› Forums › General Melanoma Community › 2 docs with opposite treatment plans. Stage IV, maybe? Any advice?.
- This topic has 27 replies, 6 voices, and was last updated 9 years, 8 months ago by
Nal64.
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- August 22, 2014 at 10:04 pm
My 40 yr old husband found a lump in his shoulder in January. We believed it to be a muscle knot but when it didn't go away after a few months we were sent to a surgeon. The general surgeon didn't like that the lump was underneath the muscle and took a needle biopsy that was diagnosed as melanoma. The general surgeon disagreed and sent us to a sarcoma specialist at the University of Chicago.
Our sarcoma specialist performed an incision biopsy to make sure radiation was appropriate for the "sarcoma". We also had a PET scan done that showed no other evidence of disease. The sample came back from the pathologist again as melanoma (but now from a more reputable hospital).
Our sarcoma specialist conferred with a team that included a radiation specialist and melanoma specialist and decided excision without prior radiation was the best course of action. He removed a 3cm x4cm tumor with narrow but clean margins on July 1, 2014 on the side of the neck and top of the shoulder. It was located beneath the trapezius muscle. No lymph nodes were checked because this was considered "metastatic" with an unknown primary.
We then sought the care of a highly regarded melanoma specialist within our advocate hospitals medical network. He says he believes that the PET scan is correct, that this is a "primary melanoma of soft parts which is extreamly rare and cannot be staged because melanoma is staged from the top of the skin down". This tumor appeared beneith the muscle. We can find no other information on this diagnosis online, as it all leads back to clear cell sarcoma.
I should also make it clear, this tumor has been tested for every genetic marker there is. It contains NO genetic mutations and a FISH test was performed that completely ruled out clear cell sarcoma.
The melanoma specialist wants to take a "watch and wait " approach. He fears radiation would do more harm then good in the long run. He said if Yervoy were available to us that he would give it, but that the FDA hasn't approved it for Resected melanoma.
Yesterday my husband had a follow up with the surgeon who performed the resection. Because I couldn't attend the appointment, I emailed a list of nagging questions I still had. The surgeon was then able to talk to the melanoma specialist (gajewski) on staff at UofC before my husbands visit. The surgeon said there is no such thing as "primary melanoma of the soft parts" . They believe the PET scan missed something microscopic and want us to see Dr. gajewski who will most likely radiate and get us into a clinical trial where we will either get high or low dose yervoy or IL2.
The melanoma specialist we have been seeing with a watch and wait approach told us he would contact our surgeon twice. He has not. We are in the process of emailing him and getting answers as to why this wasn't done.
The question becomes: do we get our second opinion at the University of Chicago (where we have pretty much been told by the surgeon what treatment will be) , or do we seek out a "third" -but second to our insurance company- opinion that proves to be a tie-breaker? Is it too late for radiation? Do we fight to get seen at MD Anderson or Sloan-Kettering? I would love another PET scan too, but will not be allowed one for one year following the resection per our insurance company.
Any info you have would be greatly appreciated. We are so confused at this point and don't know who to believe. I have all path reports and any other info needed if it would help someone lead us in the right direction.
Thank you in advance
-N
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- August 22, 2014 at 11:52 pm
How frustrating. I'm sorry you are dealing with this.
I think what they are referring to is primary dermal melanoma. Are you sure they did a PET scan or was it a PET/CT? CT scans are more commonly used for melanoma and maybe that will be a work around with your insurance.
Personally I have been seen at U of C, Northwestern and Rush (their melanoma specialist left), and I also know the advocate Dr you are referring to. They are all reputable and well respected in the melanoma field. All of that being said I would absolutely go to Sloan if at all possible. I think you are looking at two very different things, and dealing with a rare subtype.
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- August 22, 2014 at 11:52 pm
How frustrating. I'm sorry you are dealing with this.
I think what they are referring to is primary dermal melanoma. Are you sure they did a PET scan or was it a PET/CT? CT scans are more commonly used for melanoma and maybe that will be a work around with your insurance.
Personally I have been seen at U of C, Northwestern and Rush (their melanoma specialist left), and I also know the advocate Dr you are referring to. They are all reputable and well respected in the melanoma field. All of that being said I would absolutely go to Sloan if at all possible. I think you are looking at two very different things, and dealing with a rare subtype.
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- August 22, 2014 at 11:52 pm
How frustrating. I'm sorry you are dealing with this.
I think what they are referring to is primary dermal melanoma. Are you sure they did a PET scan or was it a PET/CT? CT scans are more commonly used for melanoma and maybe that will be a work around with your insurance.
Personally I have been seen at U of C, Northwestern and Rush (their melanoma specialist left), and I also know the advocate Dr you are referring to. They are all reputable and well respected in the melanoma field. All of that being said I would absolutely go to Sloan if at all possible. I think you are looking at two very different things, and dealing with a rare subtype.
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- August 23, 2014 at 2:04 am
First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.
We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it. The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital. I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?
luckly we have family in the New York area and may look at Sloan being our "second opinion". You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.
Thanks,
N
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- August 23, 2014 at 2:48 pm
If you do the clinical trial they will cover the costs of scans and Dr visits, at least that has been my experience in my trial. I also think once you get established with an oncologist their office will deal with the insurance.
You know I also wanted to suggest that you do a board member search for "JOSHF" I know he won't mind that I mentioned him. I am hoping he will respond but he's also local and has a somewhat similar case to your husband. He did a trial with IPI and IL2. He has a lot of info posted on his profile.
There are a lot of very knowledgable board members so continue to ask questions. I don't consider myself one of them, but I am always curious about our local oncologists. I'm a stage 3 patient and haven't been thrilled with our local options, which is crazy considering it's Chicago.
Best of luck
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- August 23, 2014 at 2:48 pm
If you do the clinical trial they will cover the costs of scans and Dr visits, at least that has been my experience in my trial. I also think once you get established with an oncologist their office will deal with the insurance.
You know I also wanted to suggest that you do a board member search for "JOSHF" I know he won't mind that I mentioned him. I am hoping he will respond but he's also local and has a somewhat similar case to your husband. He did a trial with IPI and IL2. He has a lot of info posted on his profile.
There are a lot of very knowledgable board members so continue to ask questions. I don't consider myself one of them, but I am always curious about our local oncologists. I'm a stage 3 patient and haven't been thrilled with our local options, which is crazy considering it's Chicago.
Best of luck
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- August 23, 2014 at 2:48 pm
If you do the clinical trial they will cover the costs of scans and Dr visits, at least that has been my experience in my trial. I also think once you get established with an oncologist their office will deal with the insurance.
You know I also wanted to suggest that you do a board member search for "JOSHF" I know he won't mind that I mentioned him. I am hoping he will respond but he's also local and has a somewhat similar case to your husband. He did a trial with IPI and IL2. He has a lot of info posted on his profile.
There are a lot of very knowledgable board members so continue to ask questions. I don't consider myself one of them, but I am always curious about our local oncologists. I'm a stage 3 patient and haven't been thrilled with our local options, which is crazy considering it's Chicago.
Best of luck
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- August 23, 2014 at 2:04 am
First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.
We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it. The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital. I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?
luckly we have family in the New York area and may look at Sloan being our "second opinion". You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.
Thanks,
N
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- August 23, 2014 at 2:04 am
First, thank you SO much for reaching out! Knowing someone on here knows the area and what they are talking about feels like we are not so alone in this journey.
We first had a CT to see if it was below the muscle, then an MRI to see how big it was and finally a PET when they determined it was melanoma. They were looking for the primary at that point, never found it. The MRI and PET had to be done in one week, through insurance- not easy! We ended up in libertyville for the PET with one lab tech reading it. The docs have interpreted his findings, but I would love to have another one done at a teaching hospital. I know one is required at the beginning of the yervoy clinical trial going on. Any idea if that is through insurance or the drug company?
luckly we have family in the New York area and may look at Sloan being our "second opinion". You are right though, everyone we have come across seems to stress the fact that the presentation of this single, large tumor is highly unusual.
Thanks,
N
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- August 23, 2014 at 12:48 am
Hi, so sorry you've had to join us here but welcome. The long and detailed post you wrote will help those with more knowledge to advise you. However, as you noted, it appears that this condition is very rare, so perhaps answers to your questions will need to come from your next consult.
I'm not one of the MPIP members with a lot of experience or medical knowledge, but I have a few reactions and suggestions based on your story.
First, about the diagnosis: is it metastatic or primary? You may never know – and there are others here (including my husband) for whom this is just a fact of life. Our first diagnosis was metastatic – but after consultations with three melanoma specialists, we now believe that this was the primary site – a "cyst" under the skin with no known mainfestation on the epidermis. That may improve the prognosis, but the uncertainty remains – along with the fact that we will never know. In the long run, it probably doesn't matter very much. The important thing is that he is two years with no evidence of disease. We are living every day, planning vacations for the next year, and looking forward to life together, however long.
Next, about who to consult with: I suggest you look for a specialist in "melanoma of unknown primary." For our second opinion we consulted with Dr. William Sharfman at Johns Hopkins, whose bio said that was one area of focus for his practice. (Now it says he specializes in complex and high-risk cases.) He spent a long time with us, reviewing the pathology reports, and explained everything – what he believed was going on, what other possibilities were, and potential treatments. He was happy we were seeking even one more opinion – and my guess is that the top clinical practitioners and researchers are all happy to consult with each other on cases like this. Our third consultation was with Dr. Lynn Schuchter, chair of the hematology/oncology department at University of Pennsylvania and also of the Scientific Advisory Committee for the Melanoma Reseasrch Foundation. She went through it all with us again and gave us even more information about the possible treatments, explaining the difference between the different melanoma vaccines that were in trials at the time.
My thoughts after seeing the three melanoma specialists we consulted are that with a complex and uncertain case like this, you want to be seen by one of the top people in one of the top programs. Yes it is worth it to go to MD Anderson, Memorial Sloan Kettering, Moffitt, or Johns Hopkins. Get to the top person you can get an appointment with, even if it takes a week or two longer.
Third, I'm not that crazy about PET scans – but what about more frequent CT scans? I think they are part of the "watch and wait" regimen, at least for the first year or two. Perhaps a melanoma specialist can convince your insurance company …
And finally – I am not up on what clinical trials are open at this time, but have you considered looking into a vaccine trial? If your husband has no evidence of disease, other treatments (yervoy, anti-PD1) probably won't be possible – as they weren't for us. But we couldn't adjust to the thought of "doing nothing," another term for "watch and wait," so my husband enrolled in a trial of a melanoma vaccine. If trials are available to you, give them some consideration. At least your husband would be seeing a melanoma specialist on a regular schedule, and scans are usually part of the trial. It's worth thinking about …
I hope this is helpful and not just a long answer … please let us know what's next for you.
Best of luck –
Hazel
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- August 23, 2014 at 2:22 am
Thank you, thank you, thank you! I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?
We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with?? For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)
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- August 23, 2014 at 2:22 am
Thank you, thank you, thank you! I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?
We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with?? For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)
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- August 23, 2014 at 2:22 am
Thank you, thank you, thank you! I do think it is on our best interest to continue getting opinions. Did you have any trouble with insurance allowing these visits? I got a chuckle from our Primary physician when we mentioned paying out of pocket to see specialists, I guess they no longer do that and deal only with insurance companies?
We will be getting CT scans every 3 months, insurance has agreed to that. The biggest question now is who's advice to go with?? For the time being we try to remain positive that the tumor is removed and he is currently NED. So happy to hear of someone else with a strange presentation being healthy 2 years out! We are not reading enough of those stories:)
-
- August 23, 2014 at 12:48 am
Hi, so sorry you've had to join us here but welcome. The long and detailed post you wrote will help those with more knowledge to advise you. However, as you noted, it appears that this condition is very rare, so perhaps answers to your questions will need to come from your next consult.
I'm not one of the MPIP members with a lot of experience or medical knowledge, but I have a few reactions and suggestions based on your story.
First, about the diagnosis: is it metastatic or primary? You may never know – and there are others here (including my husband) for whom this is just a fact of life. Our first diagnosis was metastatic – but after consultations with three melanoma specialists, we now believe that this was the primary site – a "cyst" under the skin with no known mainfestation on the epidermis. That may improve the prognosis, but the uncertainty remains – along with the fact that we will never know. In the long run, it probably doesn't matter very much. The important thing is that he is two years with no evidence of disease. We are living every day, planning vacations for the next year, and looking forward to life together, however long.
Next, about who to consult with: I suggest you look for a specialist in "melanoma of unknown primary." For our second opinion we consulted with Dr. William Sharfman at Johns Hopkins, whose bio said that was one area of focus for his practice. (Now it says he specializes in complex and high-risk cases.) He spent a long time with us, reviewing the pathology reports, and explained everything – what he believed was going on, what other possibilities were, and potential treatments. He was happy we were seeking even one more opinion – and my guess is that the top clinical practitioners and researchers are all happy to consult with each other on cases like this. Our third consultation was with Dr. Lynn Schuchter, chair of the hematology/oncology department at University of Pennsylvania and also of the Scientific Advisory Committee for the Melanoma Reseasrch Foundation. She went through it all with us again and gave us even more information about the possible treatments, explaining the difference between the different melanoma vaccines that were in trials at the time.
My thoughts after seeing the three melanoma specialists we consulted are that with a complex and uncertain case like this, you want to be seen by one of the top people in one of the top programs. Yes it is worth it to go to MD Anderson, Memorial Sloan Kettering, Moffitt, or Johns Hopkins. Get to the top person you can get an appointment with, even if it takes a week or two longer.
Third, I'm not that crazy about PET scans – but what about more frequent CT scans? I think they are part of the "watch and wait" regimen, at least for the first year or two. Perhaps a melanoma specialist can convince your insurance company …
And finally – I am not up on what clinical trials are open at this time, but have you considered looking into a vaccine trial? If your husband has no evidence of disease, other treatments (yervoy, anti-PD1) probably won't be possible – as they weren't for us. But we couldn't adjust to the thought of "doing nothing," another term for "watch and wait," so my husband enrolled in a trial of a melanoma vaccine. If trials are available to you, give them some consideration. At least your husband would be seeing a melanoma specialist on a regular schedule, and scans are usually part of the trial. It's worth thinking about …
I hope this is helpful and not just a long answer … please let us know what's next for you.
Best of luck –
Hazel
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- August 23, 2014 at 12:48 am
Hi, so sorry you've had to join us here but welcome. The long and detailed post you wrote will help those with more knowledge to advise you. However, as you noted, it appears that this condition is very rare, so perhaps answers to your questions will need to come from your next consult.
I'm not one of the MPIP members with a lot of experience or medical knowledge, but I have a few reactions and suggestions based on your story.
First, about the diagnosis: is it metastatic or primary? You may never know – and there are others here (including my husband) for whom this is just a fact of life. Our first diagnosis was metastatic – but after consultations with three melanoma specialists, we now believe that this was the primary site – a "cyst" under the skin with no known mainfestation on the epidermis. That may improve the prognosis, but the uncertainty remains – along with the fact that we will never know. In the long run, it probably doesn't matter very much. The important thing is that he is two years with no evidence of disease. We are living every day, planning vacations for the next year, and looking forward to life together, however long.
Next, about who to consult with: I suggest you look for a specialist in "melanoma of unknown primary." For our second opinion we consulted with Dr. William Sharfman at Johns Hopkins, whose bio said that was one area of focus for his practice. (Now it says he specializes in complex and high-risk cases.) He spent a long time with us, reviewing the pathology reports, and explained everything – what he believed was going on, what other possibilities were, and potential treatments. He was happy we were seeking even one more opinion – and my guess is that the top clinical practitioners and researchers are all happy to consult with each other on cases like this. Our third consultation was with Dr. Lynn Schuchter, chair of the hematology/oncology department at University of Pennsylvania and also of the Scientific Advisory Committee for the Melanoma Reseasrch Foundation. She went through it all with us again and gave us even more information about the possible treatments, explaining the difference between the different melanoma vaccines that were in trials at the time.
My thoughts after seeing the three melanoma specialists we consulted are that with a complex and uncertain case like this, you want to be seen by one of the top people in one of the top programs. Yes it is worth it to go to MD Anderson, Memorial Sloan Kettering, Moffitt, or Johns Hopkins. Get to the top person you can get an appointment with, even if it takes a week or two longer.
Third, I'm not that crazy about PET scans – but what about more frequent CT scans? I think they are part of the "watch and wait" regimen, at least for the first year or two. Perhaps a melanoma specialist can convince your insurance company …
And finally – I am not up on what clinical trials are open at this time, but have you considered looking into a vaccine trial? If your husband has no evidence of disease, other treatments (yervoy, anti-PD1) probably won't be possible – as they weren't for us. But we couldn't adjust to the thought of "doing nothing," another term for "watch and wait," so my husband enrolled in a trial of a melanoma vaccine. If trials are available to you, give them some consideration. At least your husband would be seeing a melanoma specialist on a regular schedule, and scans are usually part of the trial. It's worth thinking about …
I hope this is helpful and not just a long answer … please let us know what's next for you.
Best of luck –
Hazel
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- August 23, 2014 at 4:40 pm
It sounds like the folks here have given lots of good advice. I'm not sure what else I can add except they never found my primary either. I was stage 4 from day 1 via the biopsy in my t10 vertebrae. Unfortunately a couple days later the pet scan showed other spots so it is wonderful your husband's pet scan was clean. After surgery of melanoma they sometimes do radiation to make sure they got every cell. I've not had surgery's so I'm not sure how common that is. But I've certainly had radiation. In my opinion the vaccine mentioned would be a much better option. If you can it would probably be good to consult with someone at MSK or Moffit or someone like that. Maybe both if possible. If it was me starting over I would go to Moffit. Doing nothing although NED is not a good option in my opinion. Moffit typically has some of those vaccines and things others were talking about. Dunno if that helps.
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- August 23, 2014 at 4:40 pm
It sounds like the folks here have given lots of good advice. I'm not sure what else I can add except they never found my primary either. I was stage 4 from day 1 via the biopsy in my t10 vertebrae. Unfortunately a couple days later the pet scan showed other spots so it is wonderful your husband's pet scan was clean. After surgery of melanoma they sometimes do radiation to make sure they got every cell. I've not had surgery's so I'm not sure how common that is. But I've certainly had radiation. In my opinion the vaccine mentioned would be a much better option. If you can it would probably be good to consult with someone at MSK or Moffit or someone like that. Maybe both if possible. If it was me starting over I would go to Moffit. Doing nothing although NED is not a good option in my opinion. Moffit typically has some of those vaccines and things others were talking about. Dunno if that helps.
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- August 23, 2014 at 4:40 pm
It sounds like the folks here have given lots of good advice. I'm not sure what else I can add except they never found my primary either. I was stage 4 from day 1 via the biopsy in my t10 vertebrae. Unfortunately a couple days later the pet scan showed other spots so it is wonderful your husband's pet scan was clean. After surgery of melanoma they sometimes do radiation to make sure they got every cell. I've not had surgery's so I'm not sure how common that is. But I've certainly had radiation. In my opinion the vaccine mentioned would be a much better option. If you can it would probably be good to consult with someone at MSK or Moffit or someone like that. Maybe both if possible. If it was me starting over I would go to Moffit. Doing nothing although NED is not a good option in my opinion. Moffit typically has some of those vaccines and things others were talking about. Dunno if that helps.
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- August 23, 2014 at 4:58 pm
Hi, so sorry you have to join us but hopefully we will all get through. Like Hazel and you, my husband who is 48 found a large nodule on his back that grew quickly. Actually my daughter mentioned it while he was in the pool, but I had not seen it. This was in February of this year. He went into the dermatologist, without telling me :), and got a punch biopsy. The depth at that time was 5.2 and the pathology report actually mentioned Primary Dermal Melanoma. When he got his WLE, the breslow depth was 19 mm and the tumor was 22 x 20 mm, very large. Like your husband, all scans came back with no evidence of disease. There was no epidermal component so our oncologist here at MD Anderson said if she could stage it, she would 3c or 4 but it could be 2b as well. Very hard not to know. And we are somewhere between metastatic nodular melanoma with no known primary and primary dermal melanoma which have pretty different prognosis.
From the research and my own anectodal experience, I get the feeling that in the medical melanoma oncology world, there is some debate over the diagnosis of Primary Dermal Melanoma. My gut feeling is that since it's primarily a clinical diagnosis at this point (even though they are trying to determine if there are any immunohistochemical markers that will help, but to date it presents like metastatic melanoma) , our oncologist is hestitant to use this terminology. Basically, what I feel with primary dermal is that it's somewhat of a retroactive diagnosis at this point since you have to wait and watch what happens.
But Hazel is absolutely right, the treatment and follow-up path is the same so the diagnosis is less important. Which is easier said than done in the very beginning when we hear the words metastatic melanoma (I couldn't stop crying for several days until we got more information on his pathology report) but you definitely become more able to do this as time goes by.
We too are in a wait and watch, and if a vaccine trial opens up (there isn't availability at MD Anderson right now) we will join a trial. He will get his next set of scans in October. At this point, I'm more concerned about the radiation from scanning so frequently but this is the price we have to pay for the next couple of years since he is so high risk for recurrence or progression.
Also, we live right here by MD Anderson in Houston and I was a medical librarian so know many of the research librarians here at both MD Anderson and the Medical Center. If you or anyone else need a place to stay, our home is open.
Jackie
I've got a list of the relevant research in Primary Dermal as well as Solitary Dermal Melanoma. I think they keep updating the terminology but essentially the same thing. Let me know if you need any of the research, so people find comfort in the research, others do not.
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- August 23, 2014 at 4:58 pm
Hi, so sorry you have to join us but hopefully we will all get through. Like Hazel and you, my husband who is 48 found a large nodule on his back that grew quickly. Actually my daughter mentioned it while he was in the pool, but I had not seen it. This was in February of this year. He went into the dermatologist, without telling me :), and got a punch biopsy. The depth at that time was 5.2 and the pathology report actually mentioned Primary Dermal Melanoma. When he got his WLE, the breslow depth was 19 mm and the tumor was 22 x 20 mm, very large. Like your husband, all scans came back with no evidence of disease. There was no epidermal component so our oncologist here at MD Anderson said if she could stage it, she would 3c or 4 but it could be 2b as well. Very hard not to know. And we are somewhere between metastatic nodular melanoma with no known primary and primary dermal melanoma which have pretty different prognosis.
From the research and my own anectodal experience, I get the feeling that in the medical melanoma oncology world, there is some debate over the diagnosis of Primary Dermal Melanoma. My gut feeling is that since it's primarily a clinical diagnosis at this point (even though they are trying to determine if there are any immunohistochemical markers that will help, but to date it presents like metastatic melanoma) , our oncologist is hestitant to use this terminology. Basically, what I feel with primary dermal is that it's somewhat of a retroactive diagnosis at this point since you have to wait and watch what happens.
But Hazel is absolutely right, the treatment and follow-up path is the same so the diagnosis is less important. Which is easier said than done in the very beginning when we hear the words metastatic melanoma (I couldn't stop crying for several days until we got more information on his pathology report) but you definitely become more able to do this as time goes by.
We too are in a wait and watch, and if a vaccine trial opens up (there isn't availability at MD Anderson right now) we will join a trial. He will get his next set of scans in October. At this point, I'm more concerned about the radiation from scanning so frequently but this is the price we have to pay for the next couple of years since he is so high risk for recurrence or progression.
Also, we live right here by MD Anderson in Houston and I was a medical librarian so know many of the research librarians here at both MD Anderson and the Medical Center. If you or anyone else need a place to stay, our home is open.
Jackie
I've got a list of the relevant research in Primary Dermal as well as Solitary Dermal Melanoma. I think they keep updating the terminology but essentially the same thing. Let me know if you need any of the research, so people find comfort in the research, others do not.
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- August 24, 2014 at 3:53 am
I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!
2009 update says:AbstractBACKGROUND:Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.METHODS:Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.RESULTS:Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).CONCLUSIONS:SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy. -
- August 24, 2014 at 3:53 am
I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!
2009 update says:AbstractBACKGROUND:Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.METHODS:Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.RESULTS:Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).CONCLUSIONS:SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy. -
- August 24, 2014 at 3:53 am
I just found this study on an old thread, wondering if this could be what we are experiencing? I'm going to look into it further and look up the docs responsible for the study to see if I can contact them. It's so amazing the amount of support and knowledge I have gained in the last 24 hours. Thank you all so much!
2009 update says:AbstractBACKGROUND:Solitary dermal melanoma (SDM) is confined to the dermal and/or subcutaneous tissue without an epidermal component. It is unclear whether this lesion is a subtype of primary melanoma or distant cutaneous metastasis from an unknown primary. We evaluated our large experience to determine the prognosis and optimal management of SDM.METHODS:Our melanoma referral center's database of prospectively acquired records was used for identification and clinicopathologic analysis of patients presenting with SDM between 1971 and 2005.RESULTS:Of 12,817 database patients seen during a 34-year period, 101 (0.8%) had SDM. Of 92 patients free of distant metastasis on initial presentation, 55 (60%) were observed and 37 (40%) underwent surgical nodal staging: regional metastases were identified in 7 (19%). Nodal recurrence occurred in 1 of 30 patients (3.3%) with histopathology-negative nodes compared with 13 of 55 patients (24%) who underwent nodal observation instead of nodal staging. Thus, 21 of 92 patients (23%) had nodal metastasis identified during surgical nodal staging or postoperative nodal observation. At a median follow-up of 68 months, estimated 5-year overall survival rate was 73% for 71 patients with localized disease versus 67% for 21 patients with regional disease (P=0.25) versus 22% for 9 patients with distant disease (P=0.009, regional versus distant disease).CONCLUSIONS:SDM resembles intermediate-thickness primary cutaneous melanoma with respect to prognostic characteristics and clinical evolution, but its rate of distant metastasis justifies radiographic staging and its high rate of regional node metastasis justifies wide excision and sentinel node biopsy.
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- August 23, 2014 at 4:58 pm
Hi, so sorry you have to join us but hopefully we will all get through. Like Hazel and you, my husband who is 48 found a large nodule on his back that grew quickly. Actually my daughter mentioned it while he was in the pool, but I had not seen it. This was in February of this year. He went into the dermatologist, without telling me :), and got a punch biopsy. The depth at that time was 5.2 and the pathology report actually mentioned Primary Dermal Melanoma. When he got his WLE, the breslow depth was 19 mm and the tumor was 22 x 20 mm, very large. Like your husband, all scans came back with no evidence of disease. There was no epidermal component so our oncologist here at MD Anderson said if she could stage it, she would 3c or 4 but it could be 2b as well. Very hard not to know. And we are somewhere between metastatic nodular melanoma with no known primary and primary dermal melanoma which have pretty different prognosis.
From the research and my own anectodal experience, I get the feeling that in the medical melanoma oncology world, there is some debate over the diagnosis of Primary Dermal Melanoma. My gut feeling is that since it's primarily a clinical diagnosis at this point (even though they are trying to determine if there are any immunohistochemical markers that will help, but to date it presents like metastatic melanoma) , our oncologist is hestitant to use this terminology. Basically, what I feel with primary dermal is that it's somewhat of a retroactive diagnosis at this point since you have to wait and watch what happens.
But Hazel is absolutely right, the treatment and follow-up path is the same so the diagnosis is less important. Which is easier said than done in the very beginning when we hear the words metastatic melanoma (I couldn't stop crying for several days until we got more information on his pathology report) but you definitely become more able to do this as time goes by.
We too are in a wait and watch, and if a vaccine trial opens up (there isn't availability at MD Anderson right now) we will join a trial. He will get his next set of scans in October. At this point, I'm more concerned about the radiation from scanning so frequently but this is the price we have to pay for the next couple of years since he is so high risk for recurrence or progression.
Also, we live right here by MD Anderson in Houston and I was a medical librarian so know many of the research librarians here at both MD Anderson and the Medical Center. If you or anyone else need a place to stay, our home is open.
Jackie
I've got a list of the relevant research in Primary Dermal as well as Solitary Dermal Melanoma. I think they keep updating the terminology but essentially the same thing. Let me know if you need any of the research, so people find comfort in the research, others do not.
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- August 24, 2014 at 2:51 am
You could check into adjuvant trials using Ipi (Yervoy) there are soe underway.
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- August 24, 2014 at 2:51 am
You could check into adjuvant trials using Ipi (Yervoy) there are soe underway.
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- August 24, 2014 at 2:51 am
You could check into adjuvant trials using Ipi (Yervoy) there are soe underway.
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