› Forums › Cutaneous Melanoma Community › Why will they not remove my mel skin spot?
- This topic has 12 replies, 4 voices, and was last updated 11 years, 8 months ago by
JerryfromFauq.
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- December 16, 2013 at 4:38 am
I'm confused. I"m stage 4 with mel in my bones but they do not want to remove a spot that just appeared on my skin (shoulder blade). This is the first spot the drs have seen on my skin. They say it is not their policy to remove melanoma skin cancer when a patient is being treated for melanoma. Currenty I'm taking ipiluminab(Yervoy). This is a dermatologist that has treated over 1000 melanoma patients and removed some of my non mel spots.
Has anyone come across that and can you explain why?
I'm imagining this skin spot the size of a quarter is like a melanoma factory generating a gazillion cancer cells to mess me up. Basically a couple months before I got the stage 4 I had a similar looking spot on my back that went away in a few weeks and I don't know if it was mel. Now I'm even more worried this spot is going to cause my mel to increase enormously if they don't get rid of it. Thoughts?
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- December 16, 2013 at 4:03 pm
I would never, ever accept the answer of, "It's not our policy" from any doctor about anything! If that is what your doctor really said, that has got to be the stupidest, most patient-insensitive answer I have ever heard. At the very least, you need to call that doctor and find out why he doesn't want to remove your tumor. You MUST be your own best advocate no matter how shy or uncomfortable you feel. So please clarify this with your doctor.
In the meanwhile, I can hazard a guess as to why he doesn't want to remove the surface tumor– only a guess, mind you. One of the biggest problems and worst frustrations when dealing with Stage IV melalnoma is that you can't know whether or not the treatment is working until the next set of scans. That could be weeks or months in the future. Those who are lucky enough (yes, lucky) to have one or more tumors visible on or under the skin have a much easier time of tracking the progress of their treatment. If you (and your doctor) and see the tumor shrinking, that is reassuring. If you can clearly see that the tumor keeps growing, it can signal that the treatment may not be working and they should schedule a CT scan sooner than they might otherwise. If, indeed, all of the tumors are growing, you can get switched to a dfifferent treatment more quickly. The risk of this tumor causing more problems is less than the benefit of being able to easily track the progress of your treatment.
I have no idea if this is what your doctor is doing. You really do need to find out his reasoning. But leaving a surface tumor in place can be a good thing.
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- December 16, 2013 at 4:03 pm
I would never, ever accept the answer of, "It's not our policy" from any doctor about anything! If that is what your doctor really said, that has got to be the stupidest, most patient-insensitive answer I have ever heard. At the very least, you need to call that doctor and find out why he doesn't want to remove your tumor. You MUST be your own best advocate no matter how shy or uncomfortable you feel. So please clarify this with your doctor.
In the meanwhile, I can hazard a guess as to why he doesn't want to remove the surface tumor– only a guess, mind you. One of the biggest problems and worst frustrations when dealing with Stage IV melalnoma is that you can't know whether or not the treatment is working until the next set of scans. That could be weeks or months in the future. Those who are lucky enough (yes, lucky) to have one or more tumors visible on or under the skin have a much easier time of tracking the progress of their treatment. If you (and your doctor) and see the tumor shrinking, that is reassuring. If you can clearly see that the tumor keeps growing, it can signal that the treatment may not be working and they should schedule a CT scan sooner than they might otherwise. If, indeed, all of the tumors are growing, you can get switched to a dfifferent treatment more quickly. The risk of this tumor causing more problems is less than the benefit of being able to easily track the progress of your treatment.
I have no idea if this is what your doctor is doing. You really do need to find out his reasoning. But leaving a surface tumor in place can be a good thing.
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- December 18, 2013 at 3:53 pm
Thanks. Not sure why either but all taken care of now. Back to hoping the ipi works 🙂
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- December 18, 2013 at 3:53 pm
Thanks. Not sure why either but all taken care of now. Back to hoping the ipi works 🙂
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- December 18, 2013 at 3:53 pm
Thanks. Not sure why either but all taken care of now. Back to hoping the ipi works 🙂
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- December 27, 2013 at 4:21 am
I had innumerable lung tumors in Feb 2007 which stabilized for 20 months on IL-2. Then they started growing rapidly and several lymph glands started swelling. I developed innumerable new lung tumors, a new tumor then appeared on my neck. The groin tumor was irritating and it was removed. I and MY Onc agreed on a different (NONE Melanoma approved) systemic treatment. He asked If I would be okay with leaving the visible tumor on my neck to cut down on CT's radiation and use the external tumor to try seeing what the internals were dong. He stated, "The external one won't kill you, it would be the lung ones that could. That was in March 2009. A few of the lung tumors have gone away, most have just sat there. NONE have grown. The neck tumor went down from an obvious nodule to a flat dark spot that I have to look in a mirror to find. While watching the neck tumor, I have gone from monthly scans to bi-annal CT's. As long as the scans match what I see in the mirror, I don't sweat waiting for the scans.
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- December 27, 2013 at 4:21 am
I had innumerable lung tumors in Feb 2007 which stabilized for 20 months on IL-2. Then they started growing rapidly and several lymph glands started swelling. I developed innumerable new lung tumors, a new tumor then appeared on my neck. The groin tumor was irritating and it was removed. I and MY Onc agreed on a different (NONE Melanoma approved) systemic treatment. He asked If I would be okay with leaving the visible tumor on my neck to cut down on CT's radiation and use the external tumor to try seeing what the internals were dong. He stated, "The external one won't kill you, it would be the lung ones that could. That was in March 2009. A few of the lung tumors have gone away, most have just sat there. NONE have grown. The neck tumor went down from an obvious nodule to a flat dark spot that I have to look in a mirror to find. While watching the neck tumor, I have gone from monthly scans to bi-annal CT's. As long as the scans match what I see in the mirror, I don't sweat waiting for the scans.
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- December 27, 2013 at 4:21 am
I had innumerable lung tumors in Feb 2007 which stabilized for 20 months on IL-2. Then they started growing rapidly and several lymph glands started swelling. I developed innumerable new lung tumors, a new tumor then appeared on my neck. The groin tumor was irritating and it was removed. I and MY Onc agreed on a different (NONE Melanoma approved) systemic treatment. He asked If I would be okay with leaving the visible tumor on my neck to cut down on CT's radiation and use the external tumor to try seeing what the internals were dong. He stated, "The external one won't kill you, it would be the lung ones that could. That was in March 2009. A few of the lung tumors have gone away, most have just sat there. NONE have grown. The neck tumor went down from an obvious nodule to a flat dark spot that I have to look in a mirror to find. While watching the neck tumor, I have gone from monthly scans to bi-annal CT's. As long as the scans match what I see in the mirror, I don't sweat waiting for the scans.
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- December 16, 2013 at 4:03 pm
I would never, ever accept the answer of, "It's not our policy" from any doctor about anything! If that is what your doctor really said, that has got to be the stupidest, most patient-insensitive answer I have ever heard. At the very least, you need to call that doctor and find out why he doesn't want to remove your tumor. You MUST be your own best advocate no matter how shy or uncomfortable you feel. So please clarify this with your doctor.
In the meanwhile, I can hazard a guess as to why he doesn't want to remove the surface tumor– only a guess, mind you. One of the biggest problems and worst frustrations when dealing with Stage IV melalnoma is that you can't know whether or not the treatment is working until the next set of scans. That could be weeks or months in the future. Those who are lucky enough (yes, lucky) to have one or more tumors visible on or under the skin have a much easier time of tracking the progress of their treatment. If you (and your doctor) and see the tumor shrinking, that is reassuring. If you can clearly see that the tumor keeps growing, it can signal that the treatment may not be working and they should schedule a CT scan sooner than they might otherwise. If, indeed, all of the tumors are growing, you can get switched to a dfifferent treatment more quickly. The risk of this tumor causing more problems is less than the benefit of being able to easily track the progress of your treatment.
I have no idea if this is what your doctor is doing. You really do need to find out his reasoning. But leaving a surface tumor in place can be a good thing.
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Tagged: cutaneous melanoma
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