Radiation or ALND + Radiation

Mst1985

Hi,

I'm 33 years old. I had dose-dense neoadjuvant chemotherapy from August to November (AC-T regimen) and a unilateral mastectomy (left breast) on 20 December. The day of my surgery, my breast surgeon had told my family that my sentinel node biopsy came clean/negative. We were all really happy to hear the news. However, upon getting my pathology report we found out that even though my sentinel nodes were clean, my non-sentinel axilla nodes were not. Out of the four nodes removed (2 sentinel and 2 non-sentinel), two sentinel nodes were negative, one non-sentinel nodes had 3.5mm cancer, and the other non-sentinel node only had "treatment effects." My breast surgeon said I could either remove additional lymph nodes or just get radiation.

My radiologist oncologist recommended getting only radiation. He said that getting both an ALND and radiation significantly increases my risk of getting lymphedema (about 30%) without significantly reducing the risk of recurrence (about 1-2%). I will also have to get radiation regardless of whether I get an ALND or not because of my age and other factors.

I had made my decision to just do radiation on Friday. But I'm having second thoughts right now.

Would love to hear what you all think about this and receive any advice/suggestions/recommendations!

Thanks.

LeesaD

During my mastectomy, one of four sentinel nodes showed micromestases so less than 2 mm of cancer. Post surgical pathology showed it was actually two of the four with micromestases. My MO and surgeon both said odds of showing any further nodal involvement were slim to none with just micromets so neither recommended ALND. I personnally knew I would not be able to function not knowing status of axilliary nodes. I asked my surgeon to go back in which he agreed to. He did ALND and took out 14 more nodes and two of these fourteen were fully positive with even more cancer than the sentinel nodes. I had radiation also after the ALND. This was just my experience and everyone is different. You have to do what you feel comfortable with. I had to trust my gut and I'm glad I went back in as I'd still have those positive nodes and would've skipped radiation as it wasn't recommended with mastectomy and just micromets. I'm almost two years out and I haven't had any issues with lymphedema. I exercise and my arm has been fine so far. I remember when my MO was discouraging me from having ALND I said I'd be better suited dealing with lymphadeama than I would be with the unknown of further nodal involvement. For me it was an easy decision and I have no regrets. Just my story. Best of luck to you in what you decide.

Dani444

In all of my imaging my nodes looked good, even before diagnosis the tech doing the US kept saying “Your lymph nodes look really good.” I had an UMX with direct to implant in October. When the final pathology came back we were a bit surprised by the results. Two of my sentinel nodes were positive. One had 5mm of disease, the other 4mm plus extranodal extension of 2.5 mm. My BS was ready to take me back for full dissection but wanted to meet with the tumor board first. I fell into a gray area for rads after mastectomy as she said at 5cm they do radiation after mastectomy. My tumor was 4.8 cm. She said that they had a very lengthy discussion and multiple RO’s recommended radiation. She stated that the tumor board felt I would not gain anything over having the ALND vs. radiation. She was also worried that the risk of lymphedema was greater with ALND and the impact that could have on my quality of life if I did develop it. Everyone is unique and these decisions we have to make are definitely not easy ones. I am in the middle of rads right now. They are doing my chest wall, subclavicular, axillary, and intermammary chain nodes. I wish you the best in your decisionyou will make the one that is best for you!

leftduetostupidmods

I had macromet in sentinel node (3 mm). The same lymphedema fear as you. Had a compromise with BS that, if ALND shows no other lymph node involvement I skip rads. They were negative. But honestly if they wouldn't have been negative I would have gone for rads. For the simple reason that, the same as with breast tissue, it's never 100% that they found and excised it all.

michelelf

I had 3/5 seemingly normal sentinel nodes that had macromets. However, I opted to not have ALND because of my fear of developing lymphedema and because I knew I was going to have whole breast radiation after my lumpectomy. I have to say I questioned my decision many times (especially after I realized I had IMPC), and actually ended up developing breast lymphedema despite not having the ALND. Thankfully after months of active management, the lymphedema has reversed. These decisions are always difficult to make and I wish you the best.

mellee

Hi Mst1985! I had ALND in late 2016. My surgeon expected my nodes to be clean, and they seemed to be, even in surgery, but pathology showed macromets of 3mm in 1 sentinel node and micromets in another (for a total of 2 nodes out of 5). He made the decision to do ALND with the hope that I wouldn't need radiation, since he knew I wanted to avoid it. I had 27 additional nodes removed, which were all clear.

I will say that the ALND was by far the most painful and debilitating part of my recovery. The double mastectomies were nothing in comparison. I woke up feeling like I had a Frankenarm. I couldn't fully straighten my arm for months because of painful cording. And I went on to develop lymphedema. The numbness and mobility in my arm has gotten better over the last 2 years, but it will never be the same. ALND is no joke, and I regret having it done. Especially because all the research shows that when only 1-3 nodes are positive, radiation alone is just as effective as ALND. Yes, it's nice to have the peace of mind of knowing for sure, but it comes with many permanent and potentially disabling side effects.

And if you're going to have to get radiation anyway, I highly recommend against it. You will be drastically upping your odds of lymphedema, which is lifelong.

I had a recurrence, so I'm having to get radiation now anyways, and I'm freaking out about hitting the axilla again. My RO said the chance of my lymphedema getting worse is 30-40%. I wouldn't wish this situation on anyone, so I really urge you to look at the research before doing an unnecessary lymph node dissection.