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 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 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 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
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?
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.
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.
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.
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 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?
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 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'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'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,.
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
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
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 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?
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 got "lumpy" breasts within a few months of using mirena, was fobbed off by GP and breast consultant that this was normal hormonal changes, then DX with BC a year later, grade 3 triple + with one node affected (2 mammograms missed it and I basically diagnosed myself , as I think most will agree, we know our own bodies best). I am very concerned that when I raised my concerns at first appointment only months into using it that medics dismissed my concerns of a connection to mirena without much consideration. A lesson learned I think and I now tell everyone I know to steer clear. My onc also agreed should be removed, which I did immediately after dx. I think our GPs and others are being very niave about this and I would welcome further research and participate in any combined action.
I'm not aware of any trials that have found that Mirena prevents uterine cancer - a question for gynaecologists. The Eclipse Trial is currently looking at the clinical and cost effectiveness of Mirena ffor heavy menstrual bleeding compared with other treatments.
Recruitment started in 2004 with 5 year follow up. No mention of whether women who have had breast cancer are eligible for the trial or whether assessing breast cancer incidence in the study groups is going to be part of follow up.
I have recently had WLE and SNB results next week. Also at same time due to continual post Men. bleeding (I am 48) had biopsy of endometrium and this was found to be 'active' initial recommendation was for Mirena coil to prevent uterine cancer in future but this was without the knowledge of the breast cancer so have been referred back to gynecology, appoinment to follow the results of BC biopsies!!! So I too am worried about the info. in this thread. Anyone else out there who has had/has similar?
Forgot to say - just picking up on Angee's point. I think there is quite a lot of uncertainty about Mirena, but I'm not aware that there's any proof that it is implicated in new or recurring breast cancer so I hope you don't feel too bad about what you've read.
Mirena seems to be trotted out regularly to deal with heavy bleeding and I wonder whether surgical alternatives - like endometrial ablation (for those that have had/don't want children) might actually be safer in relation to breast cancer risk - and less hassle.
Surgery to deal with gynae problems seems only to be used as a last resort now (perhaps due to cost), but I think modern techniques may make it much less unpleasant and debilitating than it used to be. GPs don't seem to want to discuss surgical options, they just seem to want to write out prescriptions for hormones or other medication.
Had Mairena coil fitted June 2003 and removed May 2007 because of bad Migrains, dx with bc November 2007, not sure if there is a link but there are lots of info out there on the side affects, would never have another one fitted, interested in what others have to say.
I originally had breast cancer twenty years ago and had no recurrence until December 2007 - which was almost four years after my mirena coil was fitted. At the time the coil was fitted I did ask whether it could cause any problems given my history of breast cancer and was assured that it did not. So far nobody has suggested that I should have it removed but I will ceratinly ask at my next appointment.
I had primary ER+ & HER2+ bc in 2004 and had my marina coil in July 2005 as tamoxifen gave me extremely heavy periods. My oncologist was happy for me to have it. I was dx with secondary bc in bones in Oct 07 and they seem happy for the coil to stay in for the meantime.
To be honest, I did not know there was any link to bc or increased risk of recurrance for those who had bc and feel a bit sick reading this so will keep coming back to read the other postings.
I don't know what the link is (if any) but my onc told me to have mine removed. I am dreading it and have got in a supply of "night time" towels!
My sister in law had mirena coil fitted and found quite a big lump which thankfully turned out to be benign - she insisted on getting the coil removed and the lump has gone away gradually - may not be linked but as we all know these hormones can send our body a bit crazy. At her breast screening they did say that the lump may have been brought on by hormones but she felt that it was a risk she wasn't preparedto take by keeping it in.
I queried any possible connection between my Mirena coil and my DCIS (lumpectomy May 07 and masectomy Jan 08) and was told absolutely no link by GP.I had first Mirena for 4 years and second for 2, before having it removed because of my concerns in July 07. I had it removed so as to minimize all risk factors that I can think of, despite medical assurances of some protective advantages. I would be very interested to hear how widespread a possible connection is.
If you go onto the website of the Royal College of Obstetricians and Gynaecologists and search on Mirena, you can see what they say.
It is thought to be protective against endometrial problems caused by Tamoxifen, but they mention Canadian guidelines that talk about the unknown risk on recurrence in people who've had breast cancer, and the limited data available to suggest that it does not increase breast cancer risk in the general population.
The risk is "unknown" because no clinical trials have been done to specifically look at whether Mirena increases risk of recurrence in women who've had breast cancer.
Bottom line is that it's Cat 3 UK Medical Eligibility for use in women who've had breast cancer - where theorectical or proven risks usually outweigh the advantages of using the method.
I keep an open mind as to whether it is implicated in causing breast cancer. I was diagnosed with BC within four months of having one (which I then had removed), but mine was not an aggressive cancer so it may have existed for a long time before I used Mirena.
I had a mirena fitted in 1998 and then another one in 2003. I was diagnosed in Dec 2006. Onc advised me to have it removed as although he said it released progesterone locally 'you never know what's happening with drugs and the body'. I had mine removed March 2007 and have gone onto the ordinary non-hormonal coil. At the time I did think it was a great contraceptive to use though!
I had a mirena fitted 3 years before being diagnosed which I had removed 2Â½ years after diagnosis. I too would be interested in other peoples experiences.
I was stage 3 of 5, grade 3 of 3 and HER2 positive, so I'm on herceiptin at present. Fortunately, they got the cancer out during surgery (together with some lymph nodes) so all the chemo, radiotherapy etc since has been preventative.
It just seems very suggestive that BC seems almost epidemic at present and the fact that I have a friend in exactly the same position, I wondered whether there might be a link to the Mirena.
I had a mirena fitted post diagnosis and am reasonaby happy with it - no more heavy periods and apparently it has a protective effect against uterine cancer which tamoxifen can cause
I'm sorry you've been diagnosed as having stage 3 and aggressive bc. Do you mean stage 3 or grade 3?
As a family planning nurse I can say I've not seen any proven link between mirena coils and bc. The way I understand it, the mirena gives out such small doses of progesterone, it tends to only act locally within the uterus and is not linked to bc.
What is your hormone status and your her2 status? That also has a bearing on how aggressive a bc is?
Hope all goes well with treatment.
I have sent an email enquiry to a firm of solicitors who specialise in medical litigation. Therefore, if anybody responds to my original thread, please confirm if you would be interested in joining a class action if one can be brought against Schering.
I had a Mirena coil fitted for 7 years before getting BC (I was onto my second). I was assured by my GP that the hormone dosage was too low & localised to have any effect. I still had it removed immediately on dx. I will be interested to see what anyone else says.
I was fitted with a Marina coil in Jan 2005 and diagnosed with Stage 3 DCIS BC in December 2005. The surgon commented that it was a very aggressive cancer and might only have started growing within the previous 6 months (ie since the marina was implanted). In addition, a friend who also had a Marina in 2005 underwent surgery this week for LCIS.
I am interested in anybody else who has been diagnosed with BC since having a Marina or anybody who knows of any actions being taken against Schering Health Care Ltd who manufacture it.