Does anyone know what it is that determines whether any nodes are taken when you have a WLE for DCIS? Because I saw in a discussion on these forums that someone had DCIS and 4 nodes taken which were “infected” I just started to wonder when they decided to take them. Is it dependent on the location of the DCIS or the grade or the extent or just down to individual preference of the surgeon?
Hi Julia - I had high grade DCIS over a large area, including the nipple and was advised to have a mastectomy - I could have an immediate reconstruction if I first had six lymph nodes removed to check whether there was any spread…The reason given was that should there be a problem where radiotherapy might be necessary this regime can damage the implant. I don’t think they would have done sentinel node biopsy but for reconstruction.
I had mastectomy and recon and reduction on other side and am very pleased with the result. The downside was that the surgeon found a small aggressive tumour grade three in the removed breast and so I am now having chemo - just as an extra precaution.
My experience with breast care nurses is that they are brilliant - always ready to listen and give advice, help and encouragement - I live in Cornwall and go to the Mermaid Centre at Truro Hospital.
Good luck with it all x
Hi there, I had no nodes taken and this was at the Royla Marsden Hospital which specialises in Cancer treatment.
Hi, I had DCIS and no nodes taken. I was treated at the Churchill in Oxford which is a big teaching hospital. I was told that they dont take nodes for DCIS unless either widespread or high grade. I believe treatment is different in the US and that they take nodes and also give tamoxifen. I also think that DCIS is very varied also so different people are bound to get different treatment. To be honest, I am not sure, but ask my oncologist at the next appointment.
Hi Julie
This publication might help explain a bit more about DCIS
breastcancercare.org.uk/docs/ductal_carcinoma_in_situ_dcis__mar_08_0.pdf
If you would like to talk through you worries then at the end of the publication above you will find details for our helpline.
Hope this helps
Ann
Julie
So sorry you have had such a bad experience. I had mastectomy earlier this year and nodes removed. They were clear and my DCIS was medium grade. I have also been given tamoxifen which gives me horrible sweats.
My BCN at Bolton has been brilliant and even when she is not available all the others are equally helpful. Maybe you have just been unlucky.
Sounds like the concensus is that the DCIS must either cover a large area or be high grade.
some people who say they have had DCIS confuse it with IDC - i.e. they had invasive ductal carcinoma which you do have lymph nodes either removed, sampled or sentinel node biopsy with. And in my case I had both DCIS and IDC so I had nodes sampled.
There are so many variations of breast cancer that everyone has their own treatment plan and I researched everything. however, even Susan Love has its limitations, as it is based on whatever knowledge there was when she wrote it. I read the edition which was current at my time of diagnosis and she’s update it since then. I hope they do some more research on DCIS as would be good if they could know more precisely whether it is going to spread if untreated or not
Mole
Hi Julie,
Just wish to share some of my personal info/experience.I was first diagnosed as DCIS but having furhter tests, it has progressed to Invasive ductal carcinoma in Nov 2005,stage 3 grade2 i think.I had dye for my ultrasound to see how far it has spread.I even had needle biopsy and extraction biopsy as furhter tests.I had to have right mastectomy then and had a dye put in before operation to trace if any lymph nodes were affected.I remember having a discussion with the surgeon even before the operation that when they open me up, if i consent to full node clearance if the trace is more than 4nodes affected,which i had then.I had 6 cycles of chemo and 25 sessions radiotherapy between 13jan06 to 30sep06.
I had a lumpectomy and full node clearance on my left side this year and currently having chemo this year.
Veeluz
Mole - I can see how some people might get confused with the abbreviations. I know when I first started to look at this site I found it quite hard to read people’s entries as I had no idea what the terms meant.
Hi everyone
I’m also a bit puzzled about this. To be honest, the other thread frightened the life out of me… hearing that others with DCIS are not only having their lymph nodes tested, but some of them were actually testing positive. When I had my mastectomy for DCIS four years ago, I was told that they don’t take nodes because the chances of the cancer having spread to them is almost nil. So now I’m wondering… have they made some new discoveries in the last four years? Have they found out that DCIS does, after all, sometimes travel to the lymph nodes even though it has shown no signs of breaking through the ducts into the breast tissue? Crikey!
J
Hi J - I have already posted on this bit but just to reassure you - I had DCIS and was up for an immediate reconstruction. Surgeon has made it his policy he won’t do immed reco unless you have sentinel node biopsy as if there is a need for radiotherapy at a later date it could spoil the recon. If I wasn’t having immed recon he said it wouldn’t be necessary. I did have SNB and all was clear so got new boob. Hope this helps put your mind at rest Love C x
Hi C
Hope you’re getting on OK with the chemo.
I had immediate recon as well, and my surgeon didn’t take any nodes as “there is not going to be any cancer in your lymph nodes – you only have DCIS”. I must confess I don’t really understand why your surgeon thought it wouldn’t be necessary to test the nodes if you weren’t having immediate recon? Because it’s not just a question of spoiling the recon, you would still want to know the cancer had spread to the nodes, wouldn’t you, because it would obviously mean you would need more treatment?
My DCIS was scattered around the breast too, although they didn’t find that out until the mastectomy. But was only intermediate grade, which was already known from the biopsy. I can only assume the grading is what makes the difference as to whether they do or don’t. 'Tis all a bit of a mystery why different surgeons/hospitals do things in different ways, isn’t it?
J
x
hi girls.just wanted to add my experience on.had high grade DcIS andSNB before op to make sure that all was ok and no need for rads before immed recon. Ps said rads affect the implant.Didnt really ask any further questions about this.just glad they were checking me out.
Doreen