› Forums › Pediatric & AYA Melanoma Community › what to do??!! 4 year old daughter high risk for skin cancer/melanoma…
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Dawn.
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- October 2, 2011 at 9:55 pm
Hey everyone! some of you may remember me from years ago… my husband Sean passed away from melanoma in august, 2008… Since then my life has been completely different! our daughters and i have had our good and bad days, but i think we are coping well… Unfortunately though, the battle still continues for us! our youngest daughter ella seems to have been stricken with a very high risk for melanoma.. Not only has she lost her dad to melanoma, but by the age of 3, she had a spitz nevus removed and had to have surgery to have a descent sized dysplastic nevus removed…
Hey everyone! some of you may remember me from years ago… my husband Sean passed away from melanoma in august, 2008… Since then my life has been completely different! our daughters and i have had our good and bad days, but i think we are coping well… Unfortunately though, the battle still continues for us! our youngest daughter ella seems to have been stricken with a very high risk for melanoma.. Not only has she lost her dad to melanoma, but by the age of 3, she had a spitz nevus removed and had to have surgery to have a descent sized dysplastic nevus removed… She is now 4 and has another 'spot' on her torso that measures 2.2cm by 9mm.. it is about a shade or 2 darker then her actual skin color and it has been there for about 2 months.. She sees a dermatologist regularly and i also took her in to her family doctor as soon as i realized this is a spot that is not going away! (at first i just thought it was a faded bruise). Her family doctor (who has actually been very wonderful with ella and has significantly helped keeping up with her skin checks) has recommended waiting and watching this spot and re-measuring on a monthly basis-her appt. with her derm is this coming wednesday. At first i agreed with watching it, but after thinking about it CONSTANTLY, i have come to the conclusion that i don't want to wait and watch it! I don't want to watch it grow and turn into something atypical! Yes, it looks harmless now, so why can't we remove it now before it does turn into something harmful?! I called her doctor back and let him know how i feel about the situation, but it is not as simple as just going to get a quick biopsy a the dr.s office-she will have to have a referral to her pediatric surgeon and they will have to put her out… so there are risks with that! I have a feeling her dermatologist will say the same thing about watching and waiting. I guess this post is more of a venting post then a question! Anyways… any suggestions for me? Any points that i should bring up with her derm to as WHY she should have this removed?! Anyone that has had any experience with pediatric melanoma-what did your childs melanoma look like?! I do know that a majority of childhood melanomas are not necessarily presented as a melanoma would during adulthood.. Does anyone agree or disagree that the risk is higher to leave it on her then the risks that may come by having it removed?! Any comments are appreciated! Thank you,
Nicole (Widow of Sean)
never, never, never give up!
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- October 2, 2011 at 11:07 pm
Hi Nicole,
Of course, I remember you and the struggles you went through with Sean. I have sometmes wondered how you were doing.
No advice to give as far as Ella is concerned, except to say I'm sorry you are going through this. Did you ever start nursing school?
Jackie W
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- October 2, 2011 at 11:14 pm
Jackie!! Oh it's been soooo long… how have you been doing?? No nursing school for me YET… I attempted enrolling a while back, but the scheduling just wasn't working for me being a full time mom and working full time… still something I would LOVE to be able to do.. there is still time! Ella will be in school next year, so I may have to attempt again then… I do not visit the boards much anymore… but I still think about everyone all the time!
Nicole
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- October 2, 2011 at 11:14 pm
Jackie!! Oh it's been soooo long… how have you been doing?? No nursing school for me YET… I attempted enrolling a while back, but the scheduling just wasn't working for me being a full time mom and working full time… still something I would LOVE to be able to do.. there is still time! Ella will be in school next year, so I may have to attempt again then… I do not visit the boards much anymore… but I still think about everyone all the time!
Nicole
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- October 2, 2011 at 11:07 pm
Hi Nicole,
Of course, I remember you and the struggles you went through with Sean. I have sometmes wondered how you were doing.
No advice to give as far as Ella is concerned, except to say I'm sorry you are going through this. Did you ever start nursing school?
Jackie W
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- October 2, 2011 at 11:13 pm
Dearest Nicole…you have gone through so much and now to worry about Ella, life can be hard, very hard quite often. I don't have much to say other than tell you a story. When I was diagnosed with melanoma, our neighbour told me that her daughter Arlene has been fighting the monster for many many years.
Arlene has a mole covering a large area of her leg (there probably is a correct name for it, if you want I can call her mom and get it). Melanoma as a teenager was discovered early and was removed…this now has been going on now for a very long time. She is almost 50!! She is very diligent and sees her dermatologist in a melanoma centre about every 6 months. It has come the point that she actually points out any melanoma growths that need to be removed.
Perhaps one thing I would suggest is that she be seen by a dermatologist in a specialized centre for melanoma…if she is not already.
Whatever decision you make, know it will be the right one. Val
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- October 3, 2011 at 1:53 am
Thank you Val!
If you read my post below to Janner, you will see that I am very nigilant with my daughters and their skin checks! I have met many wonderful people from the mpip… and I know I will never give up hope no matter what happens! I have met many survivors, some of them being 20+ year stage 4 survivors!! Thank you so very much for your response! : )
Nicole
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- October 3, 2011 at 1:53 am
Thank you Val!
If you read my post below to Janner, you will see that I am very nigilant with my daughters and their skin checks! I have met many wonderful people from the mpip… and I know I will never give up hope no matter what happens! I have met many survivors, some of them being 20+ year stage 4 survivors!! Thank you so very much for your response! : )
Nicole
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- October 2, 2011 at 11:13 pm
Dearest Nicole…you have gone through so much and now to worry about Ella, life can be hard, very hard quite often. I don't have much to say other than tell you a story. When I was diagnosed with melanoma, our neighbour told me that her daughter Arlene has been fighting the monster for many many years.
Arlene has a mole covering a large area of her leg (there probably is a correct name for it, if you want I can call her mom and get it). Melanoma as a teenager was discovered early and was removed…this now has been going on now for a very long time. She is almost 50!! She is very diligent and sees her dermatologist in a melanoma centre about every 6 months. It has come the point that she actually points out any melanoma growths that need to be removed.
Perhaps one thing I would suggest is that she be seen by a dermatologist in a specialized centre for melanoma…if she is not already.
Whatever decision you make, know it will be the right one. Val
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- October 2, 2011 at 11:48 pm
Hi Nicole,
Glad to see you posting. My question for you is are you planning on having all Ella's moles removed? Where do you draw the line between what stays and what goes? If you don't want to watch for change, what is your criteria going to be for now and in the future? Surgical removal of everything? Almost all pediatric melanoma patients don't have parent's with melanoma, you know. And most pediatric patients that I've seen post here in the past have had non-pigmented lesions – either red or skin colored lesions.
I don't know if this particular lesion should be removed or not – none of us do. Just asking some questions for you to think about for the future. I'd never want to neglect anything suspicious, but I also hate to have your daughter have unnecessary surgeries.
Wishing you all the best!
Janner
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- October 2, 2011 at 11:48 pm
Hi Nicole,
Glad to see you posting. My question for you is are you planning on having all Ella's moles removed? Where do you draw the line between what stays and what goes? If you don't want to watch for change, what is your criteria going to be for now and in the future? Surgical removal of everything? Almost all pediatric melanoma patients don't have parent's with melanoma, you know. And most pediatric patients that I've seen post here in the past have had non-pigmented lesions – either red or skin colored lesions.
I don't know if this particular lesion should be removed or not – none of us do. Just asking some questions for you to think about for the future. I'd never want to neglect anything suspicious, but I also hate to have your daughter have unnecessary surgeries.
Wishing you all the best!
Janner
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- October 3, 2011 at 1:35 am
Thank you Janner!
As you have brought out many good points… I have definitely already thought about them a million times! Ella has tons of moles already… we do monthly skin checks and she sees a dermatologist a few times a year. No, I will not be having EVERY mole removed! The reasoning for my concern for this new spot is just that! It is new! It does not look like her other moles/freckles… the size of it concerns me, and yes, she has the family history! Now I completely understand that pediatric melanoma is extremely rare and almost never does the child have a parent that had melanoma… that is not so much what I am concerned about. What does concern me is that what happens when I leave these suspicious looking spots on her until she is older? My concern is not so much about what could happen now, but what all of this may turn out to be when she grows up! Sean was 24 when he passed away… far to young! If I am not having concerning spots removed then why do we do skin checks every month.. year..?? I've learned so much through my journey with Sean and the one thing you see repeated over and over on any information about melanoma is to do checks regularly and have any suspicious spots removed. I know that melanoma at a stage 1 has a significantly higher survival rate then any other stage. I do know that if she is going to get melanoma, she will get it, so my job is to catch it before it progresses beyond that beginning stage. I feel I have done quite well with her skin checks and determining when and what should be biopsied. The other 2 moles she had removed-were both described as harmless looking, but because of my concern and her family history, her doctors went ahead with the surgeries I requested (and as said before, one was a spitz nevus, one a dysplastic nevus… both atypical). I HATE that I am being put to this test.. how will I know if it is necessary to put her through these surgeries? Why do I feel like a bad mom to want to put my daughter through a surgery, but feel worse if I don't do it?! Sorry, like I said before, guess this is more of a venting post! And to be honest, I am feeling guilty about wanting to have this removed, but the concern of it is literally driving me insane!
Thank you for the response… its so good to see you all still posting! Best wishes to you all…
Nicole
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- October 3, 2011 at 1:50 am
Nicole,
There is no answer, you just have to go with your best intuition and going with a Dr that has a lot of experience with melanoma.
My original mole was found when I was 26. My son was born a few years ago and I watched him carefully. I took him to a major melanoma center to watch him. He also developed dysplastic moles and had many. They took pictures of them and measured them to compare them. The difficulty is that when they are young the moles are growing with them. He is now 30 and still going to a derm and watching them. I'm still yelling at him to get certain moles and being very protective. So far they are ok.
Your not being a bad mom to have your daughter go through surgery. Make sure and get pictures always have the same camera with the same setting with the same lighting and the same distance between the camera and Ella. You can even get some little tape with measurements on them. Yes they still will change but when you take the pictures with you to the derms appointment and that will help them make if the change is normal with a growing child.
It was great meeting with you in NC when many of us got together. No matter what decision you make will be the best one you can make at the moment.
Linda
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- October 3, 2011 at 2:57 pm
Linda!
Thanks for making me feel better! : ) I am fairly confident the girls are in good hands with the dermatologist they see! It definitely took some 'shopping around', but he seems very knowledgeable of melanoma. (Other derms that we have seen just seemed so bent on cosmetics!)
As much as I hate that Ella has gone through these biopsies and probably always will… I do think it will become a way of life for her!
It was soooo great meeting all of you also! and glad I can still catch up with some of you on facebook when I am not around the mpip board!! : )
never, never, never give up!
Nicole
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- October 3, 2011 at 2:57 pm
Linda!
Thanks for making me feel better! : ) I am fairly confident the girls are in good hands with the dermatologist they see! It definitely took some 'shopping around', but he seems very knowledgeable of melanoma. (Other derms that we have seen just seemed so bent on cosmetics!)
As much as I hate that Ella has gone through these biopsies and probably always will… I do think it will become a way of life for her!
It was soooo great meeting all of you also! and glad I can still catch up with some of you on facebook when I am not around the mpip board!! : )
never, never, never give up!
Nicole
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- October 3, 2011 at 1:50 am
Nicole,
There is no answer, you just have to go with your best intuition and going with a Dr that has a lot of experience with melanoma.
My original mole was found when I was 26. My son was born a few years ago and I watched him carefully. I took him to a major melanoma center to watch him. He also developed dysplastic moles and had many. They took pictures of them and measured them to compare them. The difficulty is that when they are young the moles are growing with them. He is now 30 and still going to a derm and watching them. I'm still yelling at him to get certain moles and being very protective. So far they are ok.
Your not being a bad mom to have your daughter go through surgery. Make sure and get pictures always have the same camera with the same setting with the same lighting and the same distance between the camera and Ella. You can even get some little tape with measurements on them. Yes they still will change but when you take the pictures with you to the derms appointment and that will help them make if the change is normal with a growing child.
It was great meeting with you in NC when many of us got together. No matter what decision you make will be the best one you can make at the moment.
Linda
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- October 3, 2011 at 9:03 pm
Nicole,
I can see you've thought things through. It sounds like you are not so worried about now, but trying to protect her in the future. Tough job. DNS is tough. But just because the moles she had removed were atypical (and likely others are too) doesn't mean they'll change to melanoma. The vast amount of them never do. It's a tough call between wanting to remove everything suspicious now, or just monitor. Your experience with Sean makes you want to be proactive and that's understandable. It's a fine line and I hope you find a good balance! I'm going to include my notes I got at a symposium from my local institute which actively uses Mole Mapping (photography with smart software) to watch DNS patients:
50% of melanomas arise from existing moles. In the mole mapping clinic, the doctors have mapped 5945 moles. Over a 4 year period, 96 moles showed changes and were biopsied. 98% of the atypical moles were stable. The mole mapping software is used on patients with DNS or those with multiple primaries. Additional notes: a changing mole is ok as long as it is changing symmetrically.
Best wishes,
Janner
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- October 3, 2011 at 9:03 pm
Nicole,
I can see you've thought things through. It sounds like you are not so worried about now, but trying to protect her in the future. Tough job. DNS is tough. But just because the moles she had removed were atypical (and likely others are too) doesn't mean they'll change to melanoma. The vast amount of them never do. It's a tough call between wanting to remove everything suspicious now, or just monitor. Your experience with Sean makes you want to be proactive and that's understandable. It's a fine line and I hope you find a good balance! I'm going to include my notes I got at a symposium from my local institute which actively uses Mole Mapping (photography with smart software) to watch DNS patients:
50% of melanomas arise from existing moles. In the mole mapping clinic, the doctors have mapped 5945 moles. Over a 4 year period, 96 moles showed changes and were biopsied. 98% of the atypical moles were stable. The mole mapping software is used on patients with DNS or those with multiple primaries. Additional notes: a changing mole is ok as long as it is changing symmetrically.
Best wishes,
Janner
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- October 3, 2011 at 1:35 am
Thank you Janner!
As you have brought out many good points… I have definitely already thought about them a million times! Ella has tons of moles already… we do monthly skin checks and she sees a dermatologist a few times a year. No, I will not be having EVERY mole removed! The reasoning for my concern for this new spot is just that! It is new! It does not look like her other moles/freckles… the size of it concerns me, and yes, she has the family history! Now I completely understand that pediatric melanoma is extremely rare and almost never does the child have a parent that had melanoma… that is not so much what I am concerned about. What does concern me is that what happens when I leave these suspicious looking spots on her until she is older? My concern is not so much about what could happen now, but what all of this may turn out to be when she grows up! Sean was 24 when he passed away… far to young! If I am not having concerning spots removed then why do we do skin checks every month.. year..?? I've learned so much through my journey with Sean and the one thing you see repeated over and over on any information about melanoma is to do checks regularly and have any suspicious spots removed. I know that melanoma at a stage 1 has a significantly higher survival rate then any other stage. I do know that if she is going to get melanoma, she will get it, so my job is to catch it before it progresses beyond that beginning stage. I feel I have done quite well with her skin checks and determining when and what should be biopsied. The other 2 moles she had removed-were both described as harmless looking, but because of my concern and her family history, her doctors went ahead with the surgeries I requested (and as said before, one was a spitz nevus, one a dysplastic nevus… both atypical). I HATE that I am being put to this test.. how will I know if it is necessary to put her through these surgeries? Why do I feel like a bad mom to want to put my daughter through a surgery, but feel worse if I don't do it?! Sorry, like I said before, guess this is more of a venting post! And to be honest, I am feeling guilty about wanting to have this removed, but the concern of it is literally driving me insane!
Thank you for the response… its so good to see you all still posting! Best wishes to you all…
Nicole
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- October 3, 2011 at 1:35 am
Thank you Janner!
As you have brought out many good points… I have definitely already thought about them a million times! Ella has tons of moles already… we do monthly skin checks and she sees a dermatologist a few times a year. No, I will not be having EVERY mole removed! The reasoning for my concern for this new spot is just that! It is new! It does not look like her other moles/freckles… the size of it concerns me, and yes, she has the family history! Now I completely understand that pediatric melanoma is extremely rare and almost never does the child have a parent that had melanoma… that is not so much what I am concerned about. What does concern me is that what happens when I leave these suspicious looking spots on her until she is older? My concern is not so much about what could happen now, but what all of this may turn out to be when she grows up! Sean was 24 when he passed away… far to young! If I am not having concerning spots removed then why do we do skin checks every month.. year..?? I've learned so much through my journey with Sean and the one thing you see repeated over and over on any information about melanoma is to do checks regularly and have any suspicious spots removed. I know that melanoma at a stage 1 has a significantly higher survival rate then any other stage. I do know that if she is going to get melanoma, she will get it, so my job is to catch it before it progresses beyond that beginning stage. I feel I have done quite well with her skin checks and determining when and what should be biopsied. The other 2 moles she had removed-were both described as harmless looking, but because of my concern and her family history, her doctors went ahead with the surgeries I requested (and as said before, one was a spitz nevus, one a dysplastic nevus… both atypical). I HATE that I am being put to this test.. how will I know if it is necessary to put her through these surgeries? Why do I feel like a bad mom to want to put my daughter through a surgery, but feel worse if I don't do it?! Sorry, like I said before, guess this is more of a venting post! And to be honest, I am feeling guilty about wanting to have this removed, but the concern of it is literally driving me insane!
Thank you for the response… its so good to see you all still posting! Best wishes to you all…
Nicole
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- October 3, 2011 at 1:35 am
Thank you Janner!
As you have brought out many good points… I have definitely already thought about them a million times! Ella has tons of moles already… we do monthly skin checks and she sees a dermatologist a few times a year. No, I will not be having EVERY mole removed! The reasoning for my concern for this new spot is just that! It is new! It does not look like her other moles/freckles… the size of it concerns me, and yes, she has the family history! Now I completely understand that pediatric melanoma is extremely rare and almost never does the child have a parent that had melanoma… that is not so much what I am concerned about. What does concern me is that what happens when I leave these suspicious looking spots on her until she is older? My concern is not so much about what could happen now, but what all of this may turn out to be when she grows up! Sean was 24 when he passed away… far to young! If I am not having concerning spots removed then why do we do skin checks every month.. year..?? I've learned so much through my journey with Sean and the one thing you see repeated over and over on any information about melanoma is to do checks regularly and have any suspicious spots removed. I know that melanoma at a stage 1 has a significantly higher survival rate then any other stage. I do know that if she is going to get melanoma, she will get it, so my job is to catch it before it progresses beyond that beginning stage. I feel I have done quite well with her skin checks and determining when and what should be biopsied. The other 2 moles she had removed-were both described as harmless looking, but because of my concern and her family history, her doctors went ahead with the surgeries I requested (and as said before, one was a spitz nevus, one a dysplastic nevus… both atypical). I HATE that I am being put to this test.. how will I know if it is necessary to put her through these surgeries? Why do I feel like a bad mom to want to put my daughter through a surgery, but feel worse if I don't do it?! Sorry, like I said before, guess this is more of a venting post! And to be honest, I am feeling guilty about wanting to have this removed, but the concern of it is literally driving me insane!
Thank you for the response… its so good to see you all still posting! Best wishes to you all…
Nicole
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- October 4, 2011 at 3:51 am
Nicole
I am a mother who lost my daughter at age 10 from melanoma. She was diagnosed at age eight. Her melanoma was very rare and presented as a tumor in her brain and central nervous system. I, as her mother thought I had missed something, a mole somewhere, but after many doctors from MDA and Sloan Kettering and St Judes examined her and all agreed, there was not a spot to find. Her cancer was rare, but now I fear for my other children. I know the feeling of looking over your children often and noting every change, wether it is big or small. I know the fear of watching and waiting and if that is the right decision. As a parent, it is a different ball game than if you are caring for a spouse…the responsibility is huge. My seven year old son had a spot on his heel that just appeared. It was black, round and just there. I was nervous. I thought I would wait and watch….but then the brain starts taking you places and I could not wait. I called and got him in immediately. The derm docs know my daughter's case and they are very good about getting us in and checking the kids. Trust your instincts. If you feel stongly about getting it removed, then do it. Put your mind at ease…sleep a little better. .I don't ever want to look back and wonder…just .trust yourself.
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- October 4, 2011 at 3:51 am
Nicole
I am a mother who lost my daughter at age 10 from melanoma. She was diagnosed at age eight. Her melanoma was very rare and presented as a tumor in her brain and central nervous system. I, as her mother thought I had missed something, a mole somewhere, but after many doctors from MDA and Sloan Kettering and St Judes examined her and all agreed, there was not a spot to find. Her cancer was rare, but now I fear for my other children. I know the feeling of looking over your children often and noting every change, wether it is big or small. I know the fear of watching and waiting and if that is the right decision. As a parent, it is a different ball game than if you are caring for a spouse…the responsibility is huge. My seven year old son had a spot on his heel that just appeared. It was black, round and just there. I was nervous. I thought I would wait and watch….but then the brain starts taking you places and I could not wait. I called and got him in immediately. The derm docs know my daughter's case and they are very good about getting us in and checking the kids. Trust your instincts. If you feel stongly about getting it removed, then do it. Put your mind at ease…sleep a little better. .I don't ever want to look back and wonder…just .trust yourself.
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- October 4, 2011 at 3:51 am
Nicole
I am a mother who lost my daughter at age 10 from melanoma. She was diagnosed at age eight. Her melanoma was very rare and presented as a tumor in her brain and central nervous system. I, as her mother thought I had missed something, a mole somewhere, but after many doctors from MDA and Sloan Kettering and St Judes examined her and all agreed, there was not a spot to find. Her cancer was rare, but now I fear for my other children. I know the feeling of looking over your children often and noting every change, wether it is big or small. I know the fear of watching and waiting and if that is the right decision. As a parent, it is a different ball game than if you are caring for a spouse…the responsibility is huge. My seven year old son had a spot on his heel that just appeared. It was black, round and just there. I was nervous. I thought I would wait and watch….but then the brain starts taking you places and I could not wait. I called and got him in immediately. The derm docs know my daughter's case and they are very good about getting us in and checking the kids. Trust your instincts. If you feel stongly about getting it removed, then do it. Put your mind at ease…sleep a little better. .I don't ever want to look back and wonder…just .trust yourself.
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- October 4, 2011 at 3:51 am
Nicole
I am a mother who lost my daughter at age 10 from melanoma. She was diagnosed at age eight. Her melanoma was very rare and presented as a tumor in her brain and central nervous system. I, as her mother thought I had missed something, a mole somewhere, but after many doctors from MDA and Sloan Kettering and St Judes examined her and all agreed, there was not a spot to find. Her cancer was rare, but now I fear for my other children. I know the feeling of looking over your children often and noting every change, wether it is big or small. I know the fear of watching and waiting and if that is the right decision. As a parent, it is a different ball game than if you are caring for a spouse…the responsibility is huge. My seven year old son had a spot on his heel that just appeared. It was black, round and just there. I was nervous. I thought I would wait and watch….but then the brain starts taking you places and I could not wait. I called and got him in immediately. The derm docs know my daughter's case and they are very good about getting us in and checking the kids. Trust your instincts. If you feel stongly about getting it removed, then do it. Put your mind at ease…sleep a little better. .I don't ever want to look back and wonder…just .trust yourself.
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Tagged: cutaneous melanoma, pediatric melanoma
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