They couldn't identify the Sentinal Node!?
Has anybody else ever had or ever heard of a situation where the blue dye for a Sentinal Node Biospy doesn't find the Sentinal Node during a Lumpectomy???
I was diagnosed with IDC not quite a month ago. From the Core Biopsy, and I also had a MRI, they said it was 1.1 cm, grade 1, and er+, etc. They said most likely there was no node involvement and this was caught early, and that I wouldn't need Chemo, and I went ahead with a Lumpectomy last week.
After a few days, I called the nurse, and she said the node was clear, and she thinks the margins were clear but then she sounded unsure about the margins.
So today I had appointments with the surgeon, Oncologist, etc. The surgeon said that part of one of the margins was not clear, and so they will need to do another surgery. I had heard this could happen so I was OK. Then he tells me that they took a node, and it was clear, but that the blue dye did not identify any nodes, so he is not sure if it is the Sentinal Node, although it could be because it was the closest, so he will try again.
Also, I think the surgeon said that he will put the dye in during the surgery next week, which is different than how it was done last time, and if it doesn't bind to a node, then he will know/assume(?) he got the Sentinal Node last week. However, I think the Oncologist said that the surgeon will take some nodes and test them even if the dye doesn't identify the Sentinal Node, so I am not sure which one of these is correct. The Oncologist also said this situation is not common and the last one she had like this was a year ago.
Also, not only did my clear node turn into a possibly not clear node, but the pathology from the Lumpectomy was not as good as the one from the Core Biopsy. The lump (or whatever it is officially called) is now up from 1.1cm to at least 2, the grade is up from a 1 to a 2, and the stage may go up to stage 2, and they mentioned the possibility of Chemo now depending on the nodes and/or Onco Score.
Has anyone ever had it happen where the Sentinal Node was not found by the dye? Thoughts, info, etc would be greatly appreciated!
Thanks, 
Shira
Comments
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Shira--For my lumpectomy, I had both the blue dye and a radioactive tracer injected to find the sentinal nodes. When I asked why they are using two methods for the same purpose, the nurse said that studies have shown better results with both than with either one alone.
BTW, my pathology from the lumpectomy was also worse than from the biopsy. Although the tumor ended up being a little smaller (9mm from 1.2 cm), one out of three nodes came back with a micromet that was too small to show up on the MRI. My grade also went up from 1 to 2. Because of the micromet, chemo became a real possibility, but then my oncotype came back low so I went straight to radiation. I think in your case, whether or not they find the sentinal nodes, the oncotype score will be the deciding factor in your treatment choices. Best of luck to you.
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My surgeon warned me prior to my surgery that sometimes the injections don't travel to the nodes, and other times the injections do travel to the nodes but enter too many of the nodes. In both those cases, no sentinel node can be identified and more nodes need to be removed. He said that it doesn't happen often, but it can happen.
Most of the time, the dye and/or isotopes (I was injected with both) moves to the nodes and enters anywhere from 1 to as many as 4 or 5 nodes. All the nodes that "light up" with the dye and/or isotopes are considered sentinel nodes and all should be removed. This is why if no nodes 'light up" usually more than one would have to be removed since there is no way to know which node or nodes cancer cells would enter first if they were to travel from the breast to the lymph nodes.
In my case, I had 3 nodes light up so all 3 were considered sentinel nodes and all 3 were removed and checked.
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It happened to me. I had the isotope injections about 2 hours before my surgery. She injected the dye while I was under. My tumor was in the upper outer area of my left breast. The surgeon used two different probes, but could not find the sentinel node. She then went into my armpit and removed a group of lymph nodes. All were negative.
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Hi, thanks for the answers.
Now that I am learning more (from this forum, not from the docs
), I think I have a bad and uneccesary situation on my hands. They only used one method to try to find the Sentinel Node, so, less odds of finding it than if they used two. Then, they took one out, not knowing if it was the Sentinel Node, which I am pretty sure was a really bad idea. I insisted that I needed to know their plan before surgery, and it turns out that they were going to try again, but if no nodes turned blue, they would take up to 10 Axillary Nodes! However, since it is very possible that already took the Sentinel Node out, this is likely what would have happened! Plus, the sugeon had told me it would be an easy surgery (when he told me he'd only take nodes that turned blue) and that I could be back to work in two days (I didn't need narcotics for the first surgery), which I don't think would have been the case if he had taken 10 Axillary Nodes!
I switched doctors/hospitals. Did not like that they didn't think it was important to tell me the plan, plus last time they didn't tell me anything needing to be careful with my arm or to move it around to avoid LE (I babied it to take care of the stitches).
Snorkler, the new hospital did mentioned they could do the Onco Type even without knowing the node status, and hopefully they can handle this situation differently. It's probably better that your hospital used two methods atonce. It might be extra blue dye, but that seems better than the alternative. What is a micromet?
Nevada, did they use two methods on you as well, or just one (I am confused as to exactly what they do for each)? I guess taking a couple and not needing to go back is better than taking 1 and going through another surgery for 10!
Bessie, my docs never said a word to me about the possibility of not finding one. I wish they had, maybe I would have had the presence of mind to ask what they would do if that happened!
Thanks,
Shira
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Hi,
I had a lumpectomy on August 19 with sentinal node biopsy. I had radioactive dye injected in two spots around my nipples. During surgery the surgeon could not find the senintal node so he told my hubby he had to manipulate alot of tissue and did finally find two, but took out a total of 9 nodes trying to find them. I noticed on the Path report the sentinal nodes were just gray and had not turned blue. All 9 were clear/
I also did not have alot of instructions after I was released from the hospital. I learned far more from reading on here than from my doctor. I am not sure why they do not think it necessary to give us restrictions and what we should and shouldnt do.
I think its a good deal you switched hospitals/doctors. I hope all goes well for you and just remember to ask lots of questions. I have learned to do this and its been better since.
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Hi Ndgirl, wow! Do you mean he had to get 7 out first and then he found the two? Did you have a longer recovery than you expected? Are doing ok now?
It is crazy that we have to learn things on our own, or that they don't think things are important enough to tell us!
I didn't think about some nodes blocking the Sentinel Nodes. Maybe he didn't get the right node on me afterall. Odd yours were gray, but with 9 and a color change I am guessing that is a lot of proof!
I wonder which dye method works better. I had the kind where the dye goes in a couple of hours before and they do some kind of scan (and actually, he made a worried face when looking at something right before the surgery, I asked him what was wrong and be said "nothing", hmmmm..
Anyway, thanks for sharing.
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Hi,
He told my hubby he had taken 6 nodes and had found the sentinal node after digging. I saw on the path report he had taken 9 of which two were sentinal nodes. Hubby said it appears they were much deeper than he thought so he had to dig. I am happy all 9 were negative but wow I was sore. I was bruised really bad and could not wear a bra for a week as I didnt want anything to touch my side.
I did have the radioactive dye put in me about an hour before surgery and I have a feeling from all the spots on my breast that more had been put in during. I also peed blue for a week. Especially in the mornings- no one told me this would happen so it was a shock to see blue pee!!
I dont understand either why we are not giving more instructions. I also was not happy he took so many nodes because now my ON says I have to be careful not to have blood draws or blood pressures on that arm. My surgeon says that is an "old wives" tale and I will be fine. Who does a person believe? I chose to be safe and believe the ON.
Good luck with everything.
PS glad you started this thread as I didnt know others had the same problem.
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Shira- good move on the switch of hospitals. The first one sounded a bit crazy. Did you have the Oncotype? I too was stage 1 grade 1 before surgery and then was stage 2 grade 2 after... Margins a little suspect. I had a positive node but still got a lot of no's on chemo (Oncotype 17) so I opted out. I see you are in Mass. Your first surgeon sounds like mine!
Did you get a second opinion? Lots of great BC specialists in Boston, -
Micromet is a small metastasis. Mine was 1.5mm, but it has to be at least 2mm in order to count as a positive node. So my nodes were clinically negative even though there was a small amount of cancer in one of them. That's why my MO really wanted to do the oncotype test to see if I should do chemo or not. Like Lenn13ka, my score came back as 17 so I didn't do it.
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Quick update on the not found Sentinel Node situation. I got a second opinion from a hospital that specializes in cancer. The new surgeon said that the incision was a few mm's higher than it should have been and that may be why they didn't find the Sentinel Nodes.
Unfortunately the new surgeon also told me that you only get one try for identifying Sentinel Nodes. Once a surgeon goes in to try to find them, the nodes are disrupted and can move around. So, some may turn blue but might not be the Sentinel Nodes (blue dye identifies by the location of the nodes in relation to the lymph channels).
So, only choice to determine the node status is now an Axillary Node Dissection!!
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wow Shira, probably expains why my surgeon had such a hard time to find my sentinal nodes and ended up removing a big chunk out of me with a group of nodes attached and the sentinal node "suddenly appeared" I had 9 total nodes removed all negative, but sure made for a sore arm pitt.
I also did not know that they could not do this again? Does that mean ever? so if we find breast cancer back in that same breast they won't be able to just find the sentinals? Kind of a scarey thought.
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Hi ladies. I had both nuclear and blue dye to identify my sentinel nodes. They had to wait and kept checking to see if the radioactive stuff was moving. Only then would they take me to surgery.
When they take a lot of nodes or do a ALND, yes there should be precautions for LE. Lymphedema is no joke. If they want to do the ALND, there is research that radiation to the nodes is as good as removal. You might want to look into that. There is a very good thread on here for LE. Perhaps your questions may be answered in more depth from people with way more knowledge than I have. Much love and good luck with your surgeries (sx) and treatments(tx) -
Ndggrl, That's what I think they're going to do at my second try, take a group at once. She called it a "fat pack", probably how she got me to agree to it (taking out a fat pack sounds a lot better than Axillary Node Dissection!). I don't know if they wouldn't be able to do a Sentinel Node removal/search down the line. She told me just once, but possibly years later could be different as maybe the nodes have been in place a while (if we even have enough left!).
Moonflower, believe me, I am very worried about potential issues of taking more nodes. I actually went to the appt with no intention of letting anyone do an Axillary Node Dissection, but I thought they could try again for the Sentinel. The problem with treating nodes via Radiation, is that then they would never know my node status, which apparently is the most important puzzle piece. Also, isn't there an LE risk with radiation as well?
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Ndggrl, That's what I think they're going to do at my second try, take a group at once. She called it a "fat pack", probably how she got me to agree to it (taking out a fat pack sounds a lot better than Axillary Node Dissection!). I don't know if they wouldn't be able to do a Sentinel Node removal/search down the line. She told me just once, but possibly years later could be different as maybe the nodes have been in place a while (if we even have enough left!).
Moonflower, believe me, I am very worried about potential issues of taking more nodes. I actually went to the appt with no intention of letting anyone do an Axillary Node Dissection, but I thought they could try again for the Sentinel. The problem with treating nodes via Radiation, is that then they would never know my node status, which apparently is the most important puzzle piece. Also, isn't there an LE risk with radiation as well?
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Hi Shira,
Aweed, I didnt know there was a name for what they did to me. It makes sence since that is what they basically do. There was 7 nodes in that pack and then it opened it up to find two sentinal nodes after that. I am a month out from surgery and doing great. I was sore in the arm pitt for awhile and black and blue- but with ice and advil I went back to work in 10 days and it was not a problem. It forced me to use my arm which was a good thing for me.
Good luck..
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I also ran into the dye not lighting up my sentinel nodes during surgery. I had went into surgery with Grade 1 came out as Grade II as tumors were bigger than expected and even though an MRI showed lumph nodes not involved 1 out of 3 came out positive (4.0mm). I now have to go for a Bone Scan and Cat Scan to see if spread, am still waiting on the DX score, the waiting is driving me crazy. Am to meet with Oncologist for 1st time this coming Friday.
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Thanks Ndggrl. That makes me feel a little less worried. This surgeon is a breast cancer surgeon and said she's done many, so I feel like I am in good hands this time.
I guess your doc did the right thing by taking out what they had to in one surgery, although it seems like we should know what could happen beforehand.
I'll have two scars under my arm afterwards, although at least I didn't go back and try again with the first surgeon. Then I'd have two surgeries, the wrong nodes out, and either no answers or I'd think my nodes were clear which may or may not have been true.
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Hi Marnie, sounds like we're in somewhat similar situations! Waiting for results is very stressful!
If your tumors were bigger, that would change the stage though not the grade (I only know because my grade went up and stage will go up if they find .1 mm or more cancer cells when they go back for clean margins (2.0 or less is the cut off for being able to be in stage 1).
So what happened with your lymph node surgery ? They took some even though none turned blue?
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Hello
I had sentinel node injection tracer thing prior to my double mastectomy and it didn't light up. So surgeon took a pack of nodes 17 total and 8 lit up. 6 macro mets and 2 micromets. MRI prior to surgery showed no lymphs positive and ultrasound showed no lymphs positive. I was pretty upset after meeting with surgeon to get final pathology but I. Hindsight , I am so glad she got the nodes out!!!!!! Also , prior to surgery I was a stage 2 and came out stage 3 as my tumor was bigger than they thought too.
It happens a lot ! That's why final staging doesn't happen until after surgery. Sounds like you took the bull by the horns by seeking a second opinion and now are working towards a plan.
I am 2 years out -and doing well. I recall being where you were and being soooo scared! You will get through it.... Hang in there -
Thanks luckpenny! I'm feeling a little better about the whole thing, or at least I have resigned myself to the fact that it is the unfortunate next step.
It also helps to hear from people who had many nodes out and are ok, not to minimize the risks or what they can be like, so thanks.
The good news is that I'll be in better hands, and at least I didn't have a second surgery with the first surgeon. Even if lymph nodes turned blue, they wouldn't have been able to be sure they were Sentinel Nodes, and he either didn't tell me that or he didn't know.
The bad news is that I didn't research anything about Sentinel Node biopsies before I had it done, and I usually try to understand everything! If i had even read the info on this site, questions to ask the doctor, i might have switched to a breast oncologist surgeon like i have now, as i am not sure the first surgeon has done many and that was one of the questions (did I mention the new surgeon hinted that the incision from the first surgery wasn't in the right spot?).
Anyway, surgery next week....
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Good luck next week Shira. Glad to hear you got a good surgeon lined up. Keep us posted.
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Hi Lenn13ka,
Just wanted to update, thanks. I had the 2nd surgery, and so far so good, and actually, I feel better (physically) after this surgery than I did after the 1st, and I think this surgeon did a better job. The bad news is that they took 15 nodes, but I just found out all were clear so that is the good news. Margins clear too.
I am pretty sure I'll get my Oncotype results tomorrow (have a follow up appt). Since we're both in Mass. If you feel like sharing which hospital your surgeon is at that sounds like mine, feel free to pm me (or I can tell you where mine was). Thanks and I hope you are doing well.
Shira -
Shira, Glad to hear your 2nd surgery went well. Also very happy all the nodes were clear.. -
Shira - good news on the surgery. I will pm you about Dr.s.
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