancer was an aggressive grade 3.
Once I had the lumpectomy, I was given chemo, radiotherapy followed by Tamoxifan. Recently, in March/April 2008 I was moved over to Anastrozole (Arimidex), on 9 Oct 2008, I found another lump. This turned out to also be malignant and I’m just now recovering from a mastectomy.
This has yet to be confirmed but it looks like, although this lump is also grade 3 and aggressive, it has a different make-up, which as I understand it, is receptive to a different hormone.
Having read the posts here I am now really very concerned that, despite being told to the contrary, there might be a causal link between the Mirena coil and the two cancers I have had. I now plan to have the Mirena removed as soon as possible.