› Forums › General Melanoma Community › Failed Sentinel Lymph Node Biopsy
- This topic has 14 replies, 8 voices, and was last updated 5 years, 3 months ago by
Bubbles.
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- October 8, 2018 at 6:25 pm
Hi All,
I was diagnosed stage 1b a couple of months ago. I was 1.9mm non ulcerated with a Clark 3 and Mitiotic rate of 6. I went to the dermatologist who decided to do my WLE on the spot. Before I left he suggested I see an oncologist so I made an appointment. The oncologist said the results from the WLE came back clean however based on the stage and mitiotic rate a SLNB would be necessary to determine if it has spread. I got a surgeon recommended and booked the procedure. When I was coming around from anesthesia the surgeon told me nothing lit up and he wasn’t able to get a lymph node. I only write this because after making an appointment with my oncologist to see what happens now I went home and researched online why they couldn’t get one and what that means. I found nothing. I couldn’t believe it was only me that had this issue. After seeing my oncologist it seems that sometimes when they do the WLE first it can change the flow or mapping to the lymph node and make it so the radioactive dye doesn’t get there. Hope this helps someone. Next order for me is a PET scan which Im hoping will help me determine if I’m stage 3 or clean.
Steve
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- October 8, 2018 at 6:40 pm
This is scary for me….I had a WLE in Aug. The Tumor Board at my hospital and my doctor have decided while they got clean margins the first time around, they need another tissue sample in the same area due to how deep the surgeon had to go the first time (down to muscle) and because of the Clark Level (mine was 1.75mm, Clark Level 4, mitotic rate 3) they want to do a sentinel node biopsy at that time as well. I have heard recently because the WLE was done once already, it could change the mapping to the nodes. My doctor did say if the dye didn't reach the nodes, they inject another dye in the exact area the nodes should be….Please let me know what you find out. I am not scheduled for mine until November at this point….
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- October 9, 2018 at 6:12 pm
Good luck with your appointment!!
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- October 8, 2018 at 7:22 pm
The best results of a SLNB is before the WLE is done. Not sure why they would have done it in this order. The WLB can defiantly disrupt the flow of lymph nodes once it is done. I would make sure you are seeing a Melanoma specialist from this point on. Hopefully your PET will come back clear but I would still be inclined to at least talk with a melanoma oncologist about follow up scans for the future.
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- October 8, 2018 at 8:14 pm
Hi Steve, no sense in kicking a horse when it is down but that derm of yours needs a update coarse on melanoma and fast. I don't think a Pet- scan would pick up micro mets in lymph nodes but being closely followed by oncologist in the future would be important, I would push for ultrasound of nodal basins to check for progression. what part of your anatomy was your original mole removed from???
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- October 8, 2018 at 11:21 pm
This originated basically where that bone sticks out at the top of your spine on the back of the neck. Looking back at this I am also fairly surprised that the dermatologist didn’t slow down and follow the normal course of action. When my GP called to tell me the biopsy was melanoma she said it was in situ which made me feel better until a little research told me that couldn’t be true. It is possible the dermatologist didn’t really read it and just took her word for it. Either way I won’t me going back. My Oncologist said that the PET could be unreliable but he has referred me to MD Anderson to see about any trials and I will use that to get a second opinion on what’s next.
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- October 9, 2018 at 1:15 am
WLE first is a no-no. Even if you didn't have that done first, there are a small percentage of folks that have the same SLNB results although it is more common in areas where procedures have been done.
PET scan – go for it but it likely won't show much in the way of helpful info unless you have "macro" nodes. Microscopic won't show. PET scans also have a high occurrence of false positives since they pick up metabolic activity like inflammation, arthritis, and other things which also have metabolic activity. I agree with the poster who suggested periodic ultrasound checks. But going to MD Anderson where they have a clue how to treat melanoma is a good move.
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- October 9, 2018 at 5:25 pm
Hello Steve & welcome to MRF! your in good, warm & sometimes “shakey” hands (due to meds) ya well, little Hiccups with “protocols” will happen..
God dont get me started with Lymphnode mapping & that Devilish Dye Juice they inject to map! My first of two was TERRIBLE for me, just above my left knee and right into the Ulcerated tumor they where to take out that morning! They where to also biopsy my groins Lymphnodes emmiedatly after the surgery so they needed the mapping done beforehand..That dye FREAKIN BURNED LIKE HELL FIRE!..ill NEVER forget..thanx for reminding me Steve, good job 🙂 -
- October 21, 2018 at 7:44 pm
Update:
So I had my appointment at MD Anderson. Again the point was reinforced that the WLE should not be done before the SLNB. However Dr. Ross believed that he would be able to get a lymph node to light up. Along with various other tests they sent me down for a Lymposcintigaphy which is basically the dye and mapping part of the SLNB. The lymph nodes on both sides of my neck lit up and although they couldn't do the SLNB while I was there I am scheduled to go back on the 31st to have it done which means I should have my results by Monday the 5th at the latest.
SaraZO I believe the inefficiency was with my surgeon. I think if you have someone that has a better understanding of this they should be able to find one. In fact my time at MD helps really understand how dangerously under qualified most of the people I have seen about this have been so far. I am now a big fan of mapping it before going under for the full surgery.
Melanoma Mike That dye can be brutal. I remember waking up from the first SLNB pretty out of it from the anesthesia with the surgeon telling me he didn't cut into me. I started to wonder shortly after why my neck hurt so much if they didn't cut me. I the nurse explained the dye can burn and burn it did for about 2 days. I had readied myself for the same thing for 2 days following the lymphoscinigraphy but apparently it is a different dye and although it burns going in the pain only lasts 2 seconds and is gone for good after.
Steve
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- November 14, 2018 at 6:02 pm
Although I don't believe anyone is still reading this I will continue to update as I go. Had my SLNB done on the 31st of October. They found melanoma in the lymph nodes so I am now at stage 3b. Not sure how I feel yet I think I'm still in shock. I head back to MDA on the 27th where I will get some tests and discuss what treatment we are going to do. The person who called mentioned the treatments will range from Immunotherapy, to removing all of the lymph nodes to nothing(althogh I'm not sure the value of this option). I have a 15 month old son and wife who depend on me so my intention is to go with whatever the strongest most effective treatment is regardless of how it makes me feel or look.
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- January 16, 2019 at 8:12 pm
Went back to MDA and they did a full body CT and Brain MRI. Both negative so at this point I am NED. The surgeon didn't feel a CLND was necessary and we are going with Opdivo Immunotherapy once a month for 1 year with scans every three months.
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- January 22, 2019 at 2:56 pm
Hey Steve,
Sorry that your node was positive, but thankful that you at least learned that sooner rather than later. You now seem to be on track with state of the art melanoma care. Your last advice was sound, we have learned that a CLND is NOT needed. It is excellent that you are getting adjuvant care with Opdivo! We have fought long and hard for folks to have access to that, so I am very glad that you do. Many here are currently undergoing, or have had, that treatment. I was in your shoes in 2003, but with no treatment options other than cut it out and watch and wait. I progressed to Stage IV in 2010 with brain and lung mets, had SRS to brain, surgery to lung, and Opdivo trial for 2 1/2 years (last dose in June of 2013). However, there are three bits of good news there: 1. Ratties in my trial were among the first to prove the value of adjuvant care. 2. I remain NED for melanoma 9 years later with no additional treatment. 3. It is unlikely that you will follow in my path of progressing since you are being treated effectively now. SO…..melanoma sucks! But, YAY, YAY, and YAY!!! You should do very well. Hang in there. I wish you my best. celeste
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