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.
Thanks for your replies.
I had a look at my final letter from my surgeon. There is definitely no mention of hormone receptors or anything. Just a comment on the size and that is was “only focally high grade”
I think I will call the nurse and ask as I also need reassurance that my remaining boob fine and is only hurting because I am thinking about it
Hi again Scientistamafier.....just seen that you had posted again. I’m no DCIS expert but have had it twice.....so just to share what I know. Invasive breast cancers are always tested to see if they are hormone receptive.....but it’s a bit more hit and miss with DCIS ..... my first DCIS in 2012 was not tested.....but second one was (2018). If you look at the PDF DCIS information leaflet on this site it gives you some information around DCIS not always being tested for hormone receptors.
My first DCIS was low grade whereas second time round it was high grade so don’t know whether that’s got anything to do with why they tested or not??
Maybe have a look at your results letter..... See if there’s anything on there about hormone receptors.....it may just say ‘unknown’....that’s what my first letter said.
Definately speak to someone about your contraception though......Ask about the risks etc.....so you can make an informed choice about whether you continue or not.
Hi scientistamafier - I’m sorry I can’t answer your question about the cause of DCIS, but I just wanted to jump in and answer your query about what “ER positive” means. Doctors test any cancerous lumps to see if they are hormone sensitive, meaning whether the lump sort of feeds off oestrogen or progesterone. ER positive means it is oestrogen sensitive, and PR positive refers to progesterone. They also test for Herceptin. If you are negative for all three you will be described as “triple negative”. If you are ER/PR positive you are likely to be given Tamoxifen or another drug to combat the effects of the hormones. I hope that makes a bit of sense, I’m not medical - it makes sense to me, but it’s hard to try to explain it! You may find more about your diagnosis on a letter or perhaps you were given some form of pathology report on diagnosis or after surgery.
I’d definitely recommend trying to speak to your BCN again, or making an appointment to speak to your consultant. Best wishes, Evie xx
I don’t really know what you mean by ER positive.
I was never told anything using this sort of language, so I don’t know if I am positive or negative anything.
I haven’t really felt any connection with the nursing team. I felt overly bothered by them when I received my initial diagnosis and then ignored after my operation
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.
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 😊