› Forums › General Melanoma Community › How do referrals happen?
- This topic has 33 replies, 7 voices, and was last updated 12 years, 10 months ago by
Janner.
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- October 1, 2013 at 7:01 pm
Sorry for such a basic question, but we are completely new to all this. My husband has a melanoma on the sole of his foot and metastases in the sentinel lymph nodes. We've just learned that his PET scan showed no further disease – yay! Tomorrow he will have an MRI. Surgery is scheduled in three weeks.
We have been referred to a surgical oncologist, but not a medical oncologist. I'm told we should see a melanoma specialist, but I'm not having much luck finding one in Sacramento. I'm told there is a very good melanoma clinic at UCSF, but I'm not sure how we will go about getting access to that – or if it is necessary in our case?
Our surgeon is currently travelling, so we won't actually see him until the day of surgery. I'm assuming that my husband is Stage III, based on what I've read, but as I understand it we won't know that for sure until surgery when they can see how thick the melanoma actually is.
Thanks so much for thoughts and help with these very basic questions!
- Replies
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- October 1, 2013 at 7:13 pm
UCSF is a good place. However, a surgical oncologist seems to be a good choice at this point. Once the surgery is done and all the path reports and scans are in, THEN you know exactly where you stand. At that point, if any treatment is considered, that is when I'd see a melanoma specialist. The local surgeon probably wouldn't do anything different than a surgeon at UCSF. Considering treatment options, clinical trials and the like are when you really want that specialist knowledge. Oh, and depth will not change anything in regards to staging. Depth only applies to stage I/II and once you have lymph node involvement, you graduate to stage III. Stage IV is "distant" metastases or organ involvement.
Just my opinion — not stage III/IV but been around the block a few times.
Janner
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- October 1, 2013 at 8:37 pm
I agree with Janner. A surgical oncologist conducted my initial SLNB with a plastic surgeon for the WLE (since a graft was required). After the surgery is when you would want to start follow-ups with a melanoma specialist. As an example, I conducted my initial follow-ups with the surgical oncologist who performed my initial surgery as I did not know any better at the time (I have learned a lot from this site since then). His treatment protocol would have been interferon had I progressed during his care, which is something most melanoma specialists would not pursue as there are other treatment options out there now that appear to be much better. My 2 cents.
Kevin
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- October 1, 2013 at 9:08 pm
Thanks to both you and Janner. Good insight! I think I understood that we have to get past the surgery first . . . just trying to be prepared for that. Interesting to know about interferon. I have also heard that the usual – whatever "usual" means – chemo is not too helpful for melanoma. I just want to be prepared to to move forward in the best way possible once the surgery is past. And now I have a much better idea of what questions should be asked at that time!
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- October 1, 2013 at 9:29 pm
Since you are new to this melanoma stuff, you might like to know that being stage III is much better than bing stage IV. Of course! However, the bad news is that there are very few FDA approved treatment options or clinical trials available for stage III compared to stage IV. Interferon or "watch and wait" are the usual options for stage III. Just recently a few clinical trials have started for stage III patients at "high risk" for recurrence. After your husband gets through his surgery and gets more reliable staging information, these are some of the questions and issues you can discuss with a melanoma oncologist.
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- October 1, 2013 at 9:29 pm
Since you are new to this melanoma stuff, you might like to know that being stage III is much better than bing stage IV. Of course! However, the bad news is that there are very few FDA approved treatment options or clinical trials available for stage III compared to stage IV. Interferon or "watch and wait" are the usual options for stage III. Just recently a few clinical trials have started for stage III patients at "high risk" for recurrence. After your husband gets through his surgery and gets more reliable staging information, these are some of the questions and issues you can discuss with a melanoma oncologist.
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- October 1, 2013 at 9:29 pm
Since you are new to this melanoma stuff, you might like to know that being stage III is much better than bing stage IV. Of course! However, the bad news is that there are very few FDA approved treatment options or clinical trials available for stage III compared to stage IV. Interferon or "watch and wait" are the usual options for stage III. Just recently a few clinical trials have started for stage III patients at "high risk" for recurrence. After your husband gets through his surgery and gets more reliable staging information, these are some of the questions and issues you can discuss with a melanoma oncologist.
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- October 1, 2013 at 9:08 pm
Thanks to both you and Janner. Good insight! I think I understood that we have to get past the surgery first . . . just trying to be prepared for that. Interesting to know about interferon. I have also heard that the usual – whatever "usual" means – chemo is not too helpful for melanoma. I just want to be prepared to to move forward in the best way possible once the surgery is past. And now I have a much better idea of what questions should be asked at that time!
-
- October 1, 2013 at 9:08 pm
Thanks to both you and Janner. Good insight! I think I understood that we have to get past the surgery first . . . just trying to be prepared for that. Interesting to know about interferon. I have also heard that the usual – whatever "usual" means – chemo is not too helpful for melanoma. I just want to be prepared to to move forward in the best way possible once the surgery is past. And now I have a much better idea of what questions should be asked at that time!
-
- October 1, 2013 at 8:37 pm
I agree with Janner. A surgical oncologist conducted my initial SLNB with a plastic surgeon for the WLE (since a graft was required). After the surgery is when you would want to start follow-ups with a melanoma specialist. As an example, I conducted my initial follow-ups with the surgical oncologist who performed my initial surgery as I did not know any better at the time (I have learned a lot from this site since then). His treatment protocol would have been interferon had I progressed during his care, which is something most melanoma specialists would not pursue as there are other treatment options out there now that appear to be much better. My 2 cents.
Kevin
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- October 1, 2013 at 8:37 pm
I agree with Janner. A surgical oncologist conducted my initial SLNB with a plastic surgeon for the WLE (since a graft was required). After the surgery is when you would want to start follow-ups with a melanoma specialist. As an example, I conducted my initial follow-ups with the surgical oncologist who performed my initial surgery as I did not know any better at the time (I have learned a lot from this site since then). His treatment protocol would have been interferon had I progressed during his care, which is something most melanoma specialists would not pursue as there are other treatment options out there now that appear to be much better. My 2 cents.
Kevin
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- October 2, 2013 at 12:48 pm
Just curious— do you think it useful to have genetic testing completed on the removed melanoma…. Given its location at the bottom of the foot, I believe knowing whether this is C-kit positive would be useful. Only bringing this up because I don’t know whether the testing is routine. -
- October 2, 2013 at 12:48 pm
Just curious— do you think it useful to have genetic testing completed on the removed melanoma…. Given its location at the bottom of the foot, I believe knowing whether this is C-kit positive would be useful. Only bringing this up because I don’t know whether the testing is routine. -
- October 2, 2013 at 12:48 pm
Just curious— do you think it useful to have genetic testing completed on the removed melanoma…. Given its location at the bottom of the foot, I believe knowing whether this is C-kit positive would be useful. Only bringing this up because I don’t know whether the testing is routine.
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- October 1, 2013 at 7:13 pm
UCSF is a good place. However, a surgical oncologist seems to be a good choice at this point. Once the surgery is done and all the path reports and scans are in, THEN you know exactly where you stand. At that point, if any treatment is considered, that is when I'd see a melanoma specialist. The local surgeon probably wouldn't do anything different than a surgeon at UCSF. Considering treatment options, clinical trials and the like are when you really want that specialist knowledge. Oh, and depth will not change anything in regards to staging. Depth only applies to stage I/II and once you have lymph node involvement, you graduate to stage III. Stage IV is "distant" metastases or organ involvement.
Just my opinion — not stage III/IV but been around the block a few times.
Janner
-
- October 1, 2013 at 7:13 pm
UCSF is a good place. However, a surgical oncologist seems to be a good choice at this point. Once the surgery is done and all the path reports and scans are in, THEN you know exactly where you stand. At that point, if any treatment is considered, that is when I'd see a melanoma specialist. The local surgeon probably wouldn't do anything different than a surgeon at UCSF. Considering treatment options, clinical trials and the like are when you really want that specialist knowledge. Oh, and depth will not change anything in regards to staging. Depth only applies to stage I/II and once you have lymph node involvement, you graduate to stage III. Stage IV is "distant" metastases or organ involvement.
Just my opinion — not stage III/IV but been around the block a few times.
Janner
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- October 2, 2013 at 12:01 am
Hi Michele,
I get my treatments in Auburn, CA and Sacramento, CA. I see a medical oncologist in Auburn but my specialist is in San Francisco. Dr. Minor at Cal Pacific. Your surgeon will probably refer you to a local oncologist. Most oncologist in Sacramento area know of Dr. Minor. He's GREAT!! He's up on all the current treatments and trials. Your oncologist would refer you to see him. I have been to UCSF when I was first diagnosed. I found that it was not as personal as going to Dr. Minor because of the size of the facilities and doctors load of patients. Hopefully this helps.
All my best to you
Denise
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- October 2, 2013 at 5:06 pm
Yes, knowing if it is c-kit positive could be crucial. The first of the two c-kit tests is easy and cheap to have run. Any local lab should be able to conduct the c-kit histochemical test overnight. If this test is positive, then the more complicated DNA mutation test should be conducted. This can take a month to get results from. If the first c-kit test is negative, then I would like to have a BRAF test. An NRAS test could also be useful since NIH published a report last week that NRAS mutation melanomas had a 47% response rate to IL-2 administration. IL-2 also stands a chance of actually CURING melanoma. I had a 2 year partial response to IL-2 and now have had a continuing 4 1/2 yr positive response to my targeted treatment for my C-kit melanoma.
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- October 2, 2013 at 5:06 pm
Yes, knowing if it is c-kit positive could be crucial. The first of the two c-kit tests is easy and cheap to have run. Any local lab should be able to conduct the c-kit histochemical test overnight. If this test is positive, then the more complicated DNA mutation test should be conducted. This can take a month to get results from. If the first c-kit test is negative, then I would like to have a BRAF test. An NRAS test could also be useful since NIH published a report last week that NRAS mutation melanomas had a 47% response rate to IL-2 administration. IL-2 also stands a chance of actually CURING melanoma. I had a 2 year partial response to IL-2 and now have had a continuing 4 1/2 yr positive response to my targeted treatment for my C-kit melanoma.
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- October 2, 2013 at 7:29 pm
Jerry, I haven't really done much research on mucosal or Acral MM. I know mucosal melanoma may have the C-Kit mutation, but is acral also in that same category?
G-Samsa – good question. I do not think genetic testing is done regularly for C-Kit. Probably becoming more common for BRAF if you go to a large institution, but mucosal/acral are much rarer forms of melanoma. Unless you are seen at a large research institute, I expect that type of testing wouldn't be a routine test. Its possible that the lesion is not acral even given it's location, so that might be the first order of business to determine.
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- October 2, 2013 at 7:29 pm
Jerry, I haven't really done much research on mucosal or Acral MM. I know mucosal melanoma may have the C-Kit mutation, but is acral also in that same category?
G-Samsa – good question. I do not think genetic testing is done regularly for C-Kit. Probably becoming more common for BRAF if you go to a large institution, but mucosal/acral are much rarer forms of melanoma. Unless you are seen at a large research institute, I expect that type of testing wouldn't be a routine test. Its possible that the lesion is not acral even given it's location, so that might be the first order of business to determine.
-
- October 2, 2013 at 7:29 pm
Jerry, I haven't really done much research on mucosal or Acral MM. I know mucosal melanoma may have the C-Kit mutation, but is acral also in that same category?
G-Samsa – good question. I do not think genetic testing is done regularly for C-Kit. Probably becoming more common for BRAF if you go to a large institution, but mucosal/acral are much rarer forms of melanoma. Unless you are seen at a large research institute, I expect that type of testing wouldn't be a routine test. Its possible that the lesion is not acral even given it's location, so that might be the first order of business to determine.
-
- October 2, 2013 at 5:06 pm
Yes, knowing if it is c-kit positive could be crucial. The first of the two c-kit tests is easy and cheap to have run. Any local lab should be able to conduct the c-kit histochemical test overnight. If this test is positive, then the more complicated DNA mutation test should be conducted. This can take a month to get results from. If the first c-kit test is negative, then I would like to have a BRAF test. An NRAS test could also be useful since NIH published a report last week that NRAS mutation melanomas had a 47% response rate to IL-2 administration. IL-2 also stands a chance of actually CURING melanoma. I had a 2 year partial response to IL-2 and now have had a continuing 4 1/2 yr positive response to my targeted treatment for my C-kit melanoma.
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- October 2, 2013 at 12:01 am
Hi Michele,
I get my treatments in Auburn, CA and Sacramento, CA. I see a medical oncologist in Auburn but my specialist is in San Francisco. Dr. Minor at Cal Pacific. Your surgeon will probably refer you to a local oncologist. Most oncologist in Sacramento area know of Dr. Minor. He's GREAT!! He's up on all the current treatments and trials. Your oncologist would refer you to see him. I have been to UCSF when I was first diagnosed. I found that it was not as personal as going to Dr. Minor because of the size of the facilities and doctors load of patients. Hopefully this helps.
All my best to you
Denise
-
- October 2, 2013 at 12:01 am
Hi Michele,
I get my treatments in Auburn, CA and Sacramento, CA. I see a medical oncologist in Auburn but my specialist is in San Francisco. Dr. Minor at Cal Pacific. Your surgeon will probably refer you to a local oncologist. Most oncologist in Sacramento area know of Dr. Minor. He's GREAT!! He's up on all the current treatments and trials. Your oncologist would refer you to see him. I have been to UCSF when I was first diagnosed. I found that it was not as personal as going to Dr. Minor because of the size of the facilities and doctors load of patients. Hopefully this helps.
All my best to you
Denise
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