DCIS and lymph glands

DCIS and lymph glands

DCIS and lymph glands Hi all

I wonder if anyone can enlighten me on something that’s been worrying me for a while now.

I am constantly checking the DCIS forum and seeing messages from people who have been diagnosed with DCIS and are having their lymph glands tested for spread. When I was diagnosed two years ago (have since had bilateral mastectomies though DCIS was only in right breast) I was told that with DCIS they do not need to take any lymph glands because the cancer is in situ and cannot have spread. I am confused as to why other hospitals therefore seem to be testing, and rather frightened to read that sometimes the glands tested are indeed coming back positive for spread. What if I’ve been walking around with cancer cells in my lymph glands for two years because they’ve never checked them? I had nipple symptoms for four years before the hospital would even accept that there was anything amiss with my breast and I have found it very hard to trust them since then. It is a very well respected hospital by the way – Charing Cross in London.

Anyone find any logic in this?

Thanks!

J

hello jellyfish

when i had my dx they told me that as my cancer was high grade although still DCIS they would do aux node clearance
just to make sure so i dont know if it depends on the grade of cancer or not , or if all hospitals have different ways they do things,sorry its not much help could you talk to your doctor about it?

Dawn xx

Hello I also was diagnosed with high grade DCIS and had mastectomy in July. Unfortunately when I got the results although no breast cancer could be found in my breast tissue somehow cancer had been found in one lymph node. Now chemo, etc. My surgeon had noticed that my lymph nodes looked swollen so had taken nine to be safe. Glad he was so observant - otherwise I would never have known and would have thought I was home and dry. I’m sure your surgeon would have noticed if anything looked suspicious so try not to worry.

love

Nikki

jellfish hi there
I was originally dx with dcis so had wle first of all
I went back for results and was told no clear margins and had also then spread into breast tissue,
I have just recent had another wle and had my nodes tested in case it has spread to any of them
I am waiting on results of this which will be on the 25th
hoping for good news
liz

pedroatkdy hope all goes well for you liz on the 25th

Dawnx

dippy Hi Dawn
thank for your support
am keeping fingers crossed for Mon
as it gets closer, getting a bit jittery
but thats life
will let you know
liz xx

dcis and lymph nodes hi nikki,
i am in the same boat as you here i’m afriad
i had dcis and have lymph node involvement, but they were unable to find the primary tumour in the breast. i have been assured that it is breast cancer but there is no sign of the tumour.

alison

DCIS and lymph glands Hi Jellyfish
I’m in the same quandary as you.
I was diagnosed with DCIS in R breast in March 2005 & had 2 lumpectomies before they decided it was spattered so I opted for mastectomy to be sure of getting it all. No lymph nodes were touched at that stage, & at first they said I’d need radiotherapy & then decided against it.
A year later when I went for my check up & mammagram on the L breast they discovered a Radial Scar. They advised that it may or may not be cancer but wouldn’t know till it was excised by lumpectomy. I read up on Radial Scars & decided the chances of it already being malignant or causing future cancer were too great & I didn’t want the same scenario as last year so opted for mastectomy straightaway. Happily, there was no cancer but I still worry that it may be lurking in my lymph nodes.
Like you, I had nipple feelings that no one would take seriously both times but you can’t MAKE them listen to you as they always seem to know best. I feel it’s just a waiting game now.
However, on a good note, I’m going into hospital for bilateral reconstruction by Diep Flap on 23rd so I’ll have nice pert boobs & flat tummy for Chrimbo…some good has to come out of all this!!!

Message for Alison - DCIS and Lymph Nodes Hi Alison

Interested to see that you’re following chemo with rads. My oncologist is unsure about whether I need them as no primary could be found and they don’t like to radiate your lymph nodes! It seems logical to me though that if no primary tumour could be found in the breast then there’s not much point in having rads as it’s unlikely to have spread to the chest wall, etc.

What do you think?

Nikki

hi nikki,
Mine had already managed to spread…that’s why i’m having the rads.
it was already in my lymph nodes and so i’ll be having the rads as a follow up to the surgery.

all the best
al