ALND for micromet?

Cubbie2015

My doctors seem to be not exactly disagreeing, but not exactly agreeing either, on how to handle my micromet.

When I had the mastectomy, my lymph nodes appeared to be negative, but a week later when the final pathology was complete, I had a 1.8mm micromet in one of the two sentinel nodes that were removed. (The other node was negative.) At this point, my surgeon said that he didn't think it was necessary to do an ALND because the majority of the time when they do an ALND under my circumstances, they don't find anything further. He said that the MO might want me to have an ALND, though, because they sometimes use protocols that call for the ALND. He said if the MO wanted to do one, we would.

I saw the MO the following week, and he said that I needed to have an ALND, regardless of whether I had chemotherapy or not. (The chemotherapy decision is waiting on the results of the Oncotype test, which are not in yet.) If I did not have chemotherapy, then I would have the ALND right away, if I had chemotherapy, then the ALND would wait until after treatment was complete.

I asked him about radiation as an alternative, and he said that he doubted that an RO would consent to radiate me. It sounded like the whole situation was settled, and I began to prepare for facing ALND. This will be a life changing surgery for me, as getting lymphedema would necessitate selling my house (no more yardwork) and affect my career, as lifting heavy items was a fair part of my job.

The following week, I saw my surgeon for another follow up and he asked me about the MO appointment. I told him that the MO had said I needed the ALND regardless of what direction treatment took, and I had questions about the ALND - how it was performed, recovery, etc. The surgeon asked me about radiation as an alternative, and I told him what the MO had said. The surgeon was still less inclined to do the ALND, and he setup an appointment with an RO to get an opinion from him.

So now next week I see the MO to get the results of the Oncotype and chemotherapy recommendations, and later the same day see the RO to find out if he thinks radiation is an option.

I feel like the more I talk to doctors, the more confused I am. I'm not even sure what questions I should be asking. So far I have:

1. Will having an ALND improve my survival chances?

2. Is the ALND necessary for accurate staging?

3. How effective would radiation be versus surgery?

4. Would the ALND still be recommended if I had had a lumpectomy instead and was having radiation anyway? (The mastectomy was my choice, the surgeon and MO actually recommended lumpectomy.)

5. How does my age (43 and premenopausal) factor into this? (I've been told this means we need to be more aggressive in our treatment, since we're looking at the next 40 years.)

Is there something else I should be asking the MO or the RO?

ElaineTherese

Hi!

I would ask, "What do you mean by ALND?" There are three levels of lymph nodes in the armpit area. Do they plan to take out just Level 1? Levels 1 and 2? (It's rare that Level 3 would be taken out these days.)

I had ALND and ended up having 20 nodes removed (Levels 1 and 2). Everyone has a different number of lymph nodes, so you won't know how many will be removed until they are. By the way, I don't have lymphedema, so it doesn't have to be life-changing surgery. Best wishes!

jojo9999

I had one positive node (2mm) out of 4 and my BS said that, in mid 2014, they started using radiation instead of ALND, so that is what I had done. There are studies out there that cover this, I am sorry that I don't have them now. They radiated the axillary nodes and the ones near the collar bone, in addition to the breast area. let me know if you want citations, i can gig them up.

inks

I had 2 micromets in one node as well and we went with the newer protocol of radiating the nodes. Even most clinical trials now allow physicians choice for how to treat the nodes in case of micromets in nodes. ALND carries so much more risk than radiation. Remember that it's your body and you have a say either way.

Cubbie2015

Inks and jojo, your treatments seem to jibe a lot more with what I'm reading. I guess I'm just concerned that my MO's approach seems a bit old-fashioned, and yet he seems very progressive in other ways - doing Oncotype despite the node, attending conferences, etc. I think he needs to explain better to me why he wants more surgery in my case. And inks, you're even younger than I am, so the recommendation can't be entirely based on age, either. I'm not opposed to more surgery if that's the best choice for the situation, but I want to understand why we're doing what we're doing.

Elaine, that's an excellent point. My surgeon said they would be removing the fat pad under my arm, which I think is only Level 1? I need to clarify that the surgeon and the MO are on the same page as to what exactly would be removed.

Cubbie2015

Just to update anyone who may be interested in this topic, after my oncotype came back in the low range, opinion has shifted, and my team of surgeon, MO, and newly joined RO are all recommending radiation, although it is up to me. I'm going for a second opinion at the state university hospital before I make a decision.

marijen

I just had an ANLD, there was no mention of radiation as an alternative. These notes say radiation is less riskier, I would like to know why? What exactly is a micronet please. I also don't know if they will included the axillary area in radiation because I haven't talked to the RO yet, pathology report not in yet. Please let me know what you think. You are right to carefully weigh the options.

inks

Cubbie - I am glad you are giving your decision a lot of thought and weighing your options. We are all so different and just need to pick a treatment that will give us a peace of mind.

Cubbie2015

Marijen, a micromet is a spot of cancer in the lymph node that is larger than 0.2 millimeters but no larger than 2 millimeters. In other words, very small. In my case, my two sentinel lymph nodes appeared clear during surgery, so no further lymph nodes were removed. It wasn't until my final pathology report was completed a few days later that this small spot was reported in one of the sentinel lymph nodes. In this sort of situation, radiation may be an alternative to more surgery.

The greater risk we were referring to with ALND is the risk of lymphedema. My surgeon also noted that there is some risk of nerve damage from ALND as well, although it's a very small risk.

coraleliz

cubbie-I had 2 positive nodes. My MO told me I needed to get an ALND & sent me back to my BS. BS wouldn't do it. She sent me to an RO & suggested I get an "academic opinion from Dr Armando Juliano. http://newsatjama.jama.com/2011/07/26/author-insig...

I went to the RO & he told me that if the MO need the additional info that an ALND would provide to treat me, I should have it done. I asked if a recent study on this could be applied to me. He said he'd review it & get back to me if it did. He called me back a week later & said the study could be extrapolated to my situation(mastectomy vs lumpectomy). So, he changed his mind. I ended up having radiation to both sides & both axillas(I had CA on both sides).

I dodged chemo with a low oncotype.

It sounds a lot like your situation. Hope your treatment plan comes together soon.

vlnrph

Kudos to Cubbie for doing so much research herself! During your second opinion consults, be sure to ask the university hospital doctors about the risks of rads if there is a chance you have a non-BRCA mutation.

Earlier this week during a talk with our local support group, a breast surgeon shared the thought that recurrence rates may be increased in radiated tissue when cellular DNA repair is compromised.

At such a young age, perhaps you would be a candidate for broader panel testing. Has anyone in your family had genetic counseling recently?

marijen

Dear Cubbie, thank you for your explanation. My node was 2.2 cm after it shrunk. So I would not have qualified for armpit radiation instead of ALND. Another question answered!

Cubbie2015

Coraleliz, thanks for the link to the article. I'll want to read those studies linked from the article more closely, as well. I think I read about your situation on another thread about micromets. I think I made things a bit a complicated for myself when I opted for a double mastectomy instead of a lumpectomy. If I had a lumpectomy, I would have been having radiation anyway, and I would have fallen more solidly into the categories in the studies. But the standard practice seems to be that if you had a mastectomy, then any lymph node involvement requires ALND. But I think that assumes you had a mastectomy for immediate medical need. In my case, lumpectomy was actually recommended, but I chose a mastectomy because of my 21% lifetime risk of breast cancer (which meant I had a 21% chance of getting a new primary some day.)

vlnrph, that's interesting about what the surgeon said. I did actually have the Myriad MyRisk panel, not just the BRCA testing. That turned up nothing. One of my cousins also had genetic testing at Creigton University (she's an alumni), which also turned up nothing. I haven't actually talked to a genetic counselor, since my testing panel came up with nothing in particular to discuss. I don't know if there would be any value to that?

mkinoly

I was stage IIA with 1 out of 2 nodes and ALND was not recommended for me. The surgeon and onc met and talked it over and the surgeon decided not to recommend it because he said studies show it does not improve survival rates. The onc did recommend chemo and radiation because of the 1 positive node (though I'm not doing their treatment) . Even if they had recommended ALND, I probably would not have done it. In my mind, it's overkill and the chance of quality of life complications is big. Everyone has to decide for themselves, but I wanted to share that my surgeon seems to following current thought and studies and didn't do ALND.

marijen

mkinoly, one out of two nodes is 50 %. What does your MO say about that?

I am still mixed up on what is axillary and what is sentinel? Someone explained but I don't know where to find it now. My surgeon took out 12 nodes, only one was positive. I said to him, I could have used the other eleven . He says he doesn't remove the nodes in front of the vein, that is why his patients never get lymphedema.

mkinoly

Hi Marijen. My MO wants me to do chemo and radiation for having 1 out of 2 nodes positive. Plus she's having me get some scans done to get a baseline.

marijen

Oh that's good. Just looking out for you.

Cubbie2015

For anyone who might be interested in this topic in the future, I thought I would update. My case was presented to the tumor board at the state university, which is an NCI cancer center, and they also recommended radiation in my case, no ALND. I just finished my radiation treatments today. In addition to the axillary lymph nodes, they also radiated the chest wall and supraclavicular lymph nodes on the cancer side as well - basically the standard procedure for post mastectomy radiation.

badger

hi Cubbie, just found your thread, thx for the update. I had bilateral sentinel node biopsy at time of BMX. Surgeon took four nodes, two from each side. Path found a micromet in one node. Both surgeon and onc recommended against ALND. Onc rec chemo but no rads. Did five years of tamox and just finished year one of anastrozole (generic Arimidex). Six years out and so far so good (knock on wood, fingers crossed, etc). Best wishes!