Stage Diagnosing From A Pathology Report From A Biopsy???

Well I'm absolutely not a Doctor and there are a lot of people here who probably know a lot more.

But like you i started learning upon diagnosis.

To my knowledge I thought they could anly actually stage you I or II from a melanoma pathology report as they have not biopsied any regional lymph nodes for stage III or had any scans for distant organs stage IV.

Now I will say they could assume by size that it is going to be the worst.

Did you get a copy of the pathology report…there should be a place on there where it states Clinical Stage: etc etc etc.

Well I'm absolutely not a Doctor and there are a lot of people here who probably know a lot more.

But like you i started learning upon diagnosis.

To my knowledge I thought they could anly actually stage you I or II from a melanoma pathology report as they have not biopsied any regional lymph nodes for stage III or had any scans for distant organs stage IV.

Now I will say they could assume by size that it is going to be the worst.

Did you get a copy of the pathology report…there should be a place on there where it states Clinical Stage: etc etc etc.

Well I'm absolutely not a Doctor and there are a lot of people here who probably know a lot more.

But like you i started learning upon diagnosis.

To my knowledge I thought they could anly actually stage you I or II from a melanoma pathology report as they have not biopsied any regional lymph nodes for stage III or had any scans for distant organs stage IV.

Now I will say they could assume by size that it is going to be the worst.

Did you get a copy of the pathology report…there should be a place on there where it states Clinical Stage: etc etc etc.

You cannot be diagnosed Stage IV unless there is confirmed metastasis to distant organs.   If you have not had any CT/MRI scans yet, there is no reason for such a diagnosis.   Are you confusing this with LEVEL 4? (a completely different issue).  Are you sure about the dimensions of your tumor?  Perhaps you are confusing inches with milimeters?  3 inches seems a huge depth to biopsy – a major surgery, not a simple skin biopsy.  It's good your dermatologist set you up with an oncologist at Hopkins.  It was stupid of your Dr. to say you are "very likely" to die from this.  Get rid of him, the sooner the better.

Best wishes,

Harry

You cannot be diagnosed Stage IV unless there is confirmed metastasis to distant organs.   If you have not had any CT/MRI scans yet, there is no reason for such a diagnosis.   Are you confusing this with LEVEL 4? (a completely different issue).  Are you sure about the dimensions of your tumor?  Perhaps you are confusing inches with milimeters?  3 inches seems a huge depth to biopsy – a major surgery, not a simple skin biopsy.  It's good your dermatologist set you up with an oncologist at Hopkins.  It was stupid of your Dr. to say you are "very likely" to die from this.  Get rid of him, the sooner the better.

Best wishes,

Harry

You cannot be diagnosed Stage IV unless there is confirmed metastasis to distant organs.   If you have not had any CT/MRI scans yet, there is no reason for such a diagnosis.   Are you confusing this with LEVEL 4? (a completely different issue).  Are you sure about the dimensions of your tumor?  Perhaps you are confusing inches with milimeters?  3 inches seems a huge depth to biopsy – a major surgery, not a simple skin biopsy.  It's good your dermatologist set you up with an oncologist at Hopkins.  It was stupid of your Dr. to say you are "very likely" to die from this.  Get rid of him, the sooner the better.

Best wishes,

Harry

You (and Harry from Fair Oaks) are correct– in order to be diagnosed with Stage IV melanoma you have to have some type of imaging study that reveals tumors in areas other than your foot or its associated lymph nodes. For various reasons, MRIs are usually used for the brain, CT scans for your head/neck/trunk, and PET scans for your limbs. Since your doctor scared you so badly (with or without reason), why don't you get at least a CT scan in your home town right now? Then you can bring those scan results (a CD containing the images plus the written report) with you to Johns Hopkins. 

As for the foot surgery, you might want to think about that before agreeing. It sounds like the foot surgery will be major and might require a skin graft, bandages, a long recovery where it will be difficult for you to walk, and perhaps some physical therapy. Meanwhile, if you really are Stage IV with mets in your organs, what would be the point of only removing the tumor on your foot? You would still need some type of treatment, probably some systemic treatment, for those tumors. If the systemic treatment works, I suspect that it will take care of the foot tumor as well as the internal tumors. 

So you might want to wait until you get your imaging results before deciding whether or not to have the foot surgery. That's another good reason to get a CT scan now rather than waiting until you get to JH. The scan results will help you decide about the foot. 

The other thing you might do ASAP is get your biopsy tissue analyzed for the BRAF and c-KIT mutations. That can take a couple of weeks and the results may be important for your future treatment decisions. 

You (and Harry from Fair Oaks) are correct– in order to be diagnosed with Stage IV melanoma you have to have some type of imaging study that reveals tumors in areas other than your foot or its associated lymph nodes. For various reasons, MRIs are usually used for the brain, CT scans for your head/neck/trunk, and PET scans for your limbs. Since your doctor scared you so badly (with or without reason), why don't you get at least a CT scan in your home town right now? Then you can bring those scan results (a CD containing the images plus the written report) with you to Johns Hopkins. 

As for the foot surgery, you might want to think about that before agreeing. It sounds like the foot surgery will be major and might require a skin graft, bandages, a long recovery where it will be difficult for you to walk, and perhaps some physical therapy. Meanwhile, if you really are Stage IV with mets in your organs, what would be the point of only removing the tumor on your foot? You would still need some type of treatment, probably some systemic treatment, for those tumors. If the systemic treatment works, I suspect that it will take care of the foot tumor as well as the internal tumors. 

So you might want to wait until you get your imaging results before deciding whether or not to have the foot surgery. That's another good reason to get a CT scan now rather than waiting until you get to JH. The scan results will help you decide about the foot. 

The other thing you might do ASAP is get your biopsy tissue analyzed for the BRAF and c-KIT mutations. That can take a couple of weeks and the results may be important for your future treatment decisions. 

You (and Harry from Fair Oaks) are correct– in order to be diagnosed with Stage IV melanoma you have to have some type of imaging study that reveals tumors in areas other than your foot or its associated lymph nodes. For various reasons, MRIs are usually used for the brain, CT scans for your head/neck/trunk, and PET scans for your limbs. Since your doctor scared you so badly (with or without reason), why don't you get at least a CT scan in your home town right now? Then you can bring those scan results (a CD containing the images plus the written report) with you to Johns Hopkins. 

As for the foot surgery, you might want to think about that before agreeing. It sounds like the foot surgery will be major and might require a skin graft, bandages, a long recovery where it will be difficult for you to walk, and perhaps some physical therapy. Meanwhile, if you really are Stage IV with mets in your organs, what would be the point of only removing the tumor on your foot? You would still need some type of treatment, probably some systemic treatment, for those tumors. If the systemic treatment works, I suspect that it will take care of the foot tumor as well as the internal tumors. 

So you might want to wait until you get your imaging results before deciding whether or not to have the foot surgery. That's another good reason to get a CT scan now rather than waiting until you get to JH. The scan results will help you decide about the foot. 

The other thing you might do ASAP is get your biopsy tissue analyzed for the BRAF and c-KIT mutations. That can take a couple of weeks and the results may be important for your future treatment decisions. 

Hi Alana, so sorry you've had to join us here. You'll usually find knowledgeable people here who are willing to share their expertise and help you cope as best they can. It may take a day or two to get responses from the people with the most knowledge. (One of them is POW, who has already responded.)

I have some somewhat contrary advice about the scans. My husband has had them done here in DC at two different hospitals as well as at Hopkins. In my opinion Hopkins is the best – and even if you have to wait a week, I think it's worth the wait. If you have the scans done locally this week, they won't want to repeat them at Hopkins next week. But perhaps if you call the oncologist's office at Hopkins they will be able to schedule you to have scans done June 4. I know it's not that far to Baltimore, but you will want to have them done as quickly as possible so they can figure out what you're dealing with.

My husband was also diagnosed Stage 4 in the pathology report, but now the two oncologists we have consulted at Hopkins  (Dr. Sharfman and Dr. Lipson, both melanoma specialists) have staged him at 2B. Sometimes the pathologist doesn't get it right, so you are not off base to question. However, the depth of the lesion makes it high risk, particularly coupled with the high mitotic rate. My guess is that they will want to remove more tissue to try to get clear margins, and perhaps also do a sentinel node biopsy – though I'm not sure how the position on your ankle affects any of this.

So – my advice is, hang on for now. Do what you can to deal with your anxiety – do you practice yoga or another discipline like it? Tough it out until you are able to get more accurate information and meet with the experts who can help you figure out what's going on.

Feel free to be in touch with me by using the Contact tab on my profile page if you want to communicate off-list.

Good luck!

Hazel

Hi Alana, so sorry you've had to join us here. You'll usually find knowledgeable people here who are willing to share their expertise and help you cope as best they can. It may take a day or two to get responses from the people with the most knowledge. (One of them is POW, who has already responded.)

I have some somewhat contrary advice about the scans. My husband has had them done here in DC at two different hospitals as well as at Hopkins. In my opinion Hopkins is the best – and even if you have to wait a week, I think it's worth the wait. If you have the scans done locally this week, they won't want to repeat them at Hopkins next week. But perhaps if you call the oncologist's office at Hopkins they will be able to schedule you to have scans done June 4. I know it's not that far to Baltimore, but you will want to have them done as quickly as possible so they can figure out what you're dealing with.

My husband was also diagnosed Stage 4 in the pathology report, but now the two oncologists we have consulted at Hopkins  (Dr. Sharfman and Dr. Lipson, both melanoma specialists) have staged him at 2B. Sometimes the pathologist doesn't get it right, so you are not off base to question. However, the depth of the lesion makes it high risk, particularly coupled with the high mitotic rate. My guess is that they will want to remove more tissue to try to get clear margins, and perhaps also do a sentinel node biopsy – though I'm not sure how the position on your ankle affects any of this.

So – my advice is, hang on for now. Do what you can to deal with your anxiety – do you practice yoga or another discipline like it? Tough it out until you are able to get more accurate information and meet with the experts who can help you figure out what's going on.

Feel free to be in touch with me by using the Contact tab on my profile page if you want to communicate off-list.

Good luck!

Hazel

Hi Alana, so sorry you've had to join us here. You'll usually find knowledgeable people here who are willing to share their expertise and help you cope as best they can. It may take a day or two to get responses from the people with the most knowledge. (One of them is POW, who has already responded.)

I have some somewhat contrary advice about the scans. My husband has had them done here in DC at two different hospitals as well as at Hopkins. In my opinion Hopkins is the best – and even if you have to wait a week, I think it's worth the wait. If you have the scans done locally this week, they won't want to repeat them at Hopkins next week. But perhaps if you call the oncologist's office at Hopkins they will be able to schedule you to have scans done June 4. I know it's not that far to Baltimore, but you will want to have them done as quickly as possible so they can figure out what you're dealing with.

My husband was also diagnosed Stage 4 in the pathology report, but now the two oncologists we have consulted at Hopkins  (Dr. Sharfman and Dr. Lipson, both melanoma specialists) have staged him at 2B. Sometimes the pathologist doesn't get it right, so you are not off base to question. However, the depth of the lesion makes it high risk, particularly coupled with the high mitotic rate. My guess is that they will want to remove more tissue to try to get clear margins, and perhaps also do a sentinel node biopsy – though I'm not sure how the position on your ankle affects any of this.

So – my advice is, hang on for now. Do what you can to deal with your anxiety – do you practice yoga or another discipline like it? Tough it out until you are able to get more accurate information and meet with the experts who can help you figure out what's going on.

Feel free to be in touch with me by using the Contact tab on my profile page if you want to communicate off-list.

Good luck!

Hazel

This doctor took what I call a SWAG——Scientific Wild Ass Guess.  You are correct, a pathology report of the type you received is not alone scientific evidence of Stage IV Melanoma.

Here is a link to AJCC Clinical Guidelines for Melanoma Staging.  http://www.cancerstaging.org/staging/posters/melanoma12x15.pdf

As you can see in the chart, there are three seperate criteria that must ALL be present  for Stage IV patient pathologic staging—-AnyT, AnyN,M1,,  At present you do not meet all the scientifically documented criteria, so yes, your Doctor was wrong.

What would have been a more appropriate statement is due to the size and depth of the removed lesion that still presents with involved surgical margins, it is worrisome for metastisis and requires a full radiological workup of CT/PET and Brain MRI scans with and without contrast, a full blood workup and a surgical consult.

As far as his death comment, though I don't have his name, I was able to get his photo so that other people may avoid him

http://www.wayodd.com/head-up-your-ass/v/4735/

Unfortunately, this board is littered with stories of doctors like this, but the important thing for you now is to simply accept you got a rotten apple, move forward and work the problem as it is scientifically presented to you with clear evidence and a treatment plan for you to evaluate.

To close, I have been Stage IV since 1996 with seven recurrences and I look pretty good for a dead guy.

Hang in there.  You should be in pretty good hands at Hopkins.

Cheers,

Charlie S

This doctor took what I call a SWAG——Scientific Wild Ass Guess.  You are correct, a pathology report of the type you received is not alone scientific evidence of Stage IV Melanoma.

Here is a link to AJCC Clinical Guidelines for Melanoma Staging.  http://www.cancerstaging.org/staging/posters/melanoma12x15.pdf

As you can see in the chart, there are three seperate criteria that must ALL be present  for Stage IV patient pathologic staging—-AnyT, AnyN,M1,,  At present you do not meet all the scientifically documented criteria, so yes, your Doctor was wrong.

What would have been a more appropriate statement is due to the size and depth of the removed lesion that still presents with involved surgical margins, it is worrisome for metastisis and requires a full radiological workup of CT/PET and Brain MRI scans with and without contrast, a full blood workup and a surgical consult.

As far as his death comment, though I don't have his name, I was able to get his photo so that other people may avoid him

http://www.wayodd.com/head-up-your-ass/v/4735/

Unfortunately, this board is littered with stories of doctors like this, but the important thing for you now is to simply accept you got a rotten apple, move forward and work the problem as it is scientifically presented to you with clear evidence and a treatment plan for you to evaluate.

To close, I have been Stage IV since 1996 with seven recurrences and I look pretty good for a dead guy.

Hang in there.  You should be in pretty good hands at Hopkins.

Cheers,

Charlie S

This doctor took what I call a SWAG——Scientific Wild Ass Guess.  You are correct, a pathology report of the type you received is not alone scientific evidence of Stage IV Melanoma.

Here is a link to AJCC Clinical Guidelines for Melanoma Staging.  http://www.cancerstaging.org/staging/posters/melanoma12x15.pdf

As you can see in the chart, there are three seperate criteria that must ALL be present  for Stage IV patient pathologic staging—-AnyT, AnyN,M1,,  At present you do not meet all the scientifically documented criteria, so yes, your Doctor was wrong.

What would have been a more appropriate statement is due to the size and depth of the removed lesion that still presents with involved surgical margins, it is worrisome for metastisis and requires a full radiological workup of CT/PET and Brain MRI scans with and without contrast, a full blood workup and a surgical consult.

As far as his death comment, though I don't have his name, I was able to get his photo so that other people may avoid him

http://www.wayodd.com/head-up-your-ass/v/4735/

Unfortunately, this board is littered with stories of doctors like this, but the important thing for you now is to simply accept you got a rotten apple, move forward and work the problem as it is scientifically presented to you with clear evidence and a treatment plan for you to evaluate.

To close, I have been Stage IV since 1996 with seven recurrences and I look pretty good for a dead guy.

Hang in there.  You should be in pretty good hands at Hopkins.

Cheers,

Charlie S

Depth and width alone does not mean stage IV.  I know several with lesions over 8mm deep who are not stage IV.  Take this one step at a time.  Get the path report, get the scans and THEN you will know what you are dealing with.  Charlie's right, the SWAG was not appropriate and you need to get real documentation on all aspects so you really know where you stand.

Janner

Depth and width alone does not mean stage IV.  I know several with lesions over 8mm deep who are not stage IV.  Take this one step at a time.  Get the path report, get the scans and THEN you will know what you are dealing with.  Charlie's right, the SWAG was not appropriate and you need to get real documentation on all aspects so you really know where you stand.

Janner

Depth and width alone does not mean stage IV.  I know several with lesions over 8mm deep who are not stage IV.  Take this one step at a time.  Get the path report, get the scans and THEN you will know what you are dealing with.  Charlie's right, the SWAG was not appropriate and you need to get real documentation on all aspects so you really know where you stand.

Janner

I'm sorry to read about your path report and the experience with your oncologist.  I certainly would

find another immediately.

I also had nodular melanoma which came as a big surprise.  As you are doing you need to see medical and surgical oncologists at a major melanoma center.  It's a personal decision but you might also consider a second opinion since you will have some difficult choices ahead.  My melanoma had spread to many lymph nodes (as shown by a PET scan and biopsy) so I elected not to have additional surgery beyond the original biopsy.  Instead I elected for systemic treatment and joined the Merck Phase I PD1 clinical trial and have been a responder.  The quality of my life has been good.  There are many melanoma clinical trails available.

As you learn more about your own situtation (rather than guessing) there is a lot of information on this board.  I wish you the best.

I'm sorry to read about your path report and the experience with your oncologist.  I certainly would

find another immediately.

I also had nodular melanoma which came as a big surprise.  As you are doing you need to see medical and surgical oncologists at a major melanoma center.  It's a personal decision but you might also consider a second opinion since you will have some difficult choices ahead.  My melanoma had spread to many lymph nodes (as shown by a PET scan and biopsy) so I elected not to have additional surgery beyond the original biopsy.  Instead I elected for systemic treatment and joined the Merck Phase I PD1 clinical trial and have been a responder.  The quality of my life has been good.  There are many melanoma clinical trails available.

As you learn more about your own situtation (rather than guessing) there is a lot of information on this board.  I wish you the best.

I'm sorry to read about your path report and the experience with your oncologist.  I certainly would

find another immediately.

I also had nodular melanoma which came as a big surprise.  As you are doing you need to see medical and surgical oncologists at a major melanoma center.  It's a personal decision but you might also consider a second opinion since you will have some difficult choices ahead.  My melanoma had spread to many lymph nodes (as shown by a PET scan and biopsy) so I elected not to have additional surgery beyond the original biopsy.  Instead I elected for systemic treatment and joined the Merck Phase I PD1 clinical trial and have been a responder.  The quality of my life has been good.  There are many melanoma clinical trails available.

As you learn more about your own situtation (rather than guessing) there is a lot of information on this board.  I wish you the best.

As Charlie and others have said, the doctor is taking a guess based on the likelihood, but it's not a proper diagnosis, obviously, and even if some of them can't come to terms with it, doctors are not always correct.  It sounds like you are getting excellent advice here and I don't have a lot to add except that there are an awful lot of people here who are living with Stage IV melanoma as a chronic condition for years.  It's an incredible source of help, this board, and you found it a lot earlier than I did, you obviously know how to look for the best!  It's a truly crappy situation to have to deal with but it can be dealt with, and as far as I can tell, you are doing a great job in lining things up properly.  Someone suggested organizing b-raf and c-kit testing of your biopsy sample and I'd echo that, it can save a lot of time having it done asap.  I hope that the doctor ends up being quite wrong but in the chance that he is correct, there are still very likely many options for you for effective treatment.

Lori, caregiver to Will

As Charlie and others have said, the doctor is taking a guess based on the likelihood, but it's not a proper diagnosis, obviously, and even if some of them can't come to terms with it, doctors are not always correct.  It sounds like you are getting excellent advice here and I don't have a lot to add except that there are an awful lot of people here who are living with Stage IV melanoma as a chronic condition for years.  It's an incredible source of help, this board, and you found it a lot earlier than I did, you obviously know how to look for the best!  It's a truly crappy situation to have to deal with but it can be dealt with, and as far as I can tell, you are doing a great job in lining things up properly.  Someone suggested organizing b-raf and c-kit testing of your biopsy sample and I'd echo that, it can save a lot of time having it done asap.  I hope that the doctor ends up being quite wrong but in the chance that he is correct, there are still very likely many options for you for effective treatment.

Lori, caregiver to Will

As Charlie and others have said, the doctor is taking a guess based on the likelihood, but it's not a proper diagnosis, obviously, and even if some of them can't come to terms with it, doctors are not always correct.  It sounds like you are getting excellent advice here and I don't have a lot to add except that there are an awful lot of people here who are living with Stage IV melanoma as a chronic condition for years.  It's an incredible source of help, this board, and you found it a lot earlier than I did, you obviously know how to look for the best!  It's a truly crappy situation to have to deal with but it can be dealt with, and as far as I can tell, you are doing a great job in lining things up properly.  Someone suggested organizing b-raf and c-kit testing of your biopsy sample and I'd echo that, it can save a lot of time having it done asap.  I hope that the doctor ends up being quite wrong but in the chance that he is correct, there are still very likely many options for you for effective treatment.

Lori, caregiver to Will

My husband got a call on his cell phone on on his way home and the derm told him he had melanoma and that it was really bad. She proceeded to tell him on the phone how bad it really was while he was driving with the clarks level 4 and it was amelanotic nodular melanoma a rare one. They seem to be pink or skin toned. I sometimes think these doctors are not really thinking when they are saying what they are saying. I was lucky my husband drove home and not into a tree, he was a wreck when he did get home. It did however make us move really fast to figure out what to do next. We went to Johns Hopkins as well and doctor Julie Lange did the surgery. I don't know if she is still there but she was a great surgeon, she is very agressive. You may want to research their site and read about the surgeons and medical staff. They may do a PetScan before your surgery which is what my husband did and then they did the lymphnode surgery. I'm sorry you are going through this and so much in the past. My husband was also 40 when diagnosed and it's not a fun ride but you can do it – he did. 

Good luck!

Rebecca

My husband got a call on his cell phone on on his way home and the derm told him he had melanoma and that it was really bad. She proceeded to tell him on the phone how bad it really was while he was driving with the clarks level 4 and it was amelanotic nodular melanoma a rare one. They seem to be pink or skin toned. I sometimes think these doctors are not really thinking when they are saying what they are saying. I was lucky my husband drove home and not into a tree, he was a wreck when he did get home. It did however make us move really fast to figure out what to do next. We went to Johns Hopkins as well and doctor Julie Lange did the surgery. I don't know if she is still there but she was a great surgeon, she is very agressive. You may want to research their site and read about the surgeons and medical staff. They may do a PetScan before your surgery which is what my husband did and then they did the lymphnode surgery. I'm sorry you are going through this and so much in the past. My husband was also 40 when diagnosed and it's not a fun ride but you can do it – he did. 

Good luck!

Rebecca

My husband got a call on his cell phone on on his way home and the derm told him he had melanoma and that it was really bad. She proceeded to tell him on the phone how bad it really was while he was driving with the clarks level 4 and it was amelanotic nodular melanoma a rare one. They seem to be pink or skin toned. I sometimes think these doctors are not really thinking when they are saying what they are saying. I was lucky my husband drove home and not into a tree, he was a wreck when he did get home. It did however make us move really fast to figure out what to do next. We went to Johns Hopkins as well and doctor Julie Lange did the surgery. I don't know if she is still there but she was a great surgeon, she is very agressive. You may want to research their site and read about the surgeons and medical staff. They may do a PetScan before your surgery which is what my husband did and then they did the lymphnode surgery. I'm sorry you are going through this and so much in the past. My husband was also 40 when diagnosed and it's not a fun ride but you can do it – he did. 

Good luck!

Rebecca