Mucosal Melanoma Newly Diagnosed

Hi Heidi, my father has been wrestling with mucosal melanoma since 2007.  One tip I can share is to ask the oncologist to see if what sort of genentic testing on the tissue they're removing.  For instance, there's a mutation called cKit that appears more frequently in mucosal melanoma than other forms which can be used in treatment.  I would also suggest, if you weren't already, seek treatment at a major cancer center because the doctors there have wider access to treatments and facilities and knowledge and experience.  Hope those tips help.

J

Hi Heidi, my father has been wrestling with mucosal melanoma since 2007.  One tip I can share is to ask the oncologist to see if what sort of genentic testing on the tissue they're removing.  For instance, there's a mutation called cKit that appears more frequently in mucosal melanoma than other forms which can be used in treatment.  I would also suggest, if you weren't already, seek treatment at a major cancer center because the doctors there have wider access to treatments and facilities and knowledge and experience.  Hope those tips help.

J

Hi Heidi, my father has been wrestling with mucosal melanoma since 2007.  One tip I can share is to ask the oncologist to see if what sort of genentic testing on the tissue they're removing.  For instance, there's a mutation called cKit that appears more frequently in mucosal melanoma than other forms which can be used in treatment.  I would also suggest, if you weren't already, seek treatment at a major cancer center because the doctors there have wider access to treatments and facilities and knowledge and experience.  Hope those tips help.

J

Hi Heidi!  My name is Lori and I was diagnosed in December, 2014 with mucosal melanoma of the nasal/sinus cavity.  I had a polyp removed in my right nostril which turned out to be the melanoma.  I underwent 6 weeks of radiation.  As you say, this stuff can be microscopic and I had a PET scan in December that didn't show anything.  In April, I had my next PET scan and there was another tumor at the back of my nose and there was concern about some lymph nodes in my neck.  The tumor was removed and 16 lymph nodes – the lymph nodes were negative.  I just got back from my doctor who is recommending immunotherapy.  It's 4 infusions – one every 3 weeks.  Originally, I went on the American Cancer Society website under Finding Support and Treatment there are lists of questions to ask your doctor.  I asked my doctor how many cases of mucosal melanoma has he treated, since it's so rare.  I asked him how those patients are doing now.  Did they have the same immunotherapy treatment?  I always ask my doctor if he would recommend this treatment/surgery to a family member.  I think whatever "pops" into your head, you ask.  You have to be your own advocate.  I asked about what side effects go away and what may be permanent.  What are they recommending for adjuvant treament?  What happens if you don't follow their recommendation?  I try to write up a list of questions and then, whatever pops into my head I ask too.  Make sur eyou have someone with you too.  It helps to have an extra set of ears….  Sometimes I don't quite understand what he's explaining. 

Hi Heidi!  My name is Lori and I was diagnosed in December, 2014 with mucosal melanoma of the nasal/sinus cavity.  I had a polyp removed in my right nostril which turned out to be the melanoma.  I underwent 6 weeks of radiation.  As you say, this stuff can be microscopic and I had a PET scan in December that didn't show anything.  In April, I had my next PET scan and there was another tumor at the back of my nose and there was concern about some lymph nodes in my neck.  The tumor was removed and 16 lymph nodes – the lymph nodes were negative.  I just got back from my doctor who is recommending immunotherapy.  It's 4 infusions – one every 3 weeks.  Originally, I went on the American Cancer Society website under Finding Support and Treatment there are lists of questions to ask your doctor.  I asked my doctor how many cases of mucosal melanoma has he treated, since it's so rare.  I asked him how those patients are doing now.  Did they have the same immunotherapy treatment?  I always ask my doctor if he would recommend this treatment/surgery to a family member.  I think whatever "pops" into your head, you ask.  You have to be your own advocate.  I asked about what side effects go away and what may be permanent.  What are they recommending for adjuvant treament?  What happens if you don't follow their recommendation?  I try to write up a list of questions and then, whatever pops into my head I ask too.  Make sur eyou have someone with you too.  It helps to have an extra set of ears….  Sometimes I don't quite understand what he's explaining. 

Hi Heidi!  My name is Lori and I was diagnosed in December, 2014 with mucosal melanoma of the nasal/sinus cavity.  I had a polyp removed in my right nostril which turned out to be the melanoma.  I underwent 6 weeks of radiation.  As you say, this stuff can be microscopic and I had a PET scan in December that didn't show anything.  In April, I had my next PET scan and there was another tumor at the back of my nose and there was concern about some lymph nodes in my neck.  The tumor was removed and 16 lymph nodes – the lymph nodes were negative.  I just got back from my doctor who is recommending immunotherapy.  It's 4 infusions – one every 3 weeks.  Originally, I went on the American Cancer Society website under Finding Support and Treatment there are lists of questions to ask your doctor.  I asked my doctor how many cases of mucosal melanoma has he treated, since it's so rare.  I asked him how those patients are doing now.  Did they have the same immunotherapy treatment?  I always ask my doctor if he would recommend this treatment/surgery to a family member.  I think whatever "pops" into your head, you ask.  You have to be your own advocate.  I asked about what side effects go away and what may be permanent.  What are they recommending for adjuvant treament?  What happens if you don't follow their recommendation?  I try to write up a list of questions and then, whatever pops into my head I ask too.  Make sur eyou have someone with you too.  It helps to have an extra set of ears….  Sometimes I don't quite understand what he's explaining. 

Hi Heidi,

I have had 3 vulvectomies since 2013 for vulvar mucosal melanoma, the first right sided radical with clitorectomy, and the second two left.  I did write something on vulvectomy over at Cancer Forums (CheriD is my user name there) if you are interested.  I started that thread hoping to help other women going through vulvectomies, so it is my experience through the 3 surgeries basically.

My melanoma was superficial spreading and fairly thin (1 mm) but I also had regression, which means there is no way to know how deep it may have been.  It had probably been there years before I finally discovered it.  I had bilateral sentinel lymph node inguinal biopsies and both were clear, and my last PET CT in June last year was clear.  A year after my first radical vulvectomy, melanoma in situ was discovered on the opposite side so I had a partial left side vulvectomy in 2014.  A few weeks ago I celebrated my third year, since initial diagnosis, of having no sign of disease.

I agree with the recommendation to be seen at melanoma specialty center if at all possible.  A resource for this: http://melanomainternational.org/web-resources/cancer-centers/

As far as questions, I can't think of anything you haven't already mentioned, but in addition to being seen by a melanoma specialist, my recommendation, in hindsight, is to realize that you may be called on to advocate for yourself and will sometimes need to be assertive.  You are your own best advocate!  Make sure you are getting results back in a timely manner, that followup appointments are made, that it is clear who will be following you and how often.  So far, it sounds like your care has been excellent.  I was lucky and overall, with a few little glitches, mine was, too.   As above, you may want to ask about the C-kit mutation and what other things might be considered now in case you need treatment in the future,  The fact that your PET and MRI are clear is very good!  I hope your nodes will be clear as well, in which case there are people here who have been followed closely for quite a few years with mucosal melanoma with such a diagnosis.  As I said, I am at 3 years as of May 6.  And in fact, there are people on this forum who have done well for years now with lymph node involvement/stage 3 at initial diagnosis, and it seems to me that this is a more hopeful time than ever before in the treatment of melanoma of any type.

Good luck to you! 

Cheri

Hi Heidi,

I have had 3 vulvectomies since 2013 for vulvar mucosal melanoma, the first right sided radical with clitorectomy, and the second two left.  I did write something on vulvectomy over at Cancer Forums (CheriD is my user name there) if you are interested.  I started that thread hoping to help other women going through vulvectomies, so it is my experience through the 3 surgeries basically.

My melanoma was superficial spreading and fairly thin (1 mm) but I also had regression, which means there is no way to know how deep it may have been.  It had probably been there years before I finally discovered it.  I had bilateral sentinel lymph node inguinal biopsies and both were clear, and my last PET CT in June last year was clear.  A year after my first radical vulvectomy, melanoma in situ was discovered on the opposite side so I had a partial left side vulvectomy in 2014.  A few weeks ago I celebrated my third year, since initial diagnosis, of having no sign of disease.

I agree with the recommendation to be seen at melanoma specialty center if at all possible.  A resource for this: http://melanomainternational.org/web-resources/cancer-centers/

As far as questions, I can't think of anything you haven't already mentioned, but in addition to being seen by a melanoma specialist, my recommendation, in hindsight, is to realize that you may be called on to advocate for yourself and will sometimes need to be assertive.  You are your own best advocate!  Make sure you are getting results back in a timely manner, that followup appointments are made, that it is clear who will be following you and how often.  So far, it sounds like your care has been excellent.  I was lucky and overall, with a few little glitches, mine was, too.   As above, you may want to ask about the C-kit mutation and what other things might be considered now in case you need treatment in the future,  The fact that your PET and MRI are clear is very good!  I hope your nodes will be clear as well, in which case there are people here who have been followed closely for quite a few years with mucosal melanoma with such a diagnosis.  As I said, I am at 3 years as of May 6.  And in fact, there are people on this forum who have done well for years now with lymph node involvement/stage 3 at initial diagnosis, and it seems to me that this is a more hopeful time than ever before in the treatment of melanoma of any type.

Good luck to you! 

Cheri

Hi Heidi,

I have had 3 vulvectomies since 2013 for vulvar mucosal melanoma, the first right sided radical with clitorectomy, and the second two left.  I did write something on vulvectomy over at Cancer Forums (CheriD is my user name there) if you are interested.  I started that thread hoping to help other women going through vulvectomies, so it is my experience through the 3 surgeries basically.

My melanoma was superficial spreading and fairly thin (1 mm) but I also had regression, which means there is no way to know how deep it may have been.  It had probably been there years before I finally discovered it.  I had bilateral sentinel lymph node inguinal biopsies and both were clear, and my last PET CT in June last year was clear.  A year after my first radical vulvectomy, melanoma in situ was discovered on the opposite side so I had a partial left side vulvectomy in 2014.  A few weeks ago I celebrated my third year, since initial diagnosis, of having no sign of disease.

I agree with the recommendation to be seen at melanoma specialty center if at all possible.  A resource for this: http://melanomainternational.org/web-resources/cancer-centers/

As far as questions, I can't think of anything you haven't already mentioned, but in addition to being seen by a melanoma specialist, my recommendation, in hindsight, is to realize that you may be called on to advocate for yourself and will sometimes need to be assertive.  You are your own best advocate!  Make sure you are getting results back in a timely manner, that followup appointments are made, that it is clear who will be following you and how often.  So far, it sounds like your care has been excellent.  I was lucky and overall, with a few little glitches, mine was, too.   As above, you may want to ask about the C-kit mutation and what other things might be considered now in case you need treatment in the future,  The fact that your PET and MRI are clear is very good!  I hope your nodes will be clear as well, in which case there are people here who have been followed closely for quite a few years with mucosal melanoma with such a diagnosis.  As I said, I am at 3 years as of May 6.  And in fact, there are people on this forum who have done well for years now with lymph node involvement/stage 3 at initial diagnosis, and it seems to me that this is a more hopeful time than ever before in the treatment of melanoma of any type.

Good luck to you! 

Cheri

Hello Heidi – I am sorry about your diagnosis.

I was diagnosed with vaginal mucosal melanoma in 2012, local lymphnode involvement. I had surgery and chemotherapy and have not had a recurrence. 

At this point you are a member of a very small club. The oncologist who diagnosed my cancer said that he was not qualified to treat it and he referred me to Memorial Sloan Kettering which is the type of institution that we are talking about when we say that you should be going to a major cancer center where they treat the rare cases. Other such institutions include Dana Farber, Moffitt, MD Anderson, Johns Hopkins, Mayo and others of that nature. These are the places where they are involved in the research. My oncologist at MSK told me that he has seen mucosal melanoma – not often – but he has seen it and treated it. The oncologist at the local "cancer center" who referred me on to MSK had only seen it twice in his career and had never treated it.

The most valuable thing that the oncologist at the local "cancer center" did for me was to have his staff make the appointment at MSK so I could be seen right away. At that point, I had never even heard of mucosal melanoma and I am grateful for his intervention.

Mucosal melanoma, as I am sure you know already, is a different disease than melanoma skin cancer. The specifications about depth and margins are not relevant to you – Your goal is to get the disease  out of your body surgically and treat it adjuvantly to keep it from coming back. You deserve to be treated by someone who has actually done this.

Anyone on this sight knows of the shock you have experienced when you first researched this diagnosis on the internet. Please know that so much has changed in the last three years alone – what you see on the internet is old and not relevant to you. There actually is a lot of encouraging news out there – and you will get quite good at finding it. Please just give yourself the advantage of being treated in a place where they get the news first.

I wish you all the best. Please reach out to us with any questions or concerns.

Mary

Hello Heidi – I am sorry about your diagnosis.

I was diagnosed with vaginal mucosal melanoma in 2012, local lymphnode involvement. I had surgery and chemotherapy and have not had a recurrence. 

At this point you are a member of a very small club. The oncologist who diagnosed my cancer said that he was not qualified to treat it and he referred me to Memorial Sloan Kettering which is the type of institution that we are talking about when we say that you should be going to a major cancer center where they treat the rare cases. Other such institutions include Dana Farber, Moffitt, MD Anderson, Johns Hopkins, Mayo and others of that nature. These are the places where they are involved in the research. My oncologist at MSK told me that he has seen mucosal melanoma – not often – but he has seen it and treated it. The oncologist at the local "cancer center" who referred me on to MSK had only seen it twice in his career and had never treated it.

The most valuable thing that the oncologist at the local "cancer center" did for me was to have his staff make the appointment at MSK so I could be seen right away. At that point, I had never even heard of mucosal melanoma and I am grateful for his intervention.

Mucosal melanoma, as I am sure you know already, is a different disease than melanoma skin cancer. The specifications about depth and margins are not relevant to you – Your goal is to get the disease  out of your body surgically and treat it adjuvantly to keep it from coming back. You deserve to be treated by someone who has actually done this.

Anyone on this sight knows of the shock you have experienced when you first researched this diagnosis on the internet. Please know that so much has changed in the last three years alone – what you see on the internet is old and not relevant to you. There actually is a lot of encouraging news out there – and you will get quite good at finding it. Please just give yourself the advantage of being treated in a place where they get the news first.

I wish you all the best. Please reach out to us with any questions or concerns.

Mary

Hello Heidi – I am sorry about your diagnosis.

I was diagnosed with vaginal mucosal melanoma in 2012, local lymphnode involvement. I had surgery and chemotherapy and have not had a recurrence. 

At this point you are a member of a very small club. The oncologist who diagnosed my cancer said that he was not qualified to treat it and he referred me to Memorial Sloan Kettering which is the type of institution that we are talking about when we say that you should be going to a major cancer center where they treat the rare cases. Other such institutions include Dana Farber, Moffitt, MD Anderson, Johns Hopkins, Mayo and others of that nature. These are the places where they are involved in the research. My oncologist at MSK told me that he has seen mucosal melanoma – not often – but he has seen it and treated it. The oncologist at the local "cancer center" who referred me on to MSK had only seen it twice in his career and had never treated it.

The most valuable thing that the oncologist at the local "cancer center" did for me was to have his staff make the appointment at MSK so I could be seen right away. At that point, I had never even heard of mucosal melanoma and I am grateful for his intervention.

Mucosal melanoma, as I am sure you know already, is a different disease than melanoma skin cancer. The specifications about depth and margins are not relevant to you – Your goal is to get the disease  out of your body surgically and treat it adjuvantly to keep it from coming back. You deserve to be treated by someone who has actually done this.

Anyone on this sight knows of the shock you have experienced when you first researched this diagnosis on the internet. Please know that so much has changed in the last three years alone – what you see on the internet is old and not relevant to you. There actually is a lot of encouraging news out there – and you will get quite good at finding it. Please just give yourself the advantage of being treated in a place where they get the news first.

I wish you all the best. Please reach out to us with any questions or concerns.

Mary