Just Had Surgery

Do a search on this site for "unknown primary".  The theory is you originally had a lesion somewhere but the body discovered the lesion and attacked it and destroyed it – however some cells left the lesion and escaped to the lymph nodes prior to this happening.  That's the working theory.  About 10% of the melanoma population have unknown primaries.  Probably considered stage III as it is in your lymph nodes – meaning it started somewhere else and traveled to the lymph nodes.  Melanocytes are not found in lymph nodes normally so the cells came from elsewhere.  Size and depth only relate to the primary tumor which you can't find – again "unknown primary".    My best suggestion is to find a good melanoma oncologist – preferable at a large cancer center.  A general oncologist isn't the right choice for this – the field of melanoma treatments is changing rapidly and you want someone who deals with this daily and has access to clinical trials.  You may or may not choose to do a treatment at this point but you definitely want an experienced team on your side.

Do a search on this site for "unknown primary".  The theory is you originally had a lesion somewhere but the body discovered the lesion and attacked it and destroyed it – however some cells left the lesion and escaped to the lymph nodes prior to this happening.  That's the working theory.  About 10% of the melanoma population have unknown primaries.  Probably considered stage III as it is in your lymph nodes – meaning it started somewhere else and traveled to the lymph nodes.  Melanocytes are not found in lymph nodes normally so the cells came from elsewhere.  Size and depth only relate to the primary tumor which you can't find – again "unknown primary".    My best suggestion is to find a good melanoma oncologist – preferable at a large cancer center.  A general oncologist isn't the right choice for this – the field of melanoma treatments is changing rapidly and you want someone who deals with this daily and has access to clinical trials.  You may or may not choose to do a treatment at this point but you definitely want an experienced team on your side.

Do a search on this site for "unknown primary".  The theory is you originally had a lesion somewhere but the body discovered the lesion and attacked it and destroyed it – however some cells left the lesion and escaped to the lymph nodes prior to this happening.  That's the working theory.  About 10% of the melanoma population have unknown primaries.  Probably considered stage III as it is in your lymph nodes – meaning it started somewhere else and traveled to the lymph nodes.  Melanocytes are not found in lymph nodes normally so the cells came from elsewhere.  Size and depth only relate to the primary tumor which you can't find – again "unknown primary".    My best suggestion is to find a good melanoma oncologist – preferable at a large cancer center.  A general oncologist isn't the right choice for this – the field of melanoma treatments is changing rapidly and you want someone who deals with this daily and has access to clinical trials.  You may or may not choose to do a treatment at this point but you definitely want an experienced team on your side.

My husband had unknow primary.  Never sick, never needed to see a doctor.  Then Boom.  Stage IV.  Get a specialist, get scanned, dont take it for granted.  Its a silent killer and has no rules. 

Prayers and hugs.

R

My husband had unknow primary.  Never sick, never needed to see a doctor.  Then Boom.  Stage IV.  Get a specialist, get scanned, dont take it for granted.  Its a silent killer and has no rules. 

Prayers and hugs.

R

My husband had unknow primary.  Never sick, never needed to see a doctor.  Then Boom.  Stage IV.  Get a specialist, get scanned, dont take it for granted.  Its a silent killer and has no rules. 

Prayers and hugs.

R

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!