› Forums › General Melanoma Community › need some more help and guidance
- This topic has 9 replies, 3 voices, and was last updated 11 years, 12 months ago by
triciad.
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- April 25, 2012 at 8:16 pm
I am really confused and need any help or guidance you can offer!
In July, I found an intransit close to my original tumor (buttocks). I went to my dermatologist who tried to excise, but it was too deep. She sent me directly to surgeon. The piece she got out was biopsied and came back melanoma. I had surgery and did 6 weeks of radiation.
I am really confused and need any help or guidance you can offer!
In July, I found an intransit close to my original tumor (buttocks). I went to my dermatologist who tried to excise, but it was too deep. She sent me directly to surgeon. The piece she got out was biopsied and came back melanoma. I had surgery and did 6 weeks of radiation.
A couple of weeks ago, I found a similar bump. I went to my dermatologist who told me she spoke with my oncologist and he said not to biopsy, go and get PET. I got the PET. My oncologist's PA called me the next morning to report the PET showed absolutely nothing…probably fatty tissue. I was in shock because it was right between my 2 previous melanomas and felt exactly like the one in July. I thought something wasn't right, but the temporary elation was wonderful.
I just happened to have my regular checkup with my oncologist that afternoon, so I still went to see him. He looked at it and said, "It's definitely melanoma and set up surgery with the surgeon". So I did, and I had the surgery. Path came back…melanoma.
Naturally, I'm bewildered. How could the PET not show anything (path report says specimen was 3 x 1.5 x 1.3 cm)? In addition, if I didn't have my regular check up, I would be walking around with this melanoma growing and growing inside of me!
I'm wondering, what would you do? Do I say something to my oncologist on Monday about the "all clear message"? I used to have such faith in the PET scan findings, but now, I'm not so sure. Also, I don't know if it's time to get a new doctor?
PLEASE give me your advice…what would you do?
Thank you so much for all of your help. I've said it before and I'll say it again…it's my MPIP family who I trust!
Tricia
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- April 25, 2012 at 9:03 pm
Tricia,
I'm sorry about the results. Unfortunately false positives and false negatives happen with PET scans. I had a lump on my arm that was right below other nodes that were positive. It didn't show up on the PET and they then did a FNA. My oncologist was sure it was mel and asked for a full excision. Ended up being a fatty tissue. Until there is a biopsy they just don't know 100%
The term NED means "no evidence of disease". It usually has to be a cm to show up on the PET. The specimen includes the excision so it is larger then just the tumor. They have been watching now a nodule in my lung for 15 months that is tiny watching for change. This last time it did grow and they are going to do a diagnostic CT. My nodule has been showing up on the CT portion of the scan but not lighting up. A CT that is done by itself gives more details then part of the PET.
It sounds to me that your Doctor did what he should have. As soon as he saw you he looked it into it further. Now my oncologist always checks the scan himself also but he always does this before I'm given results.
Linda
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- April 25, 2012 at 9:03 pm
Tricia,
I'm sorry about the results. Unfortunately false positives and false negatives happen with PET scans. I had a lump on my arm that was right below other nodes that were positive. It didn't show up on the PET and they then did a FNA. My oncologist was sure it was mel and asked for a full excision. Ended up being a fatty tissue. Until there is a biopsy they just don't know 100%
The term NED means "no evidence of disease". It usually has to be a cm to show up on the PET. The specimen includes the excision so it is larger then just the tumor. They have been watching now a nodule in my lung for 15 months that is tiny watching for change. This last time it did grow and they are going to do a diagnostic CT. My nodule has been showing up on the CT portion of the scan but not lighting up. A CT that is done by itself gives more details then part of the PET.
It sounds to me that your Doctor did what he should have. As soon as he saw you he looked it into it further. Now my oncologist always checks the scan himself also but he always does this before I'm given results.
Linda
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- April 25, 2012 at 9:03 pm
Tricia,
I'm sorry about the results. Unfortunately false positives and false negatives happen with PET scans. I had a lump on my arm that was right below other nodes that were positive. It didn't show up on the PET and they then did a FNA. My oncologist was sure it was mel and asked for a full excision. Ended up being a fatty tissue. Until there is a biopsy they just don't know 100%
The term NED means "no evidence of disease". It usually has to be a cm to show up on the PET. The specimen includes the excision so it is larger then just the tumor. They have been watching now a nodule in my lung for 15 months that is tiny watching for change. This last time it did grow and they are going to do a diagnostic CT. My nodule has been showing up on the CT portion of the scan but not lighting up. A CT that is done by itself gives more details then part of the PET.
It sounds to me that your Doctor did what he should have. As soon as he saw you he looked it into it further. Now my oncologist always checks the scan himself also but he always does this before I'm given results.
Linda
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- April 25, 2012 at 10:49 pm
Hi Tricia,
A very similar thing just happened to me. I was NED for 16 months after the original diagnosis of IIIa in late 2010. In late February of this year I found an in-transit met between the primary (left back) and axillary dissection sites. The docs ordered PET/CT scans after the excision, and I had those in the middle of April. They called within a couple of hours to say that the PET was clear -YAY! However, in the late afternoon, they called back to say the CT showed two new nodules, both about 5mm, in the left lung. The onc said they are too small to biopsy by FNA, so rescan in two months. He said he was "not convinced" they are mel, as lung nodules are fairly common in people of my age. I am very happy to wait on this, but I will check with Dr. Wolchok at Sloan when I see him at the end of May, if nothing has happened before that.
It does seem as if our doctors are operating in similar ways, so that gives me hope that things are being done as they should be.
I will be thinking of you (and Linda) and sending positive vibes!
Lear
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- April 25, 2012 at 10:49 pm
Hi Tricia,
A very similar thing just happened to me. I was NED for 16 months after the original diagnosis of IIIa in late 2010. In late February of this year I found an in-transit met between the primary (left back) and axillary dissection sites. The docs ordered PET/CT scans after the excision, and I had those in the middle of April. They called within a couple of hours to say that the PET was clear -YAY! However, in the late afternoon, they called back to say the CT showed two new nodules, both about 5mm, in the left lung. The onc said they are too small to biopsy by FNA, so rescan in two months. He said he was "not convinced" they are mel, as lung nodules are fairly common in people of my age. I am very happy to wait on this, but I will check with Dr. Wolchok at Sloan when I see him at the end of May, if nothing has happened before that.
It does seem as if our doctors are operating in similar ways, so that gives me hope that things are being done as they should be.
I will be thinking of you (and Linda) and sending positive vibes!
Lear
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- April 25, 2012 at 10:49 pm
Hi Tricia,
A very similar thing just happened to me. I was NED for 16 months after the original diagnosis of IIIa in late 2010. In late February of this year I found an in-transit met between the primary (left back) and axillary dissection sites. The docs ordered PET/CT scans after the excision, and I had those in the middle of April. They called within a couple of hours to say that the PET was clear -YAY! However, in the late afternoon, they called back to say the CT showed two new nodules, both about 5mm, in the left lung. The onc said they are too small to biopsy by FNA, so rescan in two months. He said he was "not convinced" they are mel, as lung nodules are fairly common in people of my age. I am very happy to wait on this, but I will check with Dr. Wolchok at Sloan when I see him at the end of May, if nothing has happened before that.
It does seem as if our doctors are operating in similar ways, so that gives me hope that things are being done as they should be.
I will be thinking of you (and Linda) and sending positive vibes!
Lear
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