Anal Melanoma

The internet is the worst. Try not to do too much Googling.. it won't give you accurate statistics or info. The doctors at MD Anderson will give you all the info you'll need and if you need clarifications or have questions before your appointment, this forum is a much better place to go for answers than the general web. When I was first diagnosed I was advised by family to stay off Google… and it was hard, because it feels so easy to type something in and see what comes up, but can be so frightening and anxiety inducing, I am glad I listened to them. 

Take care,

The internet is the worst. Try not to do too much Googling.. it won't give you accurate statistics or info. The doctors at MD Anderson will give you all the info you'll need and if you need clarifications or have questions before your appointment, this forum is a much better place to go for answers than the general web. When I was first diagnosed I was advised by family to stay off Google… and it was hard, because it feels so easy to type something in and see what comes up, but can be so frightening and anxiety inducing, I am glad I listened to them. 

Take care,

The internet is the worst. Try not to do too much Googling.. it won't give you accurate statistics or info. The doctors at MD Anderson will give you all the info you'll need and if you need clarifications or have questions before your appointment, this forum is a much better place to go for answers than the general web. When I was first diagnosed I was advised by family to stay off Google… and it was hard, because it feels so easy to type something in and see what comes up, but can be so frightening and anxiety inducing, I am glad I listened to them. 

Take care,

Cindy – Could you post some of what the mucosal specialist told you?  Would you mind sharing his/her name?  Am interested to hear what the specialists are saying as it changes rapidly with all the progress being made.  I have mucosal melanoma but have not yet been to a mucosal specialist, wondering what they said that differed from your Kaiser providers.

T. Bailey – you are on the right track seeing a specialist at MD Anderson.  I second not to Google at this stage.  I would use it only to inform yourself on the basics and ignore past, outdated statistics, which probably includes anything before about 2013.  It is a fact that most people who are doing well do not post on internet forums, so you tend to hear only the worst.  This is a wonderful forum for support!  Lots of good people here.  Good luck to you!

Cindy – Could you post some of what the mucosal specialist told you?  Would you mind sharing his/her name?  Am interested to hear what the specialists are saying as it changes rapidly with all the progress being made.  I have mucosal melanoma but have not yet been to a mucosal specialist, wondering what they said that differed from your Kaiser providers.

T. Bailey – you are on the right track seeing a specialist at MD Anderson.  I second not to Google at this stage.  I would use it only to inform yourself on the basics and ignore past, outdated statistics, which probably includes anything before about 2013.  It is a fact that most people who are doing well do not post on internet forums, so you tend to hear only the worst.  This is a wonderful forum for support!  Lots of good people here.  Good luck to you!

We saw Dr. Antoni Ribas at UCLA.  He told us to not do surgery and go straight to an ipi/nivo combo because she has a inguinal lymph node that lit up on her PET scan, which means the cancer has already traveled. We thought that seeing a specialist made a difference because they understood the urgency of our situation, took an in depth look at her medical history before making a treatment plan, and understood the difference between mucosal and cutaneous melanoma.

Kaiser had originally told us to do an APR resection and lymph node dissection, after which we'd be offered an immunotherapy or biochemotherapy treatment (we learned through these boards that biochemo is outdated and that people really shouldn't be doing that treatment as their first option anymore).  The main difference with Kaiser is that some of the doctors have no idea what mucosal melanoma is, some treat it exactly like cutaneous melanoma, and some only know the outdated stats/treatments on mucosal melanoma.  We only know this because the first Kaiser surgeon that we spoke to told us that my mother only has 10-15 months and that he couldn't offer her more than just palliative treatment to alleviate her pain for that time. 

We sought a second opinion within the network (only after many many phone calls and delays because of their administrative requirements to get a formal referral through your PCP before you can see any particular specialist).  In doing so, I found out that we only had one overworked surgical oncologist available in the entire county even though we live in Orange County, CA.  We were not able to get an appointment with that one oncologist until after a month after her diagnosis.  Kaiser also repeatedly informed the first surgeon about our attempts to get a second opinion, despite our attempts to avoid confronation.  He felt offended and told us that we needed to face the "sad reality" of the situation.  Finally after we got our second opinion, that doctor told us she would have a chance for survival if she got a complete APR resection and groin lymph node dissection.  He proudly told us that their longest living anal melanoma patient lived for 2 years after diagnosis. At no point did they allow us to see an oncologist first because Kaiser requires you to see the surgeon before you get any treatment from an oncologist.  We had to really fight them to let her see an oncologist–who also supported the surgery-first approach (although I mainly suspect that he was deferring to the surgeon's opinion). 

There was absolutely no sense of urgency within the Kaiser system (although some of the admin people were very kind and tried very hard within the limiations of their positions to help us) and nobody would expedite her CT, PET, MRI scans, etc…  We were in the process of fighting for an expedited surgery date when we started posting on these boards and everyone encouraged us to go to a specialist.  Once we saw Dr. Ribas and took his opinion for immunotherapy to the oncologist at Kaiser, the oncologist completely AGREED that avoiding surgery was the better option for her.  To this day I don't know if Kaiser (1) wrote her off as dead, (2) is just an administrative mess due to how it is structured, or (3) is just full of incompetent doctors.  I just know that if we didn't advocate for ourselves, Kaiser would have botched her care.  Supposedly there is a process to go out of network through Kaiser.  However, in our experience, there is a lot of red tape and when time is of the essence in a melanoma case, you can't wait for them to come around.

The funny thing is that we used to love Kaiser before all of this happened.  My parents loved that it was run like a machine, that they could get appointments quickly, email their doctors through a single portal, etc… If you have something common like breast cancer, maybe they still run that program like a well oiled machine.  But if you have a rare cancer like mucosal melanoma, you definitely need to get out as soon as possible.  This is our experience, however, maybe others have found it ok.

We saw Dr. Antoni Ribas at UCLA.  He told us to not do surgery and go straight to an ipi/nivo combo because she has a inguinal lymph node that lit up on her PET scan, which means the cancer has already traveled. We thought that seeing a specialist made a difference because they understood the urgency of our situation, took an in depth look at her medical history before making a treatment plan, and understood the difference between mucosal and cutaneous melanoma.

Kaiser had originally told us to do an APR resection and lymph node dissection, after which we'd be offered an immunotherapy or biochemotherapy treatment (we learned through these boards that biochemo is outdated and that people really shouldn't be doing that treatment as their first option anymore).  The main difference with Kaiser is that some of the doctors have no idea what mucosal melanoma is, some treat it exactly like cutaneous melanoma, and some only know the outdated stats/treatments on mucosal melanoma.  We only know this because the first Kaiser surgeon that we spoke to told us that my mother only has 10-15 months and that he couldn't offer her more than just palliative treatment to alleviate her pain for that time. 

We sought a second opinion within the network (only after many many phone calls and delays because of their administrative requirements to get a formal referral through your PCP before you can see any particular specialist).  In doing so, I found out that we only had one overworked surgical oncologist available in the entire county even though we live in Orange County, CA.  We were not able to get an appointment with that one oncologist until after a month after her diagnosis.  Kaiser also repeatedly informed the first surgeon about our attempts to get a second opinion, despite our attempts to avoid confronation.  He felt offended and told us that we needed to face the "sad reality" of the situation.  Finally after we got our second opinion, that doctor told us she would have a chance for survival if she got a complete APR resection and groin lymph node dissection.  He proudly told us that their longest living anal melanoma patient lived for 2 years after diagnosis. At no point did they allow us to see an oncologist first because Kaiser requires you to see the surgeon before you get any treatment from an oncologist.  We had to really fight them to let her see an oncologist–who also supported the surgery-first approach (although I mainly suspect that he was deferring to the surgeon's opinion). 

There was absolutely no sense of urgency within the Kaiser system (although some of the admin people were very kind and tried very hard within the limiations of their positions to help us) and nobody would expedite her CT, PET, MRI scans, etc…  We were in the process of fighting for an expedited surgery date when we started posting on these boards and everyone encouraged us to go to a specialist.  Once we saw Dr. Ribas and took his opinion for immunotherapy to the oncologist at Kaiser, the oncologist completely AGREED that avoiding surgery was the better option for her.  To this day I don't know if Kaiser (1) wrote her off as dead, (2) is just an administrative mess due to how it is structured, or (3) is just full of incompetent doctors.  I just know that if we didn't advocate for ourselves, Kaiser would have botched her care.  Supposedly there is a process to go out of network through Kaiser.  However, in our experience, there is a lot of red tape and when time is of the essence in a melanoma case, you can't wait for them to come around.

The funny thing is that we used to love Kaiser before all of this happened.  My parents loved that it was run like a machine, that they could get appointments quickly, email their doctors through a single portal, etc… If you have something common like breast cancer, maybe they still run that program like a well oiled machine.  But if you have a rare cancer like mucosal melanoma, you definitely need to get out as soon as possible.  This is our experience, however, maybe others have found it ok.

We saw Dr. Antoni Ribas at UCLA.  He told us to not do surgery and go straight to an ipi/nivo combo because she has a inguinal lymph node that lit up on her PET scan, which means the cancer has already traveled. We thought that seeing a specialist made a difference because they understood the urgency of our situation, took an in depth look at her medical history before making a treatment plan, and understood the difference between mucosal and cutaneous melanoma.

Kaiser had originally told us to do an APR resection and lymph node dissection, after which we'd be offered an immunotherapy or biochemotherapy treatment (we learned through these boards that biochemo is outdated and that people really shouldn't be doing that treatment as their first option anymore).  The main difference with Kaiser is that some of the doctors have no idea what mucosal melanoma is, some treat it exactly like cutaneous melanoma, and some only know the outdated stats/treatments on mucosal melanoma.  We only know this because the first Kaiser surgeon that we spoke to told us that my mother only has 10-15 months and that he couldn't offer her more than just palliative treatment to alleviate her pain for that time. 

We sought a second opinion within the network (only after many many phone calls and delays because of their administrative requirements to get a formal referral through your PCP before you can see any particular specialist).  In doing so, I found out that we only had one overworked surgical oncologist available in the entire county even though we live in Orange County, CA.  We were not able to get an appointment with that one oncologist until after a month after her diagnosis.  Kaiser also repeatedly informed the first surgeon about our attempts to get a second opinion, despite our attempts to avoid confronation.  He felt offended and told us that we needed to face the "sad reality" of the situation.  Finally after we got our second opinion, that doctor told us she would have a chance for survival if she got a complete APR resection and groin lymph node dissection.  He proudly told us that their longest living anal melanoma patient lived for 2 years after diagnosis. At no point did they allow us to see an oncologist first because Kaiser requires you to see the surgeon before you get any treatment from an oncologist.  We had to really fight them to let her see an oncologist–who also supported the surgery-first approach (although I mainly suspect that he was deferring to the surgeon's opinion). 

There was absolutely no sense of urgency within the Kaiser system (although some of the admin people were very kind and tried very hard within the limiations of their positions to help us) and nobody would expedite her CT, PET, MRI scans, etc…  We were in the process of fighting for an expedited surgery date when we started posting on these boards and everyone encouraged us to go to a specialist.  Once we saw Dr. Ribas and took his opinion for immunotherapy to the oncologist at Kaiser, the oncologist completely AGREED that avoiding surgery was the better option for her.  To this day I don't know if Kaiser (1) wrote her off as dead, (2) is just an administrative mess due to how it is structured, or (3) is just full of incompetent doctors.  I just know that if we didn't advocate for ourselves, Kaiser would have botched her care.  Supposedly there is a process to go out of network through Kaiser.  However, in our experience, there is a lot of red tape and when time is of the essence in a melanoma case, you can't wait for them to come around.

The funny thing is that we used to love Kaiser before all of this happened.  My parents loved that it was run like a machine, that they could get appointments quickly, email their doctors through a single portal, etc… If you have something common like breast cancer, maybe they still run that program like a well oiled machine.  But if you have a rare cancer like mucosal melanoma, you definitely need to get out as soon as possible.  This is our experience, however, maybe others have found it ok.

Cindy – Could you post some of what the mucosal specialist told you?  Would you mind sharing his/her name?  Am interested to hear what the specialists are saying as it changes rapidly with all the progress being made.  I have mucosal melanoma but have not yet been to a mucosal specialist, wondering what they said that differed from your Kaiser providers.

T. Bailey – you are on the right track seeing a specialist at MD Anderson.  I second not to Google at this stage.  I would use it only to inform yourself on the basics and ignore past, outdated statistics, which probably includes anything before about 2013.  It is a fact that most people who are doing well do not post on internet forums, so you tend to hear only the worst.  This is a wonderful forum for support!  Lots of good people here.  Good luck to you!