No ALND or Radiation for micrometastases?

JRNJ

The NCCN Guidelines say if 1 or 2 sentinel nodes have macrometastases than basically you do either ALND (axillary lymph node dissection) or Radiation, not both. But if you have micrometastases, apparently do nothing? especially with mastectomy which did not have radiation planned, compared to lumpectomy which is automatic radiation. I can't accept this recommendation. Who has been told this and accepted it? Any long time survivors with this scenario? Who has been told this and pushed back?

MinusTwo

I had a BMX with clear sentinel nodes. Two years later I had a recurrence to the lymph nodes by my clavicle. I did neo-adjuvant chemo, ALND, more different chemo since I didn't have a complete response, radiation and Herceptin for the rest of the year. My MO at the time was insistent we treat heavily and I was in agreement. I'm now 5 years after all treatment and still NED.

JRNJ

thanks minustwo. Glad your doing good. Makes me wonder why they do radiation with lumpectomy but not mx to get any stray cells. How did you find recurrence?

gb2115

Wow, that would make me nervous, to not get radiated in the nodes. I had radiation for my nodes, but mine had 2.1 mm which I think just made it a macro metastasis. They never gave me a choice, just said I needed radiation.

LeesaD

JRNJ- I pushed back.here's what happened to me. During BMX 1 of 4 sentinel nodes was found with micrometastases. Final pathology showed it was actually 2 of 4 with just micromets. I met with my MO for first time after BMX and I asked him odds of further nodal involvement. He said slim to none. He said we'll order Oncotype and you might be able to avoid chemo and radiation not recommended as you only have micromets. Well 'slim to none' was not good enough for me and I knew I could not function not knowing if I had further nodal involvement. I had done research on micromets and all searches brought me to articles about it being a grey area and to do either radiation or ALND. I pushed hard for ALND and my MO and surgeon not so much agreed with me but complied and I had ALND surgery 3 weeks after BMX. Well ....I'll never forget the panicked phone calls from both of them within 10 mins of each other with the ALND results. 2 of 14 additional nodes and I quote my MO 'full of cancer' (fully positive) and my BS saying 'good thing we went back in' 🙄! My MO said destined for chemo now and set me up with A-CT. After port.placement and waiting for chemo to start my Oncotype results came back as they were ordered after BMX when thinking just the micromets in 2 sentinel nodes. Results were a 3 so extremely low. My MO changed the chemo regime to TC as he was encouraged by the low score and he said the heart risk of adriamyacin would outweigh any benefit. Sooo I had chemo and radiation as my radiation oncologist said 4 involved nodes now it is standard of care.

Bottom line, if I did not push and advocate for ALND for myself, my treatment would have been the BMX, NO radiation due to BMX and thinking just 2 nodes with micromets, NO chemo as my Oncotype a 3 and no one would think of giving chemo with that score AND I would've had those two full of cancer axillary nodes just sitting there and I would have never known. That thought still makes me want to throw up. If I didn't follow my gut I don't know where I would be right now. I'm told I'm the rare case where axillary nodes have more cancer than sentinel nodes but how would one know unless they're checked? I'm sure I can't be the only one this has happened to.

Cpeachymom

JRNJ- My nodes came back negative in the OR, macromets on final pathology, later reclassified as micromets by second opinion hospital ( which was really the 3rd time it was looked at ). Which reminded me just how subjective this all is! It’s just someone looking at slides under a microscope and guestimating what they see. 2.2 mm in total, but not in one clump I guess, so it depends on their criteria as well. Either way, that node got me rads. It was that or ALND.

If you’re not comfortable with the treatment plan, get a second opinion, or push for what you’re comfortable living with. It’s you’re life!

JRNJ

Thanks all! I'm losing my mind over this and having a nervous breakdown. I had one node positive during surgery. They took 5 sentinel nodes, no axillary nodes. Don't know if micro or macro. I also have pleomorphic ILC grade 2/3 and every test or biopsy is worse than the last, even though the surgeon keeps downplaying it. Leesa, I've seen your story before, which is another reason I'm crazy over this. I guess I just have to wait for the process now. I already know my surgeon is like, I'm done. I still need final pathology, onco score meet with RO and MO, and get second opinion. It's just so overwhelming. I'm consumed with wishing she explained this to me before surgery and I would have said take more nodes if one is positive, but too late now. I have to wait. I'm freaked out because Leesa you had your surgery pretty soon after the first, but my path is not like that. I think I will have to switch surgeons and it will take a while.

Anyone else like Leesa and me with one or two nodes positive, mx not lumpectomy, and the surgeon stopped taking nodes?

letsgogolf

I had 2 separate micromets in my first sentinel node of 8 taken. One was .3mm and the other was .7mm. I had radiation to the axilliary and supraclavicular but not the intramammary nodes.

Cpeachymom

jrnj-

I’ve never heard of a surgeon not taking more nodes if they found cancer during surgery. Unless they never discussed this with you and had to get your consent? My surgeon made sure I understood that if they found cancer she would do ALND as part of my surgery.

Maybe it’s different depending on the surgeon. They’re saying now rads is just as effective as ALND, maybe things are changing because of that?

JRNJ

Yes, she is going with the latest guidance that says rads just as good as ALND. The problem is, the guidance says no ALND if lumpectomy, because already going to have radiation. No radiation planned with mastectomy, therefore offer patient ALND. I wish this was discussed before my surgery. Sounds like that is exactly what happened with you cpeachy mom. They discussed it. Than later offered either one. I'll just have to wait to hear what they all have to say. It's just taking forever and I'm freaking out. MA is too far for me to travel, lol.

Peregrinelady

I had micromets and got three different opinions saying that the risks outweigh the benefit. However, my micromets was 0.26 mm, so very small. It did make me nervous as I didn’t have chemo due to low Oncotype. Also, my cancer was on the left side so perhaps they are less likely to radiate because of the higher risk to heart?

MinusTwo

JRN - I found my recurrence because a lump the size of a ping pong ball sprouted up by my collar bone. This was almost exactly 2 years after my BMX with all sentinel nodes clear & clean margins. Doc thought it might be 'migrating silicone'. I forced him to order an ultrasound - and resultant biopsy. Good luck.