Hi, It’s almost 9 months since my mastectomy & although generally i’m feeling better, I have days (like today!!) when I can’t stop thinking about my breast cancer & searching for answers. I had a large area of DCIS (7cms) with “multiple satellite invasive deposits” although most were tiny & Grade 2. The only reason I have been given for this is a genetic link although nothing has been found so far. Did anyone else have this sort of picture? I find it really frightening to think of multiple areas becoming invasive simultaneously, but I realise that I am lucky it was caught early with no spread to lymph nodes. Would love to hear from you. Rosie
Hi Rosie,
I too had lots of high grade DCIS and multi-focal IDC grade 2 in one breast, quite a shock really as I only had small boobies! Who’d have imagined all of that was going on in there?! I had an MRI which showed 8 areas.
They did find a micro amount in one sentinel node, but I, like you keep wondering what else has slipped through the net or is there a higher chance of it coming back if I had all of this going on, etc. You could drive yourself mad thinking and wondering these things. Try not to start delving too much into it if you can, harder to say than do I know!!
Paula x
Thanks Paula, I too have small boobs so perhaps that’s the link!! Rosie
Hi Rosie
im not sure if this will be of any help but i was speaking to one of the radiologists the other day about multifocal disease and she said that multi focal disease ie where the cancers all occur in one segment/quadrant of the breast and this is because that whole lobe is faulty so may develop cancers anywhere within it. but multicentric disease is where you have tumours in different areas of the breast and are usually clinically more different… the information generally relates to not having breast conserving surgery but having mastectomy as that reduces the risk of recurrence for these cancers.
now i dont know how often multifocal/multicentric breast cancers occur and how the rate differs for genetic patients but we do have quite a few think in our unit its around 12%-15% in genetic cancers… but we do get a number of them in the screening population too which are not genetic… i dont have figures for this but MF/MC cancers are not uncommon.
i would agree very much with paula that some times you can bombard yourself with information taht may not be reliable and worry you unnecessarily… the one thing that comes out overall is that mastectomy is better and thats what you had.
Lulu xx
Thanks Lulu, you are right that mastectomy was the best only option for me. The reason that i still find myself earching is all connected to the genetic stuff & the likelihood ( or not!) of getting another breast cancer. The BRCA gene was not found on testing my sister (who had breast cancer a few years ago) but we have been told that P53 is possible. It’s hard being told that we prob do have a gene but they may not find it…Rosie
Rosie do you have other cancers in the family?
based on two sisters having breast cancer this wouldnt significantly increase your risk of having a gene mutation based on that alone… feel free to PM me if you want.
the majority of high risk families who are tested for gene muations are not found to have one… only around 5-7% of all breast cancers are genetic, a further 15-20% are from high risk families with no mutation and the other 75% are from sporadic cancers or lower risk families.
the breast cancer risk in the p53 is associated with liFraumini(sp) syndrome.
Lx
Yes, I also had multifocal.
About 7 or 9 invasive lumps, from 1 to 2.5 cm) on a large DCIS, which was over 10 cm big. They were grade 1 or 2, and ER+.
Also in a very tiny breast!
Unfortunately, mine had spread to many (10) lymphnodes, which I do not think is very good at all. I am not so worried about multicentric, but I am worried about the lymphnodes. I am now 8 months after diagnosis, and been through operation (mx), kemo and radio and feel generally OK, but I am very, very worried about the future.
Hi MoreBaldthanBold, thanks for replying. My onc said that multifocal/multicentric is more unusual & when i asked for an explanation he said it could be a gene problem where several areas spark up simultaneously. It’s still not long since your diagnosis so i think it is hard not to feel really worried. My sister had breast cancer 3 years ago & says that living with it does get easier with time (just like grieving), but it can still hit her at times & she has an awful day. Rosie
Dear Lulu34
I hope you dont mind me asking but with regard to the genetic question, I have just had a lumpectomy 3cm IDC ultrasound showed no node involvement but had SNB at same time as lumpectomy, get results and hopefully clear margins this Wednesday. Hormone Receptor negative and HER2 negative.
Now my question is my maternal grandfather had breast cancer 13 years ago and he had mastectomy and node clearance and was put on tamoxifen. He managed 3 years but unfortunately he was then diagnosed with cancer in throat and other places and sadly he died. I have been told by my mother that both maternal grandfather’s mother died of breast cancer as did his sister, aged 24 so many many years ago. I have been told by my Consultant that she wants to look into the genetic side of things due to maternal grandfather and she thinks this is the link to me.
Have you heard of this before? Should the other female members of family be concerned. I do not have a daughter but both of my brothers do.
Would love to hear from you.
Tracy xxx