› Forums › General Melanoma Community › SLNB & PET error rates
- This topic has 9 replies, 3 voices, and was last updated 10 years, 1 month ago by
phtreehuggr.
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- April 2, 2014 at 4:50 pm
My mom had this done years ago and there was nothing found in the sampling of nodes they took. At the beginning of this year they found a golf ball sized tumor in her abdomen, and later other ones, regionally. The excuse for this is that there is an small error rate in the test.
WHAT? I understand nothing is perfect, but c'mon, that is a piss poor excuse. She went back for skin checks every 6 months following the SNLB and nothing was found. They never checked her glands. Had they done so, they would have felt that her glands in her pelvis were clearing swollen. She never noticed them until after the diagnosis, and then it became apparent to everyone that it was clearly more swollen that the nodes on the opposite side.
My initial thought was…why were they just doing skin checks and not scans? Of course, for the small number of people that experience was she has experienced, insurance agencies are not going to cover expensive testing like this just for 1-2% of people.
Following her diagnosis, she gets a PET scan. For which she is told is 97-98% effective in detecting melanomas. Wrong again. Her scan showed nothing other than the golf ball size mass in her abdomen…turns out there were several other, smaller (but not so small they shouldn't show up on a PET scan) areas that contained melanoma.
Are there no alternatives? Going forward, how is she suppsoe to know whether or not the melanoma has resurfaced?! I mean, really, I just don't get it.
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- April 2, 2014 at 4:59 pm
I don't know if a negative node result necessarily means "error." . . a negative result is not a guarantee of not spreading. Of course, it's a wonderful result to get, but a clear SNB tells you that at this particular moment in time the first node in the path is clear. By having your nodes tested, if they come back positive you will know your disease is is at a more serious stage and have time to possibily stop the spread, and closer follow up. This is the main reason to have it done. But, cells could already be in stream as the SNB was done, or cells happened to go to a different node, or travel through the bloodstream, etc. . . I used to think negative SNB was a guarantee, but it's not. It's for diagnostic purposes at this moment in time.
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- April 2, 2014 at 4:59 pm
I don't know if a negative node result necessarily means "error." . . a negative result is not a guarantee of not spreading. Of course, it's a wonderful result to get, but a clear SNB tells you that at this particular moment in time the first node in the path is clear. By having your nodes tested, if they come back positive you will know your disease is is at a more serious stage and have time to possibily stop the spread, and closer follow up. This is the main reason to have it done. But, cells could already be in stream as the SNB was done, or cells happened to go to a different node, or travel through the bloodstream, etc. . . I used to think negative SNB was a guarantee, but it's not. It's for diagnostic purposes at this moment in time.
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- April 2, 2014 at 4:59 pm
I don't know if a negative node result necessarily means "error." . . a negative result is not a guarantee of not spreading. Of course, it's a wonderful result to get, but a clear SNB tells you that at this particular moment in time the first node in the path is clear. By having your nodes tested, if they come back positive you will know your disease is is at a more serious stage and have time to possibily stop the spread, and closer follow up. This is the main reason to have it done. But, cells could already be in stream as the SNB was done, or cells happened to go to a different node, or travel through the bloodstream, etc. . . I used to think negative SNB was a guarantee, but it's not. It's for diagnostic purposes at this moment in time.
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- April 2, 2014 at 11:08 pm
My daughter's SNB came back negative. Less than a month later a node just above the one that was removed became enlarged. Yep, melanoma. I can't blame the test. I saw where the radioactive isotope went on the scan and the doctor said the blue dye went to the same lymph node. Melanoma doesn't follow the rules and does whatever it wants. I am just glad the other node was apparent and not hidden so we could have the lymph node dissection done. No other lymph nodes were positive for melanoma. Her follow up scans alternate PET scan with CT scan and we have the melanoma oncologist and her surgeon review the scans. Can't have too many eyes on those things. Unfortunately until you are at least stage III they don't order any scans thinking that the odds are low of metastasis and the exposure to radiation is a health risk. They should be scheduling scans for her now but I know that is small comfort.
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- April 4, 2014 at 7:55 pm
Gotcha – didn't know that!
It's a bummer about the PET scans showing nothing though!
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- April 4, 2014 at 7:55 pm
Gotcha – didn't know that!
It's a bummer about the PET scans showing nothing though!
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- April 4, 2014 at 7:55 pm
Gotcha – didn't know that!
It's a bummer about the PET scans showing nothing though!
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- April 2, 2014 at 11:08 pm
My daughter's SNB came back negative. Less than a month later a node just above the one that was removed became enlarged. Yep, melanoma. I can't blame the test. I saw where the radioactive isotope went on the scan and the doctor said the blue dye went to the same lymph node. Melanoma doesn't follow the rules and does whatever it wants. I am just glad the other node was apparent and not hidden so we could have the lymph node dissection done. No other lymph nodes were positive for melanoma. Her follow up scans alternate PET scan with CT scan and we have the melanoma oncologist and her surgeon review the scans. Can't have too many eyes on those things. Unfortunately until you are at least stage III they don't order any scans thinking that the odds are low of metastasis and the exposure to radiation is a health risk. They should be scheduling scans for her now but I know that is small comfort.
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- April 2, 2014 at 11:08 pm
My daughter's SNB came back negative. Less than a month later a node just above the one that was removed became enlarged. Yep, melanoma. I can't blame the test. I saw where the radioactive isotope went on the scan and the doctor said the blue dye went to the same lymph node. Melanoma doesn't follow the rules and does whatever it wants. I am just glad the other node was apparent and not hidden so we could have the lymph node dissection done. No other lymph nodes were positive for melanoma. Her follow up scans alternate PET scan with CT scan and we have the melanoma oncologist and her surgeon review the scans. Can't have too many eyes on those things. Unfortunately until you are at least stage III they don't order any scans thinking that the odds are low of metastasis and the exposure to radiation is a health risk. They should be scheduling scans for her now but I know that is small comfort.
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