› Forums › General Melanoma Community › Would appreciate some advice
- This topic has 18 replies, 4 voices, and was last updated 14 years ago by
lhaley.
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- December 2, 2011 at 8:32 am
I have just recently been diagnosed with my 3rd primary melanoma in 2 years. The first diagnosis was in Oct 2009 as melanoma in-situ (chest), the second in Jan 2011 as 0.24mm Clark II (upper back) and the 3rd in October 2011 as 0.45mm Clark III mitotic rate 1 (lower back). I live in South Africa, where melanoma is almost unheard of amongst the lay person. Although my doctors are very helpful and caring and they answer all of my questions, I just can't help feeling desperate.
I have just recently been diagnosed with my 3rd primary melanoma in 2 years. The first diagnosis was in Oct 2009 as melanoma in-situ (chest), the second in Jan 2011 as 0.24mm Clark II (upper back) and the 3rd in October 2011 as 0.45mm Clark III mitotic rate 1 (lower back). I live in South Africa, where melanoma is almost unheard of amongst the lay person. Although my doctors are very helpful and caring and they answer all of my questions, I just can't help feeling desperate. I don't understand why I have had so many primary melanomas in the space of only 2 years, and why each one is worse than the previous one. My dermatologist checks me out every 3 months and I have mole scans etc, but still the 3rd one came up out of normal skin (not even a pre existing mole) and wasn't there at the end of June 2011, when I had my last full body photographs taken! I can't believe that it could have grown so fast! It appeared out of nothing in less than 4 months!
No one in my family has ever been diagnosed with a melanoma, but my doctors still say that I must have a hereditary predisposition.
Is it common for people to keep on an on getting new primaries? Is it likely that my last one could have spread (being Clark III)?
I have a 1 year old son and I need to be around long enough to see him grow up, but with a new melanoma popping up out of the blue at every turn I feel less and less positive about my chances.
I also feel like I've become obsessed about this. I think about it all the time. I battle to concentrate at work, and I can't sleep at night because I'm always imagining that I have another invasive melanoma lurking. I check my skin all the time, but that makes it worse because I could swear I see new dots. I'm also paranoid about any pain and I constantly look for lumps under my arms and in my groin. I'm driving myself crazy!
Thanks for any advice
Angela
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- December 2, 2011 at 2:25 pm
Angela,
At this time all of your melanoma's have been found very thin. You need to be viligent. With 3 this quickly you could be having a heredity issue.
My first melanoma was in 1979 and then have had over 7 primaries during the time and they also discovered that I have dysplastic nevus syndrome. Continue to take pictures, be very sunwise, continue going to the Derm. every 3 months. Also, be careful of your son being sunwise.
My melanoma did recur after 27 years. Mine also was thicker of yours and my case is unique. 3 of the melanoma's were found within a few months of each other! Then there was no new moles for quite a while.
Linda
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- December 2, 2011 at 2:25 pm
Angela,
At this time all of your melanoma's have been found very thin. You need to be viligent. With 3 this quickly you could be having a heredity issue.
My first melanoma was in 1979 and then have had over 7 primaries during the time and they also discovered that I have dysplastic nevus syndrome. Continue to take pictures, be very sunwise, continue going to the Derm. every 3 months. Also, be careful of your son being sunwise.
My melanoma did recur after 27 years. Mine also was thicker of yours and my case is unique. 3 of the melanoma's were found within a few months of each other! Then there was no new moles for quite a while.
Linda
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- December 2, 2011 at 9:42 pm
Hi Linda. Thanks for your response. After reading it I read your profile, which is fascinating. How does a melanoma recur after so many years? And how do doctors determine which one has recurred? Is it because of the location of the lump? How are you doing now? -
- December 2, 2011 at 9:42 pm
Hi Linda. Thanks for your response. After reading it I read your profile, which is fascinating. How does a melanoma recur after so many years? And how do doctors determine which one has recurred? Is it because of the location of the lump? How are you doing now? -
- December 2, 2011 at 10:06 pm
My profile is now finished and unfortunately have now progressed…. but this has now been 5 years of being stage IV and hopefully the brain met will soon burn up! Scans on Tuesday.
Mine actually was discovered under the original mole! Originally they had a difficult time staging because some considered it an intransit. After seeing many different Doctors they decided it was deep enough that it was stage IV. It doesn't happen this often but it did. They think that my immune system has done a great job over the years and kept this at bay. Just think of the advances that have been made during this time.
During all of those years I watched my skin and lived life! During that time my son was born, went on with my masters degree, had a full carreer and retired! Anotherwords you can't stop living.
Just had to comment this. On your post originally you commented about the Clarks's level. Wallace Clark happened to be my first melanoma specialist! What a special man he was.
Linda
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- December 2, 2011 at 10:06 pm
My profile is now finished and unfortunately have now progressed…. but this has now been 5 years of being stage IV and hopefully the brain met will soon burn up! Scans on Tuesday.
Mine actually was discovered under the original mole! Originally they had a difficult time staging because some considered it an intransit. After seeing many different Doctors they decided it was deep enough that it was stage IV. It doesn't happen this often but it did. They think that my immune system has done a great job over the years and kept this at bay. Just think of the advances that have been made during this time.
During all of those years I watched my skin and lived life! During that time my son was born, went on with my masters degree, had a full carreer and retired! Anotherwords you can't stop living.
Just had to comment this. On your post originally you commented about the Clarks's level. Wallace Clark happened to be my first melanoma specialist! What a special man he was.
Linda
-
- December 2, 2011 at 10:06 pm
My profile is now finished and unfortunately have now progressed…. but this has now been 5 years of being stage IV and hopefully the brain met will soon burn up! Scans on Tuesday.
Mine actually was discovered under the original mole! Originally they had a difficult time staging because some considered it an intransit. After seeing many different Doctors they decided it was deep enough that it was stage IV. It doesn't happen this often but it did. They think that my immune system has done a great job over the years and kept this at bay. Just think of the advances that have been made during this time.
During all of those years I watched my skin and lived life! During that time my son was born, went on with my masters degree, had a full carreer and retired! Anotherwords you can't stop living.
Just had to comment this. On your post originally you commented about the Clarks's level. Wallace Clark happened to be my first melanoma specialist! What a special man he was.
Linda
-
- December 2, 2011 at 9:42 pm
Hi Linda. Thanks for your response. After reading it I read your profile, which is fascinating. How does a melanoma recur after so many years? And how do doctors determine which one has recurred? Is it because of the location of the lump? How are you doing now?
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- December 2, 2011 at 2:25 pm
Angela,
At this time all of your melanoma's have been found very thin. You need to be viligent. With 3 this quickly you could be having a heredity issue.
My first melanoma was in 1979 and then have had over 7 primaries during the time and they also discovered that I have dysplastic nevus syndrome. Continue to take pictures, be very sunwise, continue going to the Derm. every 3 months. Also, be careful of your son being sunwise.
My melanoma did recur after 27 years. Mine also was thicker of yours and my case is unique. 3 of the melanoma's were found within a few months of each other! Then there was no new moles for quite a while.
Linda
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- December 2, 2011 at 3:50 pm
No, it's not usually to have more than one primary – only about 8% of the melanoma population do. People with multiple primaries do have a higher risk for a genetic defect, but given you family history of no melanoma, that's probably not likely. Genetic defects tend to show themselves in multiple generations. Do you have Dysplastic Nevus Syndrome? 100+ atypical moles? People with DNS are also at higher risk for multiple primaries.
50% of melanomas are found in moles, 50% arise as new lesions. So while it's important that you do mole mapping, it's also important to have photos of the areas around your moles – bare skin. Most people with multiple primaries do tend to have thinner melanomas for the multiples because they are more aware of their skin. I've had 3 like you, and my third one was also my deepest at 0.88mm. All of your melanomas have been very thin and the likelihood that any have/will spread is extremely low. Just so you know, the survival rate of those with multiple primaries is actually better than those with just one. So you get to take the good with the bad.
Hang in there. Maybe for you, you need to have more frequent appointments so you can feel on top of this for now. I can tell you that I spend exactly 0 time worrying about lumps and bumps and lymph nodes. I schedule my own monthly self exam and I have a derm appointment every 6 months. I don't have a ton of moles so it is easier for me to monitor.
Janner
Clark II/0.58mm in 1992
in situ in 2000
Clark III/0.88mm in 2001
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- December 2, 2011 at 3:50 pm
No, it's not usually to have more than one primary – only about 8% of the melanoma population do. People with multiple primaries do have a higher risk for a genetic defect, but given you family history of no melanoma, that's probably not likely. Genetic defects tend to show themselves in multiple generations. Do you have Dysplastic Nevus Syndrome? 100+ atypical moles? People with DNS are also at higher risk for multiple primaries.
50% of melanomas are found in moles, 50% arise as new lesions. So while it's important that you do mole mapping, it's also important to have photos of the areas around your moles – bare skin. Most people with multiple primaries do tend to have thinner melanomas for the multiples because they are more aware of their skin. I've had 3 like you, and my third one was also my deepest at 0.88mm. All of your melanomas have been very thin and the likelihood that any have/will spread is extremely low. Just so you know, the survival rate of those with multiple primaries is actually better than those with just one. So you get to take the good with the bad.
Hang in there. Maybe for you, you need to have more frequent appointments so you can feel on top of this for now. I can tell you that I spend exactly 0 time worrying about lumps and bumps and lymph nodes. I schedule my own monthly self exam and I have a derm appointment every 6 months. I don't have a ton of moles so it is easier for me to monitor.
Janner
Clark II/0.58mm in 1992
in situ in 2000
Clark III/0.88mm in 2001
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- December 2, 2011 at 9:22 pm
Thanks a lot for the response. The fact that there are others that have had 3 or more and are still going strong years later makes me feel a whole lot better. However, yes I think I do have Dysplastic Naevus Syndrome. I have many moles and have already had approx. 60 removed already, with the vast majority ranging from mildly to severely dysplastic. So from what you say I guess this means that I am predisposed and I will likely get more. Hopefully I can catch them all in time like you did! -
- December 2, 2011 at 9:22 pm
Thanks a lot for the response. The fact that there are others that have had 3 or more and are still going strong years later makes me feel a whole lot better. However, yes I think I do have Dysplastic Naevus Syndrome. I have many moles and have already had approx. 60 removed already, with the vast majority ranging from mildly to severely dysplastic. So from what you say I guess this means that I am predisposed and I will likely get more. Hopefully I can catch them all in time like you did! -
- December 2, 2011 at 9:22 pm
Thanks a lot for the response. The fact that there are others that have had 3 or more and are still going strong years later makes me feel a whole lot better. However, yes I think I do have Dysplastic Naevus Syndrome. I have many moles and have already had approx. 60 removed already, with the vast majority ranging from mildly to severely dysplastic. So from what you say I guess this means that I am predisposed and I will likely get more. Hopefully I can catch them all in time like you did!
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- December 2, 2011 at 3:50 pm
No, it's not usually to have more than one primary – only about 8% of the melanoma population do. People with multiple primaries do have a higher risk for a genetic defect, but given you family history of no melanoma, that's probably not likely. Genetic defects tend to show themselves in multiple generations. Do you have Dysplastic Nevus Syndrome? 100+ atypical moles? People with DNS are also at higher risk for multiple primaries.
50% of melanomas are found in moles, 50% arise as new lesions. So while it's important that you do mole mapping, it's also important to have photos of the areas around your moles – bare skin. Most people with multiple primaries do tend to have thinner melanomas for the multiples because they are more aware of their skin. I've had 3 like you, and my third one was also my deepest at 0.88mm. All of your melanomas have been very thin and the likelihood that any have/will spread is extremely low. Just so you know, the survival rate of those with multiple primaries is actually better than those with just one. So you get to take the good with the bad.
Hang in there. Maybe for you, you need to have more frequent appointments so you can feel on top of this for now. I can tell you that I spend exactly 0 time worrying about lumps and bumps and lymph nodes. I schedule my own monthly self exam and I have a derm appointment every 6 months. I don't have a ton of moles so it is easier for me to monitor.
Janner
Clark II/0.58mm in 1992
in situ in 2000
Clark III/0.88mm in 2001
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Tagged: cutaneous melanoma
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