› Forums › General Melanoma Community › my wle and slnb experience
- This topic has 19 replies, 5 voices, and was last updated 7 years, 8 months ago by
caman.
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- June 21, 2018 at 6:12 am
Hi, Not sure what happened, i will know more Monday with my follow up. But as of right now i feel someone up above is looking after me. My melanoma was at least 3.8mm at least stage 2A…T3 to T4. They canceled my SNLB before they cut me open because the pre screening indicated I didnt need a Sentinal Nobe Biospy. The surgeon performed the WLE and that was it.
Mirarcle as far as I know with the circumstances considering the size alone of the melanoma.
Did someone else here have the same experience??
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- June 21, 2018 at 1:05 pm
Hi Caman, but unless your surgeon is a psychic I am not sure how they can tell what is in your sentinel nodes. Standard of care for a primary melanoma of 3.8mm would be to take out the first couple of nodes and have a pathologist look at the tissue under high powered microscope. Here is a link to a specialist explaning best practices in treating primary tumor, if you go to 16:20 min mark it is specific to depth and procedure. Second link to new AJCC staging document. https://www.youtube.com/watch?v=e7X8v6HvfMg https://cancerstaging.org/CSE/Physician/Documents/Melanoma%202.2.18.pdf
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- June 21, 2018 at 1:05 pm
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- June 21, 2018 at 1:28 pm
Thank you for your reply. When he told me i was overwlemed with emotion so i wasnt able to ask the obvious questions. I will ask him monday with my follow up. But from what I know the tracer injected into the growth did not migrate to any of the sentinel nodes and the images were negative. This was told to me in the nuclear dept where the tracer and dye were injected. I believe that was the reason..any thoughts?
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- June 21, 2018 at 1:36 pm
That one is above my pay grade!!!
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- June 21, 2018 at 6:36 pm
So if the tracer didn't go anywhere, they weren't able to find the drainage path so there is no way to know which lymph node(s) were the sentinel ones. This does happen in a small percentage of cases. Did they offer any type of scans because the SLNB didn't happen?
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- June 21, 2018 at 8:01 pm
Thank you for your reply…I wish I knew more so i can share. I was too emotional and lost my composure when he told me. I did ask does this mean my lymph nodes were clear, he said yes for now for sure. The melanoma did not invade my lymph nodes. He told me I didnt even have to go thru process. I concluded no hot spots.
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- June 21, 2018 at 9:13 pm
So wait, I don't think the doctor can say that if you didn't have an actual biopsy. Just because they didn't find a drainage path doesn't mean it didn't actually drain to the lymph nodes. It could be the biopsy interrupted the drainage path (possible) or they just screwed up somehow. For him to say your lymph nodes are clear is assuming a lot if they weren't tested and with your depth of primary. If they did some type of scan, that's great for telling you there isn't any melanoma elsewhere that they can see, but scans only see melanoma tumors when it gets to a certain size (resolution depends on scan type). It doesn't say anything about individual cells that would be found inside a lymph node.
I think you need to ask more questions on your followup. If they were unable to do the SLNB, then what alternate follow-up plans do they have? You are stage II until proven otherwise, but you are still considered higher risk given the depth of your primary. Ask for copies of all the scan and surgery and biopsy reports so you can understand what was done and what was documented. You need to understand exactly what they did do and didn't do. Getting copies of the notes (which you are entitled to) is a way for the doc to actually explain it all again when you are a little more composed and can understand better the situation. I also suggest having someone else with you at appointments if you are easily flustered (or even if you aren't) for a second set of ears and perspective. If not, then at least take an audio recorder so you can listen later. I also suggest writing up all the questions you have now and handing that list to your doctor so he/she can see exactly what concerns you have. Then you can concentrate on the answers instead of forgetting what question you wanted to ask next.
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- June 22, 2018 at 2:08 am
I just spoke with him. There is No lymph node invasion and didnt need to remove the sentinel nobe to know. The radiologist confirmed it as well. As to exactly why and how I will get back to you after my visit with him on monday. He did say on very rare occasions you know without placing the Sentinel Nobe underneath the microscope.
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- June 22, 2018 at 12:55 pm
Wow, I would love to see some medical literature on that statement. I have never heard of not needing to take out sentinel node or not needing to look at them under a microscope for a melanoma with the depth that you have. I would be asking the medical team to follow up with ultra sound and close monitoring if they are not taking out sentinel nodes. A second opinion might be prudent at this point, just my 2 cents on the topic.
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- June 22, 2018 at 3:18 pm
You are getting excellent advice from all of the previous comments. As Janner says above, the biopsy may have interrupted the drainage path and they can't identify your sentinel nodes to evaluate them. I've read of that happening. However, you absolutely need to make sure you have an aggressive follow-up program of scans in place. Here is my example of why:
My wife had a primary on her leg very similar to yours. They did WLE, got clear margins. They need SLNB, nodes were clear. They did head to toe PET/CT, scans were all clear. Everything looked good. Six months later she started having vertigo and nausea, and was suddenly Stage IV with two brain mets. She's doing well now after craniotomy, gamma knife, and immunotherapy.
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- June 22, 2018 at 4:19 pm
Doragsda, I’m sorry about your wife – but so glad she’s doing well. Had they done a brain MRI along with PET and CT scans? Yesterday I had asked my husband’s study coordinator about frequency of PETs/MRIs. (My husband got a PET, CT and MRI when he was diagnosed; so far follow-ups in his study are CTs, including one yesterday, which was clear.)
Thanks.
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- June 22, 2018 at 4:31 pm
Thank you. No, they didn't do a MRI at the time. That has bothered me, as one of the tumors was 25mm in her cerebellum, and I wonder if it might have been detectable 6 months earlier if they had done the MRI. Her radiation oncologist who coordinated the gamma knife procedure told me that a PET just isn't that great for brain evaluation, and that he thought a MRI should have been done, but he said some places do them and some don't given her situation. She was treated at John Wayne initially, but we've moved to Angeles now.
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- June 22, 2018 at 5:01 pm
Thank you. It sounds like you’re getting excellent treatment, but I know sometimes it’s hard to not look back at the “if only’s.” And sometimes it’s valuable to do so, I guess, as in lesson learned, study, and push for what we need in the future.
My husband reminded me his MRI was for entry into his study. I wonder if his melanoma center would have done one as a baseline and periodically anyway. Question to ask in case he ever has to go off study (side effects).
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- June 22, 2018 at 4:12 pm
Caman, unless there was a misunderstanding about the tracer, your doctor’s response concerns me. There was a slight chance that scarring from removal of my husband’s mole could block the tracer’s path. Both the melanoma specialist and surgeon made it clear that if that occurred, information would be missing. Absense of information does not equate to a good result.
I’m just a patient’s wife who’s tried to get up to speed in a short time (though it feels like forever). But Ed and Janner have extensive knowledge and history with this extremely sneaky cancer. Is your doctor a melanoma specialist? If not, you might get a second opinion from one who is. But maybe communication wires got crossed; hopefully that’s all this is.
I agree with Janner to bring someone with you to take notes, or you could record appointments. My husband is the epitome of calm and has an excellent memory. But I typed notes at key appointments and afterwards we were both surprised at what either one of us missed. We also made a list of questions beforehand, though almost all were answered before we had to ask.
Hoping this is just a communications glitch – good luck –
Beth
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- June 23, 2018 at 4:01 am
Again I aprreciate all your concerns and sharing your experiences with me. I will write exactly what my nuclear report said. Again I will see my surgeon for the follow up and have all my questions ready to ask. But for now here is what the report said
Radionuclide lymph node drainage procedure by radiologist
Next section they describe the types isoptopes/dye used and dosage..then it goes on
History..Maglignant melanoma, right side of neck, 1 month old post ex
Findings: Imaging was made up to 65 mins following the injections. Activity is, of course, visable at the injection sites surrounding the excisional biopsy. There is no sign of any abnormal activity in the other visable areas of the head, neck, axillary regions, and chest bilaterally.
Impression: sentinel lymph node drainage procedure performed by radiologist without incident.
Thats it….any opinions?
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- June 26, 2018 at 7:04 am
It was shaved. Just got my follow up. My first pathology was wrong, as for as size. Not even close.
Im fortunate, My original 3.8mm Breslow size dropped to 2.5MM..Not too happy with that significant error. Lesson here, wait till after WLE for clearer and truer stats.
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