› Forums › General Melanoma Community › Slnb question
- This topic has 18 replies, 4 voices, and was last updated 9 years, 7 months ago by
geriakt.
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- January 15, 2016 at 8:14 am
I had a large melanoma lesion on the back of my neck (it's the first picture in the melanoma picture gallery). I was diagnosed through a small shave biopsy (maybe 20% of the surface. Barely a scratch). The pathology report showed no clear margins. Depth of biopsy was only .66mm deep. So my tumor was at least that deep. No mitosis, nothing remarkable on the biopsy other than ssm at least .66mm with signs of regression present at base. Again this was only a small spot sampled on a large (3" x 1.5") lesion. However all the data my pathologist has go go on put me at pt1a. I was referred to a head and neck surgical oncologist. She scheduled my wle and decided we would go ahead with a slnb due to the incomplete staging from partial biopsy.
I had my surgery yesterday. I look like I was attacked by a shark. Again this was a large lesion. The surgeon cut the back of my neck ear to ear and used a flap to close the wound so I have this nasty "U" shaped scar under the line from ear to ear.. But that's another story.
Here's my issue/question. After they injected the radioactive tracer I was told to move around/exercise for 30 min followed by 30 min laying in that nuecular imaging machine (don't know what it's called). I was told the dye wasn't draining from the injection site. I was given another shot and made to rub the area for 30 min. Back into the machine. Still not draining (nurses were accusing me of not exercising or rubbing correctly). Now I was made to walk the hall of the hospital with squishy balls in my hands and asked to exercise my arms and hands while I walked back and forth. I was getting quite the amused audience. So yeah I felt like a fool. Now back in the nuecular lab I was told the Dr wasn't allowing me to leave there until they found the right nodes. Back into the machine. Still not draining from injection site. Now they change their mind and tell me the Dr will just use a handheld scanner in the or to find the node. After surgery my Dr said she couldn't positively id any sentinel nodes. She did mention that there was some tissue showing increased radiation (which she did cut out ) however she wasn't even sure it was a lymph node let alone the sentinel node.
I asked if that would impact her ability to correctly stage me. Remember the inadequate initial biopsy already made that a challenge. I was told she could clinically stage me even without the sentinel lymph node results.
How? Isn't the definition of stage III lymph node involvement? I asked if they're would be any follow up imaging (pet-mri-ct) performed. My Dr said they don't do that. If she was suspicious enough she would use a sonogram to look for enlarged lymph nodes.
Important information: I'm also a c.o.p.d patient and on a high daily long term dose of prednisone. This is the same drug used to treat lymphoma because it reduces swelling in the nodes. Knowing this how effective could a sonogram even be?
Is this a problem or am I worried for nothing? Anyone else experience a failed slnb and if so how did your Dr's handle it. Should I run like mad to another Dr? I'm limited on what my insurance will cover and I already chose what should have been the absolute best option available to me. I'm being treated at fox chase cancer center in Philadelphia PA.
Oh p.s.
Immediately adjacent to the scar is a spot (lump, bump) that has been rapidly growing and evolving that I already suspect could be modular melanoma. Of course this was completely ignored and now would be a nightmare to treat given its now moved location adjacent to a scar line. Although I admit this could be simply my own paranoia. Although the evolution is apparent thanks to the many pictures I was taking to chronical my melanoma.
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- January 15, 2016 at 8:45 am
Corrections:
There. Not they're
Nodular, not modular.
Sorry about that
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- January 15, 2016 at 8:45 am
Corrections:
There. Not they're
Nodular, not modular.
Sorry about that
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- January 15, 2016 at 8:45 am
Corrections:
There. Not they're
Nodular, not modular.
Sorry about that
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- January 15, 2016 at 9:13 am
I'm not going to lie, this sounds botched. I have never heard of SLNB being done except under general anaesthetic, in which case the patient is totally immobile. The doc massages the tracer through, they don't expect the patient to do calesthenics to get it moving. This sounds almost comical, if it wasn't so worrying for you. In my view, I don't think this doc can stage you with any great accuracy. I'd say the staging is provisional at best. Maybe you are pt1a…. it's just a shame you don't know that for certain. For now, I guess you can only assume that you exactly that, but I can understand your concern. The whole point of an SLBN is a clearer prognosis. In your case, it's just cost you time, pain and money and failed in its purpose of providing a yes/no answer to whether your melanoma has spread. Please tell me the SLNB was done BEFORE the WLE… do you have the WLE pathology back yet?
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- January 15, 2016 at 9:13 am
I'm not going to lie, this sounds botched. I have never heard of SLNB being done except under general anaesthetic, in which case the patient is totally immobile. The doc massages the tracer through, they don't expect the patient to do calesthenics to get it moving. This sounds almost comical, if it wasn't so worrying for you. In my view, I don't think this doc can stage you with any great accuracy. I'd say the staging is provisional at best. Maybe you are pt1a…. it's just a shame you don't know that for certain. For now, I guess you can only assume that you exactly that, but I can understand your concern. The whole point of an SLBN is a clearer prognosis. In your case, it's just cost you time, pain and money and failed in its purpose of providing a yes/no answer to whether your melanoma has spread. Please tell me the SLNB was done BEFORE the WLE… do you have the WLE pathology back yet?
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- January 15, 2016 at 9:58 am
Allow me to clarify. I was taken to the nuecular medicine lab where I was injected and scanned in a machine somewhat resembling a ct scanner. I was then taken into surgery. I was under total anesthesia at that point. The wle and failed slnb were performed at the same time. I was asleep so I’ll only assume the slnb was attempted first. This happened Wednesday the 13th so I have no pathology back yet. I have a follow up appointment a week from today. -
- January 15, 2016 at 9:58 am
Allow me to clarify. I was taken to the nuecular medicine lab where I was injected and scanned in a machine somewhat resembling a ct scanner. I was then taken into surgery. I was under total anesthesia at that point. The wle and failed slnb were performed at the same time. I was asleep so I’ll only assume the slnb was attempted first. This happened Wednesday the 13th so I have no pathology back yet. I have a follow up appointment a week from today. -
- January 15, 2016 at 9:58 am
Allow me to clarify. I was taken to the nuecular medicine lab where I was injected and scanned in a machine somewhat resembling a ct scanner. I was then taken into surgery. I was under total anesthesia at that point. The wle and failed slnb were performed at the same time. I was asleep so I’ll only assume the slnb was attempted first. This happened Wednesday the 13th so I have no pathology back yet. I have a follow up appointment a week from today.
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- January 15, 2016 at 9:13 am
I'm not going to lie, this sounds botched. I have never heard of SLNB being done except under general anaesthetic, in which case the patient is totally immobile. The doc massages the tracer through, they don't expect the patient to do calesthenics to get it moving. This sounds almost comical, if it wasn't so worrying for you. In my view, I don't think this doc can stage you with any great accuracy. I'd say the staging is provisional at best. Maybe you are pt1a…. it's just a shame you don't know that for certain. For now, I guess you can only assume that you exactly that, but I can understand your concern. The whole point of an SLBN is a clearer prognosis. In your case, it's just cost you time, pain and money and failed in its purpose of providing a yes/no answer to whether your melanoma has spread. Please tell me the SLNB was done BEFORE the WLE… do you have the WLE pathology back yet?
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- January 15, 2016 at 2:46 pm
Failed SLNB happen but not often. Sonograms have been studied to replace the SLNB in clinical trials but I'm not aware of the results of the trial. Prednisone will not hide a node that is growing that is filled with cancer and that is what the sonogram will look for. It will just be "macroscopic" instead of "microscopic". Your neck nodes,your clavicle area and your armpits are areas where the lesion could drain to so ask your doc how best to palpate the area so you can do your own monitoring.
If you have something growing/changing nearby, I'd definitely ask for it to be removed but I would not let them shave the lesion. I'd request a punch at least. Punches get depth that shave biopsies miss. The danger with shaves is they slice thru the depth and leave staging difficult. You really don't need that to happen again.
Prednisone is a bit controversial because it suppresses the immune system and melanoma is very much tied to the immune system. You will never know but it may have allowed the melanoma to develop. I realize that you can't just stop taking it but you might be considered higher risk because of its presence. I might consider asking again for baseline scans or at least regular chest X-rays.
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- January 15, 2016 at 2:46 pm
Failed SLNB happen but not often. Sonograms have been studied to replace the SLNB in clinical trials but I'm not aware of the results of the trial. Prednisone will not hide a node that is growing that is filled with cancer and that is what the sonogram will look for. It will just be "macroscopic" instead of "microscopic". Your neck nodes,your clavicle area and your armpits are areas where the lesion could drain to so ask your doc how best to palpate the area so you can do your own monitoring.
If you have something growing/changing nearby, I'd definitely ask for it to be removed but I would not let them shave the lesion. I'd request a punch at least. Punches get depth that shave biopsies miss. The danger with shaves is they slice thru the depth and leave staging difficult. You really don't need that to happen again.
Prednisone is a bit controversial because it suppresses the immune system and melanoma is very much tied to the immune system. You will never know but it may have allowed the melanoma to develop. I realize that you can't just stop taking it but you might be considered higher risk because of its presence. I might consider asking again for baseline scans or at least regular chest X-rays.
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- January 15, 2016 at 2:46 pm
Failed SLNB happen but not often. Sonograms have been studied to replace the SLNB in clinical trials but I'm not aware of the results of the trial. Prednisone will not hide a node that is growing that is filled with cancer and that is what the sonogram will look for. It will just be "macroscopic" instead of "microscopic". Your neck nodes,your clavicle area and your armpits are areas where the lesion could drain to so ask your doc how best to palpate the area so you can do your own monitoring.
If you have something growing/changing nearby, I'd definitely ask for it to be removed but I would not let them shave the lesion. I'd request a punch at least. Punches get depth that shave biopsies miss. The danger with shaves is they slice thru the depth and leave staging difficult. You really don't need that to happen again.
Prednisone is a bit controversial because it suppresses the immune system and melanoma is very much tied to the immune system. You will never know but it may have allowed the melanoma to develop. I realize that you can't just stop taking it but you might be considered higher risk because of its presence. I might consider asking again for baseline scans or at least regular chest X-rays.
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- January 15, 2016 at 4:54 pm
If I were you I would consult with a different Surgical Oncologist that specializes in Melanoma. I had my SLND and the radio active dye went directly to my Node in 10 mins with out any massage or jumping jacks. I was on a bed. The machine is not like a CT machine it is a flat screen that is placed above your chest that scans the radioactivity and places it on a map of your body on a TV screen. The radiologist marks the location with a marker of the closest location of the strongest (brightest) reading on the screen. Then you are sent up to the OR and the DR uses a Geiger counter to find the node without cutting you all up. My incision under my arm was about 1 inch. The tracer also has a blue dye in it to help the DR find it.
Regarding your bump, a needle biopsy should be completed on it. It should have been done before your tumor was removed. Most surgeons what to get it all done at one time as anesthesia is harmful to your body (you can die while under).
Why type of surgeon did you employ? Is this a cancer DR?
I would go to a different Hospital to have the SLND again. I think first they will ultra sound all your nodes to see if any are enlarged.
Tom
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- January 15, 2016 at 4:54 pm
If I were you I would consult with a different Surgical Oncologist that specializes in Melanoma. I had my SLND and the radio active dye went directly to my Node in 10 mins with out any massage or jumping jacks. I was on a bed. The machine is not like a CT machine it is a flat screen that is placed above your chest that scans the radioactivity and places it on a map of your body on a TV screen. The radiologist marks the location with a marker of the closest location of the strongest (brightest) reading on the screen. Then you are sent up to the OR and the DR uses a Geiger counter to find the node without cutting you all up. My incision under my arm was about 1 inch. The tracer also has a blue dye in it to help the DR find it.
Regarding your bump, a needle biopsy should be completed on it. It should have been done before your tumor was removed. Most surgeons what to get it all done at one time as anesthesia is harmful to your body (you can die while under).
Why type of surgeon did you employ? Is this a cancer DR?
I would go to a different Hospital to have the SLND again. I think first they will ultra sound all your nodes to see if any are enlarged.
Tom
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- January 15, 2016 at 4:54 pm
If I were you I would consult with a different Surgical Oncologist that specializes in Melanoma. I had my SLND and the radio active dye went directly to my Node in 10 mins with out any massage or jumping jacks. I was on a bed. The machine is not like a CT machine it is a flat screen that is placed above your chest that scans the radioactivity and places it on a map of your body on a TV screen. The radiologist marks the location with a marker of the closest location of the strongest (brightest) reading on the screen. Then you are sent up to the OR and the DR uses a Geiger counter to find the node without cutting you all up. My incision under my arm was about 1 inch. The tracer also has a blue dye in it to help the DR find it.
Regarding your bump, a needle biopsy should be completed on it. It should have been done before your tumor was removed. Most surgeons what to get it all done at one time as anesthesia is harmful to your body (you can die while under).
Why type of surgeon did you employ? Is this a cancer DR?
I would go to a different Hospital to have the SLND again. I think first they will ultra sound all your nodes to see if any are enlarged.
Tom
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