What exactly is widespread DCIS?
What exactly is widespread DCIS? I have read that a number of you ladies had to have a mastectomy for widespread DCIS. I had a quarantectomy for 2.5 cms of DCIS from which there escaped a 1 cm grade 2 tumour.
So when does DCIS become widespread?
Mcgle
all over the breast? I don’t understand the more precise sounding designations which include measurements that many talk about as I just got told mine was widespread - which I took to mean all over the breast. On the ultrasound it looked like little tiny white dots everywhere with a sort of concentrated larger white area which was what they took out on the WLE - didn’t get clear margins so went back for the rest (mast) later. I had positive nodes so had to have chemo too. My confusion came from the first diagnoses - that I could be cured by mastectomy as it was just DCIS - which turned out to be a mistake as the nodes were positive, but where did the tumour cells in the nodes come from if there was nothing but DCIS in the breast?
I admire how knowledgable people on this site are - you obviously wade through a lot of medical reports and quiz your doctors more thoroughly than I do. Sometimes though, I think I probably have had some of this stuff explained to me but I don’t seem to retain the information very well or else the shutters go down in my brain and I’m just refusing the information at some level I’m not entirely conscious of.
For Bernie Thanks for replying again, Bernie.
It’s all so confusing, isn’t it? By definition, DCIS should not have escaped the duct, but I suspect, in your case, that there may have been an area of microinvasion, which unfortunately made its way to your lymph nodes, thereby necessitating chemotherapy. I think it all depends on the aggressiveness of the DCIS.
A friend of mine had uterine cancer three years ago, and recently told me that she was the world’s expert on it at the time. Now, she is as hazy as the rest of us, as she has managed to move on. I am hoping to emulate her once I have had the answers to all my numerous questions!
When I go for consultations, I have a printed out questionnaire for all in the room. In that way, if I miss anything, whoever is with me will not! This is my way of coping, but I realise it does not suit everyone.
Oh, well…
Mcgle
Dear Mcgle You are kind to share with me when I neglected to first empathise with you. None of this is easy. I’m sorry you are going through this hell. I do mean to nail this thing on some rational level but it keeps slipping outside my range - by its nature I think it’s hard to grasp intellectually, not least because it often mystifies the medical profession and is intrinsically beyond complete knowledge, at least for the time being. I have a lot of questions too, on occasion my surgeon just said he didn’t know the answers which was honest and I liked him for admitting that.
Of course that’s the most terrifying thing to accept, as it requires acknowledgement of the most fundamental existential reality of life. As the good book says, acknowledging another harsh reality, we are not to know how and when this is going to happen. Those who are ill and those who are well exist in a different relationship to these realities, but they can only be suspended, never eliminated.
— —I had mastectomy in nov 05 after being diagnosed with DCIS because it was in all my milkducts and an aggressive cancer then 15 sessions of radiotherapy which i have just finished thank heavens
mamogram —Looking on the mamogram they showed me lots if white specks with more in some areas than others but the dcis was more or less scattered throughout my breast.
From the path report it seemed that some areas were more aggressive (they said it was comedo form) than others. I was told I had no choice but to have a mastectomy because it was so wides spread.
There is some thing about it all that I cannot get my head around though, no matter how hard I try.
I don’t know why it did not show up in the mamogram 8 months earlier. Can dcis appear that quick?
Suex
widespread dcis Hi mcgle
I think I must have been very lucky because my surgeon sat with me and patiently explained that dcis is pre-cancer cells in the milk ducts. As the breast is full of milk ducts the cells can be present in just a small area, or a large area, hence widespread. He explained that when the cells grow outside the ducts, or become aggressive a lump forms which it seems is what hapenend in your case. He also explained that they start to invade other areas, hence the testing of lymph nodes. Unfortunately because milk ducts lead into the nipple, that is why the nipple has to go, personally one of the things I found hardest to deal with!!
With sidespread dcis a mastectomy is usually the only answer, unfortunately.
Hope this helps.
Best wishes.
Frenchy
calcifications which are the tiny white specks you saw on the mammogram are not cancer - they are calcium deposits. These calcium deposits may be as a result of ageing or old injuries. When seen scattered throughout the breast they are unlikely to be cancer, apparently 80% of microcalcifications are not cancer. However I think it is the pattern of them that is important when a few are clustered closely together following the paths of the ducts, this may indicate that there is DCIS - which is an abnormal proliferation of cells which display abnormal features - similar to those of invasive breast cancer - but DCIS is confined within the duct sustem.
High grade DCIS usually displays linear branching or coarse granular calcification: low grade DCIS often shows fine granular calcification. The pattern of these calcifications will then determine the medics to do a biopsy of FNA, the lab results of that will then determine whether it is DCIS. The shape (distortion) of those cells will also indicate the aggressiveness as will cell necrosis. DCIS has what is believed to be a slow natural history, and it is usually commonly confined to a single segment of the breast which is why it is usually amenable to WLE and rads and not mastectomy.
This is what the info I have says anyway.
I hope this helps - although it is easy to further confuse.
Celeste
Wow! Thanks Celeste, that’s more info than I’ve ever managed to wring from my doctors and helps me a long way towards understanding what’s been going on in my breast.
Informative replies Thanks ladies for responding.
Celeste – your knowledge about DCIS is amazing. I believe you had a WLE. Do you mind my asking how much DCIS was in your breast? I had such an extensive op because my tumour (and/or DCIS) expressed calcifications over a wide area (6 cm x 4 cm), so all this abnormal tissue had to come out. Luckily for me, I had such enormous breasts that they were able to do me a really good cosmetic result – don’t even have a scar where the six lymph nodes were removed. But I did have two incredible surgeons operating on me at the same time. I believe this is pretty unusual.
Mcgle
Does size matter? …and of course ladies we all know that it does. But as to the size of the DCIS I confess I have forgotton - feeble isn’t ! At the time I should have written it down but the best laid plans etc. etc.
This was my second WLE (the first having failed to get clear margins).I do know that it was a lot - my surgeon who is also a onco plastic surgeon - had to do a re-arrangement of tissue. Briefly she sliced down the sides of the remaining tissue so that it supported itself. - very architectural and a really good cosmetic result. If I was smaller breasted this may not have been possible, but not entirely clear about that.
Oh and all NHS (I think my last remaining principle).
Best wishes
Celeste x
— -I too had a DCIS of 2.5cms in my right breast in 2003 at the age of 62. It doesn’t matter how old you are, the feelings are just as bad. It was compounded by the fact that the consultant told me about this the day we were signing the contract to move for the 1st time in 20 odd years, so I was moving doctors and hospital at the same time. I had the quarantectomy and then 3 weeks later had a further op: as they had found microcalcifications around the removed tissue. Luckily that one shows to be clear. I had chemo and radiotherapy. But I had a 6 month checkup 2 days ago and I have a lump in the other breast. Good thing is that it is painful, so I am hoping it is just a cyst.
Re: kids … yes…they can be a pain in the a**** even mine who are around the 40 mark. Once a Mum …always a Mum, and they always believe you can fix it and do things they can’t. As we all know, once you have heard the C word it really does change you in all ways.
PS I LOVED the No Hair bit…so liberating…and it came back curly, the up side of all the downsides !!