Stage 3B – 9 years out – good X-Ray

I think if IA patients can have residual cancer cells, then they should be offered adjuvant therapy to try & get those cells

I think if IA patients can have residual cancer cells, then they should be offered adjuvant therapy to try & get those cells

I think if IA patients can have residual cancer cells, then they should be offered adjuvant therapy to try & get those cells

The metal detectors can be called vehicle inspection which have a good function of car inspection and even some potential danger signals. They can bring much safety and convenience to people's life. We have to admit that the advanced technology always gives us surprise and joy.

The metal detectors can be called vehicle inspection which have a good function of car inspection and even some potential danger signals. They can bring much safety and convenience to people's life. We have to admit that the advanced technology always gives us surprise and joy.

The metal detectors can be called vehicle inspection which have a good function of car inspection and even some potential danger signals. They can bring much safety and convenience to people's life. We have to admit that the advanced technology always gives us surprise and joy.

First of all, no one should ever tell you it will never recur – plainly it does. 

BUT – you need to know that this bulletin board is very lopsided in that those of us who do recur come here for support and the VAST majority of those will don't recur are off living their lives with no need of this board so of course it would look like their are more who progress than really do. 

If I found this place when I was 1A I would have gone crazy with worry (well crazier!).  With some time behind you things will be better and you won't be worrying at every little thing.  Take heart in those of us who did progress who are still going strong years later.  The way I look at it is if we can just delay delay delay, there's a better chance of a cure for all of us.

Good luck to you.  The VAST majority of stage 1A will NEVER recur – rememeber that!

DebbieH 

First of all, no one should ever tell you it will never recur – plainly it does. 

BUT – you need to know that this bulletin board is very lopsided in that those of us who do recur come here for support and the VAST majority of those will don't recur are off living their lives with no need of this board so of course it would look like their are more who progress than really do. 

If I found this place when I was 1A I would have gone crazy with worry (well crazier!).  With some time behind you things will be better and you won't be worrying at every little thing.  Take heart in those of us who did progress who are still going strong years later.  The way I look at it is if we can just delay delay delay, there's a better chance of a cure for all of us.

Good luck to you.  The VAST majority of stage 1A will NEVER recur – rememeber that!

DebbieH 

First of all, no one should ever tell you it will never recur – plainly it does. 

BUT – you need to know that this bulletin board is very lopsided in that those of us who do recur come here for support and the VAST majority of those will don't recur are off living their lives with no need of this board so of course it would look like their are more who progress than really do. 

If I found this place when I was 1A I would have gone crazy with worry (well crazier!).  With some time behind you things will be better and you won't be worrying at every little thing.  Take heart in those of us who did progress who are still going strong years later.  The way I look at it is if we can just delay delay delay, there's a better chance of a cure for all of us.

Good luck to you.  The VAST majority of stage 1A will NEVER recur – rememeber that!

DebbieH 

You are correct.  In 2004 my derm said I was Cured.  20 years out and cured!  It came back like gangsters in 2005.

We must be vigiliant but not let it consume our lives!. 

Cindy VT

You are correct.  In 2004 my derm said I was Cured.  20 years out and cured!  It came back like gangsters in 2005.

We must be vigiliant but not let it consume our lives!. 

Cindy VT

You are correct.  In 2004 my derm said I was Cured.  20 years out and cured!  It came back like gangsters in 2005.

We must be vigiliant but not let it consume our lives!. 

Cindy VT

It means that there were cells left behind but not necessarily because the surgery didn't get it all.  You could have a melanoma that starts growing downward and a few cells break off and get in the bloodstream or lymph system and drift off.  Then you have surgery and they say it's all gone.  Years later those cells that drifted off can start to grow again and that's progression, or recurrence.  It's not considered a new melanoma but is recurrent melanoma and puts you at a higher stage.  People CAN have a new melanoma however, which is a new primary and does not necessarily change your stage.  If your first one was stage 1A and the new one is stage 1A then that's still your stage. 

As to why we don't get additional therapy after the WLE – that's a good question.  Nearly every other cancer gives you something to clean up those stray cells.  I think the issue is that melanoma is pretty resistant to radiation and our other options (interferon for example) are pretty drastic (and expensive) to give to all stage 1A patients when a VERY small number would actually benefit from it.  I seriously doubt that any insurance company would cover adjuvant therapy for an early stage melanoma either.  I had a huge issue with this in the beginning as well.  Even though I was told how lucky I was to have caught it "so early" I practically begged for something more but was told there wasn't anything "more" for me at the time. 

Another way to look at this is buying TIME.  In the VERY unlikely even that you were to recur it could be years and in that time we could have better treatments.  If you went to stage 3 you could be fine after that for years (like me so far!) and in THAT time we could have better treatments.  I had to start looking at things this way or I would have gone insane. 

Again, good luck to you.  The best thing you can do is get out there and enjoy your life.  You could be here for another 80 years (I don't know your age and don't want to short-change you) and you don't want to miss one minute of it by worrying about something that's out of your control.  Get rid of the things that bring you down and live the life you want, as much as anyone can anyway.

DebbieH, stage 1A for 6 years, stage 3C for 11-1/2 years (after interferon) and still going strong! 

It means that there were cells left behind but not necessarily because the surgery didn't get it all.  You could have a melanoma that starts growing downward and a few cells break off and get in the bloodstream or lymph system and drift off.  Then you have surgery and they say it's all gone.  Years later those cells that drifted off can start to grow again and that's progression, or recurrence.  It's not considered a new melanoma but is recurrent melanoma and puts you at a higher stage.  People CAN have a new melanoma however, which is a new primary and does not necessarily change your stage.  If your first one was stage 1A and the new one is stage 1A then that's still your stage. 

As to why we don't get additional therapy after the WLE – that's a good question.  Nearly every other cancer gives you something to clean up those stray cells.  I think the issue is that melanoma is pretty resistant to radiation and our other options (interferon for example) are pretty drastic (and expensive) to give to all stage 1A patients when a VERY small number would actually benefit from it.  I seriously doubt that any insurance company would cover adjuvant therapy for an early stage melanoma either.  I had a huge issue with this in the beginning as well.  Even though I was told how lucky I was to have caught it "so early" I practically begged for something more but was told there wasn't anything "more" for me at the time. 

Another way to look at this is buying TIME.  In the VERY unlikely even that you were to recur it could be years and in that time we could have better treatments.  If you went to stage 3 you could be fine after that for years (like me so far!) and in THAT time we could have better treatments.  I had to start looking at things this way or I would have gone insane. 

Again, good luck to you.  The best thing you can do is get out there and enjoy your life.  You could be here for another 80 years (I don't know your age and don't want to short-change you) and you don't want to miss one minute of it by worrying about something that's out of your control.  Get rid of the things that bring you down and live the life you want, as much as anyone can anyway.

DebbieH, stage 1A for 6 years, stage 3C for 11-1/2 years (after interferon) and still going strong! 

It means that there were cells left behind but not necessarily because the surgery didn't get it all.  You could have a melanoma that starts growing downward and a few cells break off and get in the bloodstream or lymph system and drift off.  Then you have surgery and they say it's all gone.  Years later those cells that drifted off can start to grow again and that's progression, or recurrence.  It's not considered a new melanoma but is recurrent melanoma and puts you at a higher stage.  People CAN have a new melanoma however, which is a new primary and does not necessarily change your stage.  If your first one was stage 1A and the new one is stage 1A then that's still your stage. 

As to why we don't get additional therapy after the WLE – that's a good question.  Nearly every other cancer gives you something to clean up those stray cells.  I think the issue is that melanoma is pretty resistant to radiation and our other options (interferon for example) are pretty drastic (and expensive) to give to all stage 1A patients when a VERY small number would actually benefit from it.  I seriously doubt that any insurance company would cover adjuvant therapy for an early stage melanoma either.  I had a huge issue with this in the beginning as well.  Even though I was told how lucky I was to have caught it "so early" I practically begged for something more but was told there wasn't anything "more" for me at the time. 

Another way to look at this is buying TIME.  In the VERY unlikely even that you were to recur it could be years and in that time we could have better treatments.  If you went to stage 3 you could be fine after that for years (like me so far!) and in THAT time we could have better treatments.  I had to start looking at things this way or I would have gone insane. 

Again, good luck to you.  The best thing you can do is get out there and enjoy your life.  You could be here for another 80 years (I don't know your age and don't want to short-change you) and you don't want to miss one minute of it by worrying about something that's out of your control.  Get rid of the things that bring you down and live the life you want, as much as anyone can anyway.

DebbieH, stage 1A for 6 years, stage 3C for 11-1/2 years (after interferon) and still going strong! 

According to my doctor in 2006, it was explained to me that once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check.  This is why you may see small tumors or lesions and then they are gone.  No one really know why some people survive for a long time and other's do not. 

If  you become NED, try to enjoy it as much as you can without obsessing on it.  After 21 years becoming Stage IIIB, I was sick, and I still am sick, even though I'm NED, because of side effects of this disease, which some say there are and others say there are not. 

I came on this site to find out about new therapies, because I'm not feeling well.  I have been to see my Primary Care Provider who has been with me through all of this.  I'm not ready yet to go forward.  I guess maybe I'm let's see….

scared. 

Peace be with you.

Cindy VT

According to my doctor in 2006, it was explained to me that once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check.  This is why you may see small tumors or lesions and then they are gone.  No one really know why some people survive for a long time and other's do not. 

If  you become NED, try to enjoy it as much as you can without obsessing on it.  After 21 years becoming Stage IIIB, I was sick, and I still am sick, even though I'm NED, because of side effects of this disease, which some say there are and others say there are not. 

I came on this site to find out about new therapies, because I'm not feeling well.  I have been to see my Primary Care Provider who has been with me through all of this.  I'm not ready yet to go forward.  I guess maybe I'm let's see….

scared. 

Peace be with you.

Cindy VT

According to my doctor in 2006, it was explained to me that once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check.  This is why you may see small tumors or lesions and then they are gone.  No one really know why some people survive for a long time and other's do not. 

If  you become NED, try to enjoy it as much as you can without obsessing on it.  After 21 years becoming Stage IIIB, I was sick, and I still am sick, even though I'm NED, because of side effects of this disease, which some say there are and others say there are not. 

I came on this site to find out about new therapies, because I'm not feeling well.  I have been to see my Primary Care Provider who has been with me through all of this.  I'm not ready yet to go forward.  I guess maybe I'm let's see….

scared. 

Peace be with you.

Cindy VT

"once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check"

Janner/Tim:  Is this accurate??  If this is true, if this is the case. . then I really don't understand why additional therapy is not offered after surgery, to try and get the stray cells out of our systems. . I thought surgery cured most early lesions, but this is saying that once you've had it, you will always have it  and only if your immune system keeps it down will you be ok. . so none of us are actually ever cancer-free?  Then I don't understand why after surgery we are not offered additional therapy

"once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check"

Janner/Tim:  Is this accurate??  If this is true, if this is the case. . then I really don't understand why additional therapy is not offered after surgery, to try and get the stray cells out of our systems. . I thought surgery cured most early lesions, but this is saying that once you've had it, you will always have it  and only if your immune system keeps it down will you be ok. . so none of us are actually ever cancer-free?  Then I don't understand why after surgery we are not offered additional therapy

"once you have this nasty beast it is in your system.  Its up to your immune system to keep it in check.  Some people's immune system allow the disease to move forward while others keep it in check"

Janner/Tim:  Is this accurate??  If this is true, if this is the case. . then I really don't understand why additional therapy is not offered after surgery, to try and get the stray cells out of our systems. . I thought surgery cured most early lesions, but this is saying that once you've had it, you will always have it  and only if your immune system keeps it down will you be ok. . so none of us are actually ever cancer-free?  Then I don't understand why after surgery we are not offered additional therapy

They only go after what they can see.  Besides some of the treatments can be caustic.  Like what happened to me with high dose interferon.  It not only my doctor in 2006 who told me this, I also read this in a book and a couple of articles.

My primary care doctor and I were talking about it the other day.  That is why this disease is so infruiating.   This is also why we need more money for research.  Lots like Breast Cancer.  Its just getting the public to really think of it as something that is life threatening to them.  Hey…they still have tan salons?  Go Figure!

Cindy VT

They only go after what they can see.  Besides some of the treatments can be caustic.  Like what happened to me with high dose interferon.  It not only my doctor in 2006 who told me this, I also read this in a book and a couple of articles.

My primary care doctor and I were talking about it the other day.  That is why this disease is so infruiating.   This is also why we need more money for research.  Lots like Breast Cancer.  Its just getting the public to really think of it as something that is life threatening to them.  Hey…they still have tan salons?  Go Figure!

Cindy VT

They only go after what they can see.  Besides some of the treatments can be caustic.  Like what happened to me with high dose interferon.  It not only my doctor in 2006 who told me this, I also read this in a book and a couple of articles.

My primary care doctor and I were talking about it the other day.  That is why this disease is so infruiating.   This is also why we need more money for research.  Lots like Breast Cancer.  Its just getting the public to really think of it as something that is life threatening to them.  Hey…they still have tan salons?  Go Figure!

Cindy VT

The whole point of taking WIDE margins is to remove all melanoma cells with surgery. Period.

The whole point of taking WIDE margins is to remove all melanoma cells with surgery. Period.

The whole point of taking WIDE margins is to remove all melanoma cells with surgery. Period.

Yes I guess that is what it is, wide margins, taking out tumors and then taking many of the lymphnode around the area that is in question.  These are all (soory my words again)  this is suppose to help us tackle the disease.

I am very sorry I obviously upset people.  I really hope the best to everyone.

I went on this site to see what is new in treatment and to maybe help others, but its seems like I have just done the opposite.  And I am sorry.

Cindy VT

Cindy, I wouldn't worry too much about upsetting anonymous posters.

Cindy, I wouldn't worry too much about upsetting anonymous posters.

Cindy, I wouldn't worry too much about upsetting anonymous posters.

Yes I guess that is what it is, wide margins, taking out tumors and then taking many of the lymphnode around the area that is in question.  These are all (soory my words again)  this is suppose to help us tackle the disease.

I am very sorry I obviously upset people.  I really hope the best to everyone.

I went on this site to see what is new in treatment and to maybe help others, but its seems like I have just done the opposite.  And I am sorry.

Cindy VT

Yes I guess that is what it is, wide margins, taking out tumors and then taking many of the lymphnode around the area that is in question.  These are all (soory my words again)  this is suppose to help us tackle the disease.

I am very sorry I obviously upset people.  I really hope the best to everyone.

I went on this site to see what is new in treatment and to maybe help others, but its seems like I have just done the opposite.  And I am sorry.

Cindy VT

I was diagnosed in the spring of 1984.  I have no idea what level I was.  I just knew I had a biopsy, then they took out a huge amount of skin around my wrist and said I needed more therapy.    I had 2 small kids.  I just didn't go back.

I had health problems in those years but then it came back Stage IIIB in 2006.  And in 2010 I was NED.   So for me it been like 29 years. 

My cousin lived in Chicago.  She hardly ever tanned.  I didn't really keep in touch with her, but members of our family said she had the disease and for a long time, she died in 2004 and she was 58.  She was my father's niece.  His sister's daughter.  Is this disease genetic or hormonal?

Again more money for research. 

I paint pictures.  I wanted to put them on Ebay and I wanted the money to go to Melanoma Research, does anyone know how to do this?

Cindy VT

I was diagnosed in the spring of 1984.  I have no idea what level I was.  I just knew I had a biopsy, then they took out a huge amount of skin around my wrist and said I needed more therapy.    I had 2 small kids.  I just didn't go back.

I had health problems in those years but then it came back Stage IIIB in 2006.  And in 2010 I was NED.   So for me it been like 29 years. 

My cousin lived in Chicago.  She hardly ever tanned.  I didn't really keep in touch with her, but members of our family said she had the disease and for a long time, she died in 2004 and she was 58.  She was my father's niece.  His sister's daughter.  Is this disease genetic or hormonal?

Again more money for research. 

I paint pictures.  I wanted to put them on Ebay and I wanted the money to go to Melanoma Research, does anyone know how to do this?

Cindy VT

I was diagnosed in the spring of 1984.  I have no idea what level I was.  I just knew I had a biopsy, then they took out a huge amount of skin around my wrist and said I needed more therapy.    I had 2 small kids.  I just didn't go back.

I had health problems in those years but then it came back Stage IIIB in 2006.  And in 2010 I was NED.   So for me it been like 29 years. 

My cousin lived in Chicago.  She hardly ever tanned.  I didn't really keep in touch with her, but members of our family said she had the disease and for a long time, she died in 2004 and she was 58.  She was my father's niece.  His sister's daughter.  Is this disease genetic or hormonal?

Again more money for research. 

I paint pictures.  I wanted to put them on Ebay and I wanted the money to go to Melanoma Research, does anyone know how to do this?

Cindy VT

Who know why?  I was 20 years out and my derm said it was Cured!  Cured after being 20 years out.

Well in 2005, I wasn't cured at all.  And this is how it was explained to me.  No cure.  I don't think there is any cancer that is curable. My mother has breast cancer.  My dad had multiple myeloma.  Grandfather Pancreatic cancer.  Uncle Lung Cancer.  The isn't a cure for any of them. 

I don't know what else to say.  Its your decision on how to live with it.  I'm deeply sorry.  Cindy VT

Who know why?  I was 20 years out and my derm said it was Cured!  Cured after being 20 years out.

Well in 2005, I wasn't cured at all.  And this is how it was explained to me.  No cure.  I don't think there is any cancer that is curable. My mother has breast cancer.  My dad had multiple myeloma.  Grandfather Pancreatic cancer.  Uncle Lung Cancer.  The isn't a cure for any of them. 

I don't know what else to say.  Its your decision on how to live with it.  I'm deeply sorry.  Cindy VT

Who know why?  I was 20 years out and my derm said it was Cured!  Cured after being 20 years out.

Well in 2005, I wasn't cured at all.  And this is how it was explained to me.  No cure.  I don't think there is any cancer that is curable. My mother has breast cancer.  My dad had multiple myeloma.  Grandfather Pancreatic cancer.  Uncle Lung Cancer.  The isn't a cure for any of them. 

I don't know what else to say.  Its your decision on how to live with it.  I'm deeply sorry.  Cindy VT