Positive SLN macro met after surgery- Confused/worried

HI, nice to meet you & sorry you find yourself here. I hope you get some answers from your oncologist & the oncotype results soon. One thing I wanted to say is that lymph nodes are really hard to see. Like almost impossible. They just collapse when you touch them and they look like nothing. A bunch of stuff that my surgeon (a surgical oncology fellow - so super high trained in this) took and labelled as lymph, the pathologist looked at it and said 'nope, fat tissue. Next'. That's just how it is. Even with the staining, the radioactive dye, everything, lymph nodes are not a strong physical structure like a vein or an artery so they're hard to isolate. So that might explain part of what has happened. And no imaging is as good as surgery + pathological assessment which is why final staging is done after surgery - things often change after surgery. Tumor size can change, or something can by found in a node like in your case.

Hang in there. I don't think your surgeon will be able to offer more info. I think the oncologist will be more helpful. If you're really worried and they agree, they might agree to a chest CT but just FYI that's just not usually done in Canada unless there are other symptoms which might suggest a metastatic spread.

I agree with Moth. Surgeon's cut - that's what they are trained to do. No criticism, but you need an MO driving the bus. I'd focus on what the MO (medical oncologist) is saying even before the rads onc. Sorry you had to join us. Good luck. Please do update us.

Something I had forgotten about ... my MO had shown me some NCCN guidelines which recommended the ALND for me because I had 3 positive nodes. I always wondered about those who only had 1 or 2 nodes taken. My understanding is that other than the sentinel node(s), the surgeons can't just go in and pick out nodes. They are not visible in that way. So perhaps the thought is if they have taken extra tissue and no more positive nodes were found the risk of additional positive nodes is low enough and no need for further testing? I also think the radiation is to knock out remaining cells as kathabus mentioned.

kathabus - Looks like I'll follow a similar path as you with radiation and hysterectomy as mine is highly hormonal driven too. How is the Femara (Letrozole)? Will you take for 10 years?

Got cancer- glad to hear you are getting a second opinion. I completely regret not getting one for peace of mind. I had a UMX for my cancer and had 2/3 positive nodes. One with extranodal extension. They always “ looked good “ on imaging so we were caught off guard. The tumor board decided that radiation instead of ALND would be reasonable to lessen the chances of lymphedema. My mammaprint came back low risk so my MO advised no chemo. This is different than your situation but at a later appointment my MO made the statement that “At 5cm and with your age and positive nodes some would argue you should have had chemo.” My tumor was 4.8 cm😳. He was trying to drive home how important it was for me to stay on tamoxifen. It just still haunts me. I wish you the very best as you move forward with treatment.

Sorry GotCancer that you are going through this.

I had a palpable enlarged lymph node at diagnosis (which I found myself, this was three months after a clear 3D mammogram and exploration of nodes) that biopsied positive, so the plan for me was always ALND. I had chemo before surgery and the had two nodes positive with macro mets, I think 4mm and 6mm, with extra capsular extension. Also way more cancer than expected in the breast, after a clear pre-surgery MRI. This was very disappointing and I was devastated, so I think I understand how you feel.

Breast imaging is very inaccurate, especially if you have dense breasts -my case.

Sentinel lymph node dissection, and the decisions surgeons make on the fly when the patient is under sound murky to me. Personally, I found reassuring that they removed my entire fatty pad with every single node on my cancer side. But the literature says that removing less nodes and then giving radiation produces the same long-term survival outcomes than removing all nodes. And removing all nodes increases the risk of lymphedema, which is a very serious side effect, and brings other quality of life issues. So they try to balance the risk of lymphedema and quality of life against the chances of spread, and I guess they trust this procedure of the dye and the draining and they are sure of which nodes drain first -although I still dont understand it and it sounds unreliable and subjective.

I know for a fact that, in your feet, I would be screaming for ALND, but you need to consider this very carefully, ask for second opinion at a large cancer center, get all the facts and pros and cons, find the relevant literature -ask your surgeon and oncologist for guidance. Your cancer is low grade, which is good. Do you have other risk factors for lymphedema (e.g. being overweight)? Imagine you push for ALND, they take 20 nodes out, they all test negative, and then you get lymphedema for the rest of your life. These are very difficult decisions.

So many of us with node involvement and surprises! Sorry for all, at the same time I feel less alone

LeesaD, what a ride! Thank God you pushed for that ALND.

My story is similar to Leesa's, and we follow each other around on this site telling it in these scenarios, lol! My SNB was declared clear in the OR, then was positive in the lab for isolated tumor cells - only 20 were counted, which many surgeons would consider artifact from biopsy since there were so few. Because I had an aggressive Her2+ tumor my very experienced surgeon (former head of breast surgery at an NCI center and one of the pioneers of SNB) said I needed ALND. MO agreed, but I resisted. They were both adamant and not movable on the subject, so I went ahead with surgery five weeks after BMX and additional positive nodes were found that were large, 6mm. I believe this happens in less than 10% of cases, and there was never suspicion of nodal involvement based on physical exam or MRI, which shocks me because the size was certainly large enough to meet the threshold on imaging and I am relatively thin so you would think something of that size would have been palpated on exam. Like Leesa I have no regrets about my decision, but I did develop lymphedema. I have it bi-laterally even though I only had SNB on the prophy breast, but I would rather have lymphedema than cancer. It is currently well controlled and I had no particular risk factors other than not having a large number of nodes to start with, which is impossible to know in advance. Had I not had the ALND it would have been like leaving an unknown Stage 1 breast lump in place and relying on systemic treatment only to eradicate it. Rads was not recommended because I had BMX with excellent margins and the resident nodal cancer was unknown. Because Her2+ breast cancer is not sure to have pathological complete response it could have been disastrous not to have the surgery, but the dilemma is that all indications - only IST in the SNB, no palpation and a negative MRI gave zero indication of what was lurking in there. I have often wondered how many with negative SNB who do not receive rads really do have some degree of nodal cancer that has escaped detection and then go on to later mets. I am not sure there is any way to track that or know for sure. Like LaughingGull my very palpable breast tumor was never seen on mammogram, despite being able to roll it between my fingers and being almost 3cm. Even though I had a previous total hyst/ooph, so reduced estrogen for the nine years preceding my breast cancer diagnosis, I still had extremely dense breast tissue that was also hiding DCIS, ADH, and ALH, my prophy breast really wasn't. I image poorly, including a large, but hidden, pre-malignant ovarian tumor found accidentally at the time of ooph despite having a TVUS not long before. ALND was the right decision for me, but it is important to have a full understanding of both the risks and benefits before deciding.

GotCancer....I am so sorry you are here with us. These ladies have given you great information to think about....I can’t add much that hasn’t been said. My surgeon felt a suspicious lymph node at our first meeting and it was biopsied on the spot so I knew going in I had cancer in one node. So the plan changed to chemo first and I was terrified. I didn’t want chemo...I’ve seen the movies and thought I knew what that looked like. I’m 49 and decided as scared as I was you get one chance to cure this and I wanted to throw everything at it. I was healthy going into this and I did AC-T. I ate tons of protein, drank a ton of water and exercises until the last few weeks when I got pretty fatigued. I worked full time through chemo and did really well. I lost my hair and that sucked. I felt tired and not like myself but I didn’t throw up, I didn’t lose or gain weight....it wasn’t fun but it wasn’t as scary as I thought.

I had 4mm of cancer still in that node at surgery and 14 others taken out that were clear so I’m doing rads now. Like you I have bilateral mastectomy, skin sparing, nipple sparing and direct to implant. Once I got over the initial shock of losing my breasts and getting these new foreign breasts...I’m okay with them. They look good and they no longer feel weird and now they might get messed up during rads. It all sucks. But rads lowers my chance of reoccurance by 30% and raises my survival by 10% so I will do them and hope for the best. It’s a ton of hard decisions and in the end you just want to have no regrets. I also have the PALB2 genetic mutation so somewhere along the line I decided I needed to be aggressive and do everything I could no matter how scared I was. If it comes back I’ll be upset but I know I did all I could.

Making all these hard decisions is the worst. I’ve found once I’ve made the decisions and start the treatments I feel more at peace. Sending you hugs as you figure out what you want to do. Please keep us posted.