Having a hard time understanding how melanoma behaves

(FINALLY! able to log in…sheesh!  Been trying to for over a month!)

Anyhoo, please be vigilant.  What you have described was my scenario to a T.  I went in '06 for a WLE and SNB (came back clear).  I was led to believe they got it all and had CT scans set up for once per year.  November of '10 I felt a lump in my groin.  Scans revealed mel in my lymph nodes and liver and told I was now Stage IV.  Talk about shocked.  I had just had my yearly CT in Sept.  and all was good.  Many many times it never comes back and at times it does.  There must be one little cell too small to see lurking around that decides to set up camp. 

I did not post this to scare you, but to encourage you to stay vigilant.  I was convinced that I had nothing to worry about.

Karin

(FINALLY! able to log in…sheesh!  Been trying to for over a month!)

Anyhoo, please be vigilant.  What you have described was my scenario to a T.  I went in '06 for a WLE and SNB (came back clear).  I was led to believe they got it all and had CT scans set up for once per year.  November of '10 I felt a lump in my groin.  Scans revealed mel in my lymph nodes and liver and told I was now Stage IV.  Talk about shocked.  I had just had my yearly CT in Sept.  and all was good.  Many many times it never comes back and at times it does.  There must be one little cell too small to see lurking around that decides to set up camp. 

I did not post this to scare you, but to encourage you to stay vigilant.  I was convinced that I had nothing to worry about.

Karin

(FINALLY! able to log in…sheesh!  Been trying to for over a month!)

Anyhoo, please be vigilant.  What you have described was my scenario to a T.  I went in '06 for a WLE and SNB (came back clear).  I was led to believe they got it all and had CT scans set up for once per year.  November of '10 I felt a lump in my groin.  Scans revealed mel in my lymph nodes and liver and told I was now Stage IV.  Talk about shocked.  I had just had my yearly CT in Sept.  and all was good.  Many many times it never comes back and at times it does.  There must be one little cell too small to see lurking around that decides to set up camp. 

I did not post this to scare you, but to encourage you to stay vigilant.  I was convinced that I had nothing to worry about.

Karin

As a patient, I think the problem is that both pathologists and radiologists are looking (at the stage before a larger tumor might form) for needles in a haystack. I don't believe the mechanism for metastasis is well understood, but if it involves small numbers of cells initially, that's the worst case of a needle they're trying to find. I don't know how sensitive tissue staining is, nor how often melanoma follows the paths to specific tissue that it could be anticipated to follow.

That certainly doesn't mean there's always something being missed. The statistics speak to that not being the case. Nor that sometimes your immune system doesn't fight off very small instances of melanoma. I've ready lately that they're finding that the small cancers of different types are happening very frequently as an almost normal state, and that a normal immune system usually fights them off before they become anything at all. My oncologist believes many more people have melanoma than know it, and the immune systems of those people are keeping it at bay for many years.

Getting back to needles and haystacks, I asked the MRI tech at my latest scan how far apart the image slices are. The tech said they varied from 3mm (thinnest) to 5mm (widest) slices. My guess would be that such an MRI probably can reveal a 3mm or larger tumor (maybe even smaller, I'm not a radiologist), but at some point in shrinking scale, it's going to be indistinguishable.  So in that case, multiple scans over time serve as another axis to understand whether disease is present.

As a patient, I think the problem is that both pathologists and radiologists are looking (at the stage before a larger tumor might form) for needles in a haystack. I don't believe the mechanism for metastasis is well understood, but if it involves small numbers of cells initially, that's the worst case of a needle they're trying to find. I don't know how sensitive tissue staining is, nor how often melanoma follows the paths to specific tissue that it could be anticipated to follow.

That certainly doesn't mean there's always something being missed. The statistics speak to that not being the case. Nor that sometimes your immune system doesn't fight off very small instances of melanoma. I've ready lately that they're finding that the small cancers of different types are happening very frequently as an almost normal state, and that a normal immune system usually fights them off before they become anything at all. My oncologist believes many more people have melanoma than know it, and the immune systems of those people are keeping it at bay for many years.

Getting back to needles and haystacks, I asked the MRI tech at my latest scan how far apart the image slices are. The tech said they varied from 3mm (thinnest) to 5mm (widest) slices. My guess would be that such an MRI probably can reveal a 3mm or larger tumor (maybe even smaller, I'm not a radiologist), but at some point in shrinking scale, it's going to be indistinguishable.  So in that case, multiple scans over time serve as another axis to understand whether disease is present.

As a patient, I think the problem is that both pathologists and radiologists are looking (at the stage before a larger tumor might form) for needles in a haystack. I don't believe the mechanism for metastasis is well understood, but if it involves small numbers of cells initially, that's the worst case of a needle they're trying to find. I don't know how sensitive tissue staining is, nor how often melanoma follows the paths to specific tissue that it could be anticipated to follow.

That certainly doesn't mean there's always something being missed. The statistics speak to that not being the case. Nor that sometimes your immune system doesn't fight off very small instances of melanoma. I've ready lately that they're finding that the small cancers of different types are happening very frequently as an almost normal state, and that a normal immune system usually fights them off before they become anything at all. My oncologist believes many more people have melanoma than know it, and the immune systems of those people are keeping it at bay for many years.

Getting back to needles and haystacks, I asked the MRI tech at my latest scan how far apart the image slices are. The tech said they varied from 3mm (thinnest) to 5mm (widest) slices. My guess would be that such an MRI probably can reveal a 3mm or larger tumor (maybe even smaller, I'm not a radiologist), but at some point in shrinking scale, it's going to be indistinguishable.  So in that case, multiple scans over time serve as another axis to understand whether disease is present.

"all my lymph nodes will be removed in that area at the same time if they find anything".  Really?  In general, they usually have to do microscopic staining of the lymph nodes to see if there is any melanoma present.  Certainly, if there were obvious signs of melanoma, then removal of the extra nodes can be done at the same time.  But the vast majority of people here have the Sentinel node(s) removed and the WLE.  Then, after the node(s) go through a thorough analysis (paraffin, staining, slicing, analysis), they go back at another time to remove the remaining lymph nodes if the sentinel node was positive.  I find it odd they are planning to do it at the same setting.  Did they mention how the plan to analyze the sentinel node?

The SNB reflects your situation NOW.  It is not a guarantee that there aren't cells "en route".  The SNB is a very accurate test of what is in the lymph nodes at that time, but it's not full proof.   There certainly have been people with a clean SNB who later have had metastases.  It's not always easy to understand why.  Was the sentinel node incorrect?  Was something en route?  Was there cells left at the original site?  All could be possibilities.  The SNB is truly a diagnostic and staging tool and nothing more.   It's not considered therapeutic.  In addition, the WLE is also not a guarantee.  They look for cells within the margins.  But the WLE tissue isn't scrutinized to the same degree as the biopsy.  Just a lot more tissue to look at.  It is possible that margins really weren't achieved and a melanoma cell (they love to travel) was missed and was outside the WLE tissue.   Melanoma margin recommendations used to be MUCH larger.  But after many studies, they have been reduced over time.  However, there obviously is some margin of error and a WLE may leave something behind.

Melanoma is one of those cancers that has a significant tie to the immune system.  It may be that someone's immune system keeps things at bay, but if you have a period of lower immunity, you might be more susceptible to melanoma overriding the immune system.  (This is one reason why melanoma warriors cannot be organ donors.  It has been proven (unfortunately) that a NED individual who donates an organ may actually give the new organ recipient melanoma.  Recipients have to suppress their immune systems to avoid organ rejection and this gives melanoma cells a chance to take over).  There is also the possibility that mets could come from a different and undiscovered primary.  Unlikely, but you can't rule it out. 

There is no exact rhyme and reason with any cancer, and melanoma can be sneakier than most.  The thing is, knowing this changes nothing.  If you end up stage IB with a negative SNB, then monitoring your moles and palpating your lymph node basins will be the standard followup.  Scans won't be done.  Scans are controversial in any case, and haven't been shown to improve overall survival.  Some institutions won't do them for stage III/IV unless there are symptoms.  Others go overboard.  There is no "standard" when it comes to scans, except they're really not done for stage I.  Since scans can't catch microscopic cancer cells, they are of limited benefit especially for early stages.

Hang in there.  Sometimes, doing more "research" only tends to give more anxiety.  (I know this from experience).  When you know your final staging and diagnosis, then you can do research with a goal of finding out more about your exact situation.  Until then, you really might be just scaring yourself needlessly.  Not to minimize what melanoma can do, but researching current treatment options for stage IV doesn't do me a lot of good at stage I.

Best wishes,

Janner

"all my lymph nodes will be removed in that area at the same time if they find anything".  Really?  In general, they usually have to do microscopic staining of the lymph nodes to see if there is any melanoma present.  Certainly, if there were obvious signs of melanoma, then removal of the extra nodes can be done at the same time.  But the vast majority of people here have the Sentinel node(s) removed and the WLE.  Then, after the node(s) go through a thorough analysis (paraffin, staining, slicing, analysis), they go back at another time to remove the remaining lymph nodes if the sentinel node was positive.  I find it odd they are planning to do it at the same setting.  Did they mention how the plan to analyze the sentinel node?

The SNB reflects your situation NOW.  It is not a guarantee that there aren't cells "en route".  The SNB is a very accurate test of what is in the lymph nodes at that time, but it's not full proof.   There certainly have been people with a clean SNB who later have had metastases.  It's not always easy to understand why.  Was the sentinel node incorrect?  Was something en route?  Was there cells left at the original site?  All could be possibilities.  The SNB is truly a diagnostic and staging tool and nothing more.   It's not considered therapeutic.  In addition, the WLE is also not a guarantee.  They look for cells within the margins.  But the WLE tissue isn't scrutinized to the same degree as the biopsy.  Just a lot more tissue to look at.  It is possible that margins really weren't achieved and a melanoma cell (they love to travel) was missed and was outside the WLE tissue.   Melanoma margin recommendations used to be MUCH larger.  But after many studies, they have been reduced over time.  However, there obviously is some margin of error and a WLE may leave something behind.

Melanoma is one of those cancers that has a significant tie to the immune system.  It may be that someone's immune system keeps things at bay, but if you have a period of lower immunity, you might be more susceptible to melanoma overriding the immune system.  (This is one reason why melanoma warriors cannot be organ donors.  It has been proven (unfortunately) that a NED individual who donates an organ may actually give the new organ recipient melanoma.  Recipients have to suppress their immune systems to avoid organ rejection and this gives melanoma cells a chance to take over).  There is also the possibility that mets could come from a different and undiscovered primary.  Unlikely, but you can't rule it out. 

There is no exact rhyme and reason with any cancer, and melanoma can be sneakier than most.  The thing is, knowing this changes nothing.  If you end up stage IB with a negative SNB, then monitoring your moles and palpating your lymph node basins will be the standard followup.  Scans won't be done.  Scans are controversial in any case, and haven't been shown to improve overall survival.  Some institutions won't do them for stage III/IV unless there are symptoms.  Others go overboard.  There is no "standard" when it comes to scans, except they're really not done for stage I.  Since scans can't catch microscopic cancer cells, they are of limited benefit especially for early stages.

Hang in there.  Sometimes, doing more "research" only tends to give more anxiety.  (I know this from experience).  When you know your final staging and diagnosis, then you can do research with a goal of finding out more about your exact situation.  Until then, you really might be just scaring yourself needlessly.  Not to minimize what melanoma can do, but researching current treatment options for stage IV doesn't do me a lot of good at stage I.

Best wishes,

Janner

"all my lymph nodes will be removed in that area at the same time if they find anything".  Really?  In general, they usually have to do microscopic staining of the lymph nodes to see if there is any melanoma present.  Certainly, if there were obvious signs of melanoma, then removal of the extra nodes can be done at the same time.  But the vast majority of people here have the Sentinel node(s) removed and the WLE.  Then, after the node(s) go through a thorough analysis (paraffin, staining, slicing, analysis), they go back at another time to remove the remaining lymph nodes if the sentinel node was positive.  I find it odd they are planning to do it at the same setting.  Did they mention how the plan to analyze the sentinel node?

The SNB reflects your situation NOW.  It is not a guarantee that there aren't cells "en route".  The SNB is a very accurate test of what is in the lymph nodes at that time, but it's not full proof.   There certainly have been people with a clean SNB who later have had metastases.  It's not always easy to understand why.  Was the sentinel node incorrect?  Was something en route?  Was there cells left at the original site?  All could be possibilities.  The SNB is truly a diagnostic and staging tool and nothing more.   It's not considered therapeutic.  In addition, the WLE is also not a guarantee.  They look for cells within the margins.  But the WLE tissue isn't scrutinized to the same degree as the biopsy.  Just a lot more tissue to look at.  It is possible that margins really weren't achieved and a melanoma cell (they love to travel) was missed and was outside the WLE tissue.   Melanoma margin recommendations used to be MUCH larger.  But after many studies, they have been reduced over time.  However, there obviously is some margin of error and a WLE may leave something behind.

Melanoma is one of those cancers that has a significant tie to the immune system.  It may be that someone's immune system keeps things at bay, but if you have a period of lower immunity, you might be more susceptible to melanoma overriding the immune system.  (This is one reason why melanoma warriors cannot be organ donors.  It has been proven (unfortunately) that a NED individual who donates an organ may actually give the new organ recipient melanoma.  Recipients have to suppress their immune systems to avoid organ rejection and this gives melanoma cells a chance to take over).  There is also the possibility that mets could come from a different and undiscovered primary.  Unlikely, but you can't rule it out. 

There is no exact rhyme and reason with any cancer, and melanoma can be sneakier than most.  The thing is, knowing this changes nothing.  If you end up stage IB with a negative SNB, then monitoring your moles and palpating your lymph node basins will be the standard followup.  Scans won't be done.  Scans are controversial in any case, and haven't been shown to improve overall survival.  Some institutions won't do them for stage III/IV unless there are symptoms.  Others go overboard.  There is no "standard" when it comes to scans, except they're really not done for stage I.  Since scans can't catch microscopic cancer cells, they are of limited benefit especially for early stages.

Hang in there.  Sometimes, doing more "research" only tends to give more anxiety.  (I know this from experience).  When you know your final staging and diagnosis, then you can do research with a goal of finding out more about your exact situation.  Until then, you really might be just scaring yourself needlessly.  Not to minimize what melanoma can do, but researching current treatment options for stage IV doesn't do me a lot of good at stage I.

Best wishes,

Janner

I feel that the one certain thing about melanoma is its unpredictability. As you may
have read, researchers are still trying to fully understand how melanoma behaves.

Although it is very difficult to predict what melanoma will do in any individual case,
there are a number of things that influence prognosis. These include:

1. Depth of the primary lesion. If the depth of the lesion is not too great, there is a
good chance that melanoma won't spread beyond the local lymph nodes in a short time.
However, if it is over 4mm there is a high probability that cancer cells will have
entered the bloodstream. This will then allow metastases to occur at distant sites such
as in internal organs.

2. Type of melanoma. It seems that some types of melanoma are more aggressive than
others. For example, primary dermal melanoma (see:
http://www.ncbi.nlm.nih.gov/pubmed/18209168) appears to have a better prognosis than
nodular melanoma.

3. The immune response of the individual patient.

4. The ability of melanoma cells to form tumours by evading the effects of the immune
system.

5. Health and genetics of the patient.

6. The ability of melanoma cells to actively overcome the effects of treatments such as
chemo, or early BRAF inhibitors.

Research continues to advance rapidly, and new treatment approaches continue to be
developed. The newest drugs are becoming available through clinical trials, and are
therefore worth considering.

Hope this helps

Frank from Australia

I feel that the one certain thing about melanoma is its unpredictability. As you may
have read, researchers are still trying to fully understand how melanoma behaves.

Although it is very difficult to predict what melanoma will do in any individual case,
there are a number of things that influence prognosis. These include:

1. Depth of the primary lesion. If the depth of the lesion is not too great, there is a
good chance that melanoma won't spread beyond the local lymph nodes in a short time.
However, if it is over 4mm there is a high probability that cancer cells will have
entered the bloodstream. This will then allow metastases to occur at distant sites such
as in internal organs.

2. Type of melanoma. It seems that some types of melanoma are more aggressive than
others. For example, primary dermal melanoma (see:
http://www.ncbi.nlm.nih.gov/pubmed/18209168) appears to have a better prognosis than
nodular melanoma.

3. The immune response of the individual patient.

4. The ability of melanoma cells to form tumours by evading the effects of the immune
system.

5. Health and genetics of the patient.

6. The ability of melanoma cells to actively overcome the effects of treatments such as
chemo, or early BRAF inhibitors.

Research continues to advance rapidly, and new treatment approaches continue to be
developed. The newest drugs are becoming available through clinical trials, and are
therefore worth considering.

Hope this helps

Frank from Australia

I feel that the one certain thing about melanoma is its unpredictability. As you may
have read, researchers are still trying to fully understand how melanoma behaves.

Although it is very difficult to predict what melanoma will do in any individual case,
there are a number of things that influence prognosis. These include:

1. Depth of the primary lesion. If the depth of the lesion is not too great, there is a
good chance that melanoma won't spread beyond the local lymph nodes in a short time.
However, if it is over 4mm there is a high probability that cancer cells will have
entered the bloodstream. This will then allow metastases to occur at distant sites such
as in internal organs.

2. Type of melanoma. It seems that some types of melanoma are more aggressive than
others. For example, primary dermal melanoma (see:
http://www.ncbi.nlm.nih.gov/pubmed/18209168) appears to have a better prognosis than
nodular melanoma.

3. The immune response of the individual patient.

4. The ability of melanoma cells to form tumours by evading the effects of the immune
system.

5. Health and genetics of the patient.

6. The ability of melanoma cells to actively overcome the effects of treatments such as
chemo, or early BRAF inhibitors.

Research continues to advance rapidly, and new treatment approaches continue to be
developed. The newest drugs are becoming available through clinical trials, and are
therefore worth considering.

Hope this helps

Frank from Australia