node removal question

hello all
most people i speak to have had all their nodes out if any were affected
i had 7-10(depending on who you ask) and 1 was affected, so i had chemo and rads. the snb thing was never mentioned

i did ask at the time for removal and was told no need.
now im worrying i should have insisted

anyone else had nodes effected and NOT had clearence?
thankyou

Hi lincs lady,

I had one node affected out of the four they removed and I did not have to go back for a clearance. My consultant also said there was no need. I am currently having chemo (6 x FEC) and will have rads afterwards.

Like so many things it seems to vary with who you see and where you are treated. You just have to trust that they are doing the best for you. If in any doubt ask your BCN, peace of mind is priceless.

Sil

Hi Linc Lady,
I was asking this same question last October…I’d had mastectomy (3, grade 3 tumours) with 1/7 nodes pos & although the standard procedure was to have full clearance, I was very unsure as this had been my 2nd dx after 4 years & I’d already had all my nodes removed on the other side!
I was unable to actually find anyone who had declined surgery…altho I did speak to a peer worker (much older lady, even tho I was 57!) who regretted having had clearance & my gp said she thought I would be ok not to have further surgery…but my surgical team wouldn’t directly advise against further surgery, even tho my surgeon did say he thought it most likely the rest would be clear.
In the end I did have further clearance - all were clear. I tell myself that was a positive thing & accept I took everything on offer at the time & I think we have to believe in those treating us.
However if my team had not suggested full clearance I would have been happy!! It would have saved me a lot of heartache & that surgery!!
I’ve just finished chemo & have started on hormone tablets & so far so good!
Good luck to you!
Love jk x

I do think it depends on where you live and the protocols of that NHS trust.

My consultant advises full clearance as part of the treatment if any nodes are found to have traces of cancer cells. They say it is part of the treatment plan and this is then supported by chemo and rads and if appropriate hormone theropy.

They do admit they have a cautious approach but they say they feel this gives you a better chance of survival/re occurance these risks weight favourably with potential side effects of full node clearance.

My approach to all this (rightly or wrongly) is I want the best possible chance of survival and don’t want to take any risks - and don’t want to be in a postion if it does reoccur saying ‘if only I had…’ so I am taking everything they throw at me and would do it twice if needed.

My understanding is that there are layers of nodes. By having 7-10 removed you have had significantly more than just sampling. We all have different numbers of nodes - some women only have about 12 - some more than 30. You may well be one of those women with not many nodes to start with.
When I had my SNB it revealed isolated cancer cells. The multi disciplinary team was asked if I should have clearance or not - 6 said yes and 6 said no! There is great division among medical professionals about all of this. The current thinking is that chemo and rads will mop up cells and that axillary clearances should be avoided unless absolutely necessary because of the problems they cause.
I had the full clearance and it was hideous. And all the nodes were negative.

I would ask to see a copy of my medical records. It is NOT good enough to get different reports on how many nodes were removed. If you get any problems go to PALS and get them to find out. It is your body - you have a right to know. Demand to see your files and get an accurate answer.
Good luck.

thankyou for all your views