It may be back!

Very sorry about these new masses. What was the depth of your primary?

Very sorry about these new masses. What was the depth of your primary?

Very sorry about these new masses. What was the depth of your primary?

Sorry you're going through this.  That's why I don't understand why Stage I'ers are told "don't worry" and "low risk" and some don't get chest xrays cause they are told it's not necessary.  This indicates otherwise.

What is the official clinical standard protocol for Stage I follow up?  What follow up and for how long after diagnosis?

What is the official clinical standard protocol for Stage I follow up?  What follow up and for how long after diagnosis?

What is the official clinical standard protocol for Stage I follow up?  What follow up and for how long after diagnosis?

I don't know if this is "official", but my husband's dermatologist said skin checks every 3 months for the first year, then every six months for the next four years, then once a year.  No scans, xrays, or any other diagnostic tests.

Susan

I don't know if this is "official", but my husband's dermatologist said skin checks every 3 months for the first year, then every six months for the next four years, then once a year.  No scans, xrays, or any other diagnostic tests.

Susan

For all of the Stage I'ers out there (and please don't take this the wrong way casagrayson), but if I had followed that Stage I protocal (dermatologist)–I'd be dead right now.  Later stage melanoma doesn't always manifest itself as a new mole or lump.  In my view, you should insist on being followed by a melanoma specialist, insist on blood tests (testing LDH) and insist on chest x-rays.  I did all of this–and I still didn't discover that I was Stage IV until late in the game.  There's recent research (summer 2013) showing that the recurrence rate for Stage I at or after 10 years is ~10%.  You can find it via Google search.

For all of the Stage I'ers out there (and please don't take this the wrong way casagrayson), but if I had followed that Stage I protocal (dermatologist)–I'd be dead right now.  Later stage melanoma doesn't always manifest itself as a new mole or lump.  In my view, you should insist on being followed by a melanoma specialist, insist on blood tests (testing LDH) and insist on chest x-rays.  I did all of this–and I still didn't discover that I was Stage IV until late in the game.  There's recent research (summer 2013) showing that the recurrence rate for Stage I at or after 10 years is ~10%.  You can find it via Google search.

I'm confused about your initial diagnosis, Mat.  Profile says up to 1mm, but also says PET scan done.  I almost never heard of a PET scan being done for a lesion less than 1 mm upon diagnosis. 

I'm confused about your initial diagnosis, Mat.  Profile says up to 1mm, but also says PET scan done.  I almost never heard of a PET scan being done for a lesion less than 1 mm upon diagnosis. 

I'm confused about your initial diagnosis, Mat.  Profile says up to 1mm, but also says PET scan done.  I almost never heard of a PET scan being done for a lesion less than 1 mm upon diagnosis. 

.5mm with signs of regression to .7mm, Clark's level II.  While it was 10 years ago, my recollection is that my doctor ordered the PET because I had residual thymus tissue (which turned out to be nothing).

That's crazy.  There was another study by Taran and Heenan that said level II pretty much never spreads.  So, all these studies contradict each other.  Also, I have heard many say that pathology results sometimes vary too, so it's hard to even rely on that without getting more than one opinion. 

That's crazy.  There was another study by Taran and Heenan that said level II pretty much never spreads.  So, all these studies contradict each other.  Also, I have heard many say that pathology results sometimes vary too, so it's hard to even rely on that without getting more than one opinion. 

That's crazy.  There was another study by Taran and Heenan that said level II pretty much never spreads.  So, all these studies contradict each other.  Also, I have heard many say that pathology results sometimes vary too, so it's hard to even rely on that without getting more than one opinion. 

.5mm with signs of regression to .7mm, Clark's level II.  While it was 10 years ago, my recollection is that my doctor ordered the PET because I had residual thymus tissue (which turned out to be nothing).

.5mm with signs of regression to .7mm, Clark's level II.  While it was 10 years ago, my recollection is that my doctor ordered the PET because I had residual thymus tissue (which turned out to be nothing).

this study I think you are talking about http://www.facs.org/news/jacs/melanoma0613.html

this study I think you are talking about http://www.facs.org/news/jacs/melanoma0613.html

this study I think you are talking about http://www.facs.org/news/jacs/melanoma0613.html

Yes, that's it.  Every Stage I'er should read.

They are told to stay off MPIP so many probably won't read it

They are told to stay off MPIP so many probably won't read it

They are told to stay off MPIP so many probably won't read it

What do you mean "told to stay off MPIP".  Why?

Matt, thanks for pointing out the article.  I don't really feel comfortable with my husband just seeing a dermatologist — especially now that he's had a second primary.  But the docs all say "it's gone; nothing to worry about".  🙁

What do you mean "told to stay off MPIP".  Why?

Matt, thanks for pointing out the article.  I don't really feel comfortable with my husband just seeing a dermatologist — especially now that he's had a second primary.  But the docs all say "it's gone; nothing to worry about".  🙁

Early stagers are advised, I believe for psychological/mental health reasons, to stay away from internet sites where they will be reading about late stage patients.

Early stagers are advised, I believe for psychological/mental health reasons, to stay away from internet sites where they will be reading about late stage patients.

That's just not true.  For people with high anxiety, staying on a BB that is full of late stage people fighting their battles makes it seem that they inevitabely will be in that category, too.  Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis.  Despite what that article says, MOST early stagers will never see melanoma again.  This board is mostly comprised of two camps – the newly diagnosed looking for info – and the late stagers fighting their battles.  It is not representative of the vast majority of early stagers that move on and NEVER come back to a BB like this one.  This board does NOT reflect the true prognosis for most early stagers.  My motto with the early stagers is "Be vigilant, not paranoid".  Most things aren't melanoma.  But you should always pay attention to things that are new and different for you.  Some bulletin boards have separate camps for early stagers vs late stagers – and that concept was vetoed here.  Late stagers can offer advice to early stagers and visa versa.  Prognoses may be different, but everyone can benefit from all the groups being together.  But for those with extreme high anxiety, this may not be the best place to hang out.

Janner

Stage I since 1992, 3 MM primaries

That's just not true.  For people with high anxiety, staying on a BB that is full of late stage people fighting their battles makes it seem that they inevitabely will be in that category, too.  Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis.  Despite what that article says, MOST early stagers will never see melanoma again.  This board is mostly comprised of two camps – the newly diagnosed looking for info – and the late stagers fighting their battles.  It is not representative of the vast majority of early stagers that move on and NEVER come back to a BB like this one.  This board does NOT reflect the true prognosis for most early stagers.  My motto with the early stagers is "Be vigilant, not paranoid".  Most things aren't melanoma.  But you should always pay attention to things that are new and different for you.  Some bulletin boards have separate camps for early stagers vs late stagers – and that concept was vetoed here.  Late stagers can offer advice to early stagers and visa versa.  Prognoses may be different, but everyone can benefit from all the groups being together.  But for those with extreme high anxiety, this may not be the best place to hang out.

Janner

Stage I since 1992, 3 MM primaries

That's just not true.  For people with high anxiety, staying on a BB that is full of late stage people fighting their battles makes it seem that they inevitabely will be in that category, too.  Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis.  Despite what that article says, MOST early stagers will never see melanoma again.  This board is mostly comprised of two camps – the newly diagnosed looking for info – and the late stagers fighting their battles.  It is not representative of the vast majority of early stagers that move on and NEVER come back to a BB like this one.  This board does NOT reflect the true prognosis for most early stagers.  My motto with the early stagers is "Be vigilant, not paranoid".  Most things aren't melanoma.  But you should always pay attention to things that are new and different for you.  Some bulletin boards have separate camps for early stagers vs late stagers – and that concept was vetoed here.  Late stagers can offer advice to early stagers and visa versa.  Prognoses may be different, but everyone can benefit from all the groups being together.  But for those with extreme high anxiety, this may not be the best place to hang out.

Janner

Stage I since 1992, 3 MM primaries

" Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis. "

yes, that's all I was saying, that's exactly what I was saying, when I said they are advised not to hang around on the BB.  that's all I meant.  maybe I didn't say it right.

" Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis. "

yes, that's all I was saying, that's exactly what I was saying, when I said they are advised not to hang around on the BB.  that's all I meant.  maybe I didn't say it right.

" Most newly diagnosed early stagers do not need to add to their anxiety – they do that fine all by themselves.  Advising them to stay off a board like this is a way to try and put things in perspective for those that struggle with their diagnosis. "

yes, that's all I was saying, that's exactly what I was saying, when I said they are advised not to hang around on the BB.  that's all I meant.  maybe I didn't say it right.

Early stagers are advised, I believe for psychological/mental health reasons, to stay away from internet sites where they will be reading about late stage patients.

What do you mean "told to stay off MPIP".  Why?

Matt, thanks for pointing out the article.  I don't really feel comfortable with my husband just seeing a dermatologist — especially now that he's had a second primary.  But the docs all say "it's gone; nothing to worry about".  🙁

Yes, that's it.  Every Stage I'er should read.

Yes, that's it.  Every Stage I'er should read.

For all of the Stage I'ers out there (and please don't take this the wrong way casagrayson), but if I had followed that Stage I protocal (dermatologist)–I'd be dead right now.  Later stage melanoma doesn't always manifest itself as a new mole or lump.  In my view, you should insist on being followed by a melanoma specialist, insist on blood tests (testing LDH) and insist on chest x-rays.  I did all of this–and I still didn't discover that I was Stage IV until late in the game.  There's recent research (summer 2013) showing that the recurrence rate for Stage I at or after 10 years is ~10%.  You can find it via Google search.

Before posting this link and scare all Stage1 patients, you first have to read the full text of the article, which I did. It seems they included patient not only with "thin" melanoma but with much deaper depth (mean of 1.25 mm in those with recurrence) Here are some "copy and paste" from the paper:

A mean is an average, not a median–so I'm not sure how you concluded that "most" weren't thin.  In any case, my aim isn't to "scare" anyone.  Rather, it is to encourage Stage I'ers to be vigilant.  To be sure, "most" won't have a recurrence.  But (and I'm speaking from personal experience here), it really sucks to be among those that do.  And the only thing that would make it "suck" worse is to have found out too late, e.g., by only seeing a dermatologist.

A mean is an average, not a median–so I'm not sure how you concluded that "most" weren't thin.  In any case, my aim isn't to "scare" anyone.  Rather, it is to encourage Stage I'ers to be vigilant.  To be sure, "most" won't have a recurrence.  But (and I'm speaking from personal experience here), it really sucks to be among those that do.  And the only thing that would make it "suck" worse is to have found out too late, e.g., by only seeing a dermatologist.

A mean is an average, not a median–so I'm not sure how you concluded that "most" weren't thin.  In any case, my aim isn't to "scare" anyone.  Rather, it is to encourage Stage I'ers to be vigilant.  To be sure, "most" won't have a recurrence.  But (and I'm speaking from personal experience here), it really sucks to be among those that do.  And the only thing that would make it "suck" worse is to have found out too late, e.g., by only seeing a dermatologist.

So what do you suggest?  Many melanoma specialists (oncologists) won't even see early stagers.  Many insurance companies will not pay for scans for early stagers.  (Scans haven't been shown to increase survival rates anyway).  Most recurrences happen in the lymph nodes, not in the chest/organs so even a chest x-ray isn't all that helpful.  Blood work again is iffy at best because that implies organ damage and it's not any type of fullproof indicator.  When 90+% of early stagers never have recurrences and <10% do, what do you suggest and how do you justify it?  I'm all for being vigilant – learning to palpate the nearest lymph node basin and watching skin for changes.  I'm all about reporting to a doc anything that doesn't seem "normal" for you.  But what are you recommending for say – a stage IA person?  Stage IB < 1mm?  Stage 1B > 1mm might have seen an oncologist given the depth probably justified a SNB.  What do you think is realistic?

So what do you suggest?  Many melanoma specialists (oncologists) won't even see early stagers.  Many insurance companies will not pay for scans for early stagers.  (Scans haven't been shown to increase survival rates anyway).  Most recurrences happen in the lymph nodes, not in the chest/organs so even a chest x-ray isn't all that helpful.  Blood work again is iffy at best because that implies organ damage and it's not any type of fullproof indicator.  When 90+% of early stagers never have recurrences and <10% do, what do you suggest and how do you justify it?  I'm all for being vigilant – learning to palpate the nearest lymph node basin and watching skin for changes.  I'm all about reporting to a doc anything that doesn't seem "normal" for you.  But what are you recommending for say – a stage IA person?  Stage IB < 1mm?  Stage 1B > 1mm might have seen an oncologist given the depth probably justified a SNB.  What do you think is realistic?

It doesn't seem like there's a great answer here.  If you're that <10%, then it's almost like you're rolling the dice and hoping you get lucky that it isn't going to be you.  But, then again, what is realistic to do?  They won't scan you, there's no reliable blood test, etc…

It doesn't seem like there's a great answer here.  If you're that <10%, then it's almost like you're rolling the dice and hoping you get lucky that it isn't going to be you.  But, then again, what is realistic to do?  They won't scan you, there's no reliable blood test, etc…

It doesn't seem like there's a great answer here.  If you're that <10%, then it's almost like you're rolling the dice and hoping you get lucky that it isn't going to be you.  But, then again, what is realistic to do?  They won't scan you, there's no reliable blood test, etc…

Janner, your views are practical and grounded.  However, my own personal experience has been different than yours. Neither of the melanoma specialists I've seen turn away Stage I patients, etc.  And, in my own situation, a heightened LDH level was "the" symptom that was used to justify scans (which lead to my Stage IV diagnosis).  To be sure, I am an outlier and my experience is not representative of what you or other Stage I patients are likely to experience.  I have nothing more to add to this discussion.

Janner, your views are practical and grounded.  However, my own personal experience has been different than yours. Neither of the melanoma specialists I've seen turn away Stage I patients, etc.  And, in my own situation, a heightened LDH level was "the" symptom that was used to justify scans (which lead to my Stage IV diagnosis).  To be sure, I am an outlier and my experience is not representative of what you or other Stage I patients are likely to experience.  I have nothing more to add to this discussion.

Janner, your views are practical and grounded.  However, my own personal experience has been different than yours. Neither of the melanoma specialists I've seen turn away Stage I patients, etc.  And, in my own situation, a heightened LDH level was "the" symptom that was used to justify scans (which lead to my Stage IV diagnosis).  To be sure, I am an outlier and my experience is not representative of what you or other Stage I patients are likely to experience.  I have nothing more to add to this discussion.

So what do you suggest?  Many melanoma specialists (oncologists) won't even see early stagers.  Many insurance companies will not pay for scans for early stagers.  (Scans haven't been shown to increase survival rates anyway).  Most recurrences happen in the lymph nodes, not in the chest/organs so even a chest x-ray isn't all that helpful.  Blood work again is iffy at best because that implies organ damage and it's not any type of fullproof indicator.  When 90+% of early stagers never have recurrences and <10% do, what do you suggest and how do you justify it?  I'm all for being vigilant – learning to palpate the nearest lymph node basin and watching skin for changes.  I'm all about reporting to a doc anything that doesn't seem "normal" for you.  But what are you recommending for say – a stage IA person?  Stage IB < 1mm?  Stage 1B > 1mm might have seen an oncologist given the depth probably justified a SNB.  What do you think is realistic?

Yes, reading the full text article rather than the press release  is much more informative. The full text is here: http://www.journalacs.org/article/S1072-7515(13)00225-1/fulltext

But even the full text is confusing because the authors are looking at melanoma recurrence backwards from the way we usually look at it. These authors are asking the question: "What are the characteristics of melanomas that go dormant for 10 years or more?"  We usually ask the question: "What is the chance of my melanoma recurring?" which is a very different question.

Among people with Stage I or Stage II melanoma with negative lymph nodes at diagnosis, 8.9% had a recurrence within 3 years. Note that this is a combination of Stage I AND Stage II patients. The recurrences were mainly "local" (i.e., confined to the site of the original lesion and/or the draining lymph nodes).  Among the same group of patients, 3.3% developed a recurrence 10 years after initial diagnosis and a few more occur in each succeeding year. These recurrences were more often found at sites distant from the original lesion. 

Older patients (>54), thicker Breslow depth (>3.1mm), and ulcerated lesions are associated with greater risk of recurrence within 3 years. Even when late recurrence did happen (> 10 years after diagnosis)  these patients had a greater chance of long-term survival than did those with early recurrences. 

The authors conclude that: "When can a patient be considered “cured”? It appears the risk of melanoma recurrence is never completely gone. Although late recurrence risk is probably low enough to preclude the need for invasive or expensive monitoring beyond 10 years, patients should be aware of the chance that new symptoms or physical findings could be related to their earlier melanoma diagnosis."

Actually, I think we already knew most of this.   

Yes, reading the full text article rather than the press release  is much more informative. The full text is here: http://www.journalacs.org/article/S1072-7515(13)00225-1/fulltext

But even the full text is confusing because the authors are looking at melanoma recurrence backwards from the way we usually look at it. These authors are asking the question: "What are the characteristics of melanomas that go dormant for 10 years or more?"  We usually ask the question: "What is the chance of my melanoma recurring?" which is a very different question.

Among people with Stage I or Stage II melanoma with negative lymph nodes at diagnosis, 8.9% had a recurrence within 3 years. Note that this is a combination of Stage I AND Stage II patients. The recurrences were mainly "local" (i.e., confined to the site of the original lesion and/or the draining lymph nodes).  Among the same group of patients, 3.3% developed a recurrence 10 years after initial diagnosis and a few more occur in each succeeding year. These recurrences were more often found at sites distant from the original lesion. 

Older patients (>54), thicker Breslow depth (>3.1mm), and ulcerated lesions are associated with greater risk of recurrence within 3 years. Even when late recurrence did happen (> 10 years after diagnosis)  these patients had a greater chance of long-term survival than did those with early recurrences. 

The authors conclude that: "When can a patient be considered “cured”? It appears the risk of melanoma recurrence is never completely gone. Although late recurrence risk is probably low enough to preclude the need for invasive or expensive monitoring beyond 10 years, patients should be aware of the chance that new symptoms or physical findings could be related to their earlier melanoma diagnosis."

Actually, I think we already knew most of this.   

Yes, reading the full text article rather than the press release  is much more informative. The full text is here: http://www.journalacs.org/article/S1072-7515(13)00225-1/fulltext

But even the full text is confusing because the authors are looking at melanoma recurrence backwards from the way we usually look at it. These authors are asking the question: "What are the characteristics of melanomas that go dormant for 10 years or more?"  We usually ask the question: "What is the chance of my melanoma recurring?" which is a very different question.

Among people with Stage I or Stage II melanoma with negative lymph nodes at diagnosis, 8.9% had a recurrence within 3 years. Note that this is a combination of Stage I AND Stage II patients. The recurrences were mainly "local" (i.e., confined to the site of the original lesion and/or the draining lymph nodes).  Among the same group of patients, 3.3% developed a recurrence 10 years after initial diagnosis and a few more occur in each succeeding year. These recurrences were more often found at sites distant from the original lesion. 

Older patients (>54), thicker Breslow depth (>3.1mm), and ulcerated lesions are associated with greater risk of recurrence within 3 years. Even when late recurrence did happen (> 10 years after diagnosis)  these patients had a greater chance of long-term survival than did those with early recurrences. 

The authors conclude that: "When can a patient be considered “cured”? It appears the risk of melanoma recurrence is never completely gone. Although late recurrence risk is probably low enough to preclude the need for invasive or expensive monitoring beyond 10 years, patients should be aware of the chance that new symptoms or physical findings could be related to their earlier melanoma diagnosis."

Actually, I think we already knew most of this.   

Before posting this link and scare all Stage1 patients, you first have to read the full text of the article, which I did. It seems they included patient not only with "thin" melanoma but with much deaper depth (mean of 1.25 mm in those with recurrence) Here are some "copy and paste" from the paper:

Before posting this link and scare all Stage1 patients, you first have to read the full text of the article, which I did. It seems they included patient not only with "thin" melanoma but with much deaper depth (mean of 1.25 mm in those with recurrence) Here are some "copy and paste" from the paper:

I don't know if this is "official", but my husband's dermatologist said skin checks every 3 months for the first year, then every six months for the next four years, then once a year.  No scans, xrays, or any other diagnostic tests.

Susan

Sorry you're going through this.  That's why I don't understand why Stage I'ers are told "don't worry" and "low risk" and some don't get chest xrays cause they are told it's not necessary.  This indicates otherwise.

Sorry you're going through this.  That's why I don't understand why Stage I'ers are told "don't worry" and "low risk" and some don't get chest xrays cause they are told it's not necessary.  This indicates otherwise.