I had DCIS diagnosed in my left breast in July and had a mastectomy in August.
Around the time of the diagnosis I was reading the leaflets and one of them mentioned something about hormonal contraceptives maybe having an effect. I had put on my paperwork that I have the Mirena coil fitted, and this contains a small amount of hormones. Nothing was said by my surgeon, but when I asked my bcn she spoke to the surgeon and then advised me to get the coil removed if possible.
I haven’t yet had this done, and no one has checked whether it has been done. Around the time of surgery I felt I didn’t want any more poking and prodding. Plus restarting relations with my husband after a month of isolation would be hard enough after the surgery without having to introduce a totally new contraceptive method into our lives.
What have other people been advised? I am in my early fifties, not yet started the menopause, but my hormones levels were border line when I was tested at the end of last year.
Hello!
I had DCIS also on the left side and had a mastectomy in April.
they tested mine for estrogen receptors and my surgeon told me it was ER positive. I asked if being on the contraceptive pill had caused it and he said to stop taking it, but couldn’t say that it was the cause. I was on the pill constantly from 16/17 and was diagnosed and treated at 33. I wanted to stop the pill anyway and be more natural with an aim to starting a family at some point so it kind of gave me the push to do that, and It’s given me piece of mind to know I’m not putting excess hormones in my body.
Hope you’re recovering well from surgery
Becky
Hi my DCIS in 2018 was ER positive but only weakly (3/8) but still advised definately no hormonal contraceptive.
maybe phone your BCN to talk it through.
take care
Hi I’ve only just come across this site, I was diagnosed with DCIS just over 4 weeks ago and had a mastectomy on my right boob a week ago. I too have a Mirena.
my DCIS is oestrogen reactive, I’ve had conflicting info regarding whether the Mirena should be in or out! Initially I was told by the Breast nurse it should come out because it has oestrogen in it, which I then clarified it didn’t have oestrogen in it. We did have a bit of a disagreement regarding it, in the end she did say it should come out as it still had hormones. I’ve done a bit of research and asking various clinicians and I’ve not found any evidence to state it should be removed, other that if it is progesterone reactive.
At the moment I still have it, the thought of having a period as well as mastectomy was not something I wanted to deal with.
I have to go back and see my consultant once the results from mastectomy to see if there is any further treatment needed so I will re discuss it. If it does need to come out then so be it, but I’d prefer to recover from this first.
Hi,
Realise this post had been inactive for a while but it raised my interest after being diagnosed with DCIS (Oestrogen receptor positive) last week & in dealing with the shock I’m researching what I can do to best protect myself going forward (…trying to avoid Dr Google!)
I have spoken to my BCN and GP about whether it is advisable to have my Minera coil removed. Both were of the opinion that the risk is low - and because I’ve got fibroids I’d probably be causing more problems if it was taken out.
Guidance states that contraceptive coils are not recommended for ‘hormone driven cancers’ - so that makes the advice I’ve been given feel contradictory.
I’ve decided to think about it again after surgery & radiotherapy but wondered if anyone had other experiences or advice please?
Wishing you all the very best as we navigate our way through this s***!
xxx
Hello
i am 50 I was diagnosed in August this year with HER2 positive and I think DCIS
I sm still quite unclear of my full report but I intend to get all my info tomorrow from the oncology team as I start chemo on Friday
my reason for jumping on here is I wondered exactly the same thing
I had been taking HRT (oestrogen only as I have had a hysterectomy) for two months prior to my finding a lump in my left breast
immediately at diagnosis I was told to take off my patch.
I was then told that I will be tested for my hormone status and then possibly have endocrine treatment alsogside chemo
okay fine.
My questions are … why are there no tests to ascertain a persons hormonal status before embarking on HRT?
my dr said there wasn’t a blood test to establish whether I was menopausal or not… (prior , oh so prior to me asking for a specialist menopayse dr as I’d been struggling with menopause unwittingly singe my hysterectomy 15 years ago) … turns out, as we know that there IS a blood test … I WILL be having to have one to establish whether it’ll not I need endocrine !
I hope this all makes sense ? I’m currently on high pain meds and antibiotics for an infected, swollen and very sore boob … but that’s a whole new thread xx
massive love to all of you trying to navigate this whole crazy ride xx
I hope you don’t mind me answering on a older thread.
I too am er positive 8/8 they said after I asked for my pathology. I think it was a score of two elements added together.
I too have dcis intermediate I’ve had three excisions and now a week of radiotherapy.
I have the mirana coil and asked about this as I’m 53 and not sure whether I am going through menopause or not. I’ve got some symptoms that also mimic my fibromyalgia and also I have kidney function of 67 which is rubbish for my age but nobody seems concerned about despite me now having bladder issues.
Regardless I asked my gp about hormones and she said she didn’t know if I was going through menopause and maybe my hormones had dropped a bit. I’ve not had periods as I’ve always had the mirana. She said no to hrt.
She did say I can use the mirana to take me through meno and have my latest one replaced. However now when Im booked to go in and discuss with the hospital the breast nurse from my radiotherapy appt said having another is not advisable.
I havent been told at any point to take out the existing one so I’m very confused as to what is the right decision here.
There are mixed messages about hrt and breast cancer etc and she said as I’m a pre cancer she strongly advises not taking any chances.
The issue here is gynae will jist want to do theor bit, but gp does there’s and breast care do theirs… And nobody is talking to each other and coordinating care… So the patient is trying to discover what’s best.
I’ve not been offered tamoxifen just radiotherapy.
I now wait until February 2023 for a follow up but until then what on earth do I do?