› Forums › General Melanoma Community › “Supposed to have been ok”
- This topic has 48 replies, 9 voices, and was last updated 11 years, 9 months ago by
shellebrownies.
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- July 18, 2012 at 1:01 pm
I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc…
I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc… only to have metastasis some years later and bad outcomes. I guess I just don't get the info that is very common to see that says if caught early, melanoma is highly curable, highly treatable, 97% survival, etc…. How can that be the case when example after example on just this forum of early Stage IA'ers who developed metastatic disease? Should someone with a 0.2 or 0.3 mm lesion that was treated be demanding further treatment of some sort, knowing the possibilities?
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- July 18, 2012 at 1:54 pm
You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes. Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it. They are busy dealing with the important issues in their present lives. So you are not going to see them seeking this board and posting about their 0.2 or 0.3 mm lesions that not recurring.
If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision? Or would you put it in a proper perspective?
Best wishes,
Harry
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- July 18, 2012 at 1:54 pm
You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes. Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it. They are busy dealing with the important issues in their present lives. So you are not going to see them seeking this board and posting about their 0.2 or 0.3 mm lesions that not recurring.
If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision? Or would you put it in a proper perspective?
Best wishes,
Harry
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- July 18, 2012 at 1:54 pm
You should realize that this bulletin board is heavily tilted to those who had unfortunate outcomes. Very few people who had thin melanomas excised 10 or 20 years ago spend much, if any, time even thinking about it. They are busy dealing with the important issues in their present lives. So you are not going to see them seeking this board and posting about their 0.2 or 0.3 mm lesions that not recurring.
If you went to the Highway Patrol and read their their fatal accident ledgers, would you think that your driving a car involves a high probabilty of a deadly collision? Or would you put it in a proper perspective?
Best wishes,
Harry
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- July 18, 2012 at 5:32 pm
I developed mets 27 years later ;( Mine was .85 if I remember correctly. Each is is differnt so you can't base it on someone else. I look at there are many improvements since 1979 since I had my primary. Don't waste your life worrying what happend yet.
Linda
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- July 18, 2012 at 5:32 pm
I developed mets 27 years later ;( Mine was .85 if I remember correctly. Each is is differnt so you can't base it on someone else. I look at there are many improvements since 1979 since I had my primary. Don't waste your life worrying what happend yet.
Linda
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- July 18, 2012 at 5:32 pm
I developed mets 27 years later ;( Mine was .85 if I remember correctly. Each is is differnt so you can't base it on someone else. I look at there are many improvements since 1979 since I had my primary. Don't waste your life worrying what happend yet.
Linda
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- July 18, 2012 at 5:50 pm
Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.Janner
Stage IA for 18 treats before the 2010 staffing changed me to IB. -
- July 18, 2012 at 5:50 pm
Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.Janner
Stage IA for 18 treats before the 2010 staffing changed me to IB. -
- July 18, 2012 at 5:50 pm
Stage IA today is different than stage IA of two years ago. You can’t compare your stats to someone else, there are just too many variables including misdiagnoses and patient misunderstanding. I’ve ruin across petiole who think they know their disease but when queried, the facts don’t add up. Stage IA does not have a100% survival rate do someone has to be in those small percentages. the ones who are are the ones most likely to past. the others have moved in with life.Janner
Stage IA for 18 treats before the 2010 staffing changed me to IB. -
- July 18, 2012 at 7:17 pm
As has been pointed out, people who have the more common good outcome with stage four just don't seek the board. So this is a "false sample", using quantitative reasoning language. Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.
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- July 18, 2012 at 7:17 pm
As has been pointed out, people who have the more common good outcome with stage four just don't seek the board. So this is a "false sample", using quantitative reasoning language. Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.
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- July 18, 2012 at 7:17 pm
As has been pointed out, people who have the more common good outcome with stage four just don't seek the board. So this is a "false sample", using quantitative reasoning language. Obviously some people have diagnoses of stage I who do go on to have the cancer spread, but I don't think you can use this board, or any like it, as a statistical indicator of how often this happens.
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- July 18, 2012 at 9:14 pm
The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system. What you want to do is build up you immune system and proactice safe sun.
Both Harry and Janner make good points. Take them to heart. Then take care of yourself and move forward.
Mary
Stage 3
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- July 18, 2012 at 9:14 pm
The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system. What you want to do is build up you immune system and proactice safe sun.
Both Harry and Janner make good points. Take them to heart. Then take care of yourself and move forward.
Mary
Stage 3
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- July 18, 2012 at 9:14 pm
The simple answer to your question is "No" there are no other treatment to demand and besides with any treatment you just run the risk of weakening you own immune system. What you want to do is build up you immune system and proactice safe sun.
Both Harry and Janner make good points. Take them to heart. Then take care of yourself and move forward.
Mary
Stage 3
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- July 18, 2012 at 10:28 pm
Hi! I had 0.2 mm half an year ago .
Just had my follow up yesterday.
Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.
I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.
How long did you have your follow ups with specialists , if thinner lesions ???
Thank you
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- July 18, 2012 at 10:28 pm
Hi! I had 0.2 mm half an year ago .
Just had my follow up yesterday.
Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.
I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.
How long did you have your follow ups with specialists , if thinner lesions ???
Thank you
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- July 18, 2012 at 11:11 pm
The highest risk for all lesions is the first two years. Where have you read 72 months?
Different countries have different protocols. At the very least, everyone should have yearly checkups. Some newly diagnosed have quarterly checks, some semi-annual. Most early stagers move to yearly visits after several years melanoma free. Personally, I watch myself and don't spend much time worrying if someone else watches my skin. I found my 3 primaries. I went 7 years after my first melanoma not seeing any skin doctor. Mine was for insurance reasons. I started back with a derm when I found my second primary 8 years after #1. I think self observation is more important than anything.
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- July 18, 2012 at 11:11 pm
The highest risk for all lesions is the first two years. Where have you read 72 months?
Different countries have different protocols. At the very least, everyone should have yearly checkups. Some newly diagnosed have quarterly checks, some semi-annual. Most early stagers move to yearly visits after several years melanoma free. Personally, I watch myself and don't spend much time worrying if someone else watches my skin. I found my 3 primaries. I went 7 years after my first melanoma not seeing any skin doctor. Mine was for insurance reasons. I started back with a derm when I found my second primary 8 years after #1. I think self observation is more important than anything.
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- July 18, 2012 at 11:11 pm
The highest risk for all lesions is the first two years. Where have you read 72 months?
Different countries have different protocols. At the very least, everyone should have yearly checkups. Some newly diagnosed have quarterly checks, some semi-annual. Most early stagers move to yearly visits after several years melanoma free. Personally, I watch myself and don't spend much time worrying if someone else watches my skin. I found my 3 primaries. I went 7 years after my first melanoma not seeing any skin doctor. Mine was for insurance reasons. I started back with a derm when I found my second primary 8 years after #1. I think self observation is more important than anything.
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- July 18, 2012 at 11:30 pm
"Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."
There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.
Self observation of skin is possible, but I'm talking about metastasis to internal organs.
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- July 18, 2012 at 11:30 pm
"Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."
There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.
Self observation of skin is possible, but I'm talking about metastasis to internal organs.
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- July 18, 2012 at 11:30 pm
"Overall, only about 2% of patients with a melanoma less than 0.76 mm thick will have a recurrence, but the peak incidence of recurrence is not until 72 months."
There was another article I read that stated 5-10 years is peak recurrence for thin melanomas less than 0.75mm.
Self observation of skin is possible, but I'm talking about metastasis to internal organs.
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- July 19, 2012 at 12:14 am
I read the article, but nowhere does it show the sample sizes. I want to know how many people were included in this study before I draw any conclusions. The following site shows a curve and recurrence rates along the lines that I have seen published many times: http://www.sign.ac.uk/guidelines/fulltext/72/section7.html. It's the first site I found but there are others much like it. It's a UK site so maybe Natasha can use it to get more followup visits.
As for internal mets, it's no different with melanoma or any other type of cancer. No way to really track them. Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms. The odds for an early stage melanoma warrior are very good. There's not really anything PROVEN you can do to change your odds of a recurrence. One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.
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- July 19, 2012 at 12:14 am
I read the article, but nowhere does it show the sample sizes. I want to know how many people were included in this study before I draw any conclusions. The following site shows a curve and recurrence rates along the lines that I have seen published many times: http://www.sign.ac.uk/guidelines/fulltext/72/section7.html. It's the first site I found but there are others much like it. It's a UK site so maybe Natasha can use it to get more followup visits.
As for internal mets, it's no different with melanoma or any other type of cancer. No way to really track them. Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms. The odds for an early stage melanoma warrior are very good. There's not really anything PROVEN you can do to change your odds of a recurrence. One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.
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- July 19, 2012 at 12:14 am
I read the article, but nowhere does it show the sample sizes. I want to know how many people were included in this study before I draw any conclusions. The following site shows a curve and recurrence rates along the lines that I have seen published many times: http://www.sign.ac.uk/guidelines/fulltext/72/section7.html. It's the first site I found but there are others much like it. It's a UK site so maybe Natasha can use it to get more followup visits.
As for internal mets, it's no different with melanoma or any other type of cancer. No way to really track them. Even scans haven't been shown to increase survival which is why many institutions will only do them if there are symptoms. The odds for an early stage melanoma warrior are very good. There's not really anything PROVEN you can do to change your odds of a recurrence. One of these days, maybe there will be better diagnostic tools (blood tests or the like), but science for melanoma isn't that advanced yet.
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- July 18, 2012 at 11:31 pm
In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!
Thanks ,Janner for making clear – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.
I am trying to move on with my life and even planning summer vacation 🙂 With a lot of sun creams and hats with me 🙂
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- July 18, 2012 at 11:31 pm
In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!
Thanks ,Janner for making clear – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.
I am trying to move on with my life and even planning summer vacation 🙂 With a lot of sun creams and hats with me 🙂
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- July 18, 2012 at 11:31 pm
In country I live ( United Kingdom) even different protocols in defferent areas and hospitals !!
Thanks ,Janner for making clear – 2 years after diagnosys are most dangerous. Basicly it what my Doc said yesterday.
I am trying to move on with my life and even planning summer vacation 🙂 With a lot of sun creams and hats with me 🙂
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- July 18, 2012 at 10:28 pm
Hi! I had 0.2 mm half an year ago .
Just had my follow up yesterday.
Thay said I need to go to hospital for follow ups just for 1 years after diagnosed and complete treatment.I wanted 3 years ,they said NO.
I am confused about all that ,I was under impression it should be 3 years follow ups. Doc said most possible reaccurance is during 1 year and it is 4% chanse for me. After one year chanse is even less.
How long did you have your follow ups with specialists , if thinner lesions ???
Thank you
-
- July 19, 2012 at 2:06 am
I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.
That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.
I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other.
We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.
I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.
Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.
Best of luck to you!
Michelle
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- July 19, 2012 at 2:06 am
I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.
That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.
I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other.
We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.
I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.
Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.
Best of luck to you!
Michelle
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- July 19, 2012 at 2:06 am
I wonder if my profile is one of the ones you speak of, as that is what happened to my husband.
That being said… please understand that Don's situation was highly unusual. Even his melanoma specialists were astounded by his case and at just how agressive it was. I have long since chalked it up to a one-in-a-million twist of fate.
I guess what I'm trying to get at here is that Harry and Janner have made an excellent point: the percentages will seem skewed in an environment like this. It does not reflect the melanoma community as a whole. People migrate here if they have diagnosis questions…and they stay when they have complications to act as support for each other.
We are very fortunate to have Janner as a great source of information for the early stage people out there, but the vast majority of people who have Stage IA/IB diagnoses and have been treated will not be found in this kind of forum; they will have moved on with their lives, not having had a reoccurence to keep them here.
I have never felt that my husband's case was in any way mishandled by his doctors or that something else should have been done that would've changed his outcome. He went bi-yearly to his dermatologist for checkups. But the disease never reappeared on the surface of his skin. He felt healthy, didn't have any noticable warning signs. By all appearances, there was nothing for anyone to treat.
Don't let the worst-case scenarios you can find on this site scare you into thinking that you are next. The odds are vastly in your favor that you won't.
Best of luck to you!
Michelle
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