Thanks for all the info. It's all these different practices that get me so confused. They don't do SNB here either. But they are pretty aware of lymphodema thank goodness...well, they seem to be at the moment. Trouble is they don't always know how many they get in surgery do they? They were going to take 4 from me, but took 7. I just get a bit paranoid that there is still stuff lurking, but will trust the rads to kill!!
Hi Ostrich, I didn't have SNB the node showed up enlarged when I had mammograme and scan, and so a biopsy was taken along with biopsy of the lump.I had 16 removed and only the 1 was involved.
best wishes Mell x
Its such a shame that we don't have the knowledge about BC before dx rather than after.
Given the fact that I was a rabbit in headlights I agreed to my LD recon, didn't even consider or know that my lymph nodes would be involved, certainly hadn't heard of SNB etc.
HAD I known more I now know I would have made different decisions and/or pushed for different procedures.
Hang on..........isn't that what BCNs are supposed to be for??????
Quite a lot of surgeons are not trained to do SNB yet - as it involves a radio active dye being injected into the breast in a very precise place and then an hour later a scan to check its gone in correctly on the day before the operation. Of those who can't do it, I think many of them elect for a total lymph node clearance so they don't have to go back in at a later date. Everyone should have equal chances of the very latest technology, but unfortunately it doesn't happen. The hospital where I had my SNB are now moving on to a new technique involving "micro bubbles" which is even more accurate.
Blimey Mell, that seems extreme - total clearance for 1 involved node. Was that after a SNB?
It seems that doctors dont practice the same across the board and seem to have little thought for the consequences - ie lymphodema.
I have lymphodema of the breast and a bit in my arm after 9 lymph nodes removed (only 1 affected) and my surgeon and BCN have shown very little care about it - apart from saying "you have mild lymphodema" and then moving on. I haven't pressed to get referred yet as just finished chemo but will be next month when I see surgeon.
Hi,I was just wondering is this a very new procedure,I was diagnosed in september 2007 had 1 node involved and had to have total clearence.I now have lymphodema which is a big pain.
best wishes Mell xx
If you would like to give the helpline a ring I'm sure they'll be able to explain this in detail for you. (Mon to Fri 9am - 5pm 0808 800 6000)
The removal of all lymph nodes is now considered "old fashioned" unless of course they are all infected. Many hospitals do SNB (Sentinal Node Biopsy) now and if the main (sentinal) one is clear then they only remove the 1 above it to make sure. The removal of all lymph nodes can have a very bad effect on that arm and they try not to do that unless absolutely necessary.
I think total clearance of lymph nodes is done where a large number of the few taken are cancerous. As you only had 1 out of 5 affected they wouldn't clear the rest. I had 1/9 affected. Not sure what the cut off point is - eg had you had 4/5 or 3/5 they would have gone for total clearance.
Whats odd is that different surgeons take different amounts during the initial op before deciding whether or not to do total clearance and of course more and more surgeons these days are doing sentinal node biopsies and if that is clear they do no more.
Seems there is no such thing as standard practice.
I've just had a mast (following chemo), plus removal of a sample of lymph nodes. 1 out of the 4 or 5 had cancer, which was a better result than we anticipated (as I had big aggressive nasty). I had thought that standard practice was to remove all the lymph nodes to be sure. However, my surgeon says they don't do such a radical procedure anymore, as recent research has shown that radiotherapy to the area is just as effective as total clearance. For some reason I am worrying about this. Is this now standard practice?