Additional lymph node dissection after finding micromets?

Elle2

I recently had a mastectomy and sentinel lymph node dissection surgery with reconstruction. When pathology came back, the lymph node was found to have micromets. I've been struggling with the decision of wether to push for an additional surgery to remove a few more lymph nodes to be sure all cancer cells are gone. My surgeon took my case before their monthly board and the recommendation came back against additional surgery for fear of lymphedema. However, the fear of leaving cancer cells behind almost outweighs the possibility of lymphedema. Has anyone else pushed for a second surgery to remove more involved lymph nodes, if so, was the result worth it for you? Did you develope lymphadema as a result? Thanks for any response and for helping me with my decision.

AliceBastable

Has your oncologist mentioned radiation? That's what it's for, to clean up any cells that may have escaped. Although done less often on patients with mastectomies, it's not unheard of.

Cubbie2015

I had this exact scenario with a micromet in on sentinel lymph node. I talked to my local MO and surgeon, and got a second opinion from our university based teaching hospital. I ended up having radiation. Neither breast surgeon I saw recommended getting an further surgery, as the odds of having any more positive nodes in my case was low. I did a bunch of research at the time, and a study (ACOSOG Z0011) had showed that radiation and additional surgery were equally effective in this situation. I believe another study (AMAROS) has further supported this.

It's a decision that very much has to be tailored to the patient. For instance, some people really want to avoid radiation for their own personal reasons, and would rather have surgery instead. Also, your specific diagnosis factors into the decision. I see you are being treated at MD Anderson? They would be on top of this, for sure.

I would definitely recommend getting radiation if you do not get further surgery.

Elle2

Alice and Cubbie - thank you very much for your responses. As far as the radiation goes, I already had it with my DCIS diagnosis in 2008, so the standard practice is that it is off the table. From what I understand, the soft tissue does not hold up well to second rounds of rads. In addition, my MO mentioned that even radiation can cause lymphadema, the same reason my surgeon doesn't want to remove further lymph nodes. I do trust my docs, but I also feel a strong need to do everything possible to avoid a distant recurrence. I've even agreed to stronger chemo medsif additional surgery is not an option. I really wanted to hear from someone who had made that choice and wether the result was worth it or not.

Edited to add: I only had one sentinel node removed which involved micromets, leaving me unsure if there are further micromets in additional lymph nodes. Add the fact that radiation is off the table and my Oncotype came back at 44, I need some peace of mind.

Cubbie2015

Ah, I see your dilemma.  So as part of your post-lumpectomy radiation in 2008, they also radiated they armpit area, so that's not an option again. That does make it a tougher call.  I think in the end you have to do what you are comfortable with.  I know it's MDA, but it doesn't hurt to get a second opinion if you have doubts.

Svendonna123

I had a lumpectomy with sentinel lobe dissection. It was discovered from that that I have small cell lymphocytic lymphoma. A subsequent CT scan shows some lymph nodes are swollen. I am waiting to hear back from the oncologist on what to do. Normally, a watch and wait approach is taken. Anyone else have this? It was also discovered after lumpectomy and further cleaning the margins that there was another tumor in the same breast I had original lumpectomy surgery so now going to have a unilateral mastectomy. To be clear, cancer in lymph nodes is not breast cancer. I am in the lucky 6 % of patients who get this. Anyone else in my situation? Thoughts

Moderators

Dear Svendonna123,

Welcome to you. We are sorry that you are having to manage this new diagnosis. It may be that those following this thread are not in your situation. You can also post your question in the Breast Cancer and Other Comorbidity Forum. You can also use the search function and type in the words Lymphoma and you will find other posts containing that word that might lead you to others here in the community. Look for recent posts if you can. Let us know via pm how we can help you to find the support and information that you need.

The Mods

Elle2

Yes, I’m sorry Svendonna123, I’m not familiar with your diagnosis. I’m sorry that you find yourself here, but confident that you will find the answers to your questions. You’ve come to the right place. I wish you all the best n your journey.

Sarah_78

Svendonna123 I am familiar with Lymphoma since I had Hodgkin's 10 years ago. I will send you a private message about an online forum like this one so you can exchange with the people over there and get the emotional support you need as well as more info on that diagnosis. Hope it can be managed easily, some lymphoma I know are very lazy and they watch and wait for years. Wishing you all the best.

ThreeTree

Elle2 - You might want to check further and see if radiation is completely off the table. I've heard that sometimes they can do a second round or a different type, etc. I think it would be worth looking into. The old rule was "never again", but I think that has some exceptions today. My sentinel nodes were clean, but I did have one bad margin. I'd had a mastectomy and then rads. They did not do any ALND because of the fear of lymphedema. It's only been a couple of years since I finished the radiation, but so far, so good. If you could do radiation at all it might be the best thing.

Jinx27

Due to my age, my surgeon was aggressive. I had two nodes with micromets, and this gave my Dr the green light to remove more and test them for cancer. Out of the rest that were removed only one had cancer in it, making it a total of 36 nodes removed. Because of my family history and my age I really didn't mind it and wanted it all out. Doing this also helped rule out the need for radiation.

My risk for lymphedema was explained to me thoughrouly, I also had read up on it and my physician took time to answer my questions.

5 years later I do get swelling in my upper arm and armipit, hand, I have purchased a lymphedema sleeve and glove. These have helped alot. I have noticed that flare ups usually are from not being physically active, low water intake, consuming too much salt.

All in all, I would say the I dont regret them going in a taking out more because they were scared for me and also the chances of another surgery to take out lymph nodes again will be less likely, I think that was also what the docs were thinking the first go round.