CALLING all Melanoma In Situ and shallow Radial Growth phase that metastasized

What you are missing are the 99.+% of melanoma in situ patients who have not had spread.  You will never know why the one's with melanoma in situ have progessed.  Misread pathology, too small of margins, 2nd unknown primary, suppressed immune system… or just plain bad luck.  But spending your time agonizing about those factors WHICH YOU CAN'T CONTROL lets melanoma win over you even if it never comes back!  You won't find many melanoma in situ patients who stick around on this board because they've learned to go on living life!

Janner

Stage IB for 20 years, 2 stage 1b and 1 in situ

What you are missing are the 99.+% of melanoma in situ patients who have not had spread.  You will never know why the one's with melanoma in situ have progessed.  Misread pathology, too small of margins, 2nd unknown primary, suppressed immune system… or just plain bad luck.  But spending your time agonizing about those factors WHICH YOU CAN'T CONTROL lets melanoma win over you even if it never comes back!  You won't find many melanoma in situ patients who stick around on this board because they've learned to go on living life!

Janner

Stage IB for 20 years, 2 stage 1b and 1 in situ

What you are missing are the 99.+% of melanoma in situ patients who have not had spread.  You will never know why the one's with melanoma in situ have progessed.  Misread pathology, too small of margins, 2nd unknown primary, suppressed immune system… or just plain bad luck.  But spending your time agonizing about those factors WHICH YOU CAN'T CONTROL lets melanoma win over you even if it never comes back!  You won't find many melanoma in situ patients who stick around on this board because they've learned to go on living life!

Janner

Stage IB for 20 years, 2 stage 1b and 1 in situ

First…. I would say take a deep breath. It is so hard not to freak out when you first get the diagnosis, no matter what level. And worst case scenario stories don't help.

Please keep in mind that the stories you have read that have to do with in-situ melanoma suddenly reappearing as Stage 4 spread are the exception to the rule. They make headlines and are memorable because they are exceptional cases. Many, many people who have an in-situ removed go on to never have another occurence. Another large percentage of the people who have reoccurences have them caught early because they are being watched.

Directly from the American Cancer Society website about melanoma survival rates:

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%. (As of 2008)

In other words, melanoma may be deadly and dangerous, but it is also very treatable in it's earlier stages.

It may not have been the wisest choice of words that your doctor used, because no one can 100% guarantee lack of spread with any disease, but that doesn't necessarily mean he/she is incompetent. It could have just been that doctor trying to keep things in perspective for you.

Having had one, of course, puts you at a higher risk than the average person for reoccurence, so that just means you should be vigilant from now on and be checked regularly by a dermatologist. There's really not much else besides "watch and wait" that is standardly done for Stage IA people.

As for traits that may make one at a higher risk for spread even after a clean biopsy, I would say: Depth of lesion and mitotic rate would be possible factors. Also, family history and other genetic factors. However, I don't know that, even in retrospect, there would be any one factor in common that would explain why spread happens to some people and not to others.

My husband's depth of lesion was only .41mm with (if I recall) a mitotic rate of either zero or one. (Yes, read by a derm pathologist) His margins were clean and his WLE biopsy was clear. He was not a sun worshipper and did not have an inordinate amount of sunburns in his lifetime. He was told that biannual trips to the dermatologist would be in order, but that otherwise he should be fine.

However, he was also fair skinned, blue eyed and blond haired. Two of his father's sisters had melanoma lesions removed (although we were not aware of the family history until much later). He also had many atypical moles. He was also a rubella baby (his mother had the German measles while pregnant with him), which caused other minor health concerns, especially in his early life.

To this day, we don't know which one of these factors (or combination thereof) led to his disease spreading. There were no secondary lesions or earlier primaries found. The disease never came back to the surface of his skin. He went to see the dermatologist every 6 months like clockwork and they found nothing, even within 3 months of his Stage 4 diagnosis. He ate well and excercised regularly. He was extremely careful about sun exposure, used sunscreen, carried a UV meter.

In other words, there was really no outward sign of his progression to give his deteriorating state away until his lymph node under his arm swelled up and the ensuing surgery confirmed the diagnosis.

Yes, Don was one of the 3%….but think about that number and how small it is in comparison to the 97%. 97% of people diagnosed at Stage 1A are alive 5 years later; and 95% ten years later. And with all the new successful treatments discovered recently, that survival rate will continue to go up. 

Please…don't let stories like my husband's cause fear to rule your life and affect all your decisions. Instead, get knowledgeable about the facts and be your own advocate. Don't be afraid to ask questions and expect answers that make sense. Don't be afraid to ask for a second opinion if it helps ease your mind. You could also go and speak with a melanoma specialist if you don't feel your questions or concerns have been answered by your primary care doctor, dermatologist, or general practice oncologist.

I wish you the very best!

Michelle, wife of Don

First…. I would say take a deep breath. It is so hard not to freak out when you first get the diagnosis, no matter what level. And worst case scenario stories don't help.

Please keep in mind that the stories you have read that have to do with in-situ melanoma suddenly reappearing as Stage 4 spread are the exception to the rule. They make headlines and are memorable because they are exceptional cases. Many, many people who have an in-situ removed go on to never have another occurence. Another large percentage of the people who have reoccurences have them caught early because they are being watched.

Directly from the American Cancer Society website about melanoma survival rates:

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%. (As of 2008)

In other words, melanoma may be deadly and dangerous, but it is also very treatable in it's earlier stages.

It may not have been the wisest choice of words that your doctor used, because no one can 100% guarantee lack of spread with any disease, but that doesn't necessarily mean he/she is incompetent. It could have just been that doctor trying to keep things in perspective for you.

Having had one, of course, puts you at a higher risk than the average person for reoccurence, so that just means you should be vigilant from now on and be checked regularly by a dermatologist. There's really not much else besides "watch and wait" that is standardly done for Stage IA people.

As for traits that may make one at a higher risk for spread even after a clean biopsy, I would say: Depth of lesion and mitotic rate would be possible factors. Also, family history and other genetic factors. However, I don't know that, even in retrospect, there would be any one factor in common that would explain why spread happens to some people and not to others.

My husband's depth of lesion was only .41mm with (if I recall) a mitotic rate of either zero or one. (Yes, read by a derm pathologist) His margins were clean and his WLE biopsy was clear. He was not a sun worshipper and did not have an inordinate amount of sunburns in his lifetime. He was told that biannual trips to the dermatologist would be in order, but that otherwise he should be fine.

However, he was also fair skinned, blue eyed and blond haired. Two of his father's sisters had melanoma lesions removed (although we were not aware of the family history until much later). He also had many atypical moles. He was also a rubella baby (his mother had the German measles while pregnant with him), which caused other minor health concerns, especially in his early life.

To this day, we don't know which one of these factors (or combination thereof) led to his disease spreading. There were no secondary lesions or earlier primaries found. The disease never came back to the surface of his skin. He went to see the dermatologist every 6 months like clockwork and they found nothing, even within 3 months of his Stage 4 diagnosis. He ate well and excercised regularly. He was extremely careful about sun exposure, used sunscreen, carried a UV meter.

In other words, there was really no outward sign of his progression to give his deteriorating state away until his lymph node under his arm swelled up and the ensuing surgery confirmed the diagnosis.

Yes, Don was one of the 3%….but think about that number and how small it is in comparison to the 97%. 97% of people diagnosed at Stage 1A are alive 5 years later; and 95% ten years later. And with all the new successful treatments discovered recently, that survival rate will continue to go up. 

Please…don't let stories like my husband's cause fear to rule your life and affect all your decisions. Instead, get knowledgeable about the facts and be your own advocate. Don't be afraid to ask questions and expect answers that make sense. Don't be afraid to ask for a second opinion if it helps ease your mind. You could also go and speak with a melanoma specialist if you don't feel your questions or concerns have been answered by your primary care doctor, dermatologist, or general practice oncologist.

I wish you the very best!

Michelle, wife of Don

First…. I would say take a deep breath. It is so hard not to freak out when you first get the diagnosis, no matter what level. And worst case scenario stories don't help.

Please keep in mind that the stories you have read that have to do with in-situ melanoma suddenly reappearing as Stage 4 spread are the exception to the rule. They make headlines and are memorable because they are exceptional cases. Many, many people who have an in-situ removed go on to never have another occurence. Another large percentage of the people who have reoccurences have them caught early because they are being watched.

Directly from the American Cancer Society website about melanoma survival rates:

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%. (As of 2008)

In other words, melanoma may be deadly and dangerous, but it is also very treatable in it's earlier stages.

It may not have been the wisest choice of words that your doctor used, because no one can 100% guarantee lack of spread with any disease, but that doesn't necessarily mean he/she is incompetent. It could have just been that doctor trying to keep things in perspective for you.

Having had one, of course, puts you at a higher risk than the average person for reoccurence, so that just means you should be vigilant from now on and be checked regularly by a dermatologist. There's really not much else besides "watch and wait" that is standardly done for Stage IA people.

As for traits that may make one at a higher risk for spread even after a clean biopsy, I would say: Depth of lesion and mitotic rate would be possible factors. Also, family history and other genetic factors. However, I don't know that, even in retrospect, there would be any one factor in common that would explain why spread happens to some people and not to others.

My husband's depth of lesion was only .41mm with (if I recall) a mitotic rate of either zero or one. (Yes, read by a derm pathologist) His margins were clean and his WLE biopsy was clear. He was not a sun worshipper and did not have an inordinate amount of sunburns in his lifetime. He was told that biannual trips to the dermatologist would be in order, but that otherwise he should be fine.

However, he was also fair skinned, blue eyed and blond haired. Two of his father's sisters had melanoma lesions removed (although we were not aware of the family history until much later). He also had many atypical moles. He was also a rubella baby (his mother had the German measles while pregnant with him), which caused other minor health concerns, especially in his early life.

To this day, we don't know which one of these factors (or combination thereof) led to his disease spreading. There were no secondary lesions or earlier primaries found. The disease never came back to the surface of his skin. He went to see the dermatologist every 6 months like clockwork and they found nothing, even within 3 months of his Stage 4 diagnosis. He ate well and excercised regularly. He was extremely careful about sun exposure, used sunscreen, carried a UV meter.

In other words, there was really no outward sign of his progression to give his deteriorating state away until his lymph node under his arm swelled up and the ensuing surgery confirmed the diagnosis.

Yes, Don was one of the 3%….but think about that number and how small it is in comparison to the 97%. 97% of people diagnosed at Stage 1A are alive 5 years later; and 95% ten years later. And with all the new successful treatments discovered recently, that survival rate will continue to go up. 

Please…don't let stories like my husband's cause fear to rule your life and affect all your decisions. Instead, get knowledgeable about the facts and be your own advocate. Don't be afraid to ask questions and expect answers that make sense. Don't be afraid to ask for a second opinion if it helps ease your mind. You could also go and speak with a melanoma specialist if you don't feel your questions or concerns have been answered by your primary care doctor, dermatologist, or general practice oncologist.

I wish you the very best!

Michelle, wife of Don

I like you, was diagnosed with melanoma in-situ. Unlike you (I hope), I lost my younger brother in 2010 to metastatic melanoma, and I currently have a young aunt who is fighting stage IV metastatic melanoma. As you can imagine, it has been scary for me because I constantly worry whether of not I will end up at the same place with the disease. I recommend if you're worried, get your path report read by a second lab just to verify the findings. It might set your mind at ease. Did you have the secondary excision? The dermatologist that took mine off didnt do the follow-up excision because he felt he had got it all, and cauterized the margins well enough. I ended up getting a second opinion and this doctor immediately sheduled me for a MOHS procedure. It was instrumental in easing my fears. Now I know I have done everything I could. The rest is up to fate. Try to focus on the things you can control: Making sure you go to all your skin checks. Get mole-mapping if you can. Watch like a hawk for any new changes, and protect your skin!!! Dont worry about the things you cant change. Enjoy every day of your life. I hope you and I never have to deal with melanoma again! 

I like you, was diagnosed with melanoma in-situ. Unlike you (I hope), I lost my younger brother in 2010 to metastatic melanoma, and I currently have a young aunt who is fighting stage IV metastatic melanoma. As you can imagine, it has been scary for me because I constantly worry whether of not I will end up at the same place with the disease. I recommend if you're worried, get your path report read by a second lab just to verify the findings. It might set your mind at ease. Did you have the secondary excision? The dermatologist that took mine off didnt do the follow-up excision because he felt he had got it all, and cauterized the margins well enough. I ended up getting a second opinion and this doctor immediately sheduled me for a MOHS procedure. It was instrumental in easing my fears. Now I know I have done everything I could. The rest is up to fate. Try to focus on the things you can control: Making sure you go to all your skin checks. Get mole-mapping if you can. Watch like a hawk for any new changes, and protect your skin!!! Dont worry about the things you cant change. Enjoy every day of your life. I hope you and I never have to deal with melanoma again! 

I like you, was diagnosed with melanoma in-situ. Unlike you (I hope), I lost my younger brother in 2010 to metastatic melanoma, and I currently have a young aunt who is fighting stage IV metastatic melanoma. As you can imagine, it has been scary for me because I constantly worry whether of not I will end up at the same place with the disease. I recommend if you're worried, get your path report read by a second lab just to verify the findings. It might set your mind at ease. Did you have the secondary excision? The dermatologist that took mine off didnt do the follow-up excision because he felt he had got it all, and cauterized the margins well enough. I ended up getting a second opinion and this doctor immediately sheduled me for a MOHS procedure. It was instrumental in easing my fears. Now I know I have done everything I could. The rest is up to fate. Try to focus on the things you can control: Making sure you go to all your skin checks. Get mole-mapping if you can. Watch like a hawk for any new changes, and protect your skin!!! Dont worry about the things you cant change. Enjoy every day of your life. I hope you and I never have to deal with melanoma again! 

It's definitely hard not to worry

It's definitely hard not to worry

It's definitely hard not to worry