Just found out i have nodular melanoma and scared to death!!!!!

My primary was found in September, 2010, and like yours and Karen's was nodular.   Mine was 4.35 Breslow, high mitotic rate (9+), Clarke level 5.  The SNB was positive in one node.  To top it off, this is a second cancer for me,  and yet here I am, more than two years later, feeling really good.  So, please don't panic.  I have had an intransit met in the area of the axillary dissection, which I found myself, and at the same time, a solitary lung met found by CT scan.  Both were removed surgically.  I have had no other treatment.  I am therefore stage 4, but currently NED (no evidence of disease).  I want to emphasize to you that you need to get as much information as you can, find a melanoma specialist (mine is Dr. Wolchok at Sloan-Kettering in NYC), and advocate for yourself.  I have been really pushy about my care, sometimes annoying the heck out of my primary care doc and my local medical oncologist.  Melanoma, and particularly nodular melanoma, are still a bit mysterious to most people.  My primary melanoma was dismissed as nothing to worry about by both my primary doc and my dermatologist for a number of months – not good with nodular melanoma!  As Karen said, find a knowledgeable doctor and insist on close observation.  Things are really moving quickly in melanoma treatment, so there is a ton of hope for all of us.  Best wishes!

My primary was found in September, 2010, and like yours and Karen's was nodular.   Mine was 4.35 Breslow, high mitotic rate (9+), Clarke level 5.  The SNB was positive in one node.  To top it off, this is a second cancer for me,  and yet here I am, more than two years later, feeling really good.  So, please don't panic.  I have had an intransit met in the area of the axillary dissection, which I found myself, and at the same time, a solitary lung met found by CT scan.  Both were removed surgically.  I have had no other treatment.  I am therefore stage 4, but currently NED (no evidence of disease).  I want to emphasize to you that you need to get as much information as you can, find a melanoma specialist (mine is Dr. Wolchok at Sloan-Kettering in NYC), and advocate for yourself.  I have been really pushy about my care, sometimes annoying the heck out of my primary care doc and my local medical oncologist.  Melanoma, and particularly nodular melanoma, are still a bit mysterious to most people.  My primary melanoma was dismissed as nothing to worry about by both my primary doc and my dermatologist for a number of months – not good with nodular melanoma!  As Karen said, find a knowledgeable doctor and insist on close observation.  Things are really moving quickly in melanoma treatment, so there is a ton of hope for all of us.  Best wishes!

I was diagnosed with Stage 2A nodular melanoma two weeks ago after my dermatologist removed what looked like a blood blister from the back of my neck.  I am having wide area excision surgery in two days to remove a 2 cm margin of skin around the original nodular melanoma tumor location.

Your experience with your doctors not being familiar with nodular melanoma is common. 

Approximately two months ago I noticed a bump on the back of my neck that seemed unfamilar.  I am 61 and I have "skin tags" and other benign erratic skin growths on my chest and back.  After feeling the bump enlarging I asked my wife to look at the bump approximately three weeks ago.  She said it looked like a harmless blood blister, perhaps from an infected hair follicle or sweat gland.  I asked her to take a photo of the bump with her smart phone.  She took the photo of the bump and emailed it to me.  The photo of  the bump is my profile photo.

I looked at the photo and out of general curiousity I "googled" melanoma.  In a couple of minutes I was staring at an online photo of nodular melanoma that looked exactly like the photo that my wife took of the bump on the back of my neck.  I showed the online photo of nodular melanoma to my wife and she was very skeptical that my bump could be a life threatening nodular melanoma tumor.  It was only 0.25 inches in diameter and looked like a harmless blood blister.

I was concerned enough about the similarity of the photo of nodular melanoma that I saw on the Internet to the photo of the bump on the back of my neck that I saw my general practitioner the next day.  I told him about the photo of nodular melanoma that I saw on the Internet.  He told me that he thought the bump was a "blue navus" and was likely not nodular melanoma.  He looked at the bump under a hand held optical magnifying lens and told me that he did see ducting in the bump.

My general practitioner referred me to a dermatologist, who I saw a couple of days after I saw my general practitioner.  My dermatologist discounted my concerns about my bump being nodular melanoma.  She said it was likely an unusual basil cell carcinoma.  My dermatologist removed the bump for biopsy analysis.  She called me one week after she removed the growth on the back of my neck and told me in a panicked voice that I had been justified in my concerns that my "bump" was nodular melanoma.

I have been surprised and disappointed that my general practitioner and my dermatologist appear to have little training and experience that would enable them to recognize nodular melanoma.  One of the reasons that nodular melanoma is only 15% of all melanomas and is over 45% of all fatal melanomas is that too many health care practitioners only use the "A B C D" rules when they screen their patients for skin cancer.    Nodular melanoma can and often does look like a harmless often non pigmented bump that does not trigger concern when doctors are using the "A B C D" skin cancer screening rules.

I too find it so odd that so many doctors and especailly dermatologists miss a life threatening mole or skin "spot". My husband was diagnosed with nodular melanoma in October 2011. He went to our family doctor to show him something very different than what yours looked like. What my husband had was a huge black mole. It had grown and changed colors!! Our family doctor let my husband leave the clinic that day telling him that it was nothing!!  Needless to say I think wives look out for their husbands alot better than any doctor ever could. I cried that day leaving the office because I knew that doctor was wrong but my husband trusted what the doctor said…isn't that what we are supposed to do??  Fast forward 6 months down the road my husbands mole started bleeding and he finally decided to get it removed no matter what the doctors opinion was. Three days later we had a melanoma diagnosis and 1 positive lymph node. If that doctor had removed that mole 6 months earlier could it have saved him from a positive lymph node? We will never know but doctors have to be more educated about these things if they are going to see pt's with skin problems. IF they are not going to get more educated they don't need to see pt's with this kind of problem. Not only doctors but the whole world somehow has to get more educated about melanoma! I recently had a "freckle" come up on the bottom of my foot and went to a dermatologist and he said it was nothing but we would watch it for 6 months to make sure not changes but now because of what my husband went through I find myself not trusting what he said even though he is supposed to know.

Mandi

Mandi :

Thanks for sharing your experiences with all of us. 

I learned this afternoon that the 4 lymph nodes removed from the left side of my neck last Friday did not contain evidence of nodular melanoma cancer cells.  Also, the skin tissue removed during the WLE procedure last Friday did not contain evidence of nodular melanoma cancer cells.

My diagnosis remains Stage 2A nodular melanoma (2.9 mm deep tumor with high mitotic rate but no ulceration) after the removal of the nodular melanoma tumor from the back of my neck and after the WLE and Sentinel Node Biopsy surgery.

The only reason why I still don't have the nodular melanoma tumor on the back of my neck is that approximately four weeks ago I asked my wife to look at a bump I felt on the back of my neck while showering.  I could not see the bump because it was almost exactly midline just below the hair line on the back of my neck.  My wife said it looked like a blood blister and that it looked harmless.  My 23 year old son who recently took a college class on the Biology of Cancer also said it looked like a harmless blood blister.  I asked my wife to take a photo of the bump and email it to me, which she did.

After i looked at the emailed photo of the growth on the back of my neck I googled skin cancer and melanoma.  In just a few minutes of looking at skin cancer web sites I found a photo of a fatal nodular melanoma that looked just like the photo of the growth on the back of my neck.  The description of the nodular melanoma tumor on the web site said that nodular melanoma often looks like a harmless blood blister to an untrained observer.

After I saw the nodular melanoma tumor on the web site that looked exactly like the tumor on the back of my neck I immediately scheduled an appointment with my general practitioner the next day.  MY GP looked at the tumor and said that it looked harmless, but that he would refer me to a dermatologist.

It took me one week after I saw the GP before I saw the dermatologist.  She also said it looked like a relatively harmless but unusual benign basil cell carcinoma.  She removed the tumor and sent it to a lab for examination.  My dermatologist telephoned me one week after she removed the tumor and told me in a panicked voice that I had been correct and that it was nodular melanoma.

Medical patients who are reasonably educated and who have access to the Internet can and should proactively research information related to unusual symptoms they are experiencing.  Like I said previously, if my wife had not taken a photo of the nodular melanoma tumor on the back of my neck and if I had not found a photo of an extremely similar looking nodular melanoma tumor on the Internet, the tumor would still be growing on the back of my neck and rapidly transitioning from Stage 2A to Stage3 or State 4 nodular melanoma.

Good luck and best wishes to you and to your husband.

Mandi :

Thanks for sharing your experiences with all of us. 

I learned this afternoon that the 4 lymph nodes removed from the left side of my neck last Friday did not contain evidence of nodular melanoma cancer cells.  Also, the skin tissue removed during the WLE procedure last Friday did not contain evidence of nodular melanoma cancer cells.

My diagnosis remains Stage 2A nodular melanoma (2.9 mm deep tumor with high mitotic rate but no ulceration) after the removal of the nodular melanoma tumor from the back of my neck and after the WLE and Sentinel Node Biopsy surgery.

The only reason why I still don't have the nodular melanoma tumor on the back of my neck is that approximately four weeks ago I asked my wife to look at a bump I felt on the back of my neck while showering.  I could not see the bump because it was almost exactly midline just below the hair line on the back of my neck.  My wife said it looked like a blood blister and that it looked harmless.  My 23 year old son who recently took a college class on the Biology of Cancer also said it looked like a harmless blood blister.  I asked my wife to take a photo of the bump and email it to me, which she did.

After i looked at the emailed photo of the growth on the back of my neck I googled skin cancer and melanoma.  In just a few minutes of looking at skin cancer web sites I found a photo of a fatal nodular melanoma that looked just like the photo of the growth on the back of my neck.  The description of the nodular melanoma tumor on the web site said that nodular melanoma often looks like a harmless blood blister to an untrained observer.

After I saw the nodular melanoma tumor on the web site that looked exactly like the tumor on the back of my neck I immediately scheduled an appointment with my general practitioner the next day.  MY GP looked at the tumor and said that it looked harmless, but that he would refer me to a dermatologist.

It took me one week after I saw the GP before I saw the dermatologist.  She also said it looked like a relatively harmless but unusual benign basil cell carcinoma.  She removed the tumor and sent it to a lab for examination.  My dermatologist telephoned me one week after she removed the tumor and told me in a panicked voice that I had been correct and that it was nodular melanoma.

Medical patients who are reasonably educated and who have access to the Internet can and should proactively research information related to unusual symptoms they are experiencing.  Like I said previously, if my wife had not taken a photo of the nodular melanoma tumor on the back of my neck and if I had not found a photo of an extremely similar looking nodular melanoma tumor on the Internet, the tumor would still be growing on the back of my neck and rapidly transitioning from Stage 2A to Stage3 or State 4 nodular melanoma.

Good luck and best wishes to you and to your husband.

Mandi :

Thanks for sharing your experiences with all of us. 

I learned this afternoon that the 4 lymph nodes removed from the left side of my neck last Friday did not contain evidence of nodular melanoma cancer cells.  Also, the skin tissue removed during the WLE procedure last Friday did not contain evidence of nodular melanoma cancer cells.

My diagnosis remains Stage 2A nodular melanoma (2.9 mm deep tumor with high mitotic rate but no ulceration) after the removal of the nodular melanoma tumor from the back of my neck and after the WLE and Sentinel Node Biopsy surgery.

The only reason why I still don't have the nodular melanoma tumor on the back of my neck is that approximately four weeks ago I asked my wife to look at a bump I felt on the back of my neck while showering.  I could not see the bump because it was almost exactly midline just below the hair line on the back of my neck.  My wife said it looked like a blood blister and that it looked harmless.  My 23 year old son who recently took a college class on the Biology of Cancer also said it looked like a harmless blood blister.  I asked my wife to take a photo of the bump and email it to me, which she did.

After i looked at the emailed photo of the growth on the back of my neck I googled skin cancer and melanoma.  In just a few minutes of looking at skin cancer web sites I found a photo of a fatal nodular melanoma that looked just like the photo of the growth on the back of my neck.  The description of the nodular melanoma tumor on the web site said that nodular melanoma often looks like a harmless blood blister to an untrained observer.

After I saw the nodular melanoma tumor on the web site that looked exactly like the tumor on the back of my neck I immediately scheduled an appointment with my general practitioner the next day.  MY GP looked at the tumor and said that it looked harmless, but that he would refer me to a dermatologist.

It took me one week after I saw the GP before I saw the dermatologist.  She also said it looked like a relatively harmless but unusual benign basil cell carcinoma.  She removed the tumor and sent it to a lab for examination.  My dermatologist telephoned me one week after she removed the tumor and told me in a panicked voice that I had been correct and that it was nodular melanoma.

Medical patients who are reasonably educated and who have access to the Internet can and should proactively research information related to unusual symptoms they are experiencing.  Like I said previously, if my wife had not taken a photo of the nodular melanoma tumor on the back of my neck and if I had not found a photo of an extremely similar looking nodular melanoma tumor on the Internet, the tumor would still be growing on the back of my neck and rapidly transitioning from Stage 2A to Stage3 or State 4 nodular melanoma.

Good luck and best wishes to you and to your husband.

I too find it so odd that so many doctors and especailly dermatologists miss a life threatening mole or skin "spot". My husband was diagnosed with nodular melanoma in October 2011. He went to our family doctor to show him something very different than what yours looked like. What my husband had was a huge black mole. It had grown and changed colors!! Our family doctor let my husband leave the clinic that day telling him that it was nothing!!  Needless to say I think wives look out for their husbands alot better than any doctor ever could. I cried that day leaving the office because I knew that doctor was wrong but my husband trusted what the doctor said…isn't that what we are supposed to do??  Fast forward 6 months down the road my husbands mole started bleeding and he finally decided to get it removed no matter what the doctors opinion was. Three days later we had a melanoma diagnosis and 1 positive lymph node. If that doctor had removed that mole 6 months earlier could it have saved him from a positive lymph node? We will never know but doctors have to be more educated about these things if they are going to see pt's with skin problems. IF they are not going to get more educated they don't need to see pt's with this kind of problem. Not only doctors but the whole world somehow has to get more educated about melanoma! I recently had a "freckle" come up on the bottom of my foot and went to a dermatologist and he said it was nothing but we would watch it for 6 months to make sure not changes but now because of what my husband went through I find myself not trusting what he said even though he is supposed to know.

Mandi

I too find it so odd that so many doctors and especailly dermatologists miss a life threatening mole or skin "spot". My husband was diagnosed with nodular melanoma in October 2011. He went to our family doctor to show him something very different than what yours looked like. What my husband had was a huge black mole. It had grown and changed colors!! Our family doctor let my husband leave the clinic that day telling him that it was nothing!!  Needless to say I think wives look out for their husbands alot better than any doctor ever could. I cried that day leaving the office because I knew that doctor was wrong but my husband trusted what the doctor said…isn't that what we are supposed to do??  Fast forward 6 months down the road my husbands mole started bleeding and he finally decided to get it removed no matter what the doctors opinion was. Three days later we had a melanoma diagnosis and 1 positive lymph node. If that doctor had removed that mole 6 months earlier could it have saved him from a positive lymph node? We will never know but doctors have to be more educated about these things if they are going to see pt's with skin problems. IF they are not going to get more educated they don't need to see pt's with this kind of problem. Not only doctors but the whole world somehow has to get more educated about melanoma! I recently had a "freckle" come up on the bottom of my foot and went to a dermatologist and he said it was nothing but we would watch it for 6 months to make sure not changes but now because of what my husband went through I find myself not trusting what he said even though he is supposed to know.

Mandi

I was diagnosed with Stage 2A nodular melanoma two weeks ago after my dermatologist removed what looked like a blood blister from the back of my neck.  I am having wide area excision surgery in two days to remove a 2 cm margin of skin around the original nodular melanoma tumor location.

Your experience with your doctors not being familiar with nodular melanoma is common. 

Approximately two months ago I noticed a bump on the back of my neck that seemed unfamilar.  I am 61 and I have "skin tags" and other benign erratic skin growths on my chest and back.  After feeling the bump enlarging I asked my wife to look at the bump approximately three weeks ago.  She said it looked like a harmless blood blister, perhaps from an infected hair follicle or sweat gland.  I asked her to take a photo of the bump with her smart phone.  She took the photo of the bump and emailed it to me.  The photo of  the bump is my profile photo.

I looked at the photo and out of general curiousity I "googled" melanoma.  In a couple of minutes I was staring at an online photo of nodular melanoma that looked exactly like the photo that my wife took of the bump on the back of my neck.  I showed the online photo of nodular melanoma to my wife and she was very skeptical that my bump could be a life threatening nodular melanoma tumor.  It was only 0.25 inches in diameter and looked like a harmless blood blister.

I was concerned enough about the similarity of the photo of nodular melanoma that I saw on the Internet to the photo of the bump on the back of my neck that I saw my general practitioner the next day.  I told him about the photo of nodular melanoma that I saw on the Internet.  He told me that he thought the bump was a "blue navus" and was likely not nodular melanoma.  He looked at the bump under a hand held optical magnifying lens and told me that he did see ducting in the bump.

My general practitioner referred me to a dermatologist, who I saw a couple of days after I saw my general practitioner.  My dermatologist discounted my concerns about my bump being nodular melanoma.  She said it was likely an unusual basil cell carcinoma.  My dermatologist removed the bump for biopsy analysis.  She called me one week after she removed the growth on the back of my neck and told me in a panicked voice that I had been justified in my concerns that my "bump" was nodular melanoma.

I have been surprised and disappointed that my general practitioner and my dermatologist appear to have little training and experience that would enable them to recognize nodular melanoma.  One of the reasons that nodular melanoma is only 15% of all melanomas and is over 45% of all fatal melanomas is that too many health care practitioners only use the "A B C D" rules when they screen their patients for skin cancer.    Nodular melanoma can and often does look like a harmless often non pigmented bump that does not trigger concern when doctors are using the "A B C D" skin cancer screening rules.

I was diagnosed with Stage 2A nodular melanoma two weeks ago after my dermatologist removed what looked like a blood blister from the back of my neck.  I am having wide area excision surgery in two days to remove a 2 cm margin of skin around the original nodular melanoma tumor location.

Your experience with your doctors not being familiar with nodular melanoma is common. 

Approximately two months ago I noticed a bump on the back of my neck that seemed unfamilar.  I am 61 and I have "skin tags" and other benign erratic skin growths on my chest and back.  After feeling the bump enlarging I asked my wife to look at the bump approximately three weeks ago.  She said it looked like a harmless blood blister, perhaps from an infected hair follicle or sweat gland.  I asked her to take a photo of the bump with her smart phone.  She took the photo of the bump and emailed it to me.  The photo of  the bump is my profile photo.

I looked at the photo and out of general curiousity I "googled" melanoma.  In a couple of minutes I was staring at an online photo of nodular melanoma that looked exactly like the photo that my wife took of the bump on the back of my neck.  I showed the online photo of nodular melanoma to my wife and she was very skeptical that my bump could be a life threatening nodular melanoma tumor.  It was only 0.25 inches in diameter and looked like a harmless blood blister.

I was concerned enough about the similarity of the photo of nodular melanoma that I saw on the Internet to the photo of the bump on the back of my neck that I saw my general practitioner the next day.  I told him about the photo of nodular melanoma that I saw on the Internet.  He told me that he thought the bump was a "blue navus" and was likely not nodular melanoma.  He looked at the bump under a hand held optical magnifying lens and told me that he did see ducting in the bump.

My general practitioner referred me to a dermatologist, who I saw a couple of days after I saw my general practitioner.  My dermatologist discounted my concerns about my bump being nodular melanoma.  She said it was likely an unusual basil cell carcinoma.  My dermatologist removed the bump for biopsy analysis.  She called me one week after she removed the growth on the back of my neck and told me in a panicked voice that I had been justified in my concerns that my "bump" was nodular melanoma.

I have been surprised and disappointed that my general practitioner and my dermatologist appear to have little training and experience that would enable them to recognize nodular melanoma.  One of the reasons that nodular melanoma is only 15% of all melanomas and is over 45% of all fatal melanomas is that too many health care practitioners only use the "A B C D" rules when they screen their patients for skin cancer.    Nodular melanoma can and often does look like a harmless often non pigmented bump that does not trigger concern when doctors are using the "A B C D" skin cancer screening rules.

My primary was found in September, 2010, and like yours and Karen's was nodular.   Mine was 4.35 Breslow, high mitotic rate (9+), Clarke level 5.  The SNB was positive in one node.  To top it off, this is a second cancer for me,  and yet here I am, more than two years later, feeling really good.  So, please don't panic.  I have had an intransit met in the area of the axillary dissection, which I found myself, and at the same time, a solitary lung met found by CT scan.  Both were removed surgically.  I have had no other treatment.  I am therefore stage 4, but currently NED (no evidence of disease).  I want to emphasize to you that you need to get as much information as you can, find a melanoma specialist (mine is Dr. Wolchok at Sloan-Kettering in NYC), and advocate for yourself.  I have been really pushy about my care, sometimes annoying the heck out of my primary care doc and my local medical oncologist.  Melanoma, and particularly nodular melanoma, are still a bit mysterious to most people.  My primary melanoma was dismissed as nothing to worry about by both my primary doc and my dermatologist for a number of months – not good with nodular melanoma!  As Karen said, find a knowledgeable doctor and insist on close observation.  Things are really moving quickly in melanoma treatment, so there is a ton of hope for all of us.  Best wishes!