› Forums › Cutaneous Melanoma Community › Update on BIL with Unknown Primary
- This topic has 15 replies, 3 voices, and was last updated 9 years, 6 months ago by
Janner.
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- October 15, 2014 at 1:49 pm
My BIL had WLE and SLNB yesterday of tumor just above his left elbow. Surgeon said second path opinion concurred with first, with diagnosis of metastatic melanoma. But recent PET scan clear. Primary might be regressed skin tumor, surgeon said, and "I won't be surprised to find cancerous nodes, and won't be surprised not to." They'll also check for in-transit metastasis. When results available, I hope surgeon offers staging information and recommendation to see oncologist, as BIL has resisted finding out anything about melanoma or consulting an oncologist.
BIL, in his mid-50s, already has a stent in renal artery; high blood pressure; and atrial fibrillation. In fact, surgical team yesterday noticed the a-fib during procedure and asked if BIL was seeing cardiologist. He isn't. Does an underlying cardiac or other health issue make possible systemic treatment trickier, or harder to tolerate?
I have read that, with metastatic melanoma diagnosis but clear scans — and with or without node involvement — some patients take a watch and wait approach. But do many decide on adjuvant therapy?
What are chances that BIL's elbow lesion was the only metastasis from unknown primary….that there are no micrometastasis elsewhere that might be nipped in bud with adjuvant treatment?
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- October 15, 2014 at 6:05 pm
BIL other health issues may affect treatments, yes. Interferon is the only approved FDA adjuvant treatment for stage III. Not sure if his health issues would allow that or not. I already sent you the link that helps you decide if that is the best option for him. No other options exist for NED besides "watching" or interferon without investigating clinical trials. However, clinical trials are a lot pickier about other conditions which may or may not affect their data. BIL might not qualify for those trials based on his conditions. You'd probably have to disclose those issues for each trial of interest and see if they were disqualifying factor – they may or may not be.
As for your question about chances this isn't elsewhere, there is just no way to answer those type of questions. Melanoma is capricious. Sometimes high risk people never recur and low risk do – there is just no way to predict. And an unknown primary adds to the uncertainty factor.
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- October 15, 2014 at 6:05 pm
BIL other health issues may affect treatments, yes. Interferon is the only approved FDA adjuvant treatment for stage III. Not sure if his health issues would allow that or not. I already sent you the link that helps you decide if that is the best option for him. No other options exist for NED besides "watching" or interferon without investigating clinical trials. However, clinical trials are a lot pickier about other conditions which may or may not affect their data. BIL might not qualify for those trials based on his conditions. You'd probably have to disclose those issues for each trial of interest and see if they were disqualifying factor – they may or may not be.
As for your question about chances this isn't elsewhere, there is just no way to answer those type of questions. Melanoma is capricious. Sometimes high risk people never recur and low risk do – there is just no way to predict. And an unknown primary adds to the uncertainty factor.
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- October 15, 2014 at 6:05 pm
BIL other health issues may affect treatments, yes. Interferon is the only approved FDA adjuvant treatment for stage III. Not sure if his health issues would allow that or not. I already sent you the link that helps you decide if that is the best option for him. No other options exist for NED besides "watching" or interferon without investigating clinical trials. However, clinical trials are a lot pickier about other conditions which may or may not affect their data. BIL might not qualify for those trials based on his conditions. You'd probably have to disclose those issues for each trial of interest and see if they were disqualifying factor – they may or may not be.
As for your question about chances this isn't elsewhere, there is just no way to answer those type of questions. Melanoma is capricious. Sometimes high risk people never recur and low risk do – there is just no way to predict. And an unknown primary adds to the uncertainty factor.
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- October 16, 2014 at 12:33 am
Its difficult to tell what treatments your BIL will be offered. Much will depend on how he's finally staged. As Janner pointed out, Interferon is the only FDA approved treatment for Stage III melanoma. It has a lot of nasty side effects and not a very high efficacy rate. But those who have made it through the treatment protocol have had no regrets.
Having an unknown primary is not a bad place to be. There are studies that have conlcuded that those with unknown primaries have a bit of an edge because of a strong endogenous immune response — meaning the body's immune system zapped the primary melanoma but wasn't able to finish the job before a few cells managed to escape to set up housekeeping elsewhere — like in a lymph node.
His blood pressure and a-fib could be a problem when it comes to treatment. But there are drugs to control those. I have high blood pressure that's contolled with medication and I was able to qualify for a trial. So hope is not lost. But he will have to make the oncologist aware of these conditions. It's ultimately in his best interest to address those ASAP.
The options I was offered were as Janner described: Interferon, clinical trial, or watch & wait. No treatment options were offered until I saw an oncologist. His treatment choice will be a personal one. There are pros and cons to all three, which the oncologist will cover with him.
A clean PET scan is a good thing. Don't be surprised, though, if that will be followed up with a CT scan with contrast and additional skin screenings.
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- October 16, 2014 at 2:43 am
Janner and Linny: Thanks for your replies and great info. I think I'll rest easier when BIL is finally in the care of an oncologist, weeks after he was told he needed one. That is, if he makes it there.
My sister told me this evening that BIL said, "There's no evidence that I have any cancer beyond what has been removed, and I don't need an oncologist." He is either ignoring pathology report or believes that, since he has no obvious pain or debility, there is nothing significant there. My fear is that — no matter what the results of WLE and SNB — he will choose "watch and wait" not as an informed option, but in denial. I don't think he would go to Hopkins for a workup or an expert opinion on MUP unless someone told him he was Stage IV.
Linny, I appreciated your comment re: clean PET perhaps being followed by CT and more skin screenings. I'll be watching for that. And glad to hear your blood pressure didn't stop you from participating in trial. That's good hope.
Hope we'll have some results for BIL early next week. Is it possible to have path report say "metastatic melanoma" and have clean PET, clean lymph nodes, and no in-transit metastatis?
I knew nothing about melanoma just a month ago, and now I'm deeply inspired by people who live with it, whose loved ones live with it, and those who treat and study it.
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- October 17, 2014 at 1:11 pm
"Watch and wait" is not a matter of going home and forgetting about your melanoma diagnosis. It involves routine doctor visits and scans at regular intervals. Your BIL needs to undertand this.
If I remember correctly, the first year after diagnosis you see your oncologist and get a CT and/or PET scan every 3 months. In the second year, that interval increases to every 4 months. In the third year that increases to every 6 months. It will eventually increase to yearly but I forget when that takes place.
In addition to that, he will need routine skin exams, which can be done locally. He will also have followup visits with his surgeon.
The goal is to keep him under doctor surveilliance so that if there ever is a recurrence it will be immediately addressed.
What he should hear from all his doctors is that the longer he goes without a recurrence, the odds of a recurrence decrease. That's why those monthly intervals for scans and doctor visits increase over time.
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- October 17, 2014 at 1:48 pm
I agree with Linny, except the scan intervals differ between doctors and institutions. Some don't do scans – just FYI – because scans haven't been shown to increase survival. It definitely depends on where you are seen what the followup regimen will be. But I agree, BIL needs to understand this isn't just a "cut it out" and never check in with the doc again.
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- October 17, 2014 at 1:48 pm
I agree with Linny, except the scan intervals differ between doctors and institutions. Some don't do scans – just FYI – because scans haven't been shown to increase survival. It definitely depends on where you are seen what the followup regimen will be. But I agree, BIL needs to understand this isn't just a "cut it out" and never check in with the doc again.
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- October 17, 2014 at 1:48 pm
I agree with Linny, except the scan intervals differ between doctors and institutions. Some don't do scans – just FYI – because scans haven't been shown to increase survival. It definitely depends on where you are seen what the followup regimen will be. But I agree, BIL needs to understand this isn't just a "cut it out" and never check in with the doc again.
-
- October 17, 2014 at 1:11 pm
"Watch and wait" is not a matter of going home and forgetting about your melanoma diagnosis. It involves routine doctor visits and scans at regular intervals. Your BIL needs to undertand this.
If I remember correctly, the first year after diagnosis you see your oncologist and get a CT and/or PET scan every 3 months. In the second year, that interval increases to every 4 months. In the third year that increases to every 6 months. It will eventually increase to yearly but I forget when that takes place.
In addition to that, he will need routine skin exams, which can be done locally. He will also have followup visits with his surgeon.
The goal is to keep him under doctor surveilliance so that if there ever is a recurrence it will be immediately addressed.
What he should hear from all his doctors is that the longer he goes without a recurrence, the odds of a recurrence decrease. That's why those monthly intervals for scans and doctor visits increase over time.
-
- October 17, 2014 at 1:11 pm
"Watch and wait" is not a matter of going home and forgetting about your melanoma diagnosis. It involves routine doctor visits and scans at regular intervals. Your BIL needs to undertand this.
If I remember correctly, the first year after diagnosis you see your oncologist and get a CT and/or PET scan every 3 months. In the second year, that interval increases to every 4 months. In the third year that increases to every 6 months. It will eventually increase to yearly but I forget when that takes place.
In addition to that, he will need routine skin exams, which can be done locally. He will also have followup visits with his surgeon.
The goal is to keep him under doctor surveilliance so that if there ever is a recurrence it will be immediately addressed.
What he should hear from all his doctors is that the longer he goes without a recurrence, the odds of a recurrence decrease. That's why those monthly intervals for scans and doctor visits increase over time.
-
- October 16, 2014 at 2:43 am
Janner and Linny: Thanks for your replies and great info. I think I'll rest easier when BIL is finally in the care of an oncologist, weeks after he was told he needed one. That is, if he makes it there.
My sister told me this evening that BIL said, "There's no evidence that I have any cancer beyond what has been removed, and I don't need an oncologist." He is either ignoring pathology report or believes that, since he has no obvious pain or debility, there is nothing significant there. My fear is that — no matter what the results of WLE and SNB — he will choose "watch and wait" not as an informed option, but in denial. I don't think he would go to Hopkins for a workup or an expert opinion on MUP unless someone told him he was Stage IV.
Linny, I appreciated your comment re: clean PET perhaps being followed by CT and more skin screenings. I'll be watching for that. And glad to hear your blood pressure didn't stop you from participating in trial. That's good hope.
Hope we'll have some results for BIL early next week. Is it possible to have path report say "metastatic melanoma" and have clean PET, clean lymph nodes, and no in-transit metastatis?
I knew nothing about melanoma just a month ago, and now I'm deeply inspired by people who live with it, whose loved ones live with it, and those who treat and study it.
-
- October 16, 2014 at 2:43 am
Janner and Linny: Thanks for your replies and great info. I think I'll rest easier when BIL is finally in the care of an oncologist, weeks after he was told he needed one. That is, if he makes it there.
My sister told me this evening that BIL said, "There's no evidence that I have any cancer beyond what has been removed, and I don't need an oncologist." He is either ignoring pathology report or believes that, since he has no obvious pain or debility, there is nothing significant there. My fear is that — no matter what the results of WLE and SNB — he will choose "watch and wait" not as an informed option, but in denial. I don't think he would go to Hopkins for a workup or an expert opinion on MUP unless someone told him he was Stage IV.
Linny, I appreciated your comment re: clean PET perhaps being followed by CT and more skin screenings. I'll be watching for that. And glad to hear your blood pressure didn't stop you from participating in trial. That's good hope.
Hope we'll have some results for BIL early next week. Is it possible to have path report say "metastatic melanoma" and have clean PET, clean lymph nodes, and no in-transit metastatis?
I knew nothing about melanoma just a month ago, and now I'm deeply inspired by people who live with it, whose loved ones live with it, and those who treat and study it.
-
- October 16, 2014 at 12:33 am
Its difficult to tell what treatments your BIL will be offered. Much will depend on how he's finally staged. As Janner pointed out, Interferon is the only FDA approved treatment for Stage III melanoma. It has a lot of nasty side effects and not a very high efficacy rate. But those who have made it through the treatment protocol have had no regrets.
Having an unknown primary is not a bad place to be. There are studies that have conlcuded that those with unknown primaries have a bit of an edge because of a strong endogenous immune response — meaning the body's immune system zapped the primary melanoma but wasn't able to finish the job before a few cells managed to escape to set up housekeeping elsewhere — like in a lymph node.
His blood pressure and a-fib could be a problem when it comes to treatment. But there are drugs to control those. I have high blood pressure that's contolled with medication and I was able to qualify for a trial. So hope is not lost. But he will have to make the oncologist aware of these conditions. It's ultimately in his best interest to address those ASAP.
The options I was offered were as Janner described: Interferon, clinical trial, or watch & wait. No treatment options were offered until I saw an oncologist. His treatment choice will be a personal one. There are pros and cons to all three, which the oncologist will cover with him.
A clean PET scan is a good thing. Don't be surprised, though, if that will be followed up with a CT scan with contrast and additional skin screenings.
-
- October 16, 2014 at 12:33 am
Its difficult to tell what treatments your BIL will be offered. Much will depend on how he's finally staged. As Janner pointed out, Interferon is the only FDA approved treatment for Stage III melanoma. It has a lot of nasty side effects and not a very high efficacy rate. But those who have made it through the treatment protocol have had no regrets.
Having an unknown primary is not a bad place to be. There are studies that have conlcuded that those with unknown primaries have a bit of an edge because of a strong endogenous immune response — meaning the body's immune system zapped the primary melanoma but wasn't able to finish the job before a few cells managed to escape to set up housekeeping elsewhere — like in a lymph node.
His blood pressure and a-fib could be a problem when it comes to treatment. But there are drugs to control those. I have high blood pressure that's contolled with medication and I was able to qualify for a trial. So hope is not lost. But he will have to make the oncologist aware of these conditions. It's ultimately in his best interest to address those ASAP.
The options I was offered were as Janner described: Interferon, clinical trial, or watch & wait. No treatment options were offered until I saw an oncologist. His treatment choice will be a personal one. There are pros and cons to all three, which the oncologist will cover with him.
A clean PET scan is a good thing. Don't be surprised, though, if that will be followed up with a CT scan with contrast and additional skin screenings.
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Tagged: cutaneous melanoma
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