I’ve just spoken to my breast care nurse in Brighton where I’m having treatment. She also confirmed that this will probably become common practice, but that it’s too expensive for all hospitals to have the means to test the nodes mid-op so only a few hospitals are offering this at the moment - but that it is common practice in Europe and America.
This has made me feel a bit better about it. But there doesn’t seem to be anyone on here who’s done it, so bumping this up again - just in case!!
Mynahbird,
I’ve had many discussions with my BCN, surgeon and oncologist who all seem to think this is the way forward, but I’m still scared!
So, I either go for full axillary clearance or just have the SNB whilst under for my bilateral MX and they test the lymph nodes there and then with OSNA and if there is live cancer in the cells they perform a full clearance - but if not, then they leave them in.
I just don’t know. And am worried that hardly anyone else seems to have been offered this. Is there ANYONE out there who’s done this? Or even stories that would go against this procedure. Or stories that would support this procedure (ie other neoadjuvant ladies who knew they had cancer in their lymph nodes prior to chemo and following the clearance only had scarring?).
I’m really struggling with this decision. AAAAGH! Sod’s law means I’ll probs have live cancer in the cells and end up with a full clearance either way and all of this fretting will have been for nothing.
x
Hi Sandytoes, I think you may already know about my circumstances, but thought I’d share with you again. Although I am VERY aware that everybody is an individual, and my case was unusual.
I had a 7mm tumour and had SNB. I had it done privately (huge waiting list), by a Brighton surgeon, and 5 nodes all came back clear.
5.5yrs down the line, I had 3 sizeable cancerous lymph nodes. No one can tell me how it happened. The surgeon thinks the nodes probably already had cancer in them, lying dormant.
If there was one thing I could change about my cancer treatment, it would be to have had node-clearance.
If the Marsden are telling you this is the way to go, then I’d be seriously tempted to go with it.
It’s great that they’re offering to test the nodes during surgery as I was told that lymphoedema is much more likely the more times a surgeon’s been in and dug around, however many nodes they leave behind!
Very hard decision. Let us know how you get on. xxxxxx Jane
Thanks Jane,
Apparently all SNBs have a false negative rate of 10% - but chemo is obviously meant to mop up any stragglers. I think they are looking at this for neoadjuvant chemo ladies as they know that there was cancer in the lymph nodes and then check to see if the cells are dead following the chemo - but you’re right - they can’t test to see if there are any lying dormant.
My BCN likened it to the move from mastectomies to lumpectomies - apparently ladies were really worried about having tissue left behind, but some ladies took the decision to go with the new theories and it then became standard practice. Ditto with the move from everyone having full axillary clearance to the SNB in order to save ladies from “unecessary” invasive and painful surgery.
However, I’m feeling a bit like a guinea pig as nobody else seems to have done this!
Thanks for sharing your experience again.
x