› Forums › General Melanoma Community › Is MUP By Definition “Unresectable?”
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ecc26.
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- October 9, 2014 at 11:38 pm
Thanks especially to Janner, who has been so helpful, in such a detailed way. I don't want to keep nagging her as new questions occur to me, so want to pose this to all.
My brother-in-law has been diagnosed, via pathology report, with metastatic melanoma of unknown primary. This Tuesday, he will have WLE of spot near elbow, and SNB. Based on whole picture, Janner thinks his primary might have been a regressed tumor also in the skin.
Neither the path report nor doctors has referred to staging (though it must be at least stage III, with any metastasis, correct?). Slides have been sent to second lab for confirmation of diagnosis. I'm hoping second path report will be much more detailed, with info re: staging, gene involvement, ulceration, etc. Aren't they, usually, in a standard format?
In researching treatments and clinical trials, criteria for getting a drug or for study participation are sometimes very specific, e.g., "for unresectable stage III patients."
If you have MUP, are you by definition — and for various purposes — in the "unresectable" category, along with patients who have identifiable tumors in a location too dangerous to touch, etc.? Have been reading an older thread here titled, "What is Unresectable Stage III Melanoma," and have learned a lot about procurement (or not) of treatment based on these definitions.
Is it usual to have a path report specify a diagnosis of "metastatic melanoma," with no explicit reference to staging?
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- October 10, 2014 at 12:40 am
Hard todo stgingif no primary was found. It is not necessarily Stage III. III is when melanoima has traveled from the primary to the closest Node basin. The new lesion yourbrother has could be between the primary and the node basin. Which would leave him at a Stage I or II.
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- October 10, 2014 at 12:40 am
Hard todo stgingif no primary was found. It is not necessarily Stage III. III is when melanoima has traveled from the primary to the closest Node basin. The new lesion yourbrother has could be between the primary and the node basin. Which would leave him at a Stage I or II.
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- October 10, 2014 at 12:40 am
Hard todo stgingif no primary was found. It is not necessarily Stage III. III is when melanoima has traveled from the primary to the closest Node basin. The new lesion yourbrother has could be between the primary and the node basin. Which would leave him at a Stage I or II.
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- October 10, 2014 at 1:27 am
I'm a little confused by your post. What was biopsied to determine his having melanoma?
I had an unknown primary. My melanoma was found in a lymph node in my left axilla (armpit). Doctors discovered the melanoma after an enlarged lymph node containing some suspicious cells was removed. I had a second surgery a month later to remove the rest of the lymph nodes in that axilla. So, having an unknown primary doesn't mean it's not resectable.
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- October 10, 2014 at 1:27 am
I'm a little confused by your post. What was biopsied to determine his having melanoma?
I had an unknown primary. My melanoma was found in a lymph node in my left axilla (armpit). Doctors discovered the melanoma after an enlarged lymph node containing some suspicious cells was removed. I had a second surgery a month later to remove the rest of the lymph nodes in that axilla. So, having an unknown primary doesn't mean it's not resectable.
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- October 10, 2014 at 1:27 am
I'm a little confused by your post. What was biopsied to determine his having melanoma?
I had an unknown primary. My melanoma was found in a lymph node in my left axilla (armpit). Doctors discovered the melanoma after an enlarged lymph node containing some suspicious cells was removed. I had a second surgery a month later to remove the rest of the lymph nodes in that axilla. So, having an unknown primary doesn't mean it's not resectable.
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- October 10, 2014 at 1:38 am
Jerry is correct- if all you have is the path report from the original tumor that was removed there isn't enough information to complete staging. Generally in order to stage they need the original tumor and at least one lymph node from the basin that tumor was draining to. That means they have to figure out (typically with scintigraphy, a type of scan) what lymph nodes it's draining to. My original tumor was on my upper back and given the location they were pretty sure it was draining to my right axilla (armpit), but given the location it could also have been draining into my chest, over to the left axilla, up towards my collar bone (left or right), etc. The scintigraphy showed that the right axilla was the major basin, but there was also some drainage goint to the left as well. As it turned out I had 1 positive node on the right and no positive nodes on the left. If there is really no known primary tumor they can't do that work to find and test the lymph nodes. Often in those cases patients are classified as stage IV because the tumor they did find is assumed to be a metastasis, but melanoma doesn't like to follow rules, so I sometimes wonder if there are only one or a few tumors found is it possible that one of those few tumors is the primary one? If you're not diagnosed until there are multiple tumors in multiple organs, then yes, that is likely a stage IV potentially with an unknown primary.
I think less common primary sites (mucosal, ocular, etc) may get overlooked sometimes as so many primary tumors are cutaneous. To make things more complicated, some melanomas don't have the pigment (amelanotic melanoma) so they may also get overlooked as might primary cutaneous tumors that the immune system attacks and kills, but not before it spreads to other areas of the body.
I guess my question is: is this lesion that was resected really a metastasis or is it actually the primary?
Best of luck to you and your Brother in Law
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- October 10, 2014 at 1:38 am
Jerry is correct- if all you have is the path report from the original tumor that was removed there isn't enough information to complete staging. Generally in order to stage they need the original tumor and at least one lymph node from the basin that tumor was draining to. That means they have to figure out (typically with scintigraphy, a type of scan) what lymph nodes it's draining to. My original tumor was on my upper back and given the location they were pretty sure it was draining to my right axilla (armpit), but given the location it could also have been draining into my chest, over to the left axilla, up towards my collar bone (left or right), etc. The scintigraphy showed that the right axilla was the major basin, but there was also some drainage goint to the left as well. As it turned out I had 1 positive node on the right and no positive nodes on the left. If there is really no known primary tumor they can't do that work to find and test the lymph nodes. Often in those cases patients are classified as stage IV because the tumor they did find is assumed to be a metastasis, but melanoma doesn't like to follow rules, so I sometimes wonder if there are only one or a few tumors found is it possible that one of those few tumors is the primary one? If you're not diagnosed until there are multiple tumors in multiple organs, then yes, that is likely a stage IV potentially with an unknown primary.
I think less common primary sites (mucosal, ocular, etc) may get overlooked sometimes as so many primary tumors are cutaneous. To make things more complicated, some melanomas don't have the pigment (amelanotic melanoma) so they may also get overlooked as might primary cutaneous tumors that the immune system attacks and kills, but not before it spreads to other areas of the body.
I guess my question is: is this lesion that was resected really a metastasis or is it actually the primary?
Best of luck to you and your Brother in Law
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- October 10, 2014 at 1:38 am
Jerry is correct- if all you have is the path report from the original tumor that was removed there isn't enough information to complete staging. Generally in order to stage they need the original tumor and at least one lymph node from the basin that tumor was draining to. That means they have to figure out (typically with scintigraphy, a type of scan) what lymph nodes it's draining to. My original tumor was on my upper back and given the location they were pretty sure it was draining to my right axilla (armpit), but given the location it could also have been draining into my chest, over to the left axilla, up towards my collar bone (left or right), etc. The scintigraphy showed that the right axilla was the major basin, but there was also some drainage goint to the left as well. As it turned out I had 1 positive node on the right and no positive nodes on the left. If there is really no known primary tumor they can't do that work to find and test the lymph nodes. Often in those cases patients are classified as stage IV because the tumor they did find is assumed to be a metastasis, but melanoma doesn't like to follow rules, so I sometimes wonder if there are only one or a few tumors found is it possible that one of those few tumors is the primary one? If you're not diagnosed until there are multiple tumors in multiple organs, then yes, that is likely a stage IV potentially with an unknown primary.
I think less common primary sites (mucosal, ocular, etc) may get overlooked sometimes as so many primary tumors are cutaneous. To make things more complicated, some melanomas don't have the pigment (amelanotic melanoma) so they may also get overlooked as might primary cutaneous tumors that the immune system attacks and kills, but not before it spreads to other areas of the body.
I guess my question is: is this lesion that was resected really a metastasis or is it actually the primary?
Best of luck to you and your Brother in Law
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- October 10, 2014 at 5:02 am
Path reports do NOT stage, because they only know about the lesion in question. Staging includes the entire body, and that can't be seen from a path report. Doctor's stage, path reports don't. Think about it, if your BIL's PET scan hadn't been clear, he would have been stage IV. How would the pathology report from the biopsy know that?
Genetic testing isn't done on a regular basis from the biopsy – unless it is specifically asked for. Pathology reports are not in any standard format. I've seen very detailed to no detail on here over the years. Mostly, they contain the same data in some form, but you can't guarantee it.
Unresectable isn't the same as NED. Your BIL is NED – no evidence of disease. That doesn't mean there isn't disease, it just means that if it is there, it is microscopic. Unresectable is basically a tumor that, because of location/anatomy/whatever, it cannot surgically be removed. Or there are too many tumors to surgically remove all of them. There are plenty of stage IV NED people who do not qualify for any drugs or clinical trials because there is no measurable tumor to gauge if the medicine is effective. Clinical trials want to show efficacy, so without a tumor, they can't get meaningful data. There are trials for adjuvant treatments, but they specifically have to be NED to qualify.
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- October 10, 2014 at 5:02 am
Path reports do NOT stage, because they only know about the lesion in question. Staging includes the entire body, and that can't be seen from a path report. Doctor's stage, path reports don't. Think about it, if your BIL's PET scan hadn't been clear, he would have been stage IV. How would the pathology report from the biopsy know that?
Genetic testing isn't done on a regular basis from the biopsy – unless it is specifically asked for. Pathology reports are not in any standard format. I've seen very detailed to no detail on here over the years. Mostly, they contain the same data in some form, but you can't guarantee it.
Unresectable isn't the same as NED. Your BIL is NED – no evidence of disease. That doesn't mean there isn't disease, it just means that if it is there, it is microscopic. Unresectable is basically a tumor that, because of location/anatomy/whatever, it cannot surgically be removed. Or there are too many tumors to surgically remove all of them. There are plenty of stage IV NED people who do not qualify for any drugs or clinical trials because there is no measurable tumor to gauge if the medicine is effective. Clinical trials want to show efficacy, so without a tumor, they can't get meaningful data. There are trials for adjuvant treatments, but they specifically have to be NED to qualify.
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- October 10, 2014 at 5:02 am
Path reports do NOT stage, because they only know about the lesion in question. Staging includes the entire body, and that can't be seen from a path report. Doctor's stage, path reports don't. Think about it, if your BIL's PET scan hadn't been clear, he would have been stage IV. How would the pathology report from the biopsy know that?
Genetic testing isn't done on a regular basis from the biopsy – unless it is specifically asked for. Pathology reports are not in any standard format. I've seen very detailed to no detail on here over the years. Mostly, they contain the same data in some form, but you can't guarantee it.
Unresectable isn't the same as NED. Your BIL is NED – no evidence of disease. That doesn't mean there isn't disease, it just means that if it is there, it is microscopic. Unresectable is basically a tumor that, because of location/anatomy/whatever, it cannot surgically be removed. Or there are too many tumors to surgically remove all of them. There are plenty of stage IV NED people who do not qualify for any drugs or clinical trials because there is no measurable tumor to gauge if the medicine is effective. Clinical trials want to show efficacy, so without a tumor, they can't get meaningful data. There are trials for adjuvant treatments, but they specifically have to be NED to qualify.
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- October 10, 2014 at 1:57 pm
All: I so appreciate your input…Thank you. Linny, yes, the lesion removed from BIL's arm for biopsy was called metastatic in path report, but PET scan clean. So primary could be a) regressed/other undetected skin tumor OR microscopic elsewhere in body? Or the path report could be wrong, and the lesion already removed is actually the primary? WLE and SLB Tuesday, thank goodness. Two more questions:
Is it correct that SNB should be done before WLE, in the same surgical session? How long does it usually take to get results back from a SNB? Ever same day?
Thanks again to all for sharing your situations and details about path report formats. I can see that melanoma can be tricky and unpredictable. It's hard not to get ahead of ourselves with a path report that says "metastatic." Maybe docs haven't said anything about staging because they can't until SNB.
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- October 10, 2014 at 1:57 pm
All: I so appreciate your input…Thank you. Linny, yes, the lesion removed from BIL's arm for biopsy was called metastatic in path report, but PET scan clean. So primary could be a) regressed/other undetected skin tumor OR microscopic elsewhere in body? Or the path report could be wrong, and the lesion already removed is actually the primary? WLE and SLB Tuesday, thank goodness. Two more questions:
Is it correct that SNB should be done before WLE, in the same surgical session? How long does it usually take to get results back from a SNB? Ever same day?
Thanks again to all for sharing your situations and details about path report formats. I can see that melanoma can be tricky and unpredictable. It's hard not to get ahead of ourselves with a path report that says "metastatic." Maybe docs haven't said anything about staging because they can't until SNB.
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- October 10, 2014 at 6:22 pm
I was never offered the SNB. They just went ahead and did a full lymph node dissection (LND), which means they removed the rest of the lymph nodes from the affected basin. When I asked my oncologist why I wasn't offered the SNB, he stated it was because I had an unknown primary and they weren't sure which path the melanoma cells took to get to the affeced lymph node.
I think you're right about the docs not saying anything about staging until further studies are done.
I hope he's seeing a melanoma specialist at a center of excellence. If he truly had a MUP, you need to realize that it affects only about 2-6% of those diagnosed. Some articles I've read have even given a number of 10%. Basically, it amouts to not a whole heckuva lot. So, if he's not being seen at a center of excellence, I encourage you to seek one out.
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- October 10, 2014 at 6:22 pm
I was never offered the SNB. They just went ahead and did a full lymph node dissection (LND), which means they removed the rest of the lymph nodes from the affected basin. When I asked my oncologist why I wasn't offered the SNB, he stated it was because I had an unknown primary and they weren't sure which path the melanoma cells took to get to the affeced lymph node.
I think you're right about the docs not saying anything about staging until further studies are done.
I hope he's seeing a melanoma specialist at a center of excellence. If he truly had a MUP, you need to realize that it affects only about 2-6% of those diagnosed. Some articles I've read have even given a number of 10%. Basically, it amouts to not a whole heckuva lot. So, if he's not being seen at a center of excellence, I encourage you to seek one out.
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- October 10, 2014 at 6:22 pm
I was never offered the SNB. They just went ahead and did a full lymph node dissection (LND), which means they removed the rest of the lymph nodes from the affected basin. When I asked my oncologist why I wasn't offered the SNB, he stated it was because I had an unknown primary and they weren't sure which path the melanoma cells took to get to the affeced lymph node.
I think you're right about the docs not saying anything about staging until further studies are done.
I hope he's seeing a melanoma specialist at a center of excellence. If he truly had a MUP, you need to realize that it affects only about 2-6% of those diagnosed. Some articles I've read have even given a number of 10%. Basically, it amouts to not a whole heckuva lot. So, if he's not being seen at a center of excellence, I encourage you to seek one out.
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- October 10, 2014 at 10:37 pm
Linny: Thank you….interesting to hear that they never offered you a SNB. These decisions and practices must vary according to practioner and facility, I would guess?
I'd give anything if my BIL would avail himself of Johns Hopkins' expertise, as we live less than an hour from Baltimore. (My late husband was treated for a brainstem tumor there, and got excellent care…he had a very tricky situation that just couldn't be cured).
BIL is intent on handling this himself, and not taking the advice of family or even his buddies. Completely baffling, and so distressing. So far, he doesn't seem to believe that the melanoma he has is metastatic, or a potentially very serious deal. Today, he was "too busy at work" to make sure the hospital had his EKG to prepare for surgery Tuesday, so my sister had to do it. He has researched and looked up nothing (I've been doing this and passing it along to my sister). He has made no effort to find out about experts in our area, or even to seek out an oncologist or ask that someone do so for him. Mystifying. Heartbreaking, for me.
His lovely and loving 18-year-old daughter even told him, "I don't care if you think I'm a controlling b_tch. You need to see an oncologist." He said nothing.
Maybe it's me who needs a doctor, for thinking I can help or control this in any way. I don't want to see happen to my sister what happened to me….a long, sad struggle with an elusive, unpredictable cancer. It just seems that, though we can't change what's already happened, we could mitigate it in some way through knowledge and prompt action.
If this were me, I'd have my face pressed up against the Johns Hopkins door in the wee hours of the morning, begging for help.
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- October 10, 2014 at 10:37 pm
Linny: Thank you….interesting to hear that they never offered you a SNB. These decisions and practices must vary according to practioner and facility, I would guess?
I'd give anything if my BIL would avail himself of Johns Hopkins' expertise, as we live less than an hour from Baltimore. (My late husband was treated for a brainstem tumor there, and got excellent care…he had a very tricky situation that just couldn't be cured).
BIL is intent on handling this himself, and not taking the advice of family or even his buddies. Completely baffling, and so distressing. So far, he doesn't seem to believe that the melanoma he has is metastatic, or a potentially very serious deal. Today, he was "too busy at work" to make sure the hospital had his EKG to prepare for surgery Tuesday, so my sister had to do it. He has researched and looked up nothing (I've been doing this and passing it along to my sister). He has made no effort to find out about experts in our area, or even to seek out an oncologist or ask that someone do so for him. Mystifying. Heartbreaking, for me.
His lovely and loving 18-year-old daughter even told him, "I don't care if you think I'm a controlling b_tch. You need to see an oncologist." He said nothing.
Maybe it's me who needs a doctor, for thinking I can help or control this in any way. I don't want to see happen to my sister what happened to me….a long, sad struggle with an elusive, unpredictable cancer. It just seems that, though we can't change what's already happened, we could mitigate it in some way through knowledge and prompt action.
If this were me, I'd have my face pressed up against the Johns Hopkins door in the wee hours of the morning, begging for help.
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- October 11, 2014 at 12:21 am
It sounds like he's in denial. I'm sorry you all are going through this.
We live about 1.5 hours from Baltimore and I see Dr. Scharfmann over at Johns Hopkins. Small world, eh? When I read his bio and saw that one of his areas of interest was unknown primaries, I knew I had found the right guy for me. Their melanoma department is one of the best in the country.
Their contact information is here, for what it's worth:
Melanoma is not something you want to trifle with. Your BIL has to be very scared but his procrastination and denial can have some pretty serious consequences.
You don't have to go downtown Baltimore to see Dr. Scharfmann, he also has an office in Green Spring Station, which is n Lutherville.That's where I went for my first visit.
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- October 11, 2014 at 12:21 am
It sounds like he's in denial. I'm sorry you all are going through this.
We live about 1.5 hours from Baltimore and I see Dr. Scharfmann over at Johns Hopkins. Small world, eh? When I read his bio and saw that one of his areas of interest was unknown primaries, I knew I had found the right guy for me. Their melanoma department is one of the best in the country.
Their contact information is here, for what it's worth:
Melanoma is not something you want to trifle with. Your BIL has to be very scared but his procrastination and denial can have some pretty serious consequences.
You don't have to go downtown Baltimore to see Dr. Scharfmann, he also has an office in Green Spring Station, which is n Lutherville.That's where I went for my first visit.
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- October 11, 2014 at 12:21 am
It sounds like he's in denial. I'm sorry you all are going through this.
We live about 1.5 hours from Baltimore and I see Dr. Scharfmann over at Johns Hopkins. Small world, eh? When I read his bio and saw that one of his areas of interest was unknown primaries, I knew I had found the right guy for me. Their melanoma department is one of the best in the country.
Their contact information is here, for what it's worth:
Melanoma is not something you want to trifle with. Your BIL has to be very scared but his procrastination and denial can have some pretty serious consequences.
You don't have to go downtown Baltimore to see Dr. Scharfmann, he also has an office in Green Spring Station, which is n Lutherville.That's where I went for my first visit.
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- October 11, 2014 at 1:07 am
He may be in denial, or he may be searching for some way to take back control of his life and his body (I felt the same way and also generally refused advice from friends/family- still do) I didn't like that I was sick and really didn't like that others saw me as sick and in need of assistance- I still don't. I'm a very independant person and all of a sudden it seemed like everyone was treating me like I was going to die and couldn't function as a normal person. I also felt like I was losing my independance and my control over my own life so I took control of what little I could- mainly the researching what was available to me and where to get it. I wasn't rude to anyone, but whenever someone would suggest something I would often say something along the lines of "thanks but that's not the way I'm going to go right now" generally followed by some explanation as to why as I had done some research before making my decisions. I'm sure it frustrated a few people, but you have no idea how frustrating it was for me as the patient to have the education that I do and the ability to do my own research and evaluate research based on its merits and have other people send or suggest (or isnsist) on some line of therapy that I wasn't interested in, or sometimes didn't even qualify for. I felt like everyone was treating me like I was an idiot in addition to treating me like i was dying! I hate being babied, I'm an adult and quite capable of making my own decisions. He may be feeling the same way. Occasionally my sister in law (who lives on the opposite coast from me) would send something interesting that she had found out there that I hadn't come across on my coast, but travel across the country wasn't/isn't really an option for me either (cost, etc).
Don't be too hard on him. Instead of making suggestions, try asking him what his thoughts are on how HE wants to proceed and why. It's his body and his disease so he gets to make the decisions he feels best about, so see what he's thinking, then if you don't agree try (again) asking if he's considered X, and if so what was it about X that made him decide not go that route? If he can explain what options he's considered and why he's chosen the option he chose over the other options, then give him some credit. Although I will say that second (or third, or fourth…) opinions (preferably with a melanoma specialist) are really good advice and worth pushing for a little. Just remember, the more you push, the more he may push back if he's feeling like he has to maintain control of SOMETHING. Seeing a specialis for me actually confirmed that the path I had chosen was the correct one and made me feel a bit better about it.
I know you want to help, but you may have to wait for him to feel more in control of his life before he'll let you. I know I did
Best of luck and hoping for the best for all of you
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- October 11, 2014 at 1:07 am
He may be in denial, or he may be searching for some way to take back control of his life and his body (I felt the same way and also generally refused advice from friends/family- still do) I didn't like that I was sick and really didn't like that others saw me as sick and in need of assistance- I still don't. I'm a very independant person and all of a sudden it seemed like everyone was treating me like I was going to die and couldn't function as a normal person. I also felt like I was losing my independance and my control over my own life so I took control of what little I could- mainly the researching what was available to me and where to get it. I wasn't rude to anyone, but whenever someone would suggest something I would often say something along the lines of "thanks but that's not the way I'm going to go right now" generally followed by some explanation as to why as I had done some research before making my decisions. I'm sure it frustrated a few people, but you have no idea how frustrating it was for me as the patient to have the education that I do and the ability to do my own research and evaluate research based on its merits and have other people send or suggest (or isnsist) on some line of therapy that I wasn't interested in, or sometimes didn't even qualify for. I felt like everyone was treating me like I was an idiot in addition to treating me like i was dying! I hate being babied, I'm an adult and quite capable of making my own decisions. He may be feeling the same way. Occasionally my sister in law (who lives on the opposite coast from me) would send something interesting that she had found out there that I hadn't come across on my coast, but travel across the country wasn't/isn't really an option for me either (cost, etc).
Don't be too hard on him. Instead of making suggestions, try asking him what his thoughts are on how HE wants to proceed and why. It's his body and his disease so he gets to make the decisions he feels best about, so see what he's thinking, then if you don't agree try (again) asking if he's considered X, and if so what was it about X that made him decide not go that route? If he can explain what options he's considered and why he's chosen the option he chose over the other options, then give him some credit. Although I will say that second (or third, or fourth…) opinions (preferably with a melanoma specialist) are really good advice and worth pushing for a little. Just remember, the more you push, the more he may push back if he's feeling like he has to maintain control of SOMETHING. Seeing a specialis for me actually confirmed that the path I had chosen was the correct one and made me feel a bit better about it.
I know you want to help, but you may have to wait for him to feel more in control of his life before he'll let you. I know I did
Best of luck and hoping for the best for all of you
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- October 11, 2014 at 2:07 am
Linny and Ecc: Thanks so much for your replies….Linny, I'll keep Hopkins info — especially about Dr. Scharfmann — handy in case sis or BIL asks. Sounds like a perfect place for him. This is nothing to trifle with, and that's what I keep trying to get across.
Ecc26, the way you described your situation probably reflects how BIL feels and why he wants to stay in charge. I had a husband who fought a brain tumor for years and years….and I saw and felt along with him everyone's concern, fear, pity, and unending suggestions and opinions…and we often felt like Mr. and Mrs. Walking Dead. We sometimes resented and got tired of saying the two words that became our life: "Please," and "Thank you." It wasn't an independent, "in control" place to be. During those protracted hard times, I learned that it is just as blessed to receive with grace as it is to give. It's often harder.
It is BIL's body and his life — you're right. But when you are married and have an 18-year-old, your spouse and daughter have as much stake in your body and your life as you do. When we pledge ourselves to another, and create new life, we are saying that we understand this and will abide in community. When fear keeps us from doing that, it's sad. My two cents. Thanks again for all your help, and I know I'll have more questions. Unless asked, I'll keep answers to myself!
I do have one more quick one: What is done with results of WLE? Is purpose of WLE to make sure they "get it all" at the site that was biopsied — and also to see how far out the cells have spread in the skin? Is any treatment decision based partially on this, as well as on results of SLNB?
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- October 11, 2014 at 2:07 am
Linny and Ecc: Thanks so much for your replies….Linny, I'll keep Hopkins info — especially about Dr. Scharfmann — handy in case sis or BIL asks. Sounds like a perfect place for him. This is nothing to trifle with, and that's what I keep trying to get across.
Ecc26, the way you described your situation probably reflects how BIL feels and why he wants to stay in charge. I had a husband who fought a brain tumor for years and years….and I saw and felt along with him everyone's concern, fear, pity, and unending suggestions and opinions…and we often felt like Mr. and Mrs. Walking Dead. We sometimes resented and got tired of saying the two words that became our life: "Please," and "Thank you." It wasn't an independent, "in control" place to be. During those protracted hard times, I learned that it is just as blessed to receive with grace as it is to give. It's often harder.
It is BIL's body and his life — you're right. But when you are married and have an 18-year-old, your spouse and daughter have as much stake in your body and your life as you do. When we pledge ourselves to another, and create new life, we are saying that we understand this and will abide in community. When fear keeps us from doing that, it's sad. My two cents. Thanks again for all your help, and I know I'll have more questions. Unless asked, I'll keep answers to myself!
I do have one more quick one: What is done with results of WLE? Is purpose of WLE to make sure they "get it all" at the site that was biopsied — and also to see how far out the cells have spread in the skin? Is any treatment decision based partially on this, as well as on results of SLNB?
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- October 11, 2014 at 2:07 am
Linny and Ecc: Thanks so much for your replies….Linny, I'll keep Hopkins info — especially about Dr. Scharfmann — handy in case sis or BIL asks. Sounds like a perfect place for him. This is nothing to trifle with, and that's what I keep trying to get across.
Ecc26, the way you described your situation probably reflects how BIL feels and why he wants to stay in charge. I had a husband who fought a brain tumor for years and years….and I saw and felt along with him everyone's concern, fear, pity, and unending suggestions and opinions…and we often felt like Mr. and Mrs. Walking Dead. We sometimes resented and got tired of saying the two words that became our life: "Please," and "Thank you." It wasn't an independent, "in control" place to be. During those protracted hard times, I learned that it is just as blessed to receive with grace as it is to give. It's often harder.
It is BIL's body and his life — you're right. But when you are married and have an 18-year-old, your spouse and daughter have as much stake in your body and your life as you do. When we pledge ourselves to another, and create new life, we are saying that we understand this and will abide in community. When fear keeps us from doing that, it's sad. My two cents. Thanks again for all your help, and I know I'll have more questions. Unless asked, I'll keep answers to myself!
I do have one more quick one: What is done with results of WLE? Is purpose of WLE to make sure they "get it all" at the site that was biopsied — and also to see how far out the cells have spread in the skin? Is any treatment decision based partially on this, as well as on results of SLNB?
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- October 11, 2014 at 3:37 am
Yes to both of your questions regarding WLE and SNB
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- October 11, 2014 at 3:37 am
Yes to both of your questions regarding WLE and SNB
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- October 11, 2014 at 3:37 am
Yes to both of your questions regarding WLE and SNB
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- October 11, 2014 at 11:24 am
Hi. I am married, though given this battle we haven't had an opportunity to have children yet. I know how hard this is on my husband, and how lucky I am to have such a wonderful and supportive spouse. I try very hard to make things as easy for him as I can and often that means going to my appointments by myself and making the medical decisions about my treatment because I'm the one that has the time to research them properly, think about them, and ask the questions, and it means that there's one less thing for him to think/worry about. With some of the setbacks we've had I don't think I'd still be here without him. Being here for him really is a big part of why I'm still alive. Every time I get a bad scan result or a therapy fails and I melt into a puddle he's there for me and the reason that I don't remain a puddle very long is because I simply can't handle the idea of leaving him by himself in this world. I just can't do that to him, so I pick myself up and figure out where we go from here and keep putting one foot in front of the other. So far that's kept me going, but he is everything and the only way I know how to ease his burden (which sometimes I think is worse than my own) is to take some of the responsibilities regarding my care off of his shoulders. After my initial diagnosis I was unable to work for a year, then when I progressed to stage IV and was about to start IL-2 we decided then was not the best time to go job hunting, then when that failed….. you get the pattern. The result has been that I have not been working/contributing to income really since 2006 (my diagnosis was 2011, but I was in school from 2006-2010, then was actually in Canada on an internship (which are very low paying) from spring 2010-spring2011). I did whatever I could to ease that burden as well and have been grateful for the way my parents raised me and the lessons I learned about thriftyness. This past spring I was doing well enough that we dicided It would be OK for me to apply for a lecturer position that opened up on campus. I applied, was selected for an interview, and actually got the job so I am currently (and happily) employed. I was sure to inform the department head of the relevant parts of my history (basically I told her that I have some health issues and I would do my best to not have them interfere with the job but I have lots of doctors appointments and sometimes things come up fast). As far as my hiring potential- she didn't really care that I had medical issues and I got the job. THey've been very supportive, especially given that I just had to take 2 weeks off for a craniotomy. I'm very lucky in a lot of ways, but I still don't like to burden others with my health issues unless necessary and at this point certainly I am the one person in my family who understands my disease and what my options are the best, so I am the one who can make the best decisions about things. Your BIL may feel the same way (at least to an extent).
Try not to be too hard on him
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- October 11, 2014 at 11:24 am
Hi. I am married, though given this battle we haven't had an opportunity to have children yet. I know how hard this is on my husband, and how lucky I am to have such a wonderful and supportive spouse. I try very hard to make things as easy for him as I can and often that means going to my appointments by myself and making the medical decisions about my treatment because I'm the one that has the time to research them properly, think about them, and ask the questions, and it means that there's one less thing for him to think/worry about. With some of the setbacks we've had I don't think I'd still be here without him. Being here for him really is a big part of why I'm still alive. Every time I get a bad scan result or a therapy fails and I melt into a puddle he's there for me and the reason that I don't remain a puddle very long is because I simply can't handle the idea of leaving him by himself in this world. I just can't do that to him, so I pick myself up and figure out where we go from here and keep putting one foot in front of the other. So far that's kept me going, but he is everything and the only way I know how to ease his burden (which sometimes I think is worse than my own) is to take some of the responsibilities regarding my care off of his shoulders. After my initial diagnosis I was unable to work for a year, then when I progressed to stage IV and was about to start IL-2 we decided then was not the best time to go job hunting, then when that failed….. you get the pattern. The result has been that I have not been working/contributing to income really since 2006 (my diagnosis was 2011, but I was in school from 2006-2010, then was actually in Canada on an internship (which are very low paying) from spring 2010-spring2011). I did whatever I could to ease that burden as well and have been grateful for the way my parents raised me and the lessons I learned about thriftyness. This past spring I was doing well enough that we dicided It would be OK for me to apply for a lecturer position that opened up on campus. I applied, was selected for an interview, and actually got the job so I am currently (and happily) employed. I was sure to inform the department head of the relevant parts of my history (basically I told her that I have some health issues and I would do my best to not have them interfere with the job but I have lots of doctors appointments and sometimes things come up fast). As far as my hiring potential- she didn't really care that I had medical issues and I got the job. THey've been very supportive, especially given that I just had to take 2 weeks off for a craniotomy. I'm very lucky in a lot of ways, but I still don't like to burden others with my health issues unless necessary and at this point certainly I am the one person in my family who understands my disease and what my options are the best, so I am the one who can make the best decisions about things. Your BIL may feel the same way (at least to an extent).
Try not to be too hard on him
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- October 11, 2014 at 11:24 am
Hi. I am married, though given this battle we haven't had an opportunity to have children yet. I know how hard this is on my husband, and how lucky I am to have such a wonderful and supportive spouse. I try very hard to make things as easy for him as I can and often that means going to my appointments by myself and making the medical decisions about my treatment because I'm the one that has the time to research them properly, think about them, and ask the questions, and it means that there's one less thing for him to think/worry about. With some of the setbacks we've had I don't think I'd still be here without him. Being here for him really is a big part of why I'm still alive. Every time I get a bad scan result or a therapy fails and I melt into a puddle he's there for me and the reason that I don't remain a puddle very long is because I simply can't handle the idea of leaving him by himself in this world. I just can't do that to him, so I pick myself up and figure out where we go from here and keep putting one foot in front of the other. So far that's kept me going, but he is everything and the only way I know how to ease his burden (which sometimes I think is worse than my own) is to take some of the responsibilities regarding my care off of his shoulders. After my initial diagnosis I was unable to work for a year, then when I progressed to stage IV and was about to start IL-2 we decided then was not the best time to go job hunting, then when that failed….. you get the pattern. The result has been that I have not been working/contributing to income really since 2006 (my diagnosis was 2011, but I was in school from 2006-2010, then was actually in Canada on an internship (which are very low paying) from spring 2010-spring2011). I did whatever I could to ease that burden as well and have been grateful for the way my parents raised me and the lessons I learned about thriftyness. This past spring I was doing well enough that we dicided It would be OK for me to apply for a lecturer position that opened up on campus. I applied, was selected for an interview, and actually got the job so I am currently (and happily) employed. I was sure to inform the department head of the relevant parts of my history (basically I told her that I have some health issues and I would do my best to not have them interfere with the job but I have lots of doctors appointments and sometimes things come up fast). As far as my hiring potential- she didn't really care that I had medical issues and I got the job. THey've been very supportive, especially given that I just had to take 2 weeks off for a craniotomy. I'm very lucky in a lot of ways, but I still don't like to burden others with my health issues unless necessary and at this point certainly I am the one person in my family who understands my disease and what my options are the best, so I am the one who can make the best decisions about things. Your BIL may feel the same way (at least to an extent).
Try not to be too hard on him
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- October 11, 2014 at 1:39 pm
For me, I couldn't have been diagnosed at a worse time: Christmastime in 2010. Also have a birthday around that time. I was depressed, not to mention scared $hitless. We didn't go anywhere for New Year's that year nor did we have people over because I didn't want to deal with a "pity party".
But some dear friends kept after me and the one piece of advice that turned the corner for me was when one of them equated this to being a new routine and to suddenly be put into that situation is very scary. The stress wasn't on the disease itself, but the new routine. He reassured me that once I adjusted I'd be OK. And you know what, he was right! Once I got used to the new routine things got better and I was able to ditch the anti-depressants.
Meeting Dr. Scharfmann helped too. He was able to allay many of my fears and give me reassurance that my life will return to normal, which it essentially has — I just have a new routine. LOL.
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- October 11, 2014 at 8:08 pm
All: Thanks for the great replies…they really help. Linny, you're right about getting into a routine and becoming accustomed to a "new normal" after the initial shock wears off. This happened to my late husband and me after every disease advance/brain surgery, etc., and we eventually settled back down and accepted where we were.
Ecc, thanks again for your perspective. My beloved late husband never wanted me to feel burdened by his illness and limitations and was the best man on the face of the earth. The truth was, though, that no matter how hard he tried to do that, I was worried and scared — under the surface — all the time. On several occasions, it took a long time for him to find work again after recovering from a brain surgery (and it tended to be lower-paying work), and I earned the lion's share of our living during our marriage. He was not able to drive, so I did the driving. We decided not to have children mostly because I found the prospect daunting in terms of time, energy, and our financial resources. I just couldn't do it.
I think I'm reacting to my brother-in-law's situation as strongly as I am due to the fear, loss, and trauma that surrounded my husband's very long and progressive illness, and his death. This brings back stark fear for me, and an urge to throw everything I have at the situation. Do you know what I mean? I have NOT shared this with BIL, of course. And I have not been intrusive or bossy to him. I'm just loading sis with melanoma info LOL.
Thanks to all for great info, good counsel, and sound perspective. I realize I am projecting my own fears onto what's happening. It's 4:08…52 minutes 'til that glass of wine….
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- October 11, 2014 at 9:09 pm
Ecc: I want to add thanks for sharing your story with me…Though I was a spouse of a loved one with a life-threatening illness, I couldn't be in his shoes. Do you know how valuable and kind it is of you to spend time on this forum with someone like me? Thank you thank you.
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- October 11, 2014 at 9:09 pm
Ecc: I want to add thanks for sharing your story with me…Though I was a spouse of a loved one with a life-threatening illness, I couldn't be in his shoes. Do you know how valuable and kind it is of you to spend time on this forum with someone like me? Thank you thank you.
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- October 11, 2014 at 9:09 pm
Ecc: I want to add thanks for sharing your story with me…Though I was a spouse of a loved one with a life-threatening illness, I couldn't be in his shoes. Do you know how valuable and kind it is of you to spend time on this forum with someone like me? Thank you thank you.
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- October 11, 2014 at 8:08 pm
All: Thanks for the great replies…they really help. Linny, you're right about getting into a routine and becoming accustomed to a "new normal" after the initial shock wears off. This happened to my late husband and me after every disease advance/brain surgery, etc., and we eventually settled back down and accepted where we were.
Ecc, thanks again for your perspective. My beloved late husband never wanted me to feel burdened by his illness and limitations and was the best man on the face of the earth. The truth was, though, that no matter how hard he tried to do that, I was worried and scared — under the surface — all the time. On several occasions, it took a long time for him to find work again after recovering from a brain surgery (and it tended to be lower-paying work), and I earned the lion's share of our living during our marriage. He was not able to drive, so I did the driving. We decided not to have children mostly because I found the prospect daunting in terms of time, energy, and our financial resources. I just couldn't do it.
I think I'm reacting to my brother-in-law's situation as strongly as I am due to the fear, loss, and trauma that surrounded my husband's very long and progressive illness, and his death. This brings back stark fear for me, and an urge to throw everything I have at the situation. Do you know what I mean? I have NOT shared this with BIL, of course. And I have not been intrusive or bossy to him. I'm just loading sis with melanoma info LOL.
Thanks to all for great info, good counsel, and sound perspective. I realize I am projecting my own fears onto what's happening. It's 4:08…52 minutes 'til that glass of wine….
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- October 11, 2014 at 8:08 pm
All: Thanks for the great replies…they really help. Linny, you're right about getting into a routine and becoming accustomed to a "new normal" after the initial shock wears off. This happened to my late husband and me after every disease advance/brain surgery, etc., and we eventually settled back down and accepted where we were.
Ecc, thanks again for your perspective. My beloved late husband never wanted me to feel burdened by his illness and limitations and was the best man on the face of the earth. The truth was, though, that no matter how hard he tried to do that, I was worried and scared — under the surface — all the time. On several occasions, it took a long time for him to find work again after recovering from a brain surgery (and it tended to be lower-paying work), and I earned the lion's share of our living during our marriage. He was not able to drive, so I did the driving. We decided not to have children mostly because I found the prospect daunting in terms of time, energy, and our financial resources. I just couldn't do it.
I think I'm reacting to my brother-in-law's situation as strongly as I am due to the fear, loss, and trauma that surrounded my husband's very long and progressive illness, and his death. This brings back stark fear for me, and an urge to throw everything I have at the situation. Do you know what I mean? I have NOT shared this with BIL, of course. And I have not been intrusive or bossy to him. I'm just loading sis with melanoma info LOL.
Thanks to all for great info, good counsel, and sound perspective. I realize I am projecting my own fears onto what's happening. It's 4:08…52 minutes 'til that glass of wine….
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- October 11, 2014 at 1:39 pm
For me, I couldn't have been diagnosed at a worse time: Christmastime in 2010. Also have a birthday around that time. I was depressed, not to mention scared $hitless. We didn't go anywhere for New Year's that year nor did we have people over because I didn't want to deal with a "pity party".
But some dear friends kept after me and the one piece of advice that turned the corner for me was when one of them equated this to being a new routine and to suddenly be put into that situation is very scary. The stress wasn't on the disease itself, but the new routine. He reassured me that once I adjusted I'd be OK. And you know what, he was right! Once I got used to the new routine things got better and I was able to ditch the anti-depressants.
Meeting Dr. Scharfmann helped too. He was able to allay many of my fears and give me reassurance that my life will return to normal, which it essentially has — I just have a new routine. LOL.
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- October 11, 2014 at 1:39 pm
For me, I couldn't have been diagnosed at a worse time: Christmastime in 2010. Also have a birthday around that time. I was depressed, not to mention scared $hitless. We didn't go anywhere for New Year's that year nor did we have people over because I didn't want to deal with a "pity party".
But some dear friends kept after me and the one piece of advice that turned the corner for me was when one of them equated this to being a new routine and to suddenly be put into that situation is very scary. The stress wasn't on the disease itself, but the new routine. He reassured me that once I adjusted I'd be OK. And you know what, he was right! Once I got used to the new routine things got better and I was able to ditch the anti-depressants.
Meeting Dr. Scharfmann helped too. He was able to allay many of my fears and give me reassurance that my life will return to normal, which it essentially has — I just have a new routine. LOL.
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- October 11, 2014 at 1:07 am
He may be in denial, or he may be searching for some way to take back control of his life and his body (I felt the same way and also generally refused advice from friends/family- still do) I didn't like that I was sick and really didn't like that others saw me as sick and in need of assistance- I still don't. I'm a very independant person and all of a sudden it seemed like everyone was treating me like I was going to die and couldn't function as a normal person. I also felt like I was losing my independance and my control over my own life so I took control of what little I could- mainly the researching what was available to me and where to get it. I wasn't rude to anyone, but whenever someone would suggest something I would often say something along the lines of "thanks but that's not the way I'm going to go right now" generally followed by some explanation as to why as I had done some research before making my decisions. I'm sure it frustrated a few people, but you have no idea how frustrating it was for me as the patient to have the education that I do and the ability to do my own research and evaluate research based on its merits and have other people send or suggest (or isnsist) on some line of therapy that I wasn't interested in, or sometimes didn't even qualify for. I felt like everyone was treating me like I was an idiot in addition to treating me like i was dying! I hate being babied, I'm an adult and quite capable of making my own decisions. He may be feeling the same way. Occasionally my sister in law (who lives on the opposite coast from me) would send something interesting that she had found out there that I hadn't come across on my coast, but travel across the country wasn't/isn't really an option for me either (cost, etc).
Don't be too hard on him. Instead of making suggestions, try asking him what his thoughts are on how HE wants to proceed and why. It's his body and his disease so he gets to make the decisions he feels best about, so see what he's thinking, then if you don't agree try (again) asking if he's considered X, and if so what was it about X that made him decide not go that route? If he can explain what options he's considered and why he's chosen the option he chose over the other options, then give him some credit. Although I will say that second (or third, or fourth…) opinions (preferably with a melanoma specialist) are really good advice and worth pushing for a little. Just remember, the more you push, the more he may push back if he's feeling like he has to maintain control of SOMETHING. Seeing a specialis for me actually confirmed that the path I had chosen was the correct one and made me feel a bit better about it.
I know you want to help, but you may have to wait for him to feel more in control of his life before he'll let you. I know I did
Best of luck and hoping for the best for all of you
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- October 10, 2014 at 10:37 pm
Linny: Thank you….interesting to hear that they never offered you a SNB. These decisions and practices must vary according to practioner and facility, I would guess?
I'd give anything if my BIL would avail himself of Johns Hopkins' expertise, as we live less than an hour from Baltimore. (My late husband was treated for a brainstem tumor there, and got excellent care…he had a very tricky situation that just couldn't be cured).
BIL is intent on handling this himself, and not taking the advice of family or even his buddies. Completely baffling, and so distressing. So far, he doesn't seem to believe that the melanoma he has is metastatic, or a potentially very serious deal. Today, he was "too busy at work" to make sure the hospital had his EKG to prepare for surgery Tuesday, so my sister had to do it. He has researched and looked up nothing (I've been doing this and passing it along to my sister). He has made no effort to find out about experts in our area, or even to seek out an oncologist or ask that someone do so for him. Mystifying. Heartbreaking, for me.
His lovely and loving 18-year-old daughter even told him, "I don't care if you think I'm a controlling b_tch. You need to see an oncologist." He said nothing.
Maybe it's me who needs a doctor, for thinking I can help or control this in any way. I don't want to see happen to my sister what happened to me….a long, sad struggle with an elusive, unpredictable cancer. It just seems that, though we can't change what's already happened, we could mitigate it in some way through knowledge and prompt action.
If this were me, I'd have my face pressed up against the Johns Hopkins door in the wee hours of the morning, begging for help.
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- October 10, 2014 at 1:57 pm
All: I so appreciate your input…Thank you. Linny, yes, the lesion removed from BIL's arm for biopsy was called metastatic in path report, but PET scan clean. So primary could be a) regressed/other undetected skin tumor OR microscopic elsewhere in body? Or the path report could be wrong, and the lesion already removed is actually the primary? WLE and SLB Tuesday, thank goodness. Two more questions:
Is it correct that SNB should be done before WLE, in the same surgical session? How long does it usually take to get results back from a SNB? Ever same day?
Thanks again to all for sharing your situations and details about path report formats. I can see that melanoma can be tricky and unpredictable. It's hard not to get ahead of ourselves with a path report that says "metastatic." Maybe docs haven't said anything about staging because they can't until SNB.
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