Hello all,
I’ve started a separate thread here as I’m not sure this fits with the other MRI one.
I have high-grade DCIS (ER+, not checked for PR/HER2)which was removed, but have to have mx as it was a large lesion. Only a small part was calcified, this was found on the mammogram but not visible on ultrasound. I’m concerned about recurrence especially owing to my family hx (no gene as far as I know). Also I’ve seen research that says the most likely DCIS not to show up on mammogram is high grade, especially HER2+ which WILL become a high-grade invasive cancer if left untreated. The percentages are 48% high grade DCIS not found on mammogram, 98% high grade DCIS found on MRI (this was the same group of people assessed by both).
My consultant has agreed to do a bilateral mx, but says he can’t get MRI scans for DCIS as the hospital commissioners will not fund it. He also says that MRI does cause futher problems as it has a high rate of false positives which then have to be investigated. My consultant is lovely, and has always been honest and straightforward, and listened to my concerns.
I’m strongly leaning towards the bilateral mx, but if MRI was available it might be the one thing that would change my mind. I noticed that other people have paid for their own, and would love to hear of anyone else’s experiences with MRI/recurrence in the other breast etc.
Thanks everyone, Lynne
Hmm… that’s a tricky one. You could perhaps ask him to apply for “special circumstances”, as the results of an MRI could well save them the cost of a mastectomy and recon, which is not inconsiderable.
Good luck, and I hope others who have direct experience come along to help you soon.
Have you thought about asking for a second opinion and you can get a written opinion from the Royal Marsden if its to far away for you to visit. I did this in fact i had four opinions before i even found an oncologist that i liked.
I’m not in the same situation as you but I have been offered an MRI by my breast surgeon. I had a WLE in Dec and a re-excision in Jan and each time low grade DCIS/LCIS was found in the margins so I have been advised to have a mastectomy. As my Mother had bilateral breast cancer (second breast 3yrs after first)I am now concerned as to whether I have DCIS/LCIS in the other breast. He agreed it was reasonable to have an MRI and did warn me it could throw up false positives. If there is anything going onin the other breast then hope I will be offered a bilateral mx.
Hi I had grade3 DCIS plus grade2 invasive mine showed up on mammogram.I have yearly mammograms now and had no idea that grade3 DCIS may not show up on mammogram,can I just ask how you came by this information 
best wishes Melxx
Thanks everyone, it is a bit of a complicated one! Stressymessy I found that research on US site, breastcancer.org/symptoms/testing/new_research/20070604.jsp
It was based on research by Dr. C Kuhl, Professor of radiology, University of Bonn. Also found some other bits along the same lines, but I think that is the simplest to understand.
Just a couple of points: 1. Mammograms are known to be not as useful in younger women than post 50s (this is one of the reasons why screening younger breasts is not always effective due to the nature of younger breast tissue)*. So, if the American study was referring to all ages, which I suspect it is, then that is quite true. But, if you have a dx due to a routine +50 Mammogram in this country, the study won’t apply.
2. A Mammogram alone doesn’t diagnose DCIS, it only shows calcification - and not all calcification is DCIS - which is why a biopsy is needed.
So, I would say that it depends on your age.
I was 50 and had a mx for high grade DCIS @ Royal Marsden (5cm) and they were very clear that it was necessary and also very clear that if it wasn’t on the Mammogram (ie: other breast) it wasn’t there.
Your circumstances may be different, and peace of mind is very important, so push for what you need to reassure you that you’re making the right decision
Annie
*source: younger sister’s specialist who asked for mammogram when I was diagnosed
Hi Annie.Yes I was told the same that mammograms may not show up cancer on younger breasts when I was in my 20’s.I had asked for one because my mum had died of BC but was advised against it.I was 45 at diagnosis so maybe my breasts were not so dense.Mine was 17mm invasive and about 20mm DCIS I had central mastectomy so still have a bit of a boob lol.
Melxx
I was diagnosed 4 years ago with grade 3 ER/PR+ HER2+++ invasive cancer at the age of 55, identified during a routine mammogram. However, the pathology of the lump removed showed that high grade DCIS was also present which had not shown on the mammogram. I had a mammogram 18 months before which was clear, but I suspect that the DCIS was present then, and had it been found and removed, I would probably not have gone on to have the invasive cancer. I now have annual MRI scans due to the DCIS being mammographically occult and I am now 59.
Anne
Oh dear that’s a bit scary then.Maybe I will have to enquire about this.I remember(I think as it was over 3 years ago) being told that I had invasive and some DCIS when I went for mammogram results so I suppose it must of shown up on mammogram.I have my mammogram in April so will ask.
Melxx
Annie, Anne and Mel, thanks for the info - I didn’t realise there’s that much of a difference with age (I’m 49 but have dense breast tissue according to the radiographer). I think the main problem is the variety, my consultant did say there is no single disease, each one is different as it starts and reacts according to each individual’s makeup. I think that if your DCIS showed up on mammogram then all of it should in future as it’s your special type. I do feel concerned because of my mum’s history - she was over 50 at first dx and hers didn’t show up on the mammogram so she wasn’t dx till a year later when it was invasive. She now has stage 3 in the other breast, hence my specific worries. A small part of my DCIS was calcified, but not in a way that suggested it was DCIS and I kept being told it was 95% certain there was nothing to worry about. The extent of it (60mm including cancerization of the lobules and comedo necrosis) was only found by pathology after WLE. Sorry if I’ve worried anyone. I haven’t seen anything re age in any of the research I mentioned by the way, so I don’t know what age any of the people in the study were. Anyway, I think it’s the bilateral mx for me…
Best wishes, Lynne
Anne, I also asked whether I’d have to have MRI in my follow-up scans as my Grade 3 Er/Pr+ and HER2+ tumour, and the surrounding DCIS and LCIS, didn’t show up on the mammograms I’d had. But I was told by my surgeon that because the chemo will probably shove me into menopause my breast density will change dramatically so a mammogram should be fine for me. I remain unconvinced…
I can only describe my own experience, which is that I went through quite an early menopause in my late 40s and at 55 the DCIS still didn’t show up. Maybe I am very unusual, but I am very glad that my consultant is still willing to arrange MRIs for me.
All the best
Anne
Anne was right to use the word ‘occult’. There is no final answer with this disease is there? I have the same dx as you Anne, and I DID have a mx mutilation for DCIS - but it came back in the reconstruction - so, it is still not guaranteed that the bl**dy thing is removed.
All we can do is to push for what we think we need in order to get peace of mind.
Good luck all
Annie
I’ve found quite a complicated research piece on MRI effectiveness
medscape.com/viewarticle/732133_8
This also states that MRI is less effective in screening when breast tissue is dense. Again, it’s not clear cut at all.
Hi there, I had my MRI scan today, it was ok, not scary at all. The consultant radiologist specifically asked to talk to me afterwards as she felt that the breast surgeon had lead me to believe it would show up LCIS/DCIS. She was quite clear in her view that in most cases DCIS or LCIS doesn’t not show up on MRI. It may throw up other stuff, cysts etc that leads to further tests, or an unnown invasive cancer… I sort of wish I hadn’t had it done now.
Clematis, MRI can rule things OUT as well as rule them in, so it is good to have an idea of what they’re NOT dealing with.
I realise that but was offered the mri because I was worried about lcis/DCIS in the other breast and I now know it CAN’T rule that out. My mother had bilateral bc and I know how distressing it was to go back to the beginning after three years. If anything is found I want a bilateral Mx to avoid that. Finding out it won’t show what I need to know has been a blow. My mammogram and u/s of that breast were normal. I also wanted to let others know that the consultant was certain that mri wasn’t effective in picking up DCIS.
tgis is really interesting as i know in respect oif the nice guidance and scottish governement guidance on MRI screening in people with family history women who are BRCA1 and 50% risk of BRCA1 should get MRI but only women with BRCA2 and not 50% risk of BRCA2 get it because of the increased incidence of DCIS only cases in the BRCA2 population.
at the time i asked why this was and i know the guidance that is in place today will be based on research which is much older and that until 2007 the evidence all supported the original idea that DCIS wasnt picked up so well on MRI due to the techniques used and tho cohorts studied.
but now all the evidence supports MRI as the most effective screening tool for DCIS as well as invasive cancer…
this is why i love this forum… you always find out something new!!!
as for women with DCIS i doubt that MRI will be introduced on the chance of picking up DCIS… only a small percentage of women are found to have DCIS alone… around 20% and the cost of implementing MRI screening would outweigh the benefits at this moment in time… there may be some plans to introduce MRI for women with dense breast but again this is liely to be further in the future once they have done more trials on the effectiveness of this.
will be discussing this with my colleagues on my return to work after AL.
cheers peeps.
clematis not sure if your mother is still with us but if she is then she could take part in the BRCA 3 research trial which is looking at people with a family history… they check for the main gene changes in brca 1 or 2 so its quite useful for many women who dont fit the criteria for full genetic analysis through a diagnostic lab… obv if there was a gene change this may make your decision easier… as those with a gene change have around a 40% chance of getting a contralateral BC compared with only 5% of those in the general population.
if there is no other family history except for mum then this may be more reassuring that perhaps she was just one of the 5%.
Lulu x
Thanks Lulu, that is interesting! I am even more confused now!
My Mum isn’t with still with us, although she didn’t die of breast cancer. Her sister was diagnosed with BC at 38 and died age 40. She kept a lot to herself but my sister and I think she tested negative for BRCA1 and 2.
Clematis x