Hi lovely ladies!
From reading other messages it seems very common for an axillary node clearance to be carried out if there is a positive sentinel node.
I had 3 sentinel nodes come back positive out of 5 (3 showed up as hot nodes) for a small amount of macrometastasis (don't know the size) however there was no discussion during my results, post WLN surgery, to suggest axillary node clearance any time soon. Due to the sentinel nodes being positive it's likely I will need chemo (grade 2 2cm er + her2-) unless if go for optima and that changes the plan. My letter then said recommendation from MDT is axillary clearance after chemotherapy with a question mark....
Does anyone know from their own experience why axillary clearance isn't done sooner to check from any further spread? I've had my bone scan which is clear and ct on Tuesday then oncology meeting 19th!
Thank you!! xx
I had 2 of 3 positive for macromets. Was offered clearance or radiotherapy. Apparently in most other European countries axillary clearance is no longer first line treatment. NICE clinical guidance states either option available for positive SNB. I was provided with information on trial data which shows no difference in prognosis between both treatment (10 year follow up) but less risk of lymphoedema with RT. I discussed with oncologist and we decided on15 sessions of RT - no clearance. 6 months on happy with decision.
p.s I was also told decision re surgery/RT didn’t have to be made until after chemo.
Hi Da1984
I had my treatment 2021-22. Hormone neg, her+ with 1 node out of 3 positive. I did not have clearance. I had 3 weeks of radiotherapy. It took me a while to be comfortable with the decision as most people at the time seemed to have clearance. Also my oncologist said they’d be happy if I did neither which I thought was really odd but I didn’t question him at the time.
Hopefully your oncologist will clarify when you meet them.
Best wishes x
This is really interesting, thank you so much ️
From what you've said is pretty much what my nurse said when I called her aswell.
Same with mine if I have clearance then it is discuss after chemo. Just so much info to try figure out
Thank you again and hope you're doing well! X
Today there is a lot of medical treatment protecting people from treatment that has side effects or give more marginal gains.
I had an oncotype test after my mx surgery but it didn’t register enough to measure so answer was no chemo. At the time I was hugely thankful to be spared chemo thanks to such progressions, however two years later the cancer came back in one lymph node and I wonder if things like oncotype wasn’t there I might have been better off.
I would rely on what your oncologist says and worth posing question to them if was them or their mother, sister or daughter what would they recommend and ask what is the percentage benefit from each intervention.
Everyone has to do what’s right for them but worth leaving no stone unturned. Having been through the terrible day they said it’s back my view of these decisions have changed.
Lymphedema is not life threatening (and thankfully I haven’t got it) but a recurrence can be.
I know how hard it is to decide and I hope I am not adding to the stress of making these calls and wish you the best in whatever your decision is.
Thank you and no further stress added at all.
I have been asked to go on the optima trial which I'm not going to do and going to go ahead with chemo for that reason, (then visit clearance after as recommended by MDT) incase it comes back and questioning myself if I did the right thing. I'm such a worrier that I would rather know if have done all I can to prevent a recurrance. I would rather go through the side effects of treatment as nothing can be worse than the waiting on results and being told you have cancer, surely!
Oncology appt on Tuesday so hopefully get a plan in place finally
Thank you again and hope you're doing well xx
That’s great you have decided. I found surgery no bother, chemo tough but doable and rads was fine. There is so much now to help with side effects that it is more manageable. Be sure to ask for help with any side effects and don’t wait they are a phone call away.
I was on the harshest chemo and still kept my hair (admittedly with a lot of work to do so) but all in all doing as much as you can now will give you peace of mind. I am good now and out the other side. On lots of post meds like abemaciclib and anastrozole but finding all ok.
Wishing you the very best. And it’s v good to get the plan as that will help your mindset enormously.
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