Just bummed and walking back in my mind again…
In 1992 0r 1993 ( I forget!) I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma… told me not to worry…
Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.
Just bummed and walking back in my mind again…
In 1992 0r 1993 ( I forget!) I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma… told me not to worry…
Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.
Gross Description:
Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Consider re-excision.
Microscopic Description:
Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision is a consideration. Correlate clinically.
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SO..I went back and had it re-excised…and 5 sental lymph nodes removed from my neck…all were clear. Nothing was recommended as follow up.
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In May and early June 2009 I was having trouble breathing and a few other issues I found out something was growing close to my superior vena cava and if they didn't stop it -it would cut off all blood to the top half of my body and I would die… when they used a Storz video mediastinoscope at Mayo Clinic and the surgeon found a very enlarged black right paratracheal lymph node they cold only get a few bits of tissue for biopsy purposes but they couldn't remove it…it wasmetastatic malignant melanoma. They recommended radiation and Temodar and told me I would be dead in 6-9 months..it was devastating… The surgeon said he would not consider surgery to remove it because of the dangerous location of it…he said it would need to get down to the size of a bb before he would consider surgery.
The chemo and radiation had was keeping the "thing" inactive…
In Feb 2010 while getting ready for a trial in Seattle I had a PET and my SUV jumped…my local North Dakota onc didn't want to anything until it got "bad"…and decided it was time to go back to Mayo for another opinion again…this time I asked about surgery and they set up a consult…since I had no spread and it had just begun to show activity after several months- the surgeon agreed to do a thoracotomy..my Mayo onc was under the impression it was 4- 4.5 cent melanoma in a single lymph node…the surgeon did say he saw a little spot from the initial tests a year before that had no changed in size or shape…but wanted to remove it by wedge resection as well…March 26, 2010-It was a rough surgery and he took out 3 lymph nodes…the middle one held the melanoma and it was actually 6.8 cent. A lot of the melanoma was necrotized and that is why it didn't show up on the PET. The tiny spot he removed by wedge resection was just a lymph node and not melanoma..
Now I in the second 12 week cycle of my vaccine trial at Moffitt and I am still NED…I hope it never comes back…
I am feeling very blessed and I am also feeling very guilty…I want to know why I am doing well and some of my friends aren't…did my original diagnosis of Lentigo maligna play a role in it? I want to know why I am different…any idea's…Hey Jimmy….you out there?? I have 3 friends not doing so hot right now and I am bummed out.
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