Overtreatment?

Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

Janner, you've done a great job of responding to Bob b.  I have toagree with exctly wht you said about Dr. Mercola.  It seems that there might be some variance in the term "self-diagnosis"  as Bob uses the term.  Of course we all do self checks, and come up with what we suspect.  i know of none of us that are truely  capable of a complete self diagnosis.  The only diagnosis I trust is from at least one pathology report. (No problem with having more than one report done.)  As you are aware I have found the path of all my additional tumors (excpt for the lungs) and been correct in what i thought was melanoma and what I wanted checked out  otherwise just to be absolutely sure.  What I didn't think was melanoma wasn't, but I prefer a pathology rport to make tha actual diagnosis.  As you know, according to the general points on who needs to watch for melanoma, I just love the fact that I have no worry about getting mel based on the "profile".  Wish the pathologists reports agreed!

Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

Clark's Level IV USED TO BE an indication to do a SNB prior to the new staging changes.  It used to differentiate between stage IA and stage IB.  Some sites might still use that as their criteria.

Dr. Mercola isn't a quack?  That's a loaded statement and I beg to differ.  He has many theories, but no clinical trials to prove his theories.  He's good at spinning his own stories, but I want to see CLINICAL EVIDENCE (blinded studies, peer reviews, etc) before I'll give his theories much credence.  He is a good salesman, though.

Melanoma occurs most often in men over 60.  While the young are getting diagnosed more and more, it is most often the elderly that are diagnosed.  Because of the technology gap in the older population, we don't always see that population represented here.  People who tend to have more constant exposure don't see melanoma as often as people who have intermittent burns and sporadic exposure.  My Dad is of English extraction, blonde and blue eyed, tanned and got melanoma at age 82.  My Mom got melanoma at age 83.  She's also of northern European extraction.  90% of melanomas are considered sporadic – that is – they have no genetic defect to cause them.  I'm the oddball.  I am adopted so my parent's both having melanoma means nothing to me.  I've been tested because of my 3 primaries and I do have one of the genetic defects researched (76% lifetime risk of melanoma).   I do have to wonder about environment given both of my parents with melanoma.  With my genetic tendency, I figure even one stupid sunburn might have tipped my odds.

To me, it seems like you are seeing overtreatment conspiracy theories where they really don't exist.  Certainly, some practicians do more than needed, and some patients REQUIRE more than is necessary.  General standards do exist and the majority of people basically follow those general standards in treatment.  Always some outliers.  Australia (highest melanoma incidence in the world) doesn't do things exactly like the US.  There have never been any INTERNATIONAL STANDARDS applied to any stage of the disease.

I have some personal history with vitamin D..

My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

Nobody in my family has ever had melanoma.

I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

I would have guessed you came to teach others.

I'm reading this: 

(1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

(2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

What I don't understand is:

(1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

(2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

If you want my opinion on where this went wrong, it's the delivery. 

Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

Then lets start over. You're very clever in your writing, and it's obvious that you have put a lot of time and energy into researching information for yourself, it just happens to be the opposite of what most here believe. That doesn't make you wrong, but there might be a better way to discuss it. 

I truly meant it when I said I was sorry you have melanoma. It's a nasty, sneaky, dirty, rotten cancer. Not many people know anything about it – people ask me if I'm going to have chemo. I say, no, chemo doesn't work. They say oh that's great, you don't have to lose your hair. If it truly was a matter of cutting it out and then skipping away, that would be great, but people sometimes go from stage 1 to stage 4 in a few months, so it's not great.

Everyone with melanoma who have children are also feeling bad that they've put their child at risk just by having it. They're worried about their siblings. They hear that the younger you are, the harder it is to survive. 

I am one of the fortunate ones and you are in a better position than I am, but while here, on this forum, it comes down to there but for the grace of God, go I. 

I would have guessed you came to teach others.

I'm reading this: 

(1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

(2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

What I don't understand is:

(1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

(2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

If you want my opinion on where this went wrong, it's the delivery. 

I would have guessed you came to teach others.

I'm reading this: 

(1) The doctors you've seen wished to over-treat early stage melanoma, which must mean that a lot of people in this forum had the same type of doctors and took them up on their offer, and that was wrong. 

(2) You believe that melanoma isn't caused by UV because you spent a good share of your life in sun and on the water.

What I don't understand is:

(1) Are you suggesting people take your advice and watch a possible second primary develop over months/years?

(2) Spend more time in the sun and on the water unprotected because the worst that could happen is that they get a tumor under 1mm? and then maybe get another years later?

If you want my opinion on where this went wrong, it's the delivery. 

Hello All,

I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

Zeus

Hello All,

I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

Zeus

Hello All,

I was diagnosed Stage 1b in 2010, recurrence of Stage 1ish 2012. I am still in process. Feel like a pin cushion, shave biopsies, punch, excisions-MIS, severe cytologic atypia X3. My moles do not look suspisious to anyone. Except for the first one which was weeping, the rest have been light brown, symmetrical and small. I recently insisted on biopsiy because they were new moles. I am over 50  and should not have new moles. 

I am worried about undertreatment. Is there nothing better than biopsy everything? Which I am willing to do to keep this from progressing. Janner – ideas? I am new to this board and have no idea what I am doing. 

To everyone, than you for posting. I appreciate all the input and find the conversation informative and hopeful. I am not alone. My docs are freaked out. No one wants that.l

Zeus

I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

I'm not meaning to be rude to you, I guess I just don't understand what you want to talk about. I did see what was offered to you as far as overtreatment and it sounded too extreme, because they just don't do anything in Minnesota until a person is at stage 4. We're offered excision surgery, SLNB if you fit the need (over 1mm, mitotic rate, ulceration), and that's it until or if it explodes.

I did see some posts here where people had interferon at an earlier stage years ago. People post their treatment history in their profile, so maybe you can decide if someone has been overtreated. I've read nearly every profile here, for most I wish there was more treatment.

I have a friend with several primaries all under 1mm, now removed, and she is seen every 3 mos. to check for more. That's it. That seems to be the standard for under 1mm. I would trade a few primaries under 1mm for one that is over.

I have some personal history with vitamin D..

My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

Nobody in my family has ever had melanoma.

I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

I have some personal history with vitamin D..

My level was and is fine – I was interested in vitamin D deficiency several years ago because I developed pregnancy-related autoimmune disease, so I jumped at any explanation or possible cure. I got melanoma.

My mother was tested last year as part of a yearly physical and found out she had dangerously low levels, possibly for years. She's never been ill in her life. She's 70.

My brother had severe depression and was hospitalized 6 years ago. He was put on powerful antidepressants that did not help. A doctor later discovered he had vitamin D deficiency. Now he is fine and doesn't need antidepressants.

Nobody in my family has ever had melanoma.

I think if you read through the posts here, you wouldn't find anyone who has been overtreated. Just the word bothers me in relation to melanoma because I want to say, "what treatment?" That isn't fair to the stage 4 people receiving treatment though.

I'm sorry you have melanoma. I'm sorry for all of us who have it. I really wish I would have been any age older than I am before I got it. Maybe all your surfing did protect you for another 20-30 years. You'll never know. Maybe I should have been out in the sun more. I'll never know.

Since you've seen so many doctors, it's no wonder you've gotten so many opinions, but its your life and you need to do what you have to do. I really don't know why I've spent the time replying (no offense) because I sense that you might be some kind of apologist for Dr. Mercola. I would hope that nobody would come to a forum like this for that, but one never knows. I myself feel like a jerk for even posting here because I am just a stage 1B, but I am still trying to deal with my diagnosis.

You have brought up an interesting topic but maybe not in the most diplimatic way…..

I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

Mary

Stage 3

I also value candor over diplomacy!

I also value candor over diplomacy!

I also value candor over diplomacy!

I also value candor over diplomacy!

I also value candor over diplomacy!

I also value candor over diplomacy!

You have brought up an interesting topic but maybe not in the most diplimatic way…..

I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

Mary

Stage 3

You have brought up an interesting topic but maybe not in the most diplimatic way…..

I am stage 3a.  All along I was given choices in my treatement, though I must admit in the beginning I felt like I had to make decisions immediately when I maybe should have waited and researched more. I don't think the doctor ever push for an immediate decision, I felt it was necessary.  In hind sight I would have made exactly the same decisions so I suppose the doc gave me good info. 

However it is difficult to say, when I have had enough scans and can spread them out or do I continue to trust the doctor.  I am still in the mode of having too many moles removed, I too discovered my own melanoma.  But all these things are lifes little hurdles.  For I am one of the lucky ones …

Mary

Stage 3

I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

       What if he had even felt the nodal basin?

       What if he had scanned it?

MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

Good luck ad keep learning!

I learn so much from reading everything you write – thank you.

I learn so much from reading everything you write – thank you.

I learn so much from reading everything you write – thank you.

I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

       What if he had even felt the nodal basin?

       What if he had scanned it?

MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

Good luck ad keep learning!

I have read that SNB's or Non-therapeutic, useful only for staging and prognosis.  I have problems with that as an absolute statement.  I tend to believe that some few are likely way beyond Stage I or 2 when their primary is beyond imm, and especially if beyond 3 mm thick.  For all cases where a primary is near 1 mm or more i would like for conduction of the dye test to determine which lymph node is the sentinal node in the lyph system for the primary's location.  Even if no biopsy is done that nodal basin should be watched, (Ct, MRi, ultrasoud /)  The patient shoud be taught how to self examine the nodal basin.  If this had been done in my case there is a chance (perhaps slight after the 4 year delay) that I would not have had most nodes in two major lymph node chains overrun and the melanoma cells have already spread beyond the basins before before I found the golfball sized node on my own.  Just imgine "WHAT

IF"?    !. my general surgeon had known enough to check the Sentinel node in May after pathology said I had melanoma?

       What if he had even felt the nodal basin?

       What if he had scanned it?

MAYBE I would have stopped at stage III!      My peronal suspicion is that if enough of a reason is found to suspect that the sentinal node has melanoma, that enough nodes should be removed that a few clear nodes should be found before node removal is stopped.  I do suspect that if some clear nodes are not removed, but watched closely that a progression of the cancer might be found before it makes the next jump (most likely to the lungs).  I have read several places that approximately 40% of Stage IV patients will have metastisis of melanoma to the brain. 

I had spend an hour writting a reponse about radiation then accidentally wiped  it out.  Will try to write more on that line later.  but basically forget radiation as a treatment to eliminate melanoma from other than the brain.  Radiation therapy can reduce the tumor load and size to make surgery a feasible option.  Look at the damage radiation does to the body as it passes thru healthy tissue before and after the tumor.  Especially if it has to pass through the heart or the intestines.  (Compare the side effects of proton radiation {http://www.protons.com/} on prostrate cancer and side effects with the standard radiation treatments for prostrate cancer.  Most guys can still 'enjoy certain events in life after proton radiation.that conventional radiation removes most of the time.)  I have never read any reports of the results of proton radiation on melanoma.  I know the  insurance companies don't like proton radiaton because of the expense.  My largest lung tumors are over my heart. most members of my fathers side of the jamily have died from circultory problems, (heart attack, stokes, cingestive heart failure).  I would prefer that my heart tissue not be damaged by a radiation treatment that would likely be a pallative treatment, not curative.

Good luck ad keep learning!

I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met? 

Very understandable, I hope the doctor you've found will get you in soon to remove it. 

I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

I am watching these studies with hope and dread because I have autoimmune disease and it's very likely that I would be excluded if I were to be at the point where something like this would benefit me. I would be happy if they benefit others though, and even one person getting into remission from this particular one is encouraging.

I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

It's just another thing to blame on the sun 😉  Solar flares. This one came in three times.

It's just another thing to blame on the sun 😉  Solar flares. This one came in three times.

It's just another thing to blame on the sun 😉  Solar flares. This one came in three times.

I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

I haven't received the reply you wrote, but I just received one in email asking if it was erased – I don't know if it was. It's weird that I got a notice for the one you wrote this morning, but not the one yesterday.

I didn't mean anything bad about "understandable" – I meant I understood for the reasons you listed, and I can see why your past experience would make you not want to go in sooner too.

Very understandable, I hope the doctor you've found will get you in soon to remove it. 

I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

Very understandable, I hope the doctor you've found will get you in soon to remove it. 

I've found some variation here, I had an excision as my initial biopsy. I believe it was because my derm is just out of residency at Mayo Clinic, and being young, he confidence level is very high. At some point during the cutting, he must have realized he was scaring me because he back-tracked and said it was probably a seborrheic keratosis. He didn't know that I had a long of prior history with dermatology due to autoimmune skin disease, so I knew something was wrong by the methods he was using. I am angry at myself for not going in sooner, even though it was just 3 months. I am a patient of the University of MN for my autoimmune mess, but for me to get into that clinic in less than a few months wait, I would have had to lie and say it was for my autoimmune disease, which would have also required the process of seeing my primary care doctor and getting a referral. I waited 3 months because I hate the process and then by maybe some divine intervention, my clinic hired this dermatologist and I was able to get in during his first weeks at our clinic group by just calling and making an appt. myself.

My good friend, who also lives in MN, who has had several SSM primaries under 1mm has gotten "shaves" for all of them. I somehow find that ridiculous, but I don't know why – I got the impression here that you can lose valuable tumor information by having that type of biopsy, but I don't know that for certain.

Minnesota does frozen section with SLNB. I learned here that it shouldn't be done that way, the lymph node should be sent for dermatopatholgy whole. There was no way for me to convince them otherwise, I tried, and I seemed to partially alienate the derm and the surgeon by asking. They thought I was nuts. Well, guess what? I had a melanocytic nevus in my lymph node and that's the one time where they can give false positives which end up in total lymph basin removal. Thankfully, mine was discovered in dermatopathology and didn't happen to be in the part they cut for frozen section. So, I guess what I'm saying is that I do understand where you are coming from. 

Now, as to another site close to the original primary, that's something I would be running into the clinic for immediately. No one has explained to me whether recurrance near the primary is most likely another primary or a met, but my derm said that he thinks mine will "come back" in my same arm. I think he said this because my mitotic rate was a 5. I don't want to die from melanoma. I am 47 and I have two children still at home, one is 11. At this point, I think I would accept an offer of limb perfusion if it were made to me, but it won't be. All I want is to be told I don't have cancer anymore, and they won't say that. I hate it that a person can have a negative SN and still have mets and where some here have gone from stage 1 to 4 quickly. 

I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met? 

I know we got off on a bad start Bob, but can I ask you why you chose to wait so many months before deciding to get your new location excised? You can ask for something excised rather than punched or shaved.

With your primary, based on all the information on this site, as well as other sites, doing anything other than excising it and pathology would have been over-treatment.

If your second excision turns out to be another melanoma primary and it is over .5mm and less than 1mm, maybe a SLNB should be offered to you. That might be over-treatment. If it's larger than 1mm, what do you think you will be offered in San Diego? I would guess SLNB and WLE. Is that over-treatment to you for yourself? What if its not a primary, but a met?