› Forums › General Melanoma Community › Early warning signs of internal melanoma
- This topic has 39 replies, 4 voices, and was last updated 11 years, 8 months ago by
POW.
- Post
-
- December 31, 2013 at 1:20 am
Hi all,
I haven't posted since shortly after my sister passed away less than one month after being diagnosed with stage 4 melanoma last July. Being that she had no skin abnormalities, I am wondering if we all missed any other warning signs. If you get a melanoma lesion on your lung, would it cause breathing difficulty? She had a small 'mass' on her lung that they called a cyst, which was detected about 1-1/2 months before her diagnosis. She had had breathing problems which were assumed to be allergy related back in 2011, which never really got under control completely. (They removed polyps from her sinuses but kept putting her on steroids.) She was tired a lot and became a caffeine drinker.
Her melanoma was discovered when a large tumor was removed from her lymph node. An MRI of her brain shortly thereafter revealed 11 lesions. I guess what I am trying to figure out, is that are there any warning signs that I can look for to try to catch this very scary form of melanoma that shows up internally? I don't want to spend my 50's and 60's being paranoid that I will be dealt the same fate as my sister. I am getting my skin checked every 6 months, but in my case that may not be enough.
Thanks!
- Replies
-
-
- December 31, 2013 at 3:12 am
Current medical thinking is that when 3 or more generations in one family develop melanoma, there may (MAY) be a genetic component. But other than that, there is no known genetic basis for melanoma. Your chances of developing melanoma are just as low as anybody else's in the world.
Your concern is certainly understandable. Your poor sister really got hit with a bolt from the blue. Her case was very, very rare– no primary lesion was ever detected, her melanoma was unusually aggressive, and she was one of those people (like my brother) who had no specific symptoms from melanoma until it had spread throughout her body. By the time anybody knew there was a problem, it was too late to help her. All of these factors are highly unusual and the chances of the same thing happening to you are about zero.
The best thing you can do is take the same reasonable precautions we all should take. Learn what melanoma lesions look like (the "ABCD" mnemonic). Always use sunscreen and wear a broad-brimmed hat when out in the sun. Familiarize yourself with your moles and freckles and be alert to any that change. And go to a dermatologist experienced with melanoma once a year to get your skin and lymph nodes checked.
Don't allow yourself to become paranoid about every ache and pain you experience for the rest of your life. What happened to your sister is NOT going to happen to you. That was a freak occurrence.
-
- December 31, 2013 at 3:12 am
Current medical thinking is that when 3 or more generations in one family develop melanoma, there may (MAY) be a genetic component. But other than that, there is no known genetic basis for melanoma. Your chances of developing melanoma are just as low as anybody else's in the world.
Your concern is certainly understandable. Your poor sister really got hit with a bolt from the blue. Her case was very, very rare– no primary lesion was ever detected, her melanoma was unusually aggressive, and she was one of those people (like my brother) who had no specific symptoms from melanoma until it had spread throughout her body. By the time anybody knew there was a problem, it was too late to help her. All of these factors are highly unusual and the chances of the same thing happening to you are about zero.
The best thing you can do is take the same reasonable precautions we all should take. Learn what melanoma lesions look like (the "ABCD" mnemonic). Always use sunscreen and wear a broad-brimmed hat when out in the sun. Familiarize yourself with your moles and freckles and be alert to any that change. And go to a dermatologist experienced with melanoma once a year to get your skin and lymph nodes checked.
Don't allow yourself to become paranoid about every ache and pain you experience for the rest of your life. What happened to your sister is NOT going to happen to you. That was a freak occurrence.
-
- December 31, 2013 at 3:12 am
Current medical thinking is that when 3 or more generations in one family develop melanoma, there may (MAY) be a genetic component. But other than that, there is no known genetic basis for melanoma. Your chances of developing melanoma are just as low as anybody else's in the world.
Your concern is certainly understandable. Your poor sister really got hit with a bolt from the blue. Her case was very, very rare– no primary lesion was ever detected, her melanoma was unusually aggressive, and she was one of those people (like my brother) who had no specific symptoms from melanoma until it had spread throughout her body. By the time anybody knew there was a problem, it was too late to help her. All of these factors are highly unusual and the chances of the same thing happening to you are about zero.
The best thing you can do is take the same reasonable precautions we all should take. Learn what melanoma lesions look like (the "ABCD" mnemonic). Always use sunscreen and wear a broad-brimmed hat when out in the sun. Familiarize yourself with your moles and freckles and be alert to any that change. And go to a dermatologist experienced with melanoma once a year to get your skin and lymph nodes checked.
Don't allow yourself to become paranoid about every ache and pain you experience for the rest of your life. What happened to your sister is NOT going to happen to you. That was a freak occurrence.
-
- December 31, 2013 at 3:40 am
Thank you for your thoughtful reply. I hope you're right about my odds of getting melanoma are as low as anyone else's in the world. My dermatologist tells me that having a sibling who had melanoma does put me at an increased risk, esp. with the basal cells they found on me in October.
I worry more because my Irish grandfather died at 43 of a "skin infection"…. 1935 in West Virginia — would they have even recognized melanoma? So I do wonder about the genetic component. (But at least his diagnosis would have indicated a skin lesion.) My grandfather had no other children besides my mom and he did not raise her so I know nothing else about the blood line. And being that my mom died at 69 of a heart attack, I have no idea if she would've developed any skin cancer. She never got checked but did have a lot of moles.
You're right, my sister's case was extreme and hopefully extremely rare. We expect she had the melanoma for quite a while but it did not cause any known effects until her ruptured spleen compromised her immune system so severely that the cancer spread like wild fire. But that's the curious thing — how people can have melanoma internally and not have any symptoms. It just seems like there should be SOMETHING to flag concern, like breathing issues, swelling, chronic fatigue, etc. Once I broke out in chronic hives for months & I was checked for lung cancer, as that apparently can be a symptom. So why not something for this deadly melanoma? 🙁
I do appreciate your input; I will try to put my worries aside.
-
- December 31, 2013 at 3:40 am
Thank you for your thoughtful reply. I hope you're right about my odds of getting melanoma are as low as anyone else's in the world. My dermatologist tells me that having a sibling who had melanoma does put me at an increased risk, esp. with the basal cells they found on me in October.
I worry more because my Irish grandfather died at 43 of a "skin infection"…. 1935 in West Virginia — would they have even recognized melanoma? So I do wonder about the genetic component. (But at least his diagnosis would have indicated a skin lesion.) My grandfather had no other children besides my mom and he did not raise her so I know nothing else about the blood line. And being that my mom died at 69 of a heart attack, I have no idea if she would've developed any skin cancer. She never got checked but did have a lot of moles.
You're right, my sister's case was extreme and hopefully extremely rare. We expect she had the melanoma for quite a while but it did not cause any known effects until her ruptured spleen compromised her immune system so severely that the cancer spread like wild fire. But that's the curious thing — how people can have melanoma internally and not have any symptoms. It just seems like there should be SOMETHING to flag concern, like breathing issues, swelling, chronic fatigue, etc. Once I broke out in chronic hives for months & I was checked for lung cancer, as that apparently can be a symptom. So why not something for this deadly melanoma? 🙁
I do appreciate your input; I will try to put my worries aside.
-
- December 31, 2013 at 3:40 am
Thank you for your thoughtful reply. I hope you're right about my odds of getting melanoma are as low as anyone else's in the world. My dermatologist tells me that having a sibling who had melanoma does put me at an increased risk, esp. with the basal cells they found on me in October.
I worry more because my Irish grandfather died at 43 of a "skin infection"…. 1935 in West Virginia — would they have even recognized melanoma? So I do wonder about the genetic component. (But at least his diagnosis would have indicated a skin lesion.) My grandfather had no other children besides my mom and he did not raise her so I know nothing else about the blood line. And being that my mom died at 69 of a heart attack, I have no idea if she would've developed any skin cancer. She never got checked but did have a lot of moles.
You're right, my sister's case was extreme and hopefully extremely rare. We expect she had the melanoma for quite a while but it did not cause any known effects until her ruptured spleen compromised her immune system so severely that the cancer spread like wild fire. But that's the curious thing — how people can have melanoma internally and not have any symptoms. It just seems like there should be SOMETHING to flag concern, like breathing issues, swelling, chronic fatigue, etc. Once I broke out in chronic hives for months & I was checked for lung cancer, as that apparently can be a symptom. So why not something for this deadly melanoma? 🙁
I do appreciate your input; I will try to put my worries aside.
-
- December 31, 2013 at 4:00 am
Just one more comment on the "genetic component" – it's unlikely you have it. First off, it doesn't skip generations. Second, if you have a genetic component, you are likely to get melanoma YOUNG. The highest likelihood to get melanoma is still later in life, but a genetic component most likely means you would get it young. (I was 29 when first diagnosed and I do have a genetic defect). You are at higher risk because you shared the same environmental factors as your sister growing up (burns/sun exposure). Also likely you share similar skin tones, and that can cause melanoma to run in families. But your risk, while higher than someone without a sibling with melanoma, is still relatively small. 90% of melanomas are thought to be sporadic and, unfortunately, that's most likely what happened with your sister. You mentioned your sister was on steroids. Was that long term? Steroids suppress the immune system and there is a tie between melanoma and the immune system. (People with organ replacements are high risk for melanoma because of their medically induced suppressed immune system). While that might have nothing to do with your sister, it did catch my attention.
Be sun smart, be vigilant, and remember that MOST people who get melanoma do have something on the skin first.
-
- December 31, 2013 at 4:00 am
Just one more comment on the "genetic component" – it's unlikely you have it. First off, it doesn't skip generations. Second, if you have a genetic component, you are likely to get melanoma YOUNG. The highest likelihood to get melanoma is still later in life, but a genetic component most likely means you would get it young. (I was 29 when first diagnosed and I do have a genetic defect). You are at higher risk because you shared the same environmental factors as your sister growing up (burns/sun exposure). Also likely you share similar skin tones, and that can cause melanoma to run in families. But your risk, while higher than someone without a sibling with melanoma, is still relatively small. 90% of melanomas are thought to be sporadic and, unfortunately, that's most likely what happened with your sister. You mentioned your sister was on steroids. Was that long term? Steroids suppress the immune system and there is a tie between melanoma and the immune system. (People with organ replacements are high risk for melanoma because of their medically induced suppressed immune system). While that might have nothing to do with your sister, it did catch my attention.
Be sun smart, be vigilant, and remember that MOST people who get melanoma do have something on the skin first.
-
- December 31, 2013 at 4:00 am
Just one more comment on the "genetic component" – it's unlikely you have it. First off, it doesn't skip generations. Second, if you have a genetic component, you are likely to get melanoma YOUNG. The highest likelihood to get melanoma is still later in life, but a genetic component most likely means you would get it young. (I was 29 when first diagnosed and I do have a genetic defect). You are at higher risk because you shared the same environmental factors as your sister growing up (burns/sun exposure). Also likely you share similar skin tones, and that can cause melanoma to run in families. But your risk, while higher than someone without a sibling with melanoma, is still relatively small. 90% of melanomas are thought to be sporadic and, unfortunately, that's most likely what happened with your sister. You mentioned your sister was on steroids. Was that long term? Steroids suppress the immune system and there is a tie between melanoma and the immune system. (People with organ replacements are high risk for melanoma because of their medically induced suppressed immune system). While that might have nothing to do with your sister, it did catch my attention.
Be sun smart, be vigilant, and remember that MOST people who get melanoma do have something on the skin first.
-
- January 2, 2014 at 10:43 pm
Sorry for the late reply, I came down with some stomach/congestion virus (I assume) on NYE.
My sister was on a steroid nasal spray, and took steroids for a lung infection in 2011. I am not certain how often she was given steroids for her swollen foot or spine issues. They put her on a variety of meds in '11 trying to solve her mysterious nasal and chest congestion and generalized itching. So I wonder if her immune system was showing signs of fighting the cancer back then.
I thought it was odd that the basal cells that showed up on my arm were not in a spot that actually got very much sun, so this made me more concerned — but I am feeling a bit relieved after reading your and the others' posts. Thanks for helping to put my risk in perspective.
-
- January 2, 2014 at 10:43 pm
Sorry for the late reply, I came down with some stomach/congestion virus (I assume) on NYE.
My sister was on a steroid nasal spray, and took steroids for a lung infection in 2011. I am not certain how often she was given steroids for her swollen foot or spine issues. They put her on a variety of meds in '11 trying to solve her mysterious nasal and chest congestion and generalized itching. So I wonder if her immune system was showing signs of fighting the cancer back then.
I thought it was odd that the basal cells that showed up on my arm were not in a spot that actually got very much sun, so this made me more concerned — but I am feeling a bit relieved after reading your and the others' posts. Thanks for helping to put my risk in perspective.
-
- January 2, 2014 at 10:43 pm
Sorry for the late reply, I came down with some stomach/congestion virus (I assume) on NYE.
My sister was on a steroid nasal spray, and took steroids for a lung infection in 2011. I am not certain how often she was given steroids for her swollen foot or spine issues. They put her on a variety of meds in '11 trying to solve her mysterious nasal and chest congestion and generalized itching. So I wonder if her immune system was showing signs of fighting the cancer back then.
I thought it was odd that the basal cells that showed up on my arm were not in a spot that actually got very much sun, so this made me more concerned — but I am feeling a bit relieved after reading your and the others' posts. Thanks for helping to put my risk in perspective.
-
- December 31, 2013 at 4:03 am
An inheritable disease means that there is a DNA mutation in the sperm or the egg that fused to form you– such mutations are present in every cell of your body. Genetic mutations are the cause of sickle cell anemia and hemophilia, and contribute to a host of metabolic diseases like diabetes and heart disease.
Melanoma arises from a DNA mutation in a skin cell that then starts to divide uncontrollably. A mutation like the BRAF V600E mutation occurs in the melanoma cells but not in the other cells of your body. That is why they have to have a sample of the tumor itself to determine your BRAF status– they won't find the BRAF mutation in your blood cells or cheek cells or anywhere else.
I have seen no published reports that having a sibling with melnaoma means that you are at increased genetic risk of developing the disease. That doesn't even make sense to me. Unless I see the data, i don't buy it.
-
- December 31, 2013 at 4:03 am
An inheritable disease means that there is a DNA mutation in the sperm or the egg that fused to form you– such mutations are present in every cell of your body. Genetic mutations are the cause of sickle cell anemia and hemophilia, and contribute to a host of metabolic diseases like diabetes and heart disease.
Melanoma arises from a DNA mutation in a skin cell that then starts to divide uncontrollably. A mutation like the BRAF V600E mutation occurs in the melanoma cells but not in the other cells of your body. That is why they have to have a sample of the tumor itself to determine your BRAF status– they won't find the BRAF mutation in your blood cells or cheek cells or anywhere else.
I have seen no published reports that having a sibling with melnaoma means that you are at increased genetic risk of developing the disease. That doesn't even make sense to me. Unless I see the data, i don't buy it.
-
- December 31, 2013 at 4:03 am
An inheritable disease means that there is a DNA mutation in the sperm or the egg that fused to form you– such mutations are present in every cell of your body. Genetic mutations are the cause of sickle cell anemia and hemophilia, and contribute to a host of metabolic diseases like diabetes and heart disease.
Melanoma arises from a DNA mutation in a skin cell that then starts to divide uncontrollably. A mutation like the BRAF V600E mutation occurs in the melanoma cells but not in the other cells of your body. That is why they have to have a sample of the tumor itself to determine your BRAF status– they won't find the BRAF mutation in your blood cells or cheek cells or anywhere else.
I have seen no published reports that having a sibling with melnaoma means that you are at increased genetic risk of developing the disease. That doesn't even make sense to me. Unless I see the data, i don't buy it.
-
- December 31, 2013 at 4:57 am
These stats are from the High Risk Familial Melanoma studies conducted at my cancer institution. I probably got these stats almost 10 years ago so there may be some variation with more data points collected in the last 10 years. They do a lot of genetic research (Utah is a hotbed of genetic research!) and this clinical study is where I learned about my CDKN2A (p16) genetic defect. I am copying my notes about risks for melanoma below. You may not be at increased GENETIC risk of melanoma as it related to a specific genetic defect if you have a sibling with melanoma, but you may be at increased risk based on more "generic" genetic factors.
.
Risk Factors for MelanomaThese are compared to the normal caucasian population. These are RELATIVE risks and are not CUMMULATIVE risks. There is no way to quantify having several relative risks into a cummulative risk value.
*If several people in your family have melanoma: 35-70 times greater risk to develop melanoma
*If you've had a previous Primary melanoma:8.5 times greater risk to develop melanoma
*If you have a family history of just 1 person in your family: 2-3 times as likely to develop melanoma
*If you have Type I skin (always burns, never tans), freckles, blue eyes, red hair: 7.4-10 times more likely to get melanoma
*If you've had one blistering sunburn: You are at 2 to 3 times greater risk than the average caucasian
without blistering sunburn history.
*Many/Unusual Moles: 2 to 12 times greater chance of getting melanoma
*90% of melanomas are sporadic.Other reasons why MM may cluster in families:
*Shared environment
*Shared sun exposure
*Normal features that are inheritedClues for an Inherited Risk of MM:
*Several family members with melanoma
*Melanoma in many generations
*Melanoma occuring at a younger than usual age
*One person with one or more melanoma primaries
*Many/Unusual looking moles
*The presence of certain other related types of cancer within the family
NOT ALL families have all of these clues, but even having 1 or more of these clues in a family makes it more likely that there is an inherited risk for melanoma.P16 Gene Mutation:
People born with the P16 mutation are thought to have an increased risk of melanoma – about a 75% lifetime risk of developing melanoma. Small increased risk of other related cancers.'As long as I'm copying and pasting, I'll add my notes from a 2007 melanoma symposium I attended.
———————————————————-
Statistics for Utah
1960 – Lifetime risk for melanoma was 1/600
2007 – Lifetime risk for melanoma is 1/67. Specifically 1/49 male, 1/73 women
There is a 7% increase in UVB radiation for each 1000 feet of elevation. Utah is at higher elevation (~4500 ft above sea level) with a lot of sunny days. This puts Utah in the HIGH risk category for melanoma.
Melanoma is the leading cancer in men age 40-44.
Melanoma is the second most common cancer in women 20-29, and men 20-39.
If one blood relative has had melanoma, your risk is increase 2-3 times higher than someone without a blood relative with MM. If 3 or more blood relatives have melanoma, your risk is 30-70 times higher.
45% of all melanomas removed are in situ.
———————————————————
Lentigo Maligna
Only called Lentigo Maligna Melanoma when it becomes invasive. Just called Lentigo Maligna when it is in situ.
1. Lentigo Maligna has a high (50%) recurrence rate.
2. The location is most often found on the face.
3. Staged excisions to get margins often take several days.
4. Only 5% removed with clean margins the first time.
My doc is doing a study where they apply Imiquimod (Aldera) prior to removing the Lentigo Maligna to try and reduce the size of the lesion. Since most lesions are on the face, and most lesions also have large areas unseen from the surface, the excisions can be quite disfiguring.
Current results at 2 years followup: 2/3 of the patients treated with imiquimod prior to excision have had no recurrence. The average defect is also 2/3 smaller.
———————————————————-
Notes from the Mole Mapping doctor
50% of melanoma arise from existing moles.
In the mole mapping clinic, the doctor's 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 is done on high risk patients who either have dysplastic nevus syndrome, or multiple primaries.
Notes: A changing mole is ok as long as it is changing SYMMETRICALLY. Moles can be irritated or just grow. But if a mole changes ASYMMETICALLY, then it should be biopsied. New moles are also ok unless they are different from all the other moles.
6% of melanoma diagnosed is from an unknown primary.
———————————————————Notes from the Genetic Counselor on Hereditary Melanoma
Hereditary risk factors for melanoma
* Environment – sunburns and/or other environmental factors
* Moderate Risk Genes (controlling appearance – red hair, fair skin)
* High Risk Genes (p16 or other genes that are a defect for melanoma)
You can't change/control the moderate risk genes or the high risk genes. The only thing you can control (to some extent) is the environment.
Genetic defects only account for 5-10% of the melanomas.
Clues to a hereditary factor include: 3 or more melanomas in a family, multiple melanomas in one individual or a family history of melanoma and pancreatic cancer. -
- December 31, 2013 at 4:57 am
These stats are from the High Risk Familial Melanoma studies conducted at my cancer institution. I probably got these stats almost 10 years ago so there may be some variation with more data points collected in the last 10 years. They do a lot of genetic research (Utah is a hotbed of genetic research!) and this clinical study is where I learned about my CDKN2A (p16) genetic defect. I am copying my notes about risks for melanoma below. You may not be at increased GENETIC risk of melanoma as it related to a specific genetic defect if you have a sibling with melanoma, but you may be at increased risk based on more "generic" genetic factors.
.
Risk Factors for MelanomaThese are compared to the normal caucasian population. These are RELATIVE risks and are not CUMMULATIVE risks. There is no way to quantify having several relative risks into a cummulative risk value.
*If several people in your family have melanoma: 35-70 times greater risk to develop melanoma
*If you've had a previous Primary melanoma:8.5 times greater risk to develop melanoma
*If you have a family history of just 1 person in your family: 2-3 times as likely to develop melanoma
*If you have Type I skin (always burns, never tans), freckles, blue eyes, red hair: 7.4-10 times more likely to get melanoma
*If you've had one blistering sunburn: You are at 2 to 3 times greater risk than the average caucasian
without blistering sunburn history.
*Many/Unusual Moles: 2 to 12 times greater chance of getting melanoma
*90% of melanomas are sporadic.Other reasons why MM may cluster in families:
*Shared environment
*Shared sun exposure
*Normal features that are inheritedClues for an Inherited Risk of MM:
*Several family members with melanoma
*Melanoma in many generations
*Melanoma occuring at a younger than usual age
*One person with one or more melanoma primaries
*Many/Unusual looking moles
*The presence of certain other related types of cancer within the family
NOT ALL families have all of these clues, but even having 1 or more of these clues in a family makes it more likely that there is an inherited risk for melanoma.P16 Gene Mutation:
People born with the P16 mutation are thought to have an increased risk of melanoma – about a 75% lifetime risk of developing melanoma. Small increased risk of other related cancers.'As long as I'm copying and pasting, I'll add my notes from a 2007 melanoma symposium I attended.
———————————————————-
Statistics for Utah
1960 – Lifetime risk for melanoma was 1/600
2007 – Lifetime risk for melanoma is 1/67. Specifically 1/49 male, 1/73 women
There is a 7% increase in UVB radiation for each 1000 feet of elevation. Utah is at higher elevation (~4500 ft above sea level) with a lot of sunny days. This puts Utah in the HIGH risk category for melanoma.
Melanoma is the leading cancer in men age 40-44.
Melanoma is the second most common cancer in women 20-29, and men 20-39.
If one blood relative has had melanoma, your risk is increase 2-3 times higher than someone without a blood relative with MM. If 3 or more blood relatives have melanoma, your risk is 30-70 times higher.
45% of all melanomas removed are in situ.
———————————————————
Lentigo Maligna
Only called Lentigo Maligna Melanoma when it becomes invasive. Just called Lentigo Maligna when it is in situ.
1. Lentigo Maligna has a high (50%) recurrence rate.
2. The location is most often found on the face.
3. Staged excisions to get margins often take several days.
4. Only 5% removed with clean margins the first time.
My doc is doing a study where they apply Imiquimod (Aldera) prior to removing the Lentigo Maligna to try and reduce the size of the lesion. Since most lesions are on the face, and most lesions also have large areas unseen from the surface, the excisions can be quite disfiguring.
Current results at 2 years followup: 2/3 of the patients treated with imiquimod prior to excision have had no recurrence. The average defect is also 2/3 smaller.
———————————————————-
Notes from the Mole Mapping doctor
50% of melanoma arise from existing moles.
In the mole mapping clinic, the doctor's 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 is done on high risk patients who either have dysplastic nevus syndrome, or multiple primaries.
Notes: A changing mole is ok as long as it is changing SYMMETRICALLY. Moles can be irritated or just grow. But if a mole changes ASYMMETICALLY, then it should be biopsied. New moles are also ok unless they are different from all the other moles.
6% of melanoma diagnosed is from an unknown primary.
———————————————————Notes from the Genetic Counselor on Hereditary Melanoma
Hereditary risk factors for melanoma
* Environment – sunburns and/or other environmental factors
* Moderate Risk Genes (controlling appearance – red hair, fair skin)
* High Risk Genes (p16 or other genes that are a defect for melanoma)
You can't change/control the moderate risk genes or the high risk genes. The only thing you can control (to some extent) is the environment.
Genetic defects only account for 5-10% of the melanomas.
Clues to a hereditary factor include: 3 or more melanomas in a family, multiple melanomas in one individual or a family history of melanoma and pancreatic cancer. -
- December 31, 2013 at 4:57 am
These stats are from the High Risk Familial Melanoma studies conducted at my cancer institution. I probably got these stats almost 10 years ago so there may be some variation with more data points collected in the last 10 years. They do a lot of genetic research (Utah is a hotbed of genetic research!) and this clinical study is where I learned about my CDKN2A (p16) genetic defect. I am copying my notes about risks for melanoma below. You may not be at increased GENETIC risk of melanoma as it related to a specific genetic defect if you have a sibling with melanoma, but you may be at increased risk based on more "generic" genetic factors.
.
Risk Factors for MelanomaThese are compared to the normal caucasian population. These are RELATIVE risks and are not CUMMULATIVE risks. There is no way to quantify having several relative risks into a cummulative risk value.
*If several people in your family have melanoma: 35-70 times greater risk to develop melanoma
*If you've had a previous Primary melanoma:8.5 times greater risk to develop melanoma
*If you have a family history of just 1 person in your family: 2-3 times as likely to develop melanoma
*If you have Type I skin (always burns, never tans), freckles, blue eyes, red hair: 7.4-10 times more likely to get melanoma
*If you've had one blistering sunburn: You are at 2 to 3 times greater risk than the average caucasian
without blistering sunburn history.
*Many/Unusual Moles: 2 to 12 times greater chance of getting melanoma
*90% of melanomas are sporadic.Other reasons why MM may cluster in families:
*Shared environment
*Shared sun exposure
*Normal features that are inheritedClues for an Inherited Risk of MM:
*Several family members with melanoma
*Melanoma in many generations
*Melanoma occuring at a younger than usual age
*One person with one or more melanoma primaries
*Many/Unusual looking moles
*The presence of certain other related types of cancer within the family
NOT ALL families have all of these clues, but even having 1 or more of these clues in a family makes it more likely that there is an inherited risk for melanoma.P16 Gene Mutation:
People born with the P16 mutation are thought to have an increased risk of melanoma – about a 75% lifetime risk of developing melanoma. Small increased risk of other related cancers.'As long as I'm copying and pasting, I'll add my notes from a 2007 melanoma symposium I attended.
———————————————————-
Statistics for Utah
1960 – Lifetime risk for melanoma was 1/600
2007 – Lifetime risk for melanoma is 1/67. Specifically 1/49 male, 1/73 women
There is a 7% increase in UVB radiation for each 1000 feet of elevation. Utah is at higher elevation (~4500 ft above sea level) with a lot of sunny days. This puts Utah in the HIGH risk category for melanoma.
Melanoma is the leading cancer in men age 40-44.
Melanoma is the second most common cancer in women 20-29, and men 20-39.
If one blood relative has had melanoma, your risk is increase 2-3 times higher than someone without a blood relative with MM. If 3 or more blood relatives have melanoma, your risk is 30-70 times higher.
45% of all melanomas removed are in situ.
———————————————————
Lentigo Maligna
Only called Lentigo Maligna Melanoma when it becomes invasive. Just called Lentigo Maligna when it is in situ.
1. Lentigo Maligna has a high (50%) recurrence rate.
2. The location is most often found on the face.
3. Staged excisions to get margins often take several days.
4. Only 5% removed with clean margins the first time.
My doc is doing a study where they apply Imiquimod (Aldera) prior to removing the Lentigo Maligna to try and reduce the size of the lesion. Since most lesions are on the face, and most lesions also have large areas unseen from the surface, the excisions can be quite disfiguring.
Current results at 2 years followup: 2/3 of the patients treated with imiquimod prior to excision have had no recurrence. The average defect is also 2/3 smaller.
———————————————————-
Notes from the Mole Mapping doctor
50% of melanoma arise from existing moles.
In the mole mapping clinic, the doctor's 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 is done on high risk patients who either have dysplastic nevus syndrome, or multiple primaries.
Notes: A changing mole is ok as long as it is changing SYMMETRICALLY. Moles can be irritated or just grow. But if a mole changes ASYMMETICALLY, then it should be biopsied. New moles are also ok unless they are different from all the other moles.
6% of melanoma diagnosed is from an unknown primary.
———————————————————Notes from the Genetic Counselor on Hereditary Melanoma
Hereditary risk factors for melanoma
* Environment – sunburns and/or other environmental factors
* Moderate Risk Genes (controlling appearance – red hair, fair skin)
* High Risk Genes (p16 or other genes that are a defect for melanoma)
You can't change/control the moderate risk genes or the high risk genes. The only thing you can control (to some extent) is the environment.
Genetic defects only account for 5-10% of the melanomas.
Clues to a hereditary factor include: 3 or more melanomas in a family, multiple melanomas in one individual or a family history of melanoma and pancreatic cancer. -
- January 1, 2014 at 11:51 am
My mum had a stage ii removed in April, 2012 given the clear and was diagnosed with stage iv in September, 2013. She had no warning signs either until it was too late. I believe a stressful period in her life caused the explosion through her body. She has it everywhere with 1000s of tiny lesions most the same size around 8mm.
-
- January 1, 2014 at 11:51 am
My mum had a stage ii removed in April, 2012 given the clear and was diagnosed with stage iv in September, 2013. She had no warning signs either until it was too late. I believe a stressful period in her life caused the explosion through her body. She has it everywhere with 1000s of tiny lesions most the same size around 8mm.
-
- January 2, 2014 at 11:15 pm
Sorry to hear about your mum, Helen. I didn't even know a person could get 1000s of lesions! It is horrible when you think the cancer has been cleared up and then it sneaks back up without warning, it's devastating. Are they able to offer your mum a treatment option that looks hopeful?
-
- January 2, 2014 at 11:15 pm
Sorry to hear about your mum, Helen. I didn't even know a person could get 1000s of lesions! It is horrible when you think the cancer has been cleared up and then it sneaks back up without warning, it's devastating. Are they able to offer your mum a treatment option that looks hopeful?
-
- January 2, 2014 at 11:15 pm
Sorry to hear about your mum, Helen. I didn't even know a person could get 1000s of lesions! It is horrible when you think the cancer has been cleared up and then it sneaks back up without warning, it's devastating. Are they able to offer your mum a treatment option that looks hopeful?
-
- January 1, 2014 at 11:51 am
My mum had a stage ii removed in April, 2012 given the clear and was diagnosed with stage iv in September, 2013. She had no warning signs either until it was too late. I believe a stressful period in her life caused the explosion through her body. She has it everywhere with 1000s of tiny lesions most the same size around 8mm.
-
- January 2, 2014 at 11:08 pm
Thank you for all that info! It is interesting that they always metion blue-eyed people. My sister was a red head with green eyes. I assume green eyes also have a higher risk.
Part of my paranoia stems from the fact that I know nothing else about the family health history on my mother's side. But I understand the current belief is that if my mother had any melanoma, it would have made itself known in her younger years, way before her death at 69.
The other part of my paranoia is simply from being surrounded by family members, including myself, who have shown up in that less than 1% of patients that have horrible outcomes from surgeries, including near-death, from fairly routine procedures. We also seem to suffer from conditions that are unusual, that seem to pop up out of nowhere. Over time, this makes it harder to maintain with any confidence that "it won't happen to me."
Again, I just want to be vigilant if I were to get any early signs that are not skin symptoms, if there are any possible warning signs. I have been plagued by chest congestion since spring, for example, so I start to wonder if this recurring problem might be indicative of a tumor on my lung. I never used to have any stomach problems, and I have been been having several episodes of nausea since the fall. I did have a chest xray last September that only revealed asthma, but I wonder if you need a CT scan to see a tumor. I seem to never feel energetic anymore. I am hoping my immune system is just down from grief. I don't want to be stupid and waste time worrying about nothing, but I also don't want to be stupid and miss signs. We've learned we can't always trust the doctors to get it right.
I realize I probably sound like a basket case. Thanks for the ear!
-
- January 2, 2014 at 11:08 pm
Thank you for all that info! It is interesting that they always metion blue-eyed people. My sister was a red head with green eyes. I assume green eyes also have a higher risk.
Part of my paranoia stems from the fact that I know nothing else about the family health history on my mother's side. But I understand the current belief is that if my mother had any melanoma, it would have made itself known in her younger years, way before her death at 69.
The other part of my paranoia is simply from being surrounded by family members, including myself, who have shown up in that less than 1% of patients that have horrible outcomes from surgeries, including near-death, from fairly routine procedures. We also seem to suffer from conditions that are unusual, that seem to pop up out of nowhere. Over time, this makes it harder to maintain with any confidence that "it won't happen to me."
Again, I just want to be vigilant if I were to get any early signs that are not skin symptoms, if there are any possible warning signs. I have been plagued by chest congestion since spring, for example, so I start to wonder if this recurring problem might be indicative of a tumor on my lung. I never used to have any stomach problems, and I have been been having several episodes of nausea since the fall. I did have a chest xray last September that only revealed asthma, but I wonder if you need a CT scan to see a tumor. I seem to never feel energetic anymore. I am hoping my immune system is just down from grief. I don't want to be stupid and waste time worrying about nothing, but I also don't want to be stupid and miss signs. We've learned we can't always trust the doctors to get it right.
I realize I probably sound like a basket case. Thanks for the ear!
-
- January 2, 2014 at 11:08 pm
Thank you for all that info! It is interesting that they always metion blue-eyed people. My sister was a red head with green eyes. I assume green eyes also have a higher risk.
Part of my paranoia stems from the fact that I know nothing else about the family health history on my mother's side. But I understand the current belief is that if my mother had any melanoma, it would have made itself known in her younger years, way before her death at 69.
The other part of my paranoia is simply from being surrounded by family members, including myself, who have shown up in that less than 1% of patients that have horrible outcomes from surgeries, including near-death, from fairly routine procedures. We also seem to suffer from conditions that are unusual, that seem to pop up out of nowhere. Over time, this makes it harder to maintain with any confidence that "it won't happen to me."
Again, I just want to be vigilant if I were to get any early signs that are not skin symptoms, if there are any possible warning signs. I have been plagued by chest congestion since spring, for example, so I start to wonder if this recurring problem might be indicative of a tumor on my lung. I never used to have any stomach problems, and I have been been having several episodes of nausea since the fall. I did have a chest xray last September that only revealed asthma, but I wonder if you need a CT scan to see a tumor. I seem to never feel energetic anymore. I am hoping my immune system is just down from grief. I don't want to be stupid and waste time worrying about nothing, but I also don't want to be stupid and miss signs. We've learned we can't always trust the doctors to get it right.
I realize I probably sound like a basket case. Thanks for the ear!
-
- January 2, 2014 at 11:10 pm
^^This reply was to Janner!
-
- January 2, 2014 at 11:10 pm
^^This reply was to Janner!
-
- January 2, 2014 at 11:10 pm
^^This reply was to Janner!
-
- January 3, 2014 at 4:09 pm
I understand where you are coming from. I, too, seem to be in the "exception" category. I had a coworker describe it as "read the fine print on all that could go wrong and you'll see your name listed there". He said it didn't matter what was being described, but if there was a side effect or bad result listed, my name would be listed next to it. <sigh> Not always the case, but I've been the exception enough that it has even stood out to others.
So while I really do get being the "exception", it is again unlikely that you'd have the same type of exception as your sister. I trust you will have your own exceptions 🙂 that will be unique to you!
-
- January 10, 2014 at 6:49 am
My mum has undergone chemo – she isn't BRaf Postive and she has rheumatoid athrities so cannot undergo any immunotherapy.
She isn't having anymore treatment as the chemo lowered her bloodworks so low the tumours in her brain bled and she had an infection that nearly killed her. It is all just a waiting game now. They haven't done anymore CT Scans since the brain scans when she was in hospital.
It is hard just watching her wither away.
-
- January 10, 2014 at 6:49 am
My mum has undergone chemo – she isn't BRaf Postive and she has rheumatoid athrities so cannot undergo any immunotherapy.
She isn't having anymore treatment as the chemo lowered her bloodworks so low the tumours in her brain bled and she had an infection that nearly killed her. It is all just a waiting game now. They haven't done anymore CT Scans since the brain scans when she was in hospital.
It is hard just watching her wither away.
-
- January 10, 2014 at 6:49 am
My mum has undergone chemo – she isn't BRaf Postive and she has rheumatoid athrities so cannot undergo any immunotherapy.
She isn't having anymore treatment as the chemo lowered her bloodworks so low the tumours in her brain bled and she had an infection that nearly killed her. It is all just a waiting game now. They haven't done anymore CT Scans since the brain scans when she was in hospital.
It is hard just watching her wither away.
-
- January 10, 2014 at 1:15 pm
Oh, Helen, I am so sorry that your mother and her family have reached this point. I know that you have done everything you possibly could to help your mother fight this melanoma. You have been a wonderfully good and loving daughter. I hope that you can use this time to just be with your mother and talk about happier times and maybe share a laugh or two. I wish both of you peace and comfort in the days to come.
-
- January 10, 2014 at 1:15 pm
Oh, Helen, I am so sorry that your mother and her family have reached this point. I know that you have done everything you possibly could to help your mother fight this melanoma. You have been a wonderfully good and loving daughter. I hope that you can use this time to just be with your mother and talk about happier times and maybe share a laugh or two. I wish both of you peace and comfort in the days to come.
-
- January 10, 2014 at 1:15 pm
Oh, Helen, I am so sorry that your mother and her family have reached this point. I know that you have done everything you possibly could to help your mother fight this melanoma. You have been a wonderfully good and loving daughter. I hope that you can use this time to just be with your mother and talk about happier times and maybe share a laugh or two. I wish both of you peace and comfort in the days to come.
-
- January 3, 2014 at 4:09 pm
I understand where you are coming from. I, too, seem to be in the "exception" category. I had a coworker describe it as "read the fine print on all that could go wrong and you'll see your name listed there". He said it didn't matter what was being described, but if there was a side effect or bad result listed, my name would be listed next to it. <sigh> Not always the case, but I've been the exception enough that it has even stood out to others.
So while I really do get being the "exception", it is again unlikely that you'd have the same type of exception as your sister. I trust you will have your own exceptions 🙂 that will be unique to you!
-
- January 3, 2014 at 4:09 pm
I understand where you are coming from. I, too, seem to be in the "exception" category. I had a coworker describe it as "read the fine print on all that could go wrong and you'll see your name listed there". He said it didn't matter what was being described, but if there was a side effect or bad result listed, my name would be listed next to it. <sigh> Not always the case, but I've been the exception enough that it has even stood out to others.
So while I really do get being the "exception", it is again unlikely that you'd have the same type of exception as your sister. I trust you will have your own exceptions 🙂 that will be unique to you!
-
- You must be logged in to reply to this topic.