Hi. My dx came at the beginning of last month. Have had a wle for 2cm, grade 3 tumor and still waiting for results of op, dont know about hormone positive/negative. Had the coil fitted Dec 09, so its due to be removed at the end of the year but have an appt for this tomorrow as bc nurse recommended removal, however because of the heavy and unpredictable bleeds really not looking forward to coping without. My other problem is lost threads, so not sure what if anything will be achieved tomorrow. My thought is should i just leave it in place for now given its coming to the end of its life? Any suggestions or are there any other options? Best wishes to all. Hbunny
Hi. My dx came at the beginning of last month. Have had a wle for 2cm, grade 3 tumor and still waiting for results of op, dont know about hormone positive/negative. Had the coil fitted Dec 09, so its due to be removed at the end of the year and have an appt for this tomorrow, however because of the heavy and unpredictable bleeds really not looking forward to coping without. My other problem is lost threads, so not sure what if anything will be achieved tomorrow. My thought is should i just leave it in place for now given its coming to the end of its life? Any suggestions or are there any other options? Best wishes to all. Hbunny
Hi. My dx came at the beginning of last month. Have had a wle for 2cm, grade 3 tumor and still waiting for results of op, dont know about hormone positive/negative. Had the coil fitted dec 09, so its due to be removed at the end of the year and have an appt for this tomorrow, however because of the heavy and unpredictable bleeds really not looking forward to coping without. My other problem is lost threads, so not sure what if anything will be achieved tomorrow. My thought is should i just leave it in place for now given its coming to the end of its life? Any suggestions or are there any other options? Best wishes to all. Hbunny
I had the same dilemma, mixed feedback from the various professionals... but because I was 8/8 PR and ER+ decided to have it removed. Had it removed in October, periods returned November... pregnant end of January, miscarriage April.
If you do have it removed, please have an alternative at the ready.
I too had a mirena coil fitted prior to BC once I had been diagnosed my surgeon asked for the coil to be removed immediately and told me you should not have a mirena coil and be on tamoxifen. Thankfully for me the chemo stopped the periods and haven't had one since although still not classed as post menopausal yet.
One of the first questions I asked following diagnosis was whether I should have my Mirena removed. I was told by all drs asked that it was fine to leave in. I did some googling and came up with such conflicting advice.
In the end I just felt my body has and is continuing to have to cope with so much that I'd give it a break and get the coil removed. Considering I left my partner when I was diagnosed, and thanks to all the c*ap my body has gone through, my sex drive has vanished, contraception is not an issue. Also, since I'm on Tamoxifen I want to know what's happening with my cycle and whether I am pre, mid or post menopausal.
no real proof but when 2 of my friends and I got Bc at the same time and all had mirenas it was a bit too close for comfort so mine was straight out. Made me feel more in control if nothing else, who knows? You also have to consider if you are Er+ or PR+ as the mirena gently feeds you progesterone even though our hormone tablets are working on the oestrogen alone. There are other options. I believe they can do a minor op which takes away the lining of the womb and prob many other things too, why not explore them before you decide. An op is usually the worst option but maybe not in our case
When i was dx in Feb the registrar said take coil out immediately, as i had mine fitted under a general i couldnt just get it taken out. On my next visit to hospital i saw the consultant who said rubbish,it was fine to leave in, which i have done.Dont we have enough to put up with, without there being clear advise for us ladies, we have more than enough info to take in about our condition/s.I think i might asked my BCN again tomorrow at my pre op assessment,thanks ladies for your input.take care x x
Oh by the way i can only say it has worked for me i used to bleed for 9 days , have 5 to 7 clear then bleed again and the pain was dreadful.x x
I have had conflicting advice my breast surgeon said to take it out unless I needed it for contraception, my onc said to take it out and a member of another onc's team said it was safe to leave in because it only releases hormones into the local area! So I made the decision to think about it after my rads have finished - but I think it will be staying in for a bit longer.
hi thanks for all your comments im not on tamoxifen so dont know if that makes any difference. I had invasive ductal carcinoma grade 3 with lymphovascular invasion and her2 possitive. I had a mastectomy followed by chemo then a year of herceptin.
hi, had no problems after mirena taken out as tamoxifen did the same job (not the contreception bit though)
Its all very confusing. Years ago a gynaecologist told me Mirena coil was fine even though my mother had breast cancer and I was told not to take the pill. Now Mirena coil not supposed to be used because I had p+ bc but I am also early stage with tubular which is not meant to metastase. The logic I was given was the risk of contralateral bc as I obviously respond to p and tamoxifen is blocking e+. All in all I decided against taking any risk. Standard coil not causing me any probs but the flooding sounds horrible x
Its def a bit of a minefield-I had very mixed advice from GP's, BC nurse but finally spoke with a consultant gyne who said the evidence was leaning more towards not using the MIRENA if you have BC.
I too have had mine for many years since I started v. heavy periods. Im now 52, dx in Oct 2009 and I had a real quandry about should I have it removed or not. Ive had 1 heavy period since taken out in Feb so hopefully that will be that!!!
Im on Tamoxifen -since Dec 09.
Have you spoken with your onc or a consultant gyne ?
Best wishes with what you decide
I had a mirena fitted after diagnosis. Tamoxifen made my periods worse as it seems to have either caused or aggravated existing fibroids. The docs seemed happy with it as the progesterone in it affects the uterus and not beyond. Mind you if you read the leaflet that comes with it, the manufacturers say it is not suitable for someone if they've had breast cancer. I had low grade cancer that's not as likely to spread so maybe that was a factor as well in assessing risk.
The mirena did make my periods lighter although at aged 54 I went through the menopause at last so I haven't had any periods for the last year.
I could have the coil taken out but haven't done so yet
Sorry to hear you're having those gynae problems.
Sounds to me like you need a referral to a gynaecologist - you need an expert opinion on the problem and on ways to resolve this. I wouldn't hesitate in asking your GP for a referral or if you can afford it, go privately for a consultation (about £150). You'll be clearer where you stand. Clearly you can't carry on with flooding like that.
Hi Polly, I replaced my Mirena coil with an ordinary one. Had one period, started taking tamoxifen and waiting to see what next. Hopefully periods will stop with tamoxifen... x
I've had mirena coils since my youngest daughter ( now 13) was born. Had it taken out because if BC. ER and PR + . Only had one period since then as I've been on Fec and Tax. I don't know what will happen once chemo is finished and I start tamoxifen.
Hi, I am strongly e+ p+ Had successive Mirena coils for 12 years. Wonder if they played a part in getting bc. Told by two surgeons and onc to take it out straight away which I've done. Looks like no one rule and it is specific to your case. I loved it, no periods, but not worth chance to me xx
I had a mirena in when i was diagnosed, as my tumours were progesterone and oestrogen sensitive my onc advised i have it removed prior to chemo, so i did.
the most recent research on mirena coils is that they are safe to be inserted after you have been diagnosed with breast cancer but if you had it at the time of diagnosis then they should be removed.
i had one put after getting mental periods on tamoxifen and it was great... i only had it removed last year when i had a hysterectomy.... its found to help reduce the risk of tamoxifen induced side effects such as endometrial thickening.
I had a mirena coil fitted about 2 years before dx in 2007 which suited me well, but i was recommended it taken out by my surgeon, he felt that not enough is known about it and i should err on the side of caution, i then had an ordinary coil fitted. hope this helps a little.
Hi ladies, i was diagnosed with BC 2 years ago finished 12 months of herceptin christmas 2010.my periods returned to normal after my chemo. the last few months ive had problems with excessive bleeding have had blood tests for signs of menapause, thyroid came back negative so its not that causing the problems. my last period has lasted for 17 days now and blood tests have shown me to be anaemic. My GP has suggested having the mirena coil fitted but ive heard if you have had breast cancer then you should not have it fitted. my daughter is saying not to get it but i really do not know, i cannot cope with the flooding\pain im currently getting. any advice from you ladies would be really appreciated.
Ive also got a new partner we have been seing each other since january, GP asked various questions ie. any bleed after intercourse,unfortunatly i can not answer that as we still have not managed the physical part due to my bleeding.