first diagnosis fight plan

So everybody on this forum will say a couple of things.

If they come back with a Stage 2 or more results (which we all hope it doesn't)…find a real melanoma specialist (not just an oncologist or dermatologist…but somebody that sees melanoma patients all day long every day of the week.)

You need to be your own health manager/advocate – do NOT rely on your doctor to manage your health – get educated on the facts – lots of good websites out there to explain the basics and then you can talk to your doctor about options and questions.  

Don't be afraid to get a second opinion.  I did and probably 75% of the folks on this board have gotten a 2nd or 3rd opinion.

And if you are Stage 1 – celebrate but be diligent.  Don't live your life in fear (which is easy to do if you are Stage 3 or 4)….but have fun and don't take anything for granted.

Welcome to this forum….sorry you are here….but lots of people here to help you if you need us.

Michel

So everybody on this forum will say a couple of things.

If they come back with a Stage 2 or more results (which we all hope it doesn't)…find a real melanoma specialist (not just an oncologist or dermatologist…but somebody that sees melanoma patients all day long every day of the week.)

You need to be your own health manager/advocate – do NOT rely on your doctor to manage your health – get educated on the facts – lots of good websites out there to explain the basics and then you can talk to your doctor about options and questions.  

Don't be afraid to get a second opinion.  I did and probably 75% of the folks on this board have gotten a 2nd or 3rd opinion.

And if you are Stage 1 – celebrate but be diligent.  Don't live your life in fear (which is easy to do if you are Stage 3 or 4)….but have fun and don't take anything for granted.

Welcome to this forum….sorry you are here….but lots of people here to help you if you need us.

Michel

So everybody on this forum will say a couple of things.

If they come back with a Stage 2 or more results (which we all hope it doesn't)…find a real melanoma specialist (not just an oncologist or dermatologist…but somebody that sees melanoma patients all day long every day of the week.)

You need to be your own health manager/advocate – do NOT rely on your doctor to manage your health – get educated on the facts – lots of good websites out there to explain the basics and then you can talk to your doctor about options and questions.  

Don't be afraid to get a second opinion.  I did and probably 75% of the folks on this board have gotten a 2nd or 3rd opinion.

And if you are Stage 1 – celebrate but be diligent.  Don't live your life in fear (which is easy to do if you are Stage 3 or 4)….but have fun and don't take anything for granted.

Welcome to this forum….sorry you are here….but lots of people here to help you if you need us.

Michel

Hello,

Sorry you have to join this group but it has a lot of compassionate and well informed patients and caregivers.

First I would like to recommend you get a copy of any scans, blood tests, surgeons notes and keep a folder yourself.  Then if you travel to another doctor you don't have to wait for the first doctor to send things on you can take them yourself and they can make copies for their files.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

Sorry you have to join this group but it has a lot of compassionate and well informed patients and caregivers.

First I would like to recommend you get a copy of any scans, blood tests, surgeons notes and keep a folder yourself.  Then if you travel to another doctor you don't have to wait for the first doctor to send things on you can take them yourself and they can make copies for their files.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

Sorry you have to join this group but it has a lot of compassionate and well informed patients and caregivers.

First I would like to recommend you get a copy of any scans, blood tests, surgeons notes and keep a folder yourself.  Then if you travel to another doctor you don't have to wait for the first doctor to send things on you can take them yourself and they can make copies for their files.

Judy (loving wife of Gene Stage IV and now NED)

Very smart going to the melanoma specialist.  It sounds like that might be from your own undertaking and I applaud you for that.  Will be curious what the specialist says regarding a Sentinel Node Biopsy (SNB).  You may want to google it and see if you can find studies proving or disproving the merits.  If it were me I'd request one.  The standard used to be 1.0 mm or deeper for the procedure but I think some recommend .75 mm or deeper now.

Brian

Very smart going to the melanoma specialist.  It sounds like that might be from your own undertaking and I applaud you for that.  Will be curious what the specialist says regarding a Sentinel Node Biopsy (SNB).  You may want to google it and see if you can find studies proving or disproving the merits.  If it were me I'd request one.  The standard used to be 1.0 mm or deeper for the procedure but I think some recommend .75 mm or deeper now.

Brian

Very smart going to the melanoma specialist.  It sounds like that might be from your own undertaking and I applaud you for that.  Will be curious what the specialist says regarding a Sentinel Node Biopsy (SNB).  You may want to google it and see if you can find studies proving or disproving the merits.  If it were me I'd request one.  The standard used to be 1.0 mm or deeper for the procedure but I think some recommend .75 mm or deeper now.

Brian

Hi

sorry to hear your news, it must be a big shock. The big question for you is: to biopsy lymph nodes or not. In Australia, SLNB is done at 1mm OR if there's something very aggressive about the melanoma. Desmoplastic is one of the more aggressive types, so perhaps this will swing your dr towards a SNLB. The biopsy doesn't have any impact on prognosis, but it does allow more exact staging of the melanoma. Right now, it's stage 1. But if it were found in lymph nodes that would change. This would be the first and foremost question I would ask: SLNB or not.

Other than that, reassurance that margins are clear (or are you still waiting for a proper wide level excision? That means about 10 cm scar or slightly less – mine was done under local anaesthetic and took about 45 min maximum). If your SLNB is clear (or if you don't need one) AND your wide level excision is done, you can consider yourself cancer free but very watchful for new or recurring melanoma.

The other questions might be about follow up: have you had a full skin exam – if not, get one done. Then: how often do you need to be checked/reviewed, how to do your own (monthly) skin exam and lymph node check if you are really vigilant.

This is a great community, use it for information, reassurance and support. It was a Godsend for me!

Stars

Hi

sorry to hear your news, it must be a big shock. The big question for you is: to biopsy lymph nodes or not. In Australia, SLNB is done at 1mm OR if there's something very aggressive about the melanoma. Desmoplastic is one of the more aggressive types, so perhaps this will swing your dr towards a SNLB. The biopsy doesn't have any impact on prognosis, but it does allow more exact staging of the melanoma. Right now, it's stage 1. But if it were found in lymph nodes that would change. This would be the first and foremost question I would ask: SLNB or not.

Other than that, reassurance that margins are clear (or are you still waiting for a proper wide level excision? That means about 10 cm scar or slightly less – mine was done under local anaesthetic and took about 45 min maximum). If your SLNB is clear (or if you don't need one) AND your wide level excision is done, you can consider yourself cancer free but very watchful for new or recurring melanoma.

The other questions might be about follow up: have you had a full skin exam – if not, get one done. Then: how often do you need to be checked/reviewed, how to do your own (monthly) skin exam and lymph node check if you are really vigilant.

This is a great community, use it for information, reassurance and support. It was a Godsend for me!

Stars

Hi

sorry to hear your news, it must be a big shock. The big question for you is: to biopsy lymph nodes or not. In Australia, SLNB is done at 1mm OR if there's something very aggressive about the melanoma. Desmoplastic is one of the more aggressive types, so perhaps this will swing your dr towards a SNLB. The biopsy doesn't have any impact on prognosis, but it does allow more exact staging of the melanoma. Right now, it's stage 1. But if it were found in lymph nodes that would change. This would be the first and foremost question I would ask: SLNB or not.

Other than that, reassurance that margins are clear (or are you still waiting for a proper wide level excision? That means about 10 cm scar or slightly less – mine was done under local anaesthetic and took about 45 min maximum). If your SLNB is clear (or if you don't need one) AND your wide level excision is done, you can consider yourself cancer free but very watchful for new or recurring melanoma.

The other questions might be about follow up: have you had a full skin exam – if not, get one done. Then: how often do you need to be checked/reviewed, how to do your own (monthly) skin exam and lymph node check if you are really vigilant.

This is a great community, use it for information, reassurance and support. It was a Godsend for me!

Stars

Hi  there, I also recently got diagnosed – my initial diagnose  was .7 MM (local suburban derm) and then I took that path report to Northwestern memorial hospital  and got the surgical oncologist pathology to review my case for a second opinion and they found my melanoma to be .3 mm – cells were atypical lower but now mel- definitely got a second opinion… I did not opt for an Slnb as I am breast-feeding and it would've interrupted the breast-feeding… Though now I feel nervous I did not – if you have it in you – make sure all avenues are checked to make sure your cancer free! Best of luck to you, try not to be scared, this is just st the beginning. 

Hi  there, I also recently got diagnosed – my initial diagnose  was .7 MM (local suburban derm) and then I took that path report to Northwestern memorial hospital  and got the surgical oncologist pathology to review my case for a second opinion and they found my melanoma to be .3 mm – cells were atypical lower but now mel- definitely got a second opinion… I did not opt for an Slnb as I am breast-feeding and it would've interrupted the breast-feeding… Though now I feel nervous I did not – if you have it in you – make sure all avenues are checked to make sure your cancer free! Best of luck to you, try not to be scared, this is just st the beginning. 

Hi  there, I also recently got diagnosed – my initial diagnose  was .7 MM (local suburban derm) and then I took that path report to Northwestern memorial hospital  and got the surgical oncologist pathology to review my case for a second opinion and they found my melanoma to be .3 mm – cells were atypical lower but now mel- definitely got a second opinion… I did not opt for an Slnb as I am breast-feeding and it would've interrupted the breast-feeding… Though now I feel nervous I did not – if you have it in you – make sure all avenues are checked to make sure your cancer free! Best of luck to you, try not to be scared, this is just st the beginning.