I received my diagnosis at the first appointment with my surgeon on 3rd March. Unfortunately, that means I don’t have a copy of the written results so I don’t know the full details. According to pre-op biopsy, I have IDC - either stage or grade 1 (there was only one figure mentioned). I’ve since had a WLE and SNB on 26th March and will be returning on 14th March for the review and details of the next stage. Pre-op I was told that it should be radiotherapy and hormone supression drugs, dependent upon whether I am pre or post menopausal.
But I have a Mirena coil (extremely low dose progesterone), not for contraceptive reasons but to control bleeding that was so severe it could only be described as haemorrhaging. I’m on the second one and it has controlled both the bleeding and other pre-menopausal symptons for the last 7-8 years. Now I am looking down the barrel of a gun that says I’m almost certainly going to have to have it removed. It adds a level of horror for me …
Pre-coil, I was passing blood clots the size of small eggs (regularly throughout the day) and the vast array of drugs I took could not control it. It was only stopped by the use of the standard contraceptive pill … and this coil. I’m aware that I’m likely to have no choice over its removal, but know that it will render my ability to to handle treatment a massive blow. It leaves me unable to sleep (I have to change my protection hourly AT LEAST) and completely exhausted. I am aware that it is likely to be of limited concern to the BC team, but it will affect me and I need to try and get them to take my concerns seriously.
Does anyone have any experience with Mirena and BC treatment/care and can they offer any advice. My best friend is already researching the situation (googling within an inch of her life), but I was interested to see if anyone on here had personal experience/advice.
Many thanks
Debs x
Hi Debs,
I too have a mirena coil (for exactly the same reasons as you)I was told I could keep it ,it was discussed with the Multi-disipliary team at my hospital and they agreed I could keep it.The dose is very small and delivered very locally.
If I had been using it purely for contraception I may think differently but like you my life was dreadful before the mirena.
BC is bad enough without dealing with horrendous bleeding.
Good luck with the results on the 14th
Dot
x
Hi Debs,
I had to have my coil removed straight after diagnosis as my tumour was progesterone positive as well as oestrogen positive… Like you I had it inserted to help control bleeding, I started chemo 4 weeks after having it removed and had one period a day later and I have not had any since…(chemo’s doing). If you are to have hormone suppression drugs then that means your tumour must be positive for either or both like mine. I am currently on Tamoxifen and I still have had no periods. It is very common for periods to stop whilst on these drugs…which would really help you, but there is no guarantee…
Best wishes
Fiona xxxx
I had mirena too,to control bleeding and had 4 blissfull period free years, but once had diagnosis,8/8 for ER and PR was told to have it whipped out,easier said than done mind you,was hiding in there ! Anyhow, I didn’t have chemo ,and periods came back after a month and now are as regular as clockwork and nowhere as bad as they were before,am on tamoxifen too so maybe this helps. Good luck.
Sandra x
Hi Dot & Fiona,
Thanks so much to you both for your rapid responses - as with everyone on here, it feels so much better not to be alone with this issue.
Fiona, I must admit that I never considered tumours being positive for both - yikes! Without access to the written biopsy results, I really don’t know what the situation is with mine, although I’m assuming this question would be behind me if they already knew it was progesterone positive. My surgeon is a man who likes a plan (I’m with him on that) and so I was given a “sketch” of that plan at our first meeting. I’m not assuming that anything on the draft plan is inked in until the details of each step are confirmed along the way.
Dot, its good to know that circumstances MAY permit it being left in place. Mostly I just want to be heard and the situation taken seriously. If it is necessary to take it out, then out it will come, of course … but I do need for there to be a new plan to quickly and efficiently handle what might follow.
Thank you both again - and the very bestest of wishes to you both for your ongoing treatment.
Debs xx
Thank you too Sandra.
I must admit it feels crazy to hear myself saying that I hope the drugs will hasten the menopause and so the return of bleeding won’t be an issue, but I can’t deny that I’ve felt that. I’m a real natural remedy freak and generally avoid drugs as I seem to suffer from extreme reactions to them. But hey ho … life changes eh?
Debs x
[edited to add: my best wishes and lots of luck on your treatment to you too Sandra]
I went through exactly the same turmoil with regards to whether to have the coil or not. My reason was for dreadful, prolonged periods, much as you describe, Debs. My oncologist was absolutely adamant that the coil would not be harmful so I had one fitted at Christmas and it has been life changing. I was offered a procedure called endometrial ablation which just removes the womb lining and is supposed to be very good for heavy periods, but is likely to make you infertile, so only for women who no longer want babies. I was put off this because I couldnt face another general anaesthetic and hospital stay (although it is only day surgery), but have this as my back up should the coil not work etc. The amount of progesterone is very small, but nothing is without risk. My view is that quality of life is important as well as guarding against future cancer, so I had to do something about the horrendous periods.
iave had 3 mirenas altogether. One lasted 4 years, one six months, and the last one 4 months.
Once i was dx with bc- my onc wanted me to have it removed asap, which i did.
i didnt have it for contraception, either, but for my endometreosis/heavy periods.
eva
I had a Mirena coil as well for the same reasons as you. However I didn’t have it removed until I had finished chemo - my GP said I had enough to cope with without that, and the amount of hormone it was releasing was so minimal not to matter. Just shows how different Drs have different views.
Hope you get good news following your recent SNB.
Di x
Hi,
well I had BC the same time as 2 of my friends, the other thing we had in common was the mirena coil. My BC times exactly back to when the consultant said it would have started so I tend to think it was a trigger for me, but probably along with other things like a predisposition and maybe diet/environment, who knows? One thing is for sure,the plc manufacturing it wouldn’t want any bad publicity to ruin their profit margins. About a year ago some people on here were asking for people to join a class action against the company to sue. Not sure if it got anywhere as heard no more. Most BC is ER+ and PR+ from what I have read and it is more unusual to be + for just one of them. You know I really quizzed my consultant about mirenas as he said ‘standard advice is that they are not a problem.’ Tamoxifen only tackles the ER so what happens about the PR + part with a mirena steadily pumping that out every day feeding it, what stops the PR + part?. He just said ‘go and get it out as soon as possible.’ I am not sure anyone knows for sure as BC is more complicated than just one thing but I did feel a lot better for having something that I could control at a time of life when the world went wobbly for me. My friend had left hers in and got BC a second time so she had hers out too. This may all be circumstance so you just have to go with what feels right for you. I never had another period after the mirena was taken out and then chemo and I was 48.I never had problems like you describe so a much easier decision for me. Lots of luck to you but remember there isn’t anything much worse than getting this back.I am really sorry you have this crap disease like the rest of us and hope things go really well for you and everyone on here
Love
Lily x
i had mine inserted 9 months after treatment for hormone positive cancer due to excessive bleeding on tamoxifen… i did get another tumour since iv had it but it was hormone negative… still have my mirena as my prof and onc and gynaecologist are all happy because the amount of progesterone released is minimal…
and there has been a number of research studies done that have shown that is actually protects against endometrial problems eg polyps and endometrial thickening whilst taking tamoxifen.
there is no evidence that it causes BC, but some women who will get BC will have had the mirena beforehand, just like some may have been on the pill, the depo injection, used condoms or didnt use any contraceptives but still get BC.
Lulu xx
Lulu, Lily, Di, Eva & Cathy,
Thank you all so much for your responses and sharing with me your own personal experiences with BC and the Mirena. I have to say that you’ve made me think and - as important - given me time to have those thoughts in advance of my review and further treatment discussion.
I really am very grateful indeed to you all. Thanks also for welcoming me to the Club - albeit with sadness that we are all there - and I send my good wishes to you all.
Debs x
It can seem like a lot of ladies who had a Mirena have developed BC,when you read these threads.But it could be down to the fact that ladies who use a Mirena tend (from reading on here) to have heavy painful periods.They used (maybe still do? Lulu?)to say that the fewer periods a women has in her lifetime, the better chance she has of escaping BC.So maybe the Mirena can help if it reduces our periods???.
Just my logic!
Statistics are very dangerous things LOL!
Dot
xxx
Hi everyone,
I think the important thing is to believe in your treatment and speak up if it is not right for you. I read that getting BC is like getting 3 cherries on a fruit machine. It doesn’t matter if you just get one factor or even two but as soon as you have all 3 together something happens. It sort of made sense to me and as I was looking for something to blame and the mirena was the only thing I could do much about it made me feel really good to get rid of it. Might have been wasting my time, who knows but maybe the feel good factor will be good for me rather than worrying about it. Then whether worry is a factor or not is another thing we will all have opinions on. Oh I did one other change and that was to organic milk as my Godaughter who is a vet told me about all the hormones they pump into ordinary dairy cows but not into those for the organic market.
I find it fascinating but annoying at times that the oncs all sing from different songsheets about these things. I guess it means no-one knows for sure. But would I let one of my daughters have a mirena, no no no just in case. Totally respect everyone’s differing views here and just wish none of you needed them in the first place
Love
Lily x
Hello ladies
I too had a Mirena coil for heavy periods - I’d had one for just over 6 years before being diagnosed with strongly oestrogen positive breast cancer in January 2008. I had my coil removed on the advice of both surgeon and oncologist, who said that as it was a hormone, however small the dose and it was best to get rid of it. I had mine removed just after my 2nd EC chemo, had one slight bleed and then nothing since. I’m on Tamoxifen and have the associated aches and pains, especially in the ankles and knees. I’m 52 but feel 90 sometimes. Not sure if it’s the Tamoxifen or just the fact that your catapulted into the menopause rather than it happening gently. I would definitely have coil removed if you’re having chemo - you could always have one put back if your periods became a nuisance again.
Jules
I would definitely check if your cancer was PR+ - sometimes the consultants don’t mention it as it doesn’t seem to be deemed as important as the oestrogen side of things.
Personally I would get a gynaecology referral with the aim of getting something surgical done to stop the heavy bleeding as soon as I’d recovered from the chemo. If the cancer was PR+ then you might want to have the mirena removed sooner rather than later.
I had the mirena coil in the past for heavy bleeding, it worked for a while but then I needed hormone treatment on top to suppress the bleeding and eventually a hysterectomy. I wish I hadn’t pumped so many hormones into my body and gone for the hysterectomy earlier. It was difficult as I hadn’t had children and had just met my husband.
Having had the mirena coil for years and been on norethisterone (type of progesterone) for years for endometriosis, I know wonder if my 8/8 PR+ cancer was partly as a result of this… probably never know.
take care
Elinda x