Questions, what would you do?

If the lung does deflate, can they fix that or is that permanent damage? If they do a needle biopsy now, will they get enough tissue to do a BRAF test? Assuming they do the biopsy and it comes back as melanoma, what treatment would they recommend?

If the lung does deflate, can they fix that or is that permanent damage? If they do a needle biopsy now, will they get enough tissue to do a BRAF test? Assuming they do the biopsy and it comes back as melanoma, what treatment would they recommend?

If the lung does deflate, can they fix that or is that permanent damage? If they do a needle biopsy now, will they get enough tissue to do a BRAF test? Assuming they do the biopsy and it comes back as melanoma, what treatment would they recommend?

Well, I think it's wise for the doctor not to discuss treatment options unless and until you know if this spot is melanaoma. After all, this spot might turn out to be nothing to worry about.

But from the patient's perspective, it is reassuring to have at least some idea of what you will do IF (and only IF) the spot is melanoma. This is particularly true if you want to consider participating in a clinical trial. It can take a lot of time and effort to find appropriate clinical trials. And some clinical trials will exclude you if you have had certain prior therapies and other trials will only include you if you HAVE had certain prior therapies. So it's good to know that before you agree to further treatments. So while I think the doctor is wise to hold off on such conversations, I think you are wise, too, to start doing your homework. 

Many people think that anti-PD1 is the most promising treatment out there for BRAF negative patients. Anti-PD1 is not FDA approved yet, but there are a lot of clinical trials going on with it (2 different manufacturers, some trials combining anti-PD1 with Yervoy or  with chemo, etc). I suggest that you check the clinicaltrials.com web site and see what would be available for you. You should also view the immunotherapy and anti-PD1 webinars on the Melanoma International Foundation web site http://melanomainternational.org/events-webinar/#.UhSt8tJwrh4 so you can educate yourself about the possibilities. 

Don't panic. DEFINITELY don't panic! This might not be melanoma and even if it is, there are a lot of new treatments available now that are more effective than what was available when you were first diagnosed. But frankly, I always enjoy the feeling of flooring my doctor by asking well-informed, sophisticated questions about my treatment options. Make them scramble to come up with GOOD answers! 

I have had a lung collapse after a discectomy in 1990 and another partially deflate during a FNA in 2007.  Not fun, tends to leave one coughing some afterwards.  Yes they can re-inflate the lung.  One question is the size and location of the "spot".  Will they go in from the front or back of your body?  The one through my back into a tumor on the back wall of my lung both injured a nerve (took a year to stop hurting), cut a blood vessel (blood poured thru lung and out my mouth (glad I was laying on my stomach and didn't have a major breathing problem from the flow

      I do not find it surprising in the least that a surgical site lights up in a PET.   My PETs have shown me where I have damage to mouth, legs, knees, neck, arm, groin and chest from injuries and surgeries  .Do those bright spots on my PETs mean I have tumors there?  Or do they just mean that those are the type tissue/spots where larger amounts of glucose collect?  YEP!  For most of the spots, I didn't even want my Onc to look at hard.  The CT will provide very exact measurements (more so than a PET and a repeat CT will define growth quite well.    Did they just do a PET or did they do a PET/CT?

.      I  would suspect that it would be a CT guided FNA,  which helps to get into the tumor.  Do remember that an FNA is a little like sticking a straw in a well to determine what is in the water.  Depends on exactly what is in the spot where the withdrawal is made.  Oh, yes, my sample withdrawn was INCONCLUSIVE!   So we wound up relying on a repeat CT to look for growth.  It/they grew and I started systemic treatment.

       Hopefully this will provide you more info on which to make a decision.  Your decision.  How much anguish would the wait for a follow up CT cause you?  I might ask if they would consider another CT in 4 rather than 8 weeks.. 

I have had a lung collapse after a discectomy in 1990 and another partially deflate during a FNA in 2007.  Not fun, tends to leave one coughing some afterwards.  Yes they can re-inflate the lung.  One question is the size and location of the "spot".  Will they go in from the front or back of your body?  The one through my back into a tumor on the back wall of my lung both injured a nerve (took a year to stop hurting), cut a blood vessel (blood poured thru lung and out my mouth (glad I was laying on my stomach and didn't have a major breathing problem from the flow

      I do not find it surprising in the least that a surgical site lights up in a PET.   My PETs have shown me where I have damage to mouth, legs, knees, neck, arm, groin and chest from injuries and surgeries  .Do those bright spots on my PETs mean I have tumors there?  Or do they just mean that those are the type tissue/spots where larger amounts of glucose collect?  YEP!  For most of the spots, I didn't even want my Onc to look at hard.  The CT will provide very exact measurements (more so than a PET and a repeat CT will define growth quite well.    Did they just do a PET or did they do a PET/CT?

.      I  would suspect that it would be a CT guided FNA,  which helps to get into the tumor.  Do remember that an FNA is a little like sticking a straw in a well to determine what is in the water.  Depends on exactly what is in the spot where the withdrawal is made.  Oh, yes, my sample withdrawn was INCONCLUSIVE!   So we wound up relying on a repeat CT to look for growth.  It/they grew and I started systemic treatment.

       Hopefully this will provide you more info on which to make a decision.  Your decision.  How much anguish would the wait for a follow up CT cause you?  I might ask if they would consider another CT in 4 rather than 8 weeks.. 

I have had a lung collapse after a discectomy in 1990 and another partially deflate during a FNA in 2007.  Not fun, tends to leave one coughing some afterwards.  Yes they can re-inflate the lung.  One question is the size and location of the "spot".  Will they go in from the front or back of your body?  The one through my back into a tumor on the back wall of my lung both injured a nerve (took a year to stop hurting), cut a blood vessel (blood poured thru lung and out my mouth (glad I was laying on my stomach and didn't have a major breathing problem from the flow

      I do not find it surprising in the least that a surgical site lights up in a PET.   My PETs have shown me where I have damage to mouth, legs, knees, neck, arm, groin and chest from injuries and surgeries  .Do those bright spots on my PETs mean I have tumors there?  Or do they just mean that those are the type tissue/spots where larger amounts of glucose collect?  YEP!  For most of the spots, I didn't even want my Onc to look at hard.  The CT will provide very exact measurements (more so than a PET and a repeat CT will define growth quite well.    Did they just do a PET or did they do a PET/CT?

.      I  would suspect that it would be a CT guided FNA,  which helps to get into the tumor.  Do remember that an FNA is a little like sticking a straw in a well to determine what is in the water.  Depends on exactly what is in the spot where the withdrawal is made.  Oh, yes, my sample withdrawn was INCONCLUSIVE!   So we wound up relying on a repeat CT to look for growth.  It/they grew and I started systemic treatment.

       Hopefully this will provide you more info on which to make a decision.  Your decision.  How much anguish would the wait for a follow up CT cause you?  I might ask if they would consider another CT in 4 rather than 8 weeks.. 

Hey Roxy,

So very sorry for your worries.  And NOBODY can know what that feels like unless they've been there!  I had a right upper lobectomy of my lung for a tumor that was postive for melanoma in 2010 (as well as brain mets zapped via SRS and a tonsillectomy for same).  Additionally, research shows that melanoma most frequently recurs at previous sites like scars from prior removal.  However, it aint over til it's over and you won't know if it's melanoma until the pathology is done.  As a patient I had a chest tube and all sorts of mess to get through the surgery of the removal of the right upper lobe of my lung.  I lived!!!  As a pediatric NP, I have taken care of lots of children with atelectasis, pneumothorax, etc….all sorts of collapsed lungs….and they lived too!!!  There are plenty of things that can be done to deal with that issue should it happen and it was right of your doctor to warn you that it was a possibilty.  It's not fun.  But, you could handle it if need be. On an even better note.  I have been in an NED arm for Stage IV patients Phase I trial of BMS anti-PD1 (Nivolumab) for the past 2 1/2 years and remain NED today.  While anti-PD1 has some of the same methods of action and side effects as ipi, it has been found to be more effective and with a more manageable side effect profile.  At first, patients who had not tolerated ipi well were not allowed in anti-PD1 trials.  Now, Moffitt, as well as other locations, have arms specifically designated for patients with prior treatment and side effects from ipi.  Most patients seem to be doing well.  I don't really feel able to tell you what you SHOULD do, but I do think you should follow your heart as to what you think is best for you and believe that you do have some real, and viable options.  Wishing you the best. C

I really do understand what you mean.  I just had my 10 year anniversary of living with melanoma August 14!!!  It is very hard to get out from under its shadow.  And…this is the place!  For a pity party, for anger and frustration, for access to information!!!  You can't always do that in front of loved ones and I think these boards should be places with no judgement….for exactly that purpose!

I will be keeping fingers and toes crossed that your biopsy next week is a big old waste of time with a negative result!!!  At any rate, I'm glad you are getting it done and you can move forward from there with whatever steps you need to take next.

Hang in there.  Wishing you my best. Celeste

Well, I think it's wise for the doctor not to discuss treatment options unless and until you know if this spot is melanaoma. After all, this spot might turn out to be nothing to worry about.

But from the patient's perspective, it is reassuring to have at least some idea of what you will do IF (and only IF) the spot is melanoma. This is particularly true if you want to consider participating in a clinical trial. It can take a lot of time and effort to find appropriate clinical trials. And some clinical trials will exclude you if you have had certain prior therapies and other trials will only include you if you HAVE had certain prior therapies. So it's good to know that before you agree to further treatments. So while I think the doctor is wise to hold off on such conversations, I think you are wise, too, to start doing your homework. 

Many people think that anti-PD1 is the most promising treatment out there for BRAF negative patients. Anti-PD1 is not FDA approved yet, but there are a lot of clinical trials going on with it (2 different manufacturers, some trials combining anti-PD1 with Yervoy or  with chemo, etc). I suggest that you check the clinicaltrials.com web site and see what would be available for you. You should also view the immunotherapy and anti-PD1 webinars on the Melanoma International Foundation web site http://melanomainternational.org/events-webinar/#.UhSt8tJwrh4 so you can educate yourself about the possibilities. 

Don't panic. DEFINITELY don't panic! This might not be melanoma and even if it is, there are a lot of new treatments available now that are more effective than what was available when you were first diagnosed. But frankly, I always enjoy the feeling of flooring my doctor by asking well-informed, sophisticated questions about my treatment options. Make them scramble to come up with GOOD answers! 

Well, I think it's wise for the doctor not to discuss treatment options unless and until you know if this spot is melanaoma. After all, this spot might turn out to be nothing to worry about.

But from the patient's perspective, it is reassuring to have at least some idea of what you will do IF (and only IF) the spot is melanoma. This is particularly true if you want to consider participating in a clinical trial. It can take a lot of time and effort to find appropriate clinical trials. And some clinical trials will exclude you if you have had certain prior therapies and other trials will only include you if you HAVE had certain prior therapies. So it's good to know that before you agree to further treatments. So while I think the doctor is wise to hold off on such conversations, I think you are wise, too, to start doing your homework. 

Many people think that anti-PD1 is the most promising treatment out there for BRAF negative patients. Anti-PD1 is not FDA approved yet, but there are a lot of clinical trials going on with it (2 different manufacturers, some trials combining anti-PD1 with Yervoy or  with chemo, etc). I suggest that you check the clinicaltrials.com web site and see what would be available for you. You should also view the immunotherapy and anti-PD1 webinars on the Melanoma International Foundation web site http://melanomainternational.org/events-webinar/#.UhSt8tJwrh4 so you can educate yourself about the possibilities. 

Don't panic. DEFINITELY don't panic! This might not be melanoma and even if it is, there are a lot of new treatments available now that are more effective than what was available when you were first diagnosed. But frankly, I always enjoy the feeling of flooring my doctor by asking well-informed, sophisticated questions about my treatment options. Make them scramble to come up with GOOD answers! 

Hey Roxy,

So very sorry for your worries.  And NOBODY can know what that feels like unless they've been there!  I had a right upper lobectomy of my lung for a tumor that was postive for melanoma in 2010 (as well as brain mets zapped via SRS and a tonsillectomy for same).  Additionally, research shows that melanoma most frequently recurs at previous sites like scars from prior removal.  However, it aint over til it's over and you won't know if it's melanoma until the pathology is done.  As a patient I had a chest tube and all sorts of mess to get through the surgery of the removal of the right upper lobe of my lung.  I lived!!!  As a pediatric NP, I have taken care of lots of children with atelectasis, pneumothorax, etc….all sorts of collapsed lungs….and they lived too!!!  There are plenty of things that can be done to deal with that issue should it happen and it was right of your doctor to warn you that it was a possibilty.  It's not fun.  But, you could handle it if need be. On an even better note.  I have been in an NED arm for Stage IV patients Phase I trial of BMS anti-PD1 (Nivolumab) for the past 2 1/2 years and remain NED today.  While anti-PD1 has some of the same methods of action and side effects as ipi, it has been found to be more effective and with a more manageable side effect profile.  At first, patients who had not tolerated ipi well were not allowed in anti-PD1 trials.  Now, Moffitt, as well as other locations, have arms specifically designated for patients with prior treatment and side effects from ipi.  Most patients seem to be doing well.  I don't really feel able to tell you what you SHOULD do, but I do think you should follow your heart as to what you think is best for you and believe that you do have some real, and viable options.  Wishing you the best. C

Hey Roxy,

So very sorry for your worries.  And NOBODY can know what that feels like unless they've been there!  I had a right upper lobectomy of my lung for a tumor that was postive for melanoma in 2010 (as well as brain mets zapped via SRS and a tonsillectomy for same).  Additionally, research shows that melanoma most frequently recurs at previous sites like scars from prior removal.  However, it aint over til it's over and you won't know if it's melanoma until the pathology is done.  As a patient I had a chest tube and all sorts of mess to get through the surgery of the removal of the right upper lobe of my lung.  I lived!!!  As a pediatric NP, I have taken care of lots of children with atelectasis, pneumothorax, etc….all sorts of collapsed lungs….and they lived too!!!  There are plenty of things that can be done to deal with that issue should it happen and it was right of your doctor to warn you that it was a possibilty.  It's not fun.  But, you could handle it if need be. On an even better note.  I have been in an NED arm for Stage IV patients Phase I trial of BMS anti-PD1 (Nivolumab) for the past 2 1/2 years and remain NED today.  While anti-PD1 has some of the same methods of action and side effects as ipi, it has been found to be more effective and with a more manageable side effect profile.  At first, patients who had not tolerated ipi well were not allowed in anti-PD1 trials.  Now, Moffitt, as well as other locations, have arms specifically designated for patients with prior treatment and side effects from ipi.  Most patients seem to be doing well.  I don't really feel able to tell you what you SHOULD do, but I do think you should follow your heart as to what you think is best for you and believe that you do have some real, and viable options.  Wishing you the best. C

I really do understand what you mean.  I just had my 10 year anniversary of living with melanoma August 14!!!  It is very hard to get out from under its shadow.  And…this is the place!  For a pity party, for anger and frustration, for access to information!!!  You can't always do that in front of loved ones and I think these boards should be places with no judgement….for exactly that purpose!

I will be keeping fingers and toes crossed that your biopsy next week is a big old waste of time with a negative result!!!  At any rate, I'm glad you are getting it done and you can move forward from there with whatever steps you need to take next.

Hang in there.  Wishing you my best. Celeste

I really do understand what you mean.  I just had my 10 year anniversary of living with melanoma August 14!!!  It is very hard to get out from under its shadow.  And…this is the place!  For a pity party, for anger and frustration, for access to information!!!  You can't always do that in front of loved ones and I think these boards should be places with no judgement….for exactly that purpose!

I will be keeping fingers and toes crossed that your biopsy next week is a big old waste of time with a negative result!!!  At any rate, I'm glad you are getting it done and you can move forward from there with whatever steps you need to take next.

Hang in there.  Wishing you my best. Celeste