SteveBMe

Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

I learned 12/00 that I'd been misdiagnosed in 9/1990.

Just passed my 108 month mark.

12 more months to reach 120 months.

I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

Keep living people. Each new day we live– we're one day closer to the cure.

There's an ancient proverb that says–

The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

I learned 12/00 that I'd been misdiagnosed in 9/1990.

Just passed my 108 month mark.

12 more months to reach 120 months.

I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

Keep living people. Each new day we live– we're one day closer to the cure.

There's an ancient proverb that says–

The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

Was dx'd stage 3, June 1997. Stage 4 since June 1999. NED since February 2004.

I learned 12/00 that I'd been misdiagnosed in 9/1990.

Just passed my 108 month mark.

12 more months to reach 120 months.

I hope you're all still alive. I see where this thread started 2 years, 4 months ago.

Keep living people. Each new day we live– we're one day closer to the cure.

There's an ancient proverb that says–

The spirit of a man will sustain him in his illness. but a wounded spirit, who can bear.

Hi Joan.

Sorry you got the "screw" on Medicare info.

During my time, I was on Medicare– I suppose it was the "original" as I had no gap-filler plans– everything that was needed was paid– except my lymphatic compression stockings. I was without insurance for 5 years, and only on Medicare Parts A and B, and was so glad when I returned to work and was able to get new stockings… now Obamacare has screwed it all up again, and my plan's deductibles have gone through the roof, essentially leaving my wife and I with no insurance, and paying 2400 a year for the pleasure….

If you have breast involvement, there was a plan signed by Clinton in 1998 that might cover all your needs.

As messy as it is– becoming your own patient advocate– unless you can find a really good one– will be your best plan. I hated it, but I got what I needed.

Oh, I remember… doh! Patient Advocate Foundation in Virginia.

http://www.npaf.org

They might be able to help.

Best– hang in there… as long as we're alive, there is hope.

Hi Joan.

Sorry you got the "screw" on Medicare info.

During my time, I was on Medicare– I suppose it was the "original" as I had no gap-filler plans– everything that was needed was paid– except my lymphatic compression stockings. I was without insurance for 5 years, and only on Medicare Parts A and B, and was so glad when I returned to work and was able to get new stockings… now Obamacare has screwed it all up again, and my plan's deductibles have gone through the roof, essentially leaving my wife and I with no insurance, and paying 2400 a year for the pleasure….

If you have breast involvement, there was a plan signed by Clinton in 1998 that might cover all your needs.

As messy as it is– becoming your own patient advocate– unless you can find a really good one– will be your best plan. I hated it, but I got what I needed.

Oh, I remember… doh! Patient Advocate Foundation in Virginia.

http://www.npaf.org

They might be able to help.

Best– hang in there… as long as we're alive, there is hope.

Hi Joan.

Sorry you got the "screw" on Medicare info.

During my time, I was on Medicare– I suppose it was the "original" as I had no gap-filler plans– everything that was needed was paid– except my lymphatic compression stockings. I was without insurance for 5 years, and only on Medicare Parts A and B, and was so glad when I returned to work and was able to get new stockings… now Obamacare has screwed it all up again, and my plan's deductibles have gone through the roof, essentially leaving my wife and I with no insurance, and paying 2400 a year for the pleasure….

If you have breast involvement, there was a plan signed by Clinton in 1998 that might cover all your needs.

As messy as it is– becoming your own patient advocate– unless you can find a really good one– will be your best plan. I hated it, but I got what I needed.

Oh, I remember… doh! Patient Advocate Foundation in Virginia.

http://www.npaf.org

They might be able to help.

Best– hang in there… as long as we're alive, there is hope.

Hi Natasha.

you've said nothing of the doctor's you're hooked up with, the region of the country you live in, etc….

There are plenty of really awesome resources out there, so please make use of this site. Study through, and examine what resources may be available near you.

I keep hearing more and more stories of people living much longer than they did in the "old days."

I was clark level IV when I was originally misdiagnosed in 1990. I've seldom heard of clarks level II getting back terminal news over the past few years.

Follow your doctor's protocols, stay on track, and get CONNECTED with good melanoma doctors.

Hi Natasha.

you've said nothing of the doctor's you're hooked up with, the region of the country you live in, etc….

There are plenty of really awesome resources out there, so please make use of this site. Study through, and examine what resources may be available near you.

I keep hearing more and more stories of people living much longer than they did in the "old days."

I was clark level IV when I was originally misdiagnosed in 1990. I've seldom heard of clarks level II getting back terminal news over the past few years.

Follow your doctor's protocols, stay on track, and get CONNECTED with good melanoma doctors.

Hi Natasha.

you've said nothing of the doctor's you're hooked up with, the region of the country you live in, etc….

There are plenty of really awesome resources out there, so please make use of this site. Study through, and examine what resources may be available near you.

I keep hearing more and more stories of people living much longer than they did in the "old days."

I was clark level IV when I was originally misdiagnosed in 1990. I've seldom heard of clarks level II getting back terminal news over the past few years.

Follow your doctor's protocols, stay on track, and get CONNECTED with good melanoma doctors.

Here…..

Mole turned malignant in 1987. In 1990, two weeks before I was to get married, I decided to "do the responsible thing" and see a dermatologist.

Went in after work one day, saw doc, showed him the mole. He looked at it, froze it with nitrogen, took it in back, supposedly looked at it under a microscope, and came back 10 minutes later with the words– it's benign, go have a nice life.

So, living on the beach, working outdoors, 30 yrs of age, getting ready to get married, and head to Kauai for a 9 day honeymoon– you bet yur britches I went out and had a nice life…. La vida loca babeee….

Just days before I got married, the clinic called with the pathology report– it's benign.

that was around August 23, 1990. I got married that Saturday….

In 1992, I got some kind of an infection, in the left groin– location where the mets would've initialized. I went to the gp doc and received some antibiotics. 

In explaining to him that it really hurt, and was a lump in my groin, about the size of a quarter, he said it was probably an infection, and the lymph nodes took on the infection and became scar tissue. Made sense to me, so I moved on. As the antibiotics killed what I had believed to be an infection– pain was gone– I moved on with my life.

In 2000, at what would be my final week with my mother before her own lung cancer would kill her T-day weekend, I called the dermatologist whom I'd then come to believe had initially misdiagnosed me, and made an appointment.

I was headed fo my own, 3rd by then, surgery ten days after my mother died, and so I had a CT report showing more tumor, so I confronted him, and matter-of-factly said– I just wanted to thank you for murdering me, as I handed him the report.

I said it in a rather sacastic, but flat manner, so it was a shock to him, and you could see it on his face (if you ever get misdiagnosed– try it sometime… it's an interesting feeling to actually have proof someone whom you trusted– and paid– has treated you in a manner that could realistically result in your death). They pulled my then 10 year old file out of archives, and noticed the records– benign. So, the director of the clinic pulled my biopsy– also out of archives– and had the pathology redone.

I received a report in the mail on December 6, 2000, 4 days before surgery #3, and it said metastatic melanoma, clark's level 4.

So, almost 14 years after onset, 10 years after misdiagnosis, 3-1/2 years after a correct diagnosis, 3 years into a 4 year clinical drug trial, just days before my 3rd tumor surgery, working on my final lower division physics classes, a week and a half after my mother's death to her own lung cancer, 7 months after my mother in law had died of kdney failure from adult onset diabetes, and 4-1/2 years of my wife's own major, as yet unexplainable medical issues….

I finally got news that I had been screwed and still, to this day, I have no idea why I was misdiagnosed. Was it deliberate? Did the guy have to go potty and chose not to wait? Did he have a golf game to get to, and was in a hurry? Did he just not pay attention– for any one of a thousand different reasons?

So… yea… it happens.

If you ever have any doubts– get a second opinion…. even if it seems silly to doubt. Technology today is better than it was in 1990. I've finally come to the polnt where I actually believe now that he did me a favor by misdiagnosing me. I was young enough, healthy, and active enough, that it wasn't until my late 30's that I had become so worn down from working so many hours, eating so poorly, that I had lasted long enough to gain access to much better technology, that was nowhere near as caustic to my body as existed in 1990.

I have come the place now that I actually believe had I been correctly diagnosed in 1990, I'd have been dead by 1993, if not sooner.

Life is an amazing thing… I really do believe that things happen for reasons that I beyond our understanding at the time they happen…. some reasons become clear later, and some will have to wait until eternity.

I'm now alive, after 25 years…. and not one of my docs can explain it… Some say it's a miracle, and others just shrug their shoulders and move on.

As it's been said before– I stand atop the highest mountains where I live, and scream out at the tops of my lungs– Thank God I'm alive!!!!!!! Sometimes I'll even do it in the alleyways, and gutters…. just so the depair-filled can hear that there's hope– inspite of ourselves….

Here…..

Mole turned malignant in 1987. In 1990, two weeks before I was to get married, I decided to "do the responsible thing" and see a dermatologist.

Went in after work one day, saw doc, showed him the mole. He looked at it, froze it with nitrogen, took it in back, supposedly looked at it under a microscope, and came back 10 minutes later with the words– it's benign, go have a nice life.

So, living on the beach, working outdoors, 30 yrs of age, getting ready to get married, and head to Kauai for a 9 day honeymoon– you bet yur britches I went out and had a nice life…. La vida loca babeee….

Just days before I got married, the clinic called with the pathology report– it's benign.

that was around August 23, 1990. I got married that Saturday….

In 1992, I got some kind of an infection, in the left groin– location where the mets would've initialized. I went to the gp doc and received some antibiotics. 

In explaining to him that it really hurt, and was a lump in my groin, about the size of a quarter, he said it was probably an infection, and the lymph nodes took on the infection and became scar tissue. Made sense to me, so I moved on. As the antibiotics killed what I had believed to be an infection– pain was gone– I moved on with my life.

In 2000, at what would be my final week with my mother before her own lung cancer would kill her T-day weekend, I called the dermatologist whom I'd then come to believe had initially misdiagnosed me, and made an appointment.

I was headed fo my own, 3rd by then, surgery ten days after my mother died, and so I had a CT report showing more tumor, so I confronted him, and matter-of-factly said– I just wanted to thank you for murdering me, as I handed him the report.

I said it in a rather sacastic, but flat manner, so it was a shock to him, and you could see it on his face (if you ever get misdiagnosed– try it sometime… it's an interesting feeling to actually have proof someone whom you trusted– and paid– has treated you in a manner that could realistically result in your death). They pulled my then 10 year old file out of archives, and noticed the records– benign. So, the director of the clinic pulled my biopsy– also out of archives– and had the pathology redone.

I received a report in the mail on December 6, 2000, 4 days before surgery #3, and it said metastatic melanoma, clark's level 4.

So, almost 14 years after onset, 10 years after misdiagnosis, 3-1/2 years after a correct diagnosis, 3 years into a 4 year clinical drug trial, just days before my 3rd tumor surgery, working on my final lower division physics classes, a week and a half after my mother's death to her own lung cancer, 7 months after my mother in law had died of kdney failure from adult onset diabetes, and 4-1/2 years of my wife's own major, as yet unexplainable medical issues….

I finally got news that I had been screwed and still, to this day, I have no idea why I was misdiagnosed. Was it deliberate? Did the guy have to go potty and chose not to wait? Did he have a golf game to get to, and was in a hurry? Did he just not pay attention– for any one of a thousand different reasons?

So… yea… it happens.

If you ever have any doubts– get a second opinion…. even if it seems silly to doubt. Technology today is better than it was in 1990. I've finally come to the polnt where I actually believe now that he did me a favor by misdiagnosing me. I was young enough, healthy, and active enough, that it wasn't until my late 30's that I had become so worn down from working so many hours, eating so poorly, that I had lasted long enough to gain access to much better technology, that was nowhere near as caustic to my body as existed in 1990.

I have come the place now that I actually believe had I been correctly diagnosed in 1990, I'd have been dead by 1993, if not sooner.

Life is an amazing thing… I really do believe that things happen for reasons that I beyond our understanding at the time they happen…. some reasons become clear later, and some will have to wait until eternity.

I'm now alive, after 25 years…. and not one of my docs can explain it… Some say it's a miracle, and others just shrug their shoulders and move on.

As it's been said before– I stand atop the highest mountains where I live, and scream out at the tops of my lungs– Thank God I'm alive!!!!!!! Sometimes I'll even do it in the alleyways, and gutters…. just so the depair-filled can hear that there's hope– inspite of ourselves….

Here…..

Mole turned malignant in 1987. In 1990, two weeks before I was to get married, I decided to "do the responsible thing" and see a dermatologist.

Went in after work one day, saw doc, showed him the mole. He looked at it, froze it with nitrogen, took it in back, supposedly looked at it under a microscope, and came back 10 minutes later with the words– it's benign, go have a nice life.

So, living on the beach, working outdoors, 30 yrs of age, getting ready to get married, and head to Kauai for a 9 day honeymoon– you bet yur britches I went out and had a nice life…. La vida loca babeee….

Just days before I got married, the clinic called with the pathology report– it's benign.

that was around August 23, 1990. I got married that Saturday….

In 1992, I got some kind of an infection, in the left groin– location where the mets would've initialized. I went to the gp doc and received some antibiotics. 

In explaining to him that it really hurt, and was a lump in my groin, about the size of a quarter, he said it was probably an infection, and the lymph nodes took on the infection and became scar tissue. Made sense to me, so I moved on. As the antibiotics killed what I had believed to be an infection– pain was gone– I moved on with my life.

In 2000, at what would be my final week with my mother before her own lung cancer would kill her T-day weekend, I called the dermatologist whom I'd then come to believe had initially misdiagnosed me, and made an appointment.

I was headed fo my own, 3rd by then, surgery ten days after my mother died, and so I had a CT report showing more tumor, so I confronted him, and matter-of-factly said– I just wanted to thank you for murdering me, as I handed him the report.

I said it in a rather sacastic, but flat manner, so it was a shock to him, and you could see it on his face (if you ever get misdiagnosed– try it sometime… it's an interesting feeling to actually have proof someone whom you trusted– and paid– has treated you in a manner that could realistically result in your death). They pulled my then 10 year old file out of archives, and noticed the records– benign. So, the director of the clinic pulled my biopsy– also out of archives– and had the pathology redone.

I received a report in the mail on December 6, 2000, 4 days before surgery #3, and it said metastatic melanoma, clark's level 4.

So, almost 14 years after onset, 10 years after misdiagnosis, 3-1/2 years after a correct diagnosis, 3 years into a 4 year clinical drug trial, just days before my 3rd tumor surgery, working on my final lower division physics classes, a week and a half after my mother's death to her own lung cancer, 7 months after my mother in law had died of kdney failure from adult onset diabetes, and 4-1/2 years of my wife's own major, as yet unexplainable medical issues….

I finally got news that I had been screwed and still, to this day, I have no idea why I was misdiagnosed. Was it deliberate? Did the guy have to go potty and chose not to wait? Did he have a golf game to get to, and was in a hurry? Did he just not pay attention– for any one of a thousand different reasons?

So… yea… it happens.

If you ever have any doubts– get a second opinion…. even if it seems silly to doubt. Technology today is better than it was in 1990. I've finally come to the polnt where I actually believe now that he did me a favor by misdiagnosing me. I was young enough, healthy, and active enough, that it wasn't until my late 30's that I had become so worn down from working so many hours, eating so poorly, that I had lasted long enough to gain access to much better technology, that was nowhere near as caustic to my body as existed in 1990.

I have come the place now that I actually believe had I been correctly diagnosed in 1990, I'd have been dead by 1993, if not sooner.

Life is an amazing thing… I really do believe that things happen for reasons that I beyond our understanding at the time they happen…. some reasons become clear later, and some will have to wait until eternity.

I'm now alive, after 25 years…. and not one of my docs can explain it… Some say it's a miracle, and others just shrug their shoulders and move on.

As it's been said before– I stand atop the highest mountains where I live, and scream out at the tops of my lungs– Thank God I'm alive!!!!!!! Sometimes I'll even do it in the alleyways, and gutters…. just so the depair-filled can hear that there's hope– inspite of ourselves….

Hi.

I don't know how, or why, but my 1990 mole resection came back as benign. As it was 2 weeks before my wedding, I was happy as a lark, and just went on with my life (the only reason I even went in there to get it looked at was to "do the responsible thing" for my wife's benefit. I never would've guessed in a 1000 years anything was really wrong. I had a really non-chalant attitude towards it– until 1997). In Novermber 2000, I confronted the doctor, with latest CT report in hand (headed for my 3rd surgery in 3 weeks, and already into the 3rd year of a 4 year cliinical drug trial protocol), and he was so freaked out, he pulled my biopsy slide, had it rechecked, and it was determined then that the original biopsy was misdiagnosed.

It was further determined that even if I had been properly diagnosed it would not have helped. There have been times that I've honestly wondered if he deliberately mis-diagnosed me to give me a fighting chance, knowing that the medical treatments in 1990 would most certainly have resulted in my death within the standard period– 1-3 years. I had already had the mole for 3-1/2 years, so it was pretty well advanced by then.

The 2000 pathology report says it was a clarks level 4.

As it's been so long since that, I remember the mole being huge, and raised a good 1/8" above my leg surface. I don't really remember much else, save that it was black, had reddish edges, and would grow a scale-like surface on it, which I'd peel rather regularly. I remember pinching, teasing, squeezing, etc….

It hurt too.

Well, as I've never been to Britain, I cannot comment on what/how/why of the way things go there. I'd be bugging them for it. CLII is a good thing, in that it's been caught so early, you have a much better chance beating this than had you waited.

Hi.

I don't know how, or why, but my 1990 mole resection came back as benign. As it was 2 weeks before my wedding, I was happy as a lark, and just went on with my life (the only reason I even went in there to get it looked at was to "do the responsible thing" for my wife's benefit. I never would've guessed in a 1000 years anything was really wrong. I had a really non-chalant attitude towards it– until 1997). In Novermber 2000, I confronted the doctor, with latest CT report in hand (headed for my 3rd surgery in 3 weeks, and already into the 3rd year of a 4 year cliinical drug trial protocol), and he was so freaked out, he pulled my biopsy slide, had it rechecked, and it was determined then that the original biopsy was misdiagnosed.

It was further determined that even if I had been properly diagnosed it would not have helped. There have been times that I've honestly wondered if he deliberately mis-diagnosed me to give me a fighting chance, knowing that the medical treatments in 1990 would most certainly have resulted in my death within the standard period– 1-3 years. I had already had the mole for 3-1/2 years, so it was pretty well advanced by then.

The 2000 pathology report says it was a clarks level 4.

As it's been so long since that, I remember the mole being huge, and raised a good 1/8" above my leg surface. I don't really remember much else, save that it was black, had reddish edges, and would grow a scale-like surface on it, which I'd peel rather regularly. I remember pinching, teasing, squeezing, etc….

It hurt too.

Well, as I've never been to Britain, I cannot comment on what/how/why of the way things go there. I'd be bugging them for it. CLII is a good thing, in that it's been caught so early, you have a much better chance beating this than had you waited.

Hi.

I don't know how, or why, but my 1990 mole resection came back as benign. As it was 2 weeks before my wedding, I was happy as a lark, and just went on with my life (the only reason I even went in there to get it looked at was to "do the responsible thing" for my wife's benefit. I never would've guessed in a 1000 years anything was really wrong. I had a really non-chalant attitude towards it– until 1997). In Novermber 2000, I confronted the doctor, with latest CT report in hand (headed for my 3rd surgery in 3 weeks, and already into the 3rd year of a 4 year cliinical drug trial protocol), and he was so freaked out, he pulled my biopsy slide, had it rechecked, and it was determined then that the original biopsy was misdiagnosed.

It was further determined that even if I had been properly diagnosed it would not have helped. There have been times that I've honestly wondered if he deliberately mis-diagnosed me to give me a fighting chance, knowing that the medical treatments in 1990 would most certainly have resulted in my death within the standard period– 1-3 years. I had already had the mole for 3-1/2 years, so it was pretty well advanced by then.

The 2000 pathology report says it was a clarks level 4.

As it's been so long since that, I remember the mole being huge, and raised a good 1/8" above my leg surface. I don't really remember much else, save that it was black, had reddish edges, and would grow a scale-like surface on it, which I'd peel rather regularly. I remember pinching, teasing, squeezing, etc….

It hurt too.

Well, as I've never been to Britain, I cannot comment on what/how/why of the way things go there. I'd be bugging them for it. CLII is a good thing, in that it's been caught so early, you have a much better chance beating this than had you waited.