Failed Sentinel Node Biopsy (ITC in removed node)

StartNew12212

Hello Everyone,

I am a new member but I've been lurking these boards since my diagnosis on 6/29. I had a double mastectomy on 8/12 and am seeing my oncologist next Wed for a treatment plan. Something is really confusing me and I was hoping some of you may have some wisdom to share on the topic.

During surgery, the surgeon was not able to locate the sentinel node-no dye showed up. She ended up removing one "funky" node I had biopsied a couple weeks prior that came back negative but was enlarged and still concerning to her. It looks like there were some ITC in that node but the surgeon is saying node negative. My question is, if she couldn't locate the sentinel node AND if she only removed that one node, then how does she know how much the cancer has spread? What if she took out 3 additional nodes and they were full of cancer? This would then change the stage and the treatment plan, wouldn't it? I don't get it. How can they say node negative with the limited information they have?

Thank you!!

ShetlandPony

I understand what you are saying, StartNew. ITCs are considered node-negative. So far that describes the node they removed. But the dye is meant to show the surgeon which node or nodes are the first ones beyond the tumor, and we do not know if the one the surgeon removed was a sentinel node. Given both the ITCs and the uncertainty, I would ask to proceed as if node-positive. They should be ordering the Oncotype test on the tumor to determine whether chemo is recommended. They can look at both the node-negative score and the score for those who have 1-3 nodes positive. This score can help fill in the info gap, since tumor biology would be considered a very important addition to the traditional staging criteria.

Mavericksmom

Hi StartNew, I too had a failed sentinal node biopsy in 2003. Be glad your doctor just took one node! My doctor NEVER told me a failed SNB could occur. Because it failed, I had the entire fat pad removed, 24 nodes and instant severe lymphedema in my left arm! I have been disfigured and deformed ever since! It was made worse now that I am have Medicare Advantage, which will not pay for things Medicare won't pay for, Lyphedema garments to name one!

The thing is, you won't know, but even if they took all the nodes in the fat pad under your arm, you still wouldn't know. My MO told me this at the time, which is another reason he did chemo. (no OncotypeDX in 2003) With a sentinal node biopsie, they slice it very thin, looking at the whole node. When a lotof nodes are taken, in my case 24, they only cut in half and it is still possible that there is cancer in the node somewhere. Things really got complicated for me when I got ILC in the same breast and had mastectomy in 2019. No nodes were taken since the pad was taken out before. I don't think they even take the fat pad any more. Even with a failed SNB, they only take a few nodes, which is better for women.

Your age, OncotypeDx score, grade, etc are better indicators of how you will be treated for your cancer. Node + or neg. really wouldn't make a difference. Notice that even women who had 3/4 nodes positive don't go back to have them all removed. Nodes are just one indication of how you should be treated.

Seriously, be glad you only had one removed! I wish that is all I had removed in 2003! More isn't better!

ShetlandPony

Mavericksmom, I'm so sorry you got lymphedema. Recently (but before covid lockdown) I was with my relative before her surgery, and buried in the paperwork for her to sign was the statement that if the sentinel node could not be found, complete ALND would be performed! (Take all the nodes.) I alerted my relative and we discussed with the surgeon, then got a new consent form without that language. And then surprise surprise, the dye did not travel properly so no sentinel nodes were identified. The surgeon did not see any enlarged nodes, and since she had not consented to ALND, he was done. I am glad your surgeon was enlightened, New, and did not put you at higher risk for lymphedema. Did this situation affect my relative’s treatment? Not too much. The Oncotype score for node neg and node pos was low, so no chemo. She might have had the option of skipping radiation after lumpectomy because other indicators were good, but chose to proceed as if node positive and do the radiation therapy followed by an aromatase inhibitor.

StartNew12212

Excellent! Thank you.

StartNew12212

Excellent, Pony! Thank you for all of this.

StartNew12212

I am so sorry, Mavericksmom! How absolutely awful.

Thank you for sharing your experience and thoughts. It is so helpful and is making me feel more at ease.

Beesie

Startnew, I understand your concern. There is no way to know if the node taken was the sentinel node, and with ITC in that one node taken, it's impossible to know if there might be more cancer in what is truly the sentinel node, if it's a different node than the one taken.

I think ShetlandPony's advice about the Oncotype test is excellent. The test is the same whether one is node negative or node positive, but the score is applied against a different recurrence risk scale for node negative vs. node positive. So looking at your score against both scales should be helpful in seeing if the treatment recommendation with regard to chemo would be different if you were node positive versus node negative.

Have you had an MRI through this process? While looking at a node under a microscope is obviously better, an MRI might spot a more significant nodal involvement, which if present would be important in a decision about radiation. Have you talked to a Medical Oncologist yet? An MO's perspective on this would be important and to me would hold more weight than what the surgeon says.

Mavericksmom, if your situation had happened to me, with the entire fat pad removed instead of just a few nodes, only to be told that all those removed nodes weren't checked very well, I would have gone ballistic. I would have taken it as far as I had to take it to get a more thorough assessment of the nodes removed, at least those in the first level. As a general rule I'm not a squeaky wheel person - I'm patient, I tend to follow the rules and I prefer to not make an unnecessary fuss - but when the situation warrants an escalation, I bring out the big guns and don't take "no" for an answer. Some things are just unacceptable and that's how I see what happened to you. Once the nodes are out, they're out but they d@#n well better be thoroughly analysed. Sorry, I'm angry just reading your story and can only imagine how I would react if my MO said that to me.

sbelizabeth

Initially, it was believed my cancer was a teeny little 0.2 cm lump that we could pop out like a tic-tac. Of course, there was that "umbrella" of peau d'orange textured, pink skin OVER the lump, but when the lump was discovered no one paid any attention to the skin.

Imagine our surprise that my surgeon couldn't locate a sentinel node. No uptake of either the dye or the radioactive tracer. She felt around in my armpit and found a node that was hard and enlarged, so she sent that one for frozen section. It was so chock-full of cancer it was unable to absorb any dye or tracer. So she did an ALND. Remember this was 2011, and things have changed since then. It used to be the standard of care.

At my appointment to remove the drains, the pathology report was back. Twenty-six nodes removed, six were malignant. I don't know how I managed to walk to my car and drive myself home. I was in such shock, everything looked hazy and I wasn't sure my legs would carry me.

Fast forward to today, after all the big guns of treatment and surgeries and drugs, almost ten years later, I'm fine. No lymphedema, although I'm fanatically careful with that arm.

StartNew, I understand what you're asking. It's so easy in all the phases of diagnosis and treatment to wonder "what if?" I really like Beesie's advice here. In my own situation, the umbrella of pink skin was first addressed by my brilliant oncologist, who insisted on a biopsy and discovered the lymphatic channels in the skin of my breast were full of tumor emboli. Talk to your oncologist, weigh the oncotype scores with him/her, and discuss your concerns with your cancer specialist.

ShetlandPony

That is a great suggestion Beesie makes to get an MRI to look at nodes. If any look suspicious maybe there could be a node biopsy. If anything is found, radiation could be used to treat the area. In many situations, treating with radiation rather than removing nodes is the direction of the latest thinking. Does your institution have a tumor board where surgeon, pathologist, medical oncologist, etc. meet together to discuss your case? I would certainly want that.

What a wild ride, sbelizabeth. I’m so glad you had an oncologist who was on the ball. Keep protecting that arm, and be well.

StartNew12212

Thank you, Beesie.

Yes, I had an MRI. Everything looked good aside from one lymph node. It was biopsied in three places and it came out clear. This was the node that my surgeon decided to remove and that ultimately showed ITC.

ETA: I see my oncologist again next Wed and also an oncologist for a second opinion the Monday after that!

ShetlandPony

Please keep us posted.

Beesie

Great that you've had an MRI and the only suspicious node was the one removed, and it only had ITC. Definitely a good sign.

Yes, let us know how your discussions go with the two MOs.

StartNew12212

Thank you, everyone, for sharing your thoughts and experiences. It is all very helpful! I will let you know what the MOs say.

StartNew12212

Forgot to update this:

MO Second opinion and opinion of radiation oncologist is that I need either radiation or an axillary dissection. I am opting for the former.

Certainly a frustrating situation....