HELP! Should I have a ALND?

It is a tough decision and only you can make it. I did have full ALND, and it was a good thing I did as I had 20/24 positive nodes (none seen on scans or palpation). As you are 5cm tumour with 4/4 nodes it might be the safest option. I don't have lymphedema (4 years on), or maybe slight lymphedema in my trunk (not sure as it feels more like gas and it comes and goes). I have full range of my arm and have full strength BUT I do have discomfort (not painful) in the area although I dont know if that is scar tissue or shrinkage from radiation. Just to give you an idea of one persons experience of complete ALND. It's a hard call. Good luck.

vmb - Double mastectomy here with no other treatment recommended. Then recurrence in a lymph node two years later. I had neoadjuvant chemo. If the tumor had completely disappeared, I would likely have had rads only. But unfortunately it did not so I had ALND - then more different chemo & rads.

Has anyone mentioned chemo before surgery to see what happens? It may not be appropriate in all cases.

Hi vmb,

I had surgery in September. When I found out I had 1 positive node out of 5 I was angry my surgeon didn't take out more, or discuss with me the options before surgery. Especially with a mastectomy, no radiation is planned like with a lumpectomy. The new NCCN guidelines they are following basically say if you are getting radiation and have under 3 nodes positive you don't need ALND. On final pathology I ended up with 2 positive nodes, extra nodal invasion and lymphovascualar invasion. So now they are saying radiation and most likely chemo. Surgeon won't do ALND. I'm glad your doctors gave you the choice, as they should! No final decision for me either, but if I end up with chemo and radiation, I don't think I'll seek out another surgeon to take more nodes out first and delay the process. For some people, knowing if those extra nodes are positive help in determining chemo or radiation. I hate that our generation is the guinea pigs for "less treatment" is fine. Then when metastatic rates start going up in the future, they'll say, whoops we were wrong. Sorry, don't think I helped you too much. Except that 2 weeks ago I felt I had to have it done, but now I probably won't, if I have chemo and radiation.

vmb - I think I answered on another thread you started in addition to above, but yes - I had TCHP chemo before ALND surgery. Neoadjuvant chemo on a recurrence in a lymph node 2 years after BMX. The tumor shrank but not enough to avoid surgery. So then after surgery I had AC chemo before rads.

I had all this seemingly over the top treatment because I was ER/PR negative but HER2+, so no protection from 5 or 10 years of Als.

No, a local recurrence is not the same as METS. And ALND just removes the malignant bits & works for clean margins. It doesn't address micro mets that might be hiding. I don't think there are any guarantees in this messy business. We all have to research and find docs we trust and pick the treatment we believe will work. It's easy to second guess your decisions, but try to focus on your plan and move ahead with faith that you've chosen the correct path. If you're not ready to commit to that, maybe you should drop back & get another opinion. Wishing you the best of luck.