14 year old son diagnosed

Dear Miss Elizabeth-

Let's all hope and pray that even if it is indeed melanoma, y'all caught it at an early stage.  I'm now 48 and have had moles all over me since 'youngster.  Although i did occasionally get sunburns, i was never a sun "worshipper".  The UV- sun factor is not to be dismissed, but i think in people like me and perhaps most certainly your son, melanoma is mainly a genetic thing.

My son, at 20, had a "pre-melanoma" on his forehead; my older 53 yr. old brother had stage 1 mel. on top of his head.  Both would not have been checked- AND the derm.atologist said "don't worry about that spot"- had it not been for the fact I already had stage 3-b at the time (now stg. 4).  Moral:  Have ALL your family members checked head to toe, and MAKE the dermo. remove ANYTHING you may even Think needs to be.  Do not let them (Dr. Dermo.) dismiss anything.

Meanwhile, I really wish the best for y'all and pray for best wishes.  I know from my 2 sons how worried a parent can be- as any loving parent would and should be.

Love, Grady & Family.

Dear Miss Elizabeth-

Let's all hope and pray that even if it is indeed melanoma, y'all caught it at an early stage.  I'm now 48 and have had moles all over me since 'youngster.  Although i did occasionally get sunburns, i was never a sun "worshipper".  The UV- sun factor is not to be dismissed, but i think in people like me and perhaps most certainly your son, melanoma is mainly a genetic thing.

My son, at 20, had a "pre-melanoma" on his forehead; my older 53 yr. old brother had stage 1 mel. on top of his head.  Both would not have been checked- AND the derm.atologist said "don't worry about that spot"- had it not been for the fact I already had stage 3-b at the time (now stg. 4).  Moral:  Have ALL your family members checked head to toe, and MAKE the dermo. remove ANYTHING you may even Think needs to be.  Do not let them (Dr. Dermo.) dismiss anything.

Meanwhile, I really wish the best for y'all and pray for best wishes.  I know from my 2 sons how worried a parent can be- as any loving parent would and should be.

Love, Grady & Family.

Hi Elizabeth,

I'm so sorry to hear about your son's diagnosis, but this is a great place to get information.  I was diagnosed last July with Stage 3B.  Two weeks ago, I finished my last shot of Interferon.  It sounds like I had my melanoma around the same spot as your son.  Keep positive thoughts and have him do the same.  I think the mental aspect of this disease is paramount.

My sister has a friend whose son was diagnosed around 13.  He is athletic like your son.  It has been over 5 years since his diagnosis…he is doing fine.  Just started college.   No recurrences…no signs of disease.  Stay positive and get informed.  You must be an advocate for your son.  Please post any questions or concerns you might have because there are so many hear willing to help…including me!

Tricia

Hi Elizabeth,

I'm so sorry to hear about your son's diagnosis, but this is a great place to get information.  I was diagnosed last July with Stage 3B.  Two weeks ago, I finished my last shot of Interferon.  It sounds like I had my melanoma around the same spot as your son.  Keep positive thoughts and have him do the same.  I think the mental aspect of this disease is paramount.

My sister has a friend whose son was diagnosed around 13.  He is athletic like your son.  It has been over 5 years since his diagnosis…he is doing fine.  Just started college.   No recurrences…no signs of disease.  Stay positive and get informed.  You must be an advocate for your son.  Please post any questions or concerns you might have because there are so many hear willing to help…including me!

Tricia

Hi Elizabeth, sadly we do have other parents of children with mel here, one of the posters gave a list of them recently,  I'll see if I can find it for you.  I have read that children fair better with mel, will find that study for you too.. just wanted to post quickly to apologize for insisting the MRF remove your extra posts, I mean no offence, just trying to get them to pay attention:)  Talk to you soon, linda

Hi Elizabeth, sadly we do have other parents of children with mel here, one of the posters gave a list of them recently,  I'll see if I can find it for you.  I have read that children fair better with mel, will find that study for you too.. just wanted to post quickly to apologize for insisting the MRF remove your extra posts, I mean no offence, just trying to get them to pay attention:)  Talk to you soon, linda

Sorry to hear about your sons diagnosis. I wanted you to get in touch with Danielle who is starting a blog for young people with melanoma (her daughter was 5 or 6 at diagnosis) and she has info on melanoma and young people at http://littlestwarriorspot.com/

My husband is stage 3a and ever since we have become very aware of the moles on our children. My 9 year old was recently referred to a pediatric derm due to two moles on her vulva. Luckily the doc called them “old moles” .. But it was very stressful to think that my daughter might have melanoma also.

Anyway it is not uncommon for melanoma to present where the sun dont shine…usually mucosal melanoma.

We will pray that you get good results on the 18th.
Emily
http://Www.emandmichael.com

Sorry to hear about your sons diagnosis. I wanted you to get in touch with Danielle who is starting a blog for young people with melanoma (her daughter was 5 or 6 at diagnosis) and she has info on melanoma and young people at http://littlestwarriorspot.com/

My husband is stage 3a and ever since we have become very aware of the moles on our children. My 9 year old was recently referred to a pediatric derm due to two moles on her vulva. Luckily the doc called them “old moles” .. But it was very stressful to think that my daughter might have melanoma also.

Anyway it is not uncommon for melanoma to present where the sun dont shine…usually mucosal melanoma.

We will pray that you get good results on the 18th.
Emily
http://Www.emandmichael.com

Hi Elizabeth,

I am sorry to read about your son and the anguish you are going through right now.  You have found a community who can help with information and support.  As you will hear from others, it is important to have a Melanoma Specialist in your corner, and there are fine ones at Dana Farber, like Keith Flaherty, who is also a well known researcher.  Try to remain calm and ask questions – write them down as well as the answers.  Be your child's advocate, and show him that you are resolved to help him take all necessary steps to fight this.  Show confidence, even if you find that hard to do right now.

The "wart" would logically be Mucosal Melanoma, which is rare (or maybe "strange" if the Doc has not seen it before) but treatable.  Was mucosal melanome mentioned to you?  I was told tthat I might have mucosal several months back, and I did some research.  They would look for what is called a C-Kit gene mutation to determine treatment.  Your pathology report should tell you more – please get a printed copy and get copies of all scans on CDs if and when they occur.  It is not clear why there would be any benefit from having "the biopsy… sent to various specialists around the country as well as Paris" – they have their own lab right there in Boston, I believe, although maybe they wanted a 2nd opinion (and 3rd, 4th, and 5th?). 

There are very promising treatments availabe for your son.  Don't believe all the grim stats you see online – those only look backwards, and your son is not a statistic!  Anyway, best wishes to you and your family in this fight.

Best,

Jim

Hi Elizabeth,

I am sorry to read about your son and the anguish you are going through right now.  You have found a community who can help with information and support.  As you will hear from others, it is important to have a Melanoma Specialist in your corner, and there are fine ones at Dana Farber, like Keith Flaherty, who is also a well known researcher.  Try to remain calm and ask questions – write them down as well as the answers.  Be your child's advocate, and show him that you are resolved to help him take all necessary steps to fight this.  Show confidence, even if you find that hard to do right now.

The "wart" would logically be Mucosal Melanoma, which is rare (or maybe "strange" if the Doc has not seen it before) but treatable.  Was mucosal melanome mentioned to you?  I was told tthat I might have mucosal several months back, and I did some research.  They would look for what is called a C-Kit gene mutation to determine treatment.  Your pathology report should tell you more – please get a printed copy and get copies of all scans on CDs if and when they occur.  It is not clear why there would be any benefit from having "the biopsy… sent to various specialists around the country as well as Paris" – they have their own lab right there in Boston, I believe, although maybe they wanted a 2nd opinion (and 3rd, 4th, and 5th?). 

There are very promising treatments availabe for your son.  Don't believe all the grim stats you see online – those only look backwards, and your son is not a statistic!  Anyway, best wishes to you and your family in this fight.

Best,

Jim

Hi Elizabeth,

I do not post much, but I do still come here most days just to stay abreast of things.  My son, Taylor, was diagnosed in 2006 at the age of 15 1/2.  His primary was located on his temple area.  His derm was also shocked that Taylor's small mole turned out to be mel.  He wanted to refer him to a local onc (we are in NC).  But luckily, I found this site and learned that I needed to get him ASAP to a mel specialist.  That is when I became an advocate for my son, I mean really an advocate (not just a mom!).  I learned about Dr. Richard White at Blumenthal Cancer Center in Charlotte NC.  He has been wonderful with Taylor.  He had to re-do the WLE (that we let the derm do originally) and also did an SNB (which was clear).

Taylor is now 20, working 2 jobs and getting ready to start college (he is a late bloomer!).  The one thing I can tell you, is make sure your son is being treated by a melanoma specialist, not just a regular oncologist.  It does make a difference!  There are other parents of child/teen mel survivors here, hopefully some others will chime in soon.  Just know you have found a safe place and there is alot of knowledge that can be found here.  It can be overwhelming, but we are here for support all you have to do is ask!

Kristin

Hi Elizabeth,

I do not post much, but I do still come here most days just to stay abreast of things.  My son, Taylor, was diagnosed in 2006 at the age of 15 1/2.  His primary was located on his temple area.  His derm was also shocked that Taylor's small mole turned out to be mel.  He wanted to refer him to a local onc (we are in NC).  But luckily, I found this site and learned that I needed to get him ASAP to a mel specialist.  That is when I became an advocate for my son, I mean really an advocate (not just a mom!).  I learned about Dr. Richard White at Blumenthal Cancer Center in Charlotte NC.  He has been wonderful with Taylor.  He had to re-do the WLE (that we let the derm do originally) and also did an SNB (which was clear).

Taylor is now 20, working 2 jobs and getting ready to start college (he is a late bloomer!).  The one thing I can tell you, is make sure your son is being treated by a melanoma specialist, not just a regular oncologist.  It does make a difference!  There are other parents of child/teen mel survivors here, hopefully some others will chime in soon.  Just know you have found a safe place and there is alot of knowledge that can be found here.  It can be overwhelming, but we are here for support all you have to do is ask!

Kristin

Hi Elizabeth

My son was older than yours when he was dx last year (20..yes, an adult but for me still my baby!). his was also a puzzle and shock to the doctors because it was on the tip of his tongue. Send off to 3 pathologists to confirm that it was melanoma. It had spread to one lymph node and he just finished a year of interferon. Pet scan today…

I'd be happy to talk…[email protected]

Becky

Hi Elizabeth

My son was older than yours when he was dx last year (20..yes, an adult but for me still my baby!). his was also a puzzle and shock to the doctors because it was on the tip of his tongue. Send off to 3 pathologists to confirm that it was melanoma. It had spread to one lymph node and he just finished a year of interferon. Pet scan today…

I'd be happy to talk…[email protected]

Becky

Hi Elizabeth,

I see that you are all waiting for the results on Nov 18th. I too am waiting to find out if I am "cancer-free" on that same day. I had a weird looking mole on my back. My husband (who isn't blind!) never bothered to mention to me that there was an "ugly duckling". My mom noticed it when I asked her to scratch my back (Oct 18). God bless Moms everywhere!! Husband said that he has been seeing it for at least the last couple of years. Time to panic? You bet! I immediately went to my family doctor (Oct 21) who booked an appointment for me to see a dermatopathologist, who has about 30 years of experience and  who runs the dermatology clinic at one of the bigger hospitals in my city, almost right away (Oct 26). Biopsy done, melanoma diagnosed (Nov 2). I am thankful that it was only 0.39mm deep but I did need to have surgery with a plastic surgeon in order to remove a bit more skin where the tumour was (Nov 4). Stitches come off on the 18th and the plastic surgeon will let me know if I am cured (clear margins is the correct term, I think).

I am hoping and praying for me and I will keep your son in my hopes and prayers as well.

Maria in Toronto, Canada

Hi Elizabeth,

I see that you are all waiting for the results on Nov 18th. I too am waiting to find out if I am "cancer-free" on that same day. I had a weird looking mole on my back. My husband (who isn't blind!) never bothered to mention to me that there was an "ugly duckling". My mom noticed it when I asked her to scratch my back (Oct 18). God bless Moms everywhere!! Husband said that he has been seeing it for at least the last couple of years. Time to panic? You bet! I immediately went to my family doctor (Oct 21) who booked an appointment for me to see a dermatopathologist, who has about 30 years of experience and  who runs the dermatology clinic at one of the bigger hospitals in my city, almost right away (Oct 26). Biopsy done, melanoma diagnosed (Nov 2). I am thankful that it was only 0.39mm deep but I did need to have surgery with a plastic surgeon in order to remove a bit more skin where the tumour was (Nov 4). Stitches come off on the 18th and the plastic surgeon will let me know if I am cured (clear margins is the correct term, I think).

I am hoping and praying for me and I will keep your son in my hopes and prayers as well.

Maria in Toronto, Canada

Hi Elizabeth,

Like everyone else, I am so sorry to hear that such a young lad is dealing with this horrible beast. But after reading all the responses so far, I am just shaking my head in disbelief at all the people who went to see a doctor/dermatologist and were told it was nothing to worry about. Well, I can add my name to that list. I was told the pink lump on my upper calf was a dermatafibroma, and since it wasn't urgent, I had to wait for almost 4 months to see a surgeon. By then, I had 3 more subcutaneous lumps, which I later learned were intransit lesions. Even then, no one picked up on it!  When the pathology came back, it was metastatic melanoma, 0.9mm deep, but my surgeon was so shocked, he sent it back to the lab for a recheck. And the rest is history. What the hell is wrong with all these "supposed" specialists? If so many people have melanoma that doesn't start from a mole, then why do derms still insist on ignoring amelanotic lumps? And why do they do things like freezing, and shave biopsies? Why don't they err on the side of caution, and biopsy the lump when it's still small, rather than wait until after it has done more damage? Sorry for venting, but a lot of us wouldn't be where we are now if our initial lumps had been taken more seriously, and biopsied right away. I mean, isn't early detection key? GRRR…!!!

Anyway, I wish you and your son well when you go for the SNB results on Thursday. Please share the results with us. I hope it's all clear, but in case it's not, there are a lot of knowledgeable people here who can make suggestions and offer advice on adjuvent treatment. Sending positive vibes from Newfoundland.

Hugs,

Sharyn, Stage IV

Hi Elizabeth,

Like everyone else, I am so sorry to hear that such a young lad is dealing with this horrible beast. But after reading all the responses so far, I am just shaking my head in disbelief at all the people who went to see a doctor/dermatologist and were told it was nothing to worry about. Well, I can add my name to that list. I was told the pink lump on my upper calf was a dermatafibroma, and since it wasn't urgent, I had to wait for almost 4 months to see a surgeon. By then, I had 3 more subcutaneous lumps, which I later learned were intransit lesions. Even then, no one picked up on it!  When the pathology came back, it was metastatic melanoma, 0.9mm deep, but my surgeon was so shocked, he sent it back to the lab for a recheck. And the rest is history. What the hell is wrong with all these "supposed" specialists? If so many people have melanoma that doesn't start from a mole, then why do derms still insist on ignoring amelanotic lumps? And why do they do things like freezing, and shave biopsies? Why don't they err on the side of caution, and biopsy the lump when it's still small, rather than wait until after it has done more damage? Sorry for venting, but a lot of us wouldn't be where we are now if our initial lumps had been taken more seriously, and biopsied right away. I mean, isn't early detection key? GRRR…!!!

Anyway, I wish you and your son well when you go for the SNB results on Thursday. Please share the results with us. I hope it's all clear, but in case it's not, there are a lot of knowledgeable people here who can make suggestions and offer advice on adjuvent treatment. Sending positive vibes from Newfoundland.

Hugs,

Sharyn, Stage IV

Welcome to our Group.

   You have received much good input above.  Yes, melanoma is a scary diagnosis.  At the early stages it should be looked at and followed up on.  Do not become totaly parnoid about it.  You will read that mucousal melanoma is more aggressive than other varieties.  This is  often stated because one is often at an advanced stage before it is discovered.  I started cmplaining to my GP in Jan 2003, it was May 2006 before any attention was paid to my complaints.  The local general surgeon played games and it was Jan 2007 before I learned what an Oncologist was.  By March I was stage IV and told that I would have major breathing problems within 30 days and that according to statistics, 50% of Stge IV patients would be gone in the next 6 month time period with a rapid death rate following that.

     I  am not a statitic, I am me !  Your son received a quick followup and this is great.  This greatly enhances his chance for a good and long live.  IF there were to be any metastisis, it would mmost likely be to the groin lymph nodes.  If your son feels any new lymphs in the crease between the abdomen and the legs I would get these nodes checked.  An enlargement could be due to other than cancer, but do the follow-up.

    Check the pathology reports for any mention of mucousal, only one of many reports on me ever mentioned the word.  Mucousal does lead one to asking about geting the two c-kit tests that are available for mucousal melanoma's.  I started on Gleevec (a targeted treatment), in March 2008 (before it was even in clinical trials for mucousal melanoma) and have had my melanoma remain fairly stable for the 20 months since.  A follow on drug has since started trials and has been succesful in at leat one patient I know with mucousal melanoma.  If the C-kit test are conducted, one can know a likely treatment path to quickly try. (The targeted drugs seem to be beneficial in about 50% of the C-kit cases of melanoma.

    I will be glad to discuss my case and experencies with you either in emails or telephonically if  you would like.

JerryfromFauq

Welcome to our Group.

   You have received much good input above.  Yes, melanoma is a scary diagnosis.  At the early stages it should be looked at and followed up on.  Do not become totaly parnoid about it.  You will read that mucousal melanoma is more aggressive than other varieties.  This is  often stated because one is often at an advanced stage before it is discovered.  I started cmplaining to my GP in Jan 2003, it was May 2006 before any attention was paid to my complaints.  The local general surgeon played games and it was Jan 2007 before I learned what an Oncologist was.  By March I was stage IV and told that I would have major breathing problems within 30 days and that according to statistics, 50% of Stge IV patients would be gone in the next 6 month time period with a rapid death rate following that.

     I  am not a statitic, I am me !  Your son received a quick followup and this is great.  This greatly enhances his chance for a good and long live.  IF there were to be any metastisis, it would mmost likely be to the groin lymph nodes.  If your son feels any new lymphs in the crease between the abdomen and the legs I would get these nodes checked.  An enlargement could be due to other than cancer, but do the follow-up.

    Check the pathology reports for any mention of mucousal, only one of many reports on me ever mentioned the word.  Mucousal does lead one to asking about geting the two c-kit tests that are available for mucousal melanoma's.  I started on Gleevec (a targeted treatment), in March 2008 (before it was even in clinical trials for mucousal melanoma) and have had my melanoma remain fairly stable for the 20 months since.  A follow on drug has since started trials and has been succesful in at leat one patient I know with mucousal melanoma.  If the C-kit test are conducted, one can know a likely treatment path to quickly try. (The targeted drugs seem to be beneficial in about 50% of the C-kit cases of melanoma.

    I will be glad to discuss my case and experencies with you either in emails or telephonically if  you would like.

JerryfromFauq