Not sure why my melanoma wasn’t diagnosed on my first appointment…

My husband had a similar experience about 13 years ago. He had already had 2 primary melanomas, the first of which was quite deep. The second not as worrisome. There was a third spot he was worried about that he brought to the attention of the melanoma specialists at a cancer center. They didn't think it was melanoma and did not want to remove it. So he went back to his first dermatologist and asked her to remove it. It was melanoma. Subsequently he had  6 additional primary melanomas removed over the years.

One thing he has done since is to always have two dermatologists. He saw each dermatologist twice yearly, so that he was getting looked at a total of four times yearly. His community, private practice dermatologist Dr. Gayle Masri-Fridiling was usually the one most willing to biopsy. This worked well when we lived in the US. When we lived overseas he flew back to the U.S. twice a year to see Gayle. 

In summary we needed the cancer team, however Gayle understood how subjective the naked eye is. She also used photos. She was the one to pick up his Stage IV metastatic melanoma last August when she saw a small brown spot that had not been present 6 months earlier(she noticed this spot was NOT in the photos). Due to the mitotic rate and other factors the pathologist recognized that this was metastatic rather than primary.

My husband had a similar experience about 13 years ago. He had already had 2 primary melanomas, the first of which was quite deep. The second not as worrisome. There was a third spot he was worried about that he brought to the attention of the melanoma specialists at a cancer center. They didn't think it was melanoma and did not want to remove it. So he went back to his first dermatologist and asked her to remove it. It was melanoma. Subsequently he had  6 additional primary melanomas removed over the years.

One thing he has done since is to always have two dermatologists. He saw each dermatologist twice yearly, so that he was getting looked at a total of four times yearly. His community, private practice dermatologist Dr. Gayle Masri-Fridiling was usually the one most willing to biopsy. This worked well when we lived in the US. When we lived overseas he flew back to the U.S. twice a year to see Gayle. 

In summary we needed the cancer team, however Gayle understood how subjective the naked eye is. She also used photos. She was the one to pick up his Stage IV metastatic melanoma last August when she saw a small brown spot that had not been present 6 months earlier(she noticed this spot was NOT in the photos). Due to the mitotic rate and other factors the pathologist recognized that this was metastatic rather than primary.

My husband had a similar experience about 13 years ago. He had already had 2 primary melanomas, the first of which was quite deep. The second not as worrisome. There was a third spot he was worried about that he brought to the attention of the melanoma specialists at a cancer center. They didn't think it was melanoma and did not want to remove it. So he went back to his first dermatologist and asked her to remove it. It was melanoma. Subsequently he had  6 additional primary melanomas removed over the years.

One thing he has done since is to always have two dermatologists. He saw each dermatologist twice yearly, so that he was getting looked at a total of four times yearly. His community, private practice dermatologist Dr. Gayle Masri-Fridiling was usually the one most willing to biopsy. This worked well when we lived in the US. When we lived overseas he flew back to the U.S. twice a year to see Gayle. 

In summary we needed the cancer team, however Gayle understood how subjective the naked eye is. She also used photos. She was the one to pick up his Stage IV metastatic melanoma last August when she saw a small brown spot that had not been present 6 months earlier(she noticed this spot was NOT in the photos). Due to the mitotic rate and other factors the pathologist recognized that this was metastatic rather than primary.

I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

Lori, caregiver to Will

I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

Lori, caregiver to Will

I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

Lori, caregiver to Will

You're hardly alone.  I saw a survey years back that said something like 73% of primary care physicians didn't diagnose melanoma when it presented.  My (new) melanoma specialist also thought my third primary did not look suspicious.  I insisted it get biopsied at my second visit.  It did not look like typical melanoma at all, but *I* knew it had changed.  For me, that is the important factor.  Since then, I've had photographs taken and that gives me an "independent eye" on my skin.  My doc has also learned that he trusts nothing on my skin and is willing to biopsy anything I feel uneasy about.  We check the photos and discuss a plan.  It's a partnership, not my doc telling me "this is fine". 

Plenty of primaries look typical for melanoma, but there are also a lot that don't.  You have to be your own advocate.  I do NOT rely on anyone besides myself to diagnose primaries – I know myself best.  My derm looks at my skin, but I tell him what concerns me.and what my gut says is not good.  Anything changes and it is gone.  My doc insists on photographs because he says there is no way he can remember from one visit to another what some mole looked like.  CHANGE is what drives biopsies at my cancer institute and on my body as well.

Best wishes that this latest is an early primary!

Janner

You're hardly alone.  I saw a survey years back that said something like 73% of primary care physicians didn't diagnose melanoma when it presented.  My (new) melanoma specialist also thought my third primary did not look suspicious.  I insisted it get biopsied at my second visit.  It did not look like typical melanoma at all, but *I* knew it had changed.  For me, that is the important factor.  Since then, I've had photographs taken and that gives me an "independent eye" on my skin.  My doc has also learned that he trusts nothing on my skin and is willing to biopsy anything I feel uneasy about.  We check the photos and discuss a plan.  It's a partnership, not my doc telling me "this is fine". 

Plenty of primaries look typical for melanoma, but there are also a lot that don't.  You have to be your own advocate.  I do NOT rely on anyone besides myself to diagnose primaries – I know myself best.  My derm looks at my skin, but I tell him what concerns me.and what my gut says is not good.  Anything changes and it is gone.  My doc insists on photographs because he says there is no way he can remember from one visit to another what some mole looked like.  CHANGE is what drives biopsies at my cancer institute and on my body as well.

Best wishes that this latest is an early primary!

Janner

You're hardly alone.  I saw a survey years back that said something like 73% of primary care physicians didn't diagnose melanoma when it presented.  My (new) melanoma specialist also thought my third primary did not look suspicious.  I insisted it get biopsied at my second visit.  It did not look like typical melanoma at all, but *I* knew it had changed.  For me, that is the important factor.  Since then, I've had photographs taken and that gives me an "independent eye" on my skin.  My doc has also learned that he trusts nothing on my skin and is willing to biopsy anything I feel uneasy about.  We check the photos and discuss a plan.  It's a partnership, not my doc telling me "this is fine". 

Plenty of primaries look typical for melanoma, but there are also a lot that don't.  You have to be your own advocate.  I do NOT rely on anyone besides myself to diagnose primaries – I know myself best.  My derm looks at my skin, but I tell him what concerns me.and what my gut says is not good.  Anything changes and it is gone.  My doc insists on photographs because he says there is no way he can remember from one visit to another what some mole looked like.  CHANGE is what drives biopsies at my cancer institute and on my body as well.

Best wishes that this latest is an early primary!

Janner

seathing child, i am very sorry to hear this,but it doesn't surprise me,my husband had a mole on his back for years that i did not like,he never went,until it grew a blister on it,he went to a dermatologist and he told him "im not worried about it" ,i think they tell everyone that,had a biopsy and came back as stage 3b melanoma, it has been a long year and half, he seems to be doing well,it had spread lymph nodes,brain ,lungs..etc.  ,so keeping our fingers crossed that the ippi will work, the interferon obviously didn't.  me and my 13 year old are going in july, and i am pertrified,i do have a lot of moles,none that really concern me, but,that doesn't really matter., i believe that if something bothers you and u are very worried about the mole, then why not biopsy it,i don't get doctors sometimes,it is ur body and if thats wat you want done then they should do it, i don't feel that you should have to wait,better be safe than sorry!!!! i wish u luck in this,let us know wat goes on!!!!!

seathing child, i am very sorry to hear this,but it doesn't surprise me,my husband had a mole on his back for years that i did not like,he never went,until it grew a blister on it,he went to a dermatologist and he told him "im not worried about it" ,i think they tell everyone that,had a biopsy and came back as stage 3b melanoma, it has been a long year and half, he seems to be doing well,it had spread lymph nodes,brain ,lungs..etc.  ,so keeping our fingers crossed that the ippi will work, the interferon obviously didn't.  me and my 13 year old are going in july, and i am pertrified,i do have a lot of moles,none that really concern me, but,that doesn't really matter., i believe that if something bothers you and u are very worried about the mole, then why not biopsy it,i don't get doctors sometimes,it is ur body and if thats wat you want done then they should do it, i don't feel that you should have to wait,better be safe than sorry!!!! i wish u luck in this,let us know wat goes on!!!!!

seathing child, i am very sorry to hear this,but it doesn't surprise me,my husband had a mole on his back for years that i did not like,he never went,until it grew a blister on it,he went to a dermatologist and he told him "im not worried about it" ,i think they tell everyone that,had a biopsy and came back as stage 3b melanoma, it has been a long year and half, he seems to be doing well,it had spread lymph nodes,brain ,lungs..etc.  ,so keeping our fingers crossed that the ippi will work, the interferon obviously didn't.  me and my 13 year old are going in july, and i am pertrified,i do have a lot of moles,none that really concern me, but,that doesn't really matter., i believe that if something bothers you and u are very worried about the mole, then why not biopsy it,i don't get doctors sometimes,it is ur body and if thats wat you want done then they should do it, i don't feel that you should have to wait,better be safe than sorry!!!! i wish u luck in this,let us know wat goes on!!!!!

Janner – I love you! Everyday you give such great advice and find the time to answer so many questions. You are a blessing to this board! Wish I had you to go with me to my appointments! What a fountain of knowledge.

Dave

Janner – I love you! Everyday you give such great advice and find the time to answer so many questions. You are a blessing to this board! Wish I had you to go with me to my appointments! What a fountain of knowledge.

Dave

Janner – I love you! Everyday you give such great advice and find the time to answer so many questions. You are a blessing to this board! Wish I had you to go with me to my appointments! What a fountain of knowledge.

Dave

Ditto!  You are helping so many more than just  the person asking the question!  This board is a constant flow of information and we are all learning from each other.  It's so important to share your experiences and knowledge.  I'm amazed at how much time you generously give to this forum, we are so grateful….THANK YOU!

Ditto!  You are helping so many more than just  the person asking the question!  This board is a constant flow of information and we are all learning from each other.  It's so important to share your experiences and knowledge.  I'm amazed at how much time you generously give to this forum, we are so grateful….THANK YOU!

Ditto!  You are helping so many more than just  the person asking the question!  This board is a constant flow of information and we are all learning from each other.  It's so important to share your experiences and knowledge.  I'm amazed at how much time you generously give to this forum, we are so grateful….THANK YOU!

Awww shucks.  Thanks Dave and Swanee.  I try to move on thinking it would be better for me, but it just doesn't happen.  I try not to post too much, but then can't always let things pass without a comment.  I think there is some OCD involved, lol.  Nice to know that someone appreciates my posts, however.  Thanks again!

Awww shucks.  Thanks Dave and Swanee.  I try to move on thinking it would be better for me, but it just doesn't happen.  I try not to post too much, but then can't always let things pass without a comment.  I think there is some OCD involved, lol.  Nice to know that someone appreciates my posts, however.  Thanks again!

Awww shucks.  Thanks Dave and Swanee.  I try to move on thinking it would be better for me, but it just doesn't happen.  I try not to post too much, but then can't always let things pass without a comment.  I think there is some OCD involved, lol.  Nice to know that someone appreciates my posts, however.  Thanks again!

Didn't mean to steal the thread but I did want to give props for Janner for all she does. The one thing I'd like to add is to get to a derm who really knows their stuff. Makes all the difference. When I was diagnosed 3b my surgeon sent me to an oncologist who I'll never go back and see; my 1 appoinment was that miserable.

Find someone who cares…

Dave

Didn't mean to steal the thread but I did want to give props for Janner for all she does. The one thing I'd like to add is to get to a derm who really knows their stuff. Makes all the difference. When I was diagnosed 3b my surgeon sent me to an oncologist who I'll never go back and see; my 1 appoinment was that miserable.

Find someone who cares…

Dave

Didn't mean to steal the thread but I did want to give props for Janner for all she does. The one thing I'd like to add is to get to a derm who really knows their stuff. Makes all the difference. When I was diagnosed 3b my surgeon sent me to an oncologist who I'll never go back and see; my 1 appoinment was that miserable.

Find someone who cares…

Dave