Can the BCN on the forum clarify the terminology please?
DCIS-Ductal carcinoma in situ-which to me says a cancer confined to the milk duct-is that right?
ER score Oestrogen score out of 8
PR score Progesterone score out of 8
HER positive or negative.
Perhaps if we say we are in the US, UK, or anywhere else it might help to understand members issues, also stating age makes a big difference to people's case/outlook/state of mind etc! Just a suggestion!
Your cancer was ER 8/8-so yes, top whack for Oestrogen. What was the Progesterone score? Mine was er8/8, pr7/8, so it was a no brainer to get the Mirena coil removed, as it releases progesterone into the bloodstream daily. I too was very happy for many years (30+) on various forms of hrt, (now 77) so my bones at the moment are very strong, but now on this Letrozole I am feeling 30 yrs older! Never suffered aches or pains in hips, knees etc, but lately I've not been able to walk upstairs properly! So I have a review to see if I can reduce the dose, as my cancer was a small DCIS and no nodes involved-caught so early it showed as a few white cacification grains on the mammo last August.
You can read and learn so much from people's posts on this forum, or ask the BCN nurses questions too-the more you know about YOUR case the better you can understand your body and what is happening. None of us wanted to be here, but here we are and have to make the best of it and get the support of those who have been there before!
Good luck with your appointment tomorrow, but if your PR score shows a cancer sensitivity maybe not have the coil replaced, you have to weigh up the risks. I was dreading the symptoms after gong cold turkey with the hrt in December, but apart from a few hot flushes, one night sweat, I've been fine.
I've left a message for my bcn today as I go tomorrow morning to gynae about havi g one mirena out and another put in on the grounds of using it as hrt.
I'm reluctant to have it out as I've bee in great on it and don't want to be plunged into meno though I'm seeing some possible meno symptoms. Equally I don't want something in that could cause me problems re cancer.
My er positive score was 8/8 the nurse said that's top whack.. I have literally no understanding.
I don't then understand why I wasn't told to get it out day one of diagnosis. Having said that I was also told I had to have a mastectomy one day and literally the next, that they had read the old pathology and I actually didn't need one as the margins were now clear.
I have zero confidence in any of it.
Hi, quick update following my original post on Aug 2021 after my DCIS diagnosis.
I had a lumpectomy, radiotherapy and am taking (awful….) Tamoxifen.
I’ve been trying to get advice about my Minera coil & whether it should be removed (my cancer was Oestrogen +ve)I’m approx 2 years into my 2nd coil
My GP couldn’t say one way or another, although she did say that NICE Guidelines don’t recommend “new coils’ after a BC diagnosis which is concerning.
My GP advised me to speak to the BC team and via the BC nurse, my oncologist advised against removal (partly because I’ve got fibroids & the coil is helping there and also she said there was minimal risk of it causing cancer)
So, for now, the coil is staying put!
Do I feel assured I’m doing the right thing - no!
Do I feel confused about conflicting advice - very much so!!
Sending love, strength and positivity to you all
When I say …never in the U.K…I mean I have never heard it referred to as pre cancer in the U.K…..And I’ve had many clinicians involved in my care as I’ve had DCIS twice followed by an invasive cancer
sorry you’re getting a lot of mixed messages….are you in the U.K.? In the US I have heard of DCIS being referred to as pre cancer but never in the U.K. ….it’s non invasive cancer but it’s still cancer….that hasn’t as yet developed the ability to spread outside the duct or lobe….it’s also possible to find a small area of invasive cancer alongside the DCIS after surgery which has gone undetected at scans. I wasn’t offered tamoxifen when I had DCIS first time as my ER and PR Allred scores were both 3…..however 2nd time I developed DCIS I was offered tamoxifen as the scores were 5….. it’s a whole new language and vocabulary isn’t it and I understand how difficult it is to navigate those early days…..speak to your team
Hi thank you for your reply.
The lady I spoke to was a breast care nurse as I understand it doing a follow up appt for radiotherapy.
She explained I was oestrogen positive cancer and that thry don't advise the mirena.
I'm confused as to why this wasn't mentioned day one upon diagnosis and it be removed?
I won't now have another put in but I'm so unclear on what's advised and best practice etc.
I don't want to suffer meno symptoms when currently I'm doing relatively OK with the mirena in. Equally I don't want to leave something on that could be detrimental to my health.
I've had zero discussion about what to do next and it's only because I've raised it at that telephone appt especially after watching Louise Newson the meno expert on TV and her peice on hrt and breast cancer, that I'm not wanting to ensure I'm making the right decisions.
I have developed bladder issues particularly in the last month where I feel like I need to loo all the time even after having just been and my kidney function is at 67. Gp stated its fine but she will check again in August ( she's already done two other monitoring blood tests so this wil be the third time. So all at 67) so I've been like it for eight months. I appreciate 67 is within limits but in actual fact that end of the scale is mild kidney issues and a function of a 70 year old! So no it's not normal
I'm suffering night sweats itching in my armpit, and joint pain, and brain fog etc and all these are either symptoms of meno, kidney issues or fibromyalgia all of which I either have or may have as they can't decide on the menopause bit other than possibly re my age.
I have to wait to see the consultant in February for my follow up but I'm seeing a gynae cobsuwthis week about the mirena and I'm not confident on them working together as neither know about the other and the gp is just waffling around in the middle.
The term pre cancer has been used several times at appts etc so I think it's a term used to denote early stage but I think I'm not on my own there.
I'm also so confused as to whether I still have it as radiotherapy said they treated 14mm so presumably that's what was left after three excisions as it was 30mm intermediate dcis. So is it still there with its moat around it and could cause issue if oestrogen is present?
Any help/advice/experiences gladly welcomed x
This is my point on messagi g to patients.
It is classed as a pre cancer which causes some confusion.
Even my husband said when we were given the news so don't worry it's not cancer...
I was also told that DCIS is a pre cancer. That terminology is definitely used. In fact I think it was my surgeon who called it that
The Mirena coil releases progesterone, so if your cancer was PR negative then I would leave it in place-mine wasn't so it had to go! I am also having to take Letrozole, which is an anti hormone tablet, and it is now causing aches and pains In my hips and knees I've not experienced before, plus frequent uti's. I didn't have any radioerapy as it was outside the 'window of opportunity' by the time I spoke to the oncologist.
You say- "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". A DCIS IS cancer, not pre-cancer, so I'm not sure why you were told that. I'd talk to the breast nurses where you had your treatment, they are best placed to help-or Macmillan nurses, not GP, or gynaecologist.
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?
Hi, I have recently been diagnosed with DCIS, had a lumpectomy and was told it was estrogen positive so they have prescribed some radiation and tamoxifen. Did they do either for your second diagnosis? Since it was high grade? I am 50 and not yet in menopause.
Hi Happyplace- i realise your post was several months ago, but what is the outcome? If the DCIS was oestrogen positive, but not progesterone postitive, then the coil can remain in place I would think-there are so many contradicting views! In my case I haemorraged while on holiday in my 40's and was put on HRT on my return by my GP and have been happy on variations of it for 30 years,(I'm now 76!) until my DCIS was found following an elective mammo in August. I have had to come off both the oestrogel and thave the Mirena coil removed because my DCIS (which hasn't spread to the lymph nodes thank goodness) was HER neg, but oestrogen and progesterone positive. Not happy about it though!
First I want to say how POSITIVE everyone on here approaches their diagnosis - after the first shock at least!
I was lulled into a false sense of security, when the 'few calcification cells' were found, 'it's common as you get older', it's nothing etc etc, but I would have preferred to be given the worst scenario, rather than underplaying it all and then being hit with a mallet! I fed both of my children,(admittedly many years ago!) my second until she was 7 months old, and was told that it's likely to give protection against cancer.
I hope I feel as strong as the rest of you, I get my meeting on Friday when they tell me the outcome of the SLNB, which folowed the lumpectomy three weeks before. it was a DCIS, but the SLNB is to make sure it hasn't spread.
I too read and was told that HRT does not increase the incidence of breast cancer, in fact in an article recently in the Daily Mail, a GP told his daughter it was protective! So who is right and who is wrong? The more I read, (not Google, but scientific research papers) the more confused Iv'e got!
Interesting that your doctor said there isn’t a blood test to establish if you are menopausal as I had exactly that done a couple of years ago. I was discussing with my doctor whether I could have a new coil fitted as it had been in a few years. She did a blood test to measure my hormone levels to see if I had started the menopause and so the coil could be removed. I don’t remember all the details of what was tested nor what the levels should be, but essentially at the time I hadn’t started the menopause but probably would in a year or so. (Given I was 50 at the time it didn’t need a crystal ball to say that)
Anyway, still haven’t got round to going to the doctors to discuss having the coil removed.
Hope all goes well with your treatment
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
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
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***!
Thanks for your comments. I hope your recovery is going well so far?
I have been so busy at work that I haven’t called the nurse yet. It is a bit annoying that these things are so unclear. Maybe in non-COVID times there would have been more follow up visits with chance to ask these questions.
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.
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 😊
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.