Anyone else they didn't find your nodes/recurrence years later
My first cancer in 2014 was inSITU so no nodes even checked there stage 0. My 2nd in Feb 2019 was as of now Stage 1 (haven't gotten Onco back) Grade 3 IDC....
So they not only could not find my nodes but they said the dye couldn't even find them. My report actually said "had a clear view of the axilla for sentinel node procedure. Used the Neoprobe, but we were not able to identify any rradioactivity nor blue afferents within the axilla. We palpated one lymph node but there were no suspicious lymph nodes nor radioactive or blue nodes. This palpable lymph node was excised and sent to Pathology for FROZEN sectioning." Then it said "Pathology called into op room to indicate that the sentinel node was negative".
So this was confusing to me because she verbally told me she couldn't find them but then it says it was sent off and found to be negative. Strange.
Has anyone had this happen and has anyone then had a recurrence?
Comments
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My reading is that they were not able to find sentinel lymph nodes, but through touch were able to identify a lymph node (that may or may not be sentinel) and sent it fo pathology.
For a question like this, you should feel very empowered to call your surgeon's office and ask them to explain it to you.
My concern is that essentially they just a pathologized a random lymph node. So it's better that it's negative than positive. But not as reassuring as an actual sentinel lymph node biopsy would be.
I guess that you should get more medical advice, based on your specific case, whether the doctors feel this is better treated as thought it is lymph node negative cancer (because of other characteristics of your cancer and no actual evidence of lymph node cancer was found) or as thought it is lymph node positive cancer (because of other characteristics of your case and the lack of evidence to exclude cancer in the lymph nodes, and they want to be extra prudent) . They might want to get the oncotype results back to help with that decision.
But I'm a lay person and this is just me guessing. Hang in there and let us now what they say?
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After breast surgery of any kind, the lymphatic system is disrupted, making it challenging to find the sentinel node. With my recurrence, they were not going to even look for it, but I had a second opinion consult at Mayo where the surgeon there was doing research on using the dye and radioactive injection, and they were having about 50% success, which is greater than previously thought by surgeons other places (who usually did not even try). I could be off on her percentage; my notes are not in front of me. Based on that consult, my local doc (I went local due to no family in the area to help if I traveled.....and that the local surgeon knew exactly where my cancer was) did try to find the sentinel node. He was not able to, but in the process of trying, he did find another tumor which had not shown up on ultrasound or MRI. So...... it is worth them trying to find the sentinel node, but because of previous disruption, they just may not be successful.
It looks like they took out the suspicious node, and it was negative; it just may not have been the "sentinel" node. The path lab labeled it negative. It was called the sentinel node most likely, because that's what's usually sent. You should definitely clarify with your surgeon. Also, make sure they've done imaging to take a look at the nodes, even though it is not perfect.
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KBeee yes I go to her tomorrow. I am going to ask about this again. I know she mentioned that she would like me to have an ultrasound of that area (where your nodes would be) as follow up each year but I am going to ask again.
Thanks
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I did have the dye injections before surgery to ID sentinel node. It was found easily and was negative with good margins around lumpectomy site in 2012. My lymph nodes everywhere appear negative in all scans since early 2018 but I'm metastatic in lung and bones. No breast recurrence. Go figure. I agree each case can have anomalies that are frustrating and hard to put in a neat box. Do ask to help resolve as many questions as possible but some can never be known. Hugs and peace for your day
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I have never heard of that myself, but I was courious,did you ever develop a knot or swelling under your armpit after surgery? Apparently I have fluid retaining under my arm but they said it’s not lymphedema .
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Donna, it sounds like a seroma
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Dear Donna2019,
Welcome to the BCO community. We are sorry for what you are going through but glad that you reached out to our members. We hope that you will find support and helpful information here as shared by the experiences of others. Please let us know if we can be of help in navigating your way around the boards. We hope to see you around.
The Mods
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I already know that I have a sernoma they drained my breast last week and got 30ml...and they are draining it tomorrow just to kind of take care of it before I have to fly back to hawaii (home, I am in Cali for my surgery and have been here 2 months). So yea I do have fluid in the "breast" area... it definitely looks like less since they drained it last week and since I started wearing the compression top again so that is a good sign. If I go by the fold toward my underarm but not in the actual underarm I can definitely feel a little tiny bead which I know to be or believe to be a lymph node because I have felt them in my neck years ago when I was sick once. I am going to ask her about that tomorrow.
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So does having the sernoma cause a lymph node to swell? Because now I did like a breast exam lol (no breasts) but above it heading toward the under arm and I can feel a node...which I have never felt before???? It doesn't feel really big but like a little bead...now I am worried I go to doctor tomorrow but I wonder if that is normal on the side where you have sernoma?
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The day before my surgery I had the radioactive dye injected and the tech made Xs on my skin with a Sharpie where I 'lit up'. The following day for the lumpectomy the surgeon injected the green dye to locate the nodes. When she spoke to me after the surgery, she said that nodes are normally in a known location PLUS I had Sharpie Xs on my armpit, yet nothing showed up that was green and looked like a node. So she cut deeper looking for a node. And cut deeper still. She found ONE node that she felt was indeed sentinel, but was sure pathology would be unhappy with only one node, 3 or 4 being the norm. She was not happy but said "I quit cutting when cutting any deeper was a really bad idea." (I have some pretty obnoxious lymphedema for having one, lousy node removed!).
My Onco score was 11. I was initially jubilant. But considering that the first pathology report said grade 1, stage 1, and the second upgraded me to a stage 2, grade 2, and only one node was sent off .... I feel uncertain all the time. I did not chemo. I am on tamoxifen. When I read Joe777 and getting mets with her low Oncoscore, it scares the hell out of me. So yes, some of us seems to have a shortage of nodes or they have gone into hiding. But I only had one to send off and it showed no evidence of disease.
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This sounds like what happened with my surgery, too. The day of surgery I had the blue dye injections into the nipple area (which was the worst experience of the whole surgery). I'm surprised they don't do that while you're under anesthesia. After surgery, the surgeon said the dye didn't really flow so she had to guess. She's fairly certain she got the sentinel node but couldn't find any others. She tried digging around so it's no wonder my armpit is so sore. (Today is 4 weeks post-op.) She told me to massage the armpit to prevent scar tissue from getting tight.
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runor - where does Joe777 say her Oncotype score was low? Its not a foolproof system anyway but my score was also 11. I had IDC Stage 1b, Grade 1 and will be 8 years out this August God willing.
Diane
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Edwards, that is a good question. I looked back over the posts and can't find where Joe777 says she had a low Oncoscore. I wonder what the heck I'm talking about? Maybe I read it in another thread? God - I'm losing my mind! I think maybe I was referring to her saying her nodes all looked clear in the scans yet she developed mets anyway. I think I was meaning that I worry with only one node being found and taken, there is a chance that things are worse than I was lead to believe, because some of the evidence (more nodes) were left behind. I have no symptoms to prove this, just gnawing doubts that taking only one node was not enough to get a clear picture of the situation. But you're right, can't see where she mentions her Oncoscore.
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https://community.breastcancer.org/forum/62/topics/870892?page=1
Runor, you're not going crazy. I only remember this thread because it intrigued me and Joe777 lives in the Houston area.
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It's important to remember that a low Oncotype score does not mean that someone will not develop mets. A low Oncotype score means that the risk to develop mets is relatively low, but it is never zero.
And when no chemo is recommended, it is based on a benefit vs. risk assessment, with the determination being that the potential of serious side effects from chemo is greater than the reduction in metastatic risk that chemo would provide.
A numerical example. Someone has an Oncotype score of 15 that translates to a 5% 10-year metastatic recurrence risk (assuming the patient takes endocrine therapy; I looked at the TAILORx results to get a score and approximate recurrence risk). If given, chemo would be able to reduce the metastatic risk to 3.75% - 4%, a 1.00 to 1.25 point benefit. But the recommendation is "no chemo" because chemo confers a greater than 1.25% risk of serious side effects, so the net health benefit is negligible.
In that example, 5% is a very much considered to be low risk, nevertheless it still means that out of every 100 women with that score/risk level, 5 will eventually develop mets. Even if all 100 women were to take chemo, approx. 4 would still develop mets, and 1 or 2 would also experience very serious side effects from the chemo. And that's why chemo isn't recommended for those who have low Oncotype scores / low metastatic recurrence risk.
Nicole, sorry for taking the discussion temporarily off track.
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No worries Bessie...I always love reading what you say anyway...lol
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Nicole - I'm sorry you had that happen during your LNB. This is the first I have heard of the dye not finding paths and nodes so thank you for posting, as I've learned something else today that is important IMO. How did your appt go with your MO? Did you get some clarification? How are you feeling after the appt? Hope your dr was able to give you some peace of mind.
Bessie - Thank you for sharing that information. Can I ask where on an Oncotype report can we find METs risk? I'm having trouble following the math/explanation. Brain fog day. I would really like to look at my numbers and figure that one out. My MO had said my METs/Recurrence rate w/o Tamoxifen was between 28-30%. Thanks in advance.
And Runor - You're not the only one that gets scared seeing a low Onco and then METs/recurrence or tumors missed (like with KBeee) on imaging but found during surgery. I often worry that choosing to skip Chemo & 0/3 nodes and drs wouldn't do a PET scan that something was missed and will bite me at some point. Le Sigh.
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Spoonie...most of you in this thread probably don't know..but I was actually not Stage 1 this time I was Stage 2 and now I am Stage 4 Mets to Liver. Yup...they found it because I said my hip has been hurting for about 5 months...so they ordered a bone scan and CT of chest and abdomen. Thank you LORD JESUS that I happen to mention about my hip otherwise I would have left California and been living my life back in Hawaii having had NO IDEA that I had mets in my liver. All because they do not SCAN when you have a reccurence unless you say something is hurting you....
I am in NY now Long Island with family. I got my first treatment yesterday at MSK but decided today to leave them (too much to type here) and I am going with Columbia - which really was my first choice anyway. Will see them on Monday.
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just popped in and picked up y'all wondering about my my ono score. 15- sorry I'm just now getting back to the thread
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Nicole, glad to hear that you will be with your first choice.
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NicoleRod, I'm sorry to hear this news, but glad you can be near family and go to the hospital of your choice. So glad you helped them catch this before you went back home.
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Spoonie, here are two versions of the Oncotype report that I found on-line. I've put in a red arrow to highlight the metastatic risk figures on each chart.
Version 1:
Version 2:
And here is a chart from the Appendix of the TAILORx study that shows their findings on metastatic recurrence risk by Oncotype score, for those who take endocrine therapy only versus those who take chemo + endocrine therapy. The top chart is for those age 50 and under, and the bottom chart is for those over age 50. The solid red line is endocrine therapy only and the solid blue line is chemo + endocrine therapy. The red line is only shown up to a score of 25 because those running the TAILORx trial made the decision that everyone with a score of 26 and higher would get chemo in addition to endocrine therapy. So there are no results available above a 25 score for endocrine therapy only.
One thing to be aware of is that some Oncologists have an additional computer program from Genomic Health that further refines the metastatic risk estimate based on the Oncotype score combined with the age of the patient, the size of the tumor and the grade of the tumor. This is called the Oncotype RSPC (Recurrence Score - Pathology Clinical). This tool might provide either a lower or higher recurrence risk estimate than the standard Oncotype report for those with favorable (older, small tumor, lower grade) or unfavourable (younger, larger tumor, grade 3) characteristics, and this could affect the chemo vs. no chemo decision, as it has for a few people on this site who've mentioned their MOs using this tool.
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Nicole - I'm really sorry that they didn't order a PET scan in the beginning or when your recurrence was found. It's maddening. I will never understand why that's not the standard of care. I'm sorry but f*** costs. I'd rather KNOW and get a head start on treating rather than find it when things are already advancing and I have less options. Wishing you luck with Columbia on Monday. Hugs.
Thank you for that Bessie. Appreciate it. Guess no one told me that METs was the same as Distant Recurrence, but now that I'm reading it, I'm like "uhhh duhh". Sometimes I miss the forest for the trees. I'm going to write down Genomic Health to ask about it with my MO in May. I'd like to know as much as possible.
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Thank you Beesie - I realize that the risk of mets will never be zero. I feel uneasy often about my upgraded pathology report (from grade 1 stage 1 to grade 2 stage 2) and that only one node was found. My surgeon seemed optimistic. My Oncologist as well. I'm a bit more skeptical. (Oncoscore 11)
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Bessie, thank you for your copies of the oncotype scoring. My dilemma is that my oncologist ordered mine with no nodes instead of micromets. (Was originally isolated tumor cells, but then told micromets.) Do you think it is worth retesting at this point? My BCI came back high and too late for chemo, but now I am curious how my score might be different with the micromets.
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runor, I certainly understand your concern. And I understand questioning whether you should be doing more. But with an Oncotype score of 11, as my earlier posts explained, there would be no benefit to chemo and you might actually put yourself at greater health risk if you were to have chemo. I don't know enough about how the Oncotype test works to know if there would have been any difference in your score if you'd had more nodes checked and 1 or 2 had been positive. I don't think so, however. Since the Oncotype test analyses the genes within the tumor (and does not do an analysis on the nodes) and the tumor would be the same regardless of the nodal status, I doubt that there would have been any difference in the score or the recommendation that chemo would not be beneficial to you. Your tumor is genetically favorable and low risk and that wouldn't change even if your nodal status changed.
Given your 11 score and your questions about nodal status, this meta-analysis might be reassuring to you:
Clinical relevance of the 21-gene Recurrence Score® assay in treatment decisions for patients with node-positive breast cancer in the genomic era
The conclusion: "the evidence we have summarized is consistent across retrospective-prospective, prospective, and registry studies and shows that patients with N+ breast cancer and a low number of positive nodes who received hormonal therapy but no adjuvant chemotherapy have highly favorable outcomes if they also have low RS results."
Pereginelady, as I mentioned to runor, since the Oncotype test analyses the 21 genes in the tumor and does not look at the nodes, I doubt that your score would have been different - but I don't know this for sure. However, there is a different scale for Oncotype scores for those who are node positive vs. those who are node negative. So the same score would translate to a different recurrence risk. That said, I believe that with a 12 score, chemo would not be recommended even for those who are node positive. Have you talked to your MO about this? It would be interesting to hear what he or she has to say.
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Thanks, Beesie. The reason I asked is that I noticed the difference in the recurrence risk between the two score reports is 5%. It is a moot point now, but interesting how much they have improved their reports in the 4 years since I was diagnosed. I am looking to change my oncologist this summer to someone who is more up to date and will ask then. Thanks for your always informative, clarifying posts!
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