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- May 5, 2016 at 2:31 am
I have a 7mm recurrent nodular melanoma on my ankle/heel area. It's about the size of a golfball. Luckily my PET scan and MRI came back pretty good and it showed that there wasn't any hypermetabolism in places other than the tumor which is a good sign that it hasn't spread. I relaxed a little about it since being informed of it.
Yesterday I went to a different clinic than the one I had been using previously because they have better technology for the surgery it was determined that I would need. When I went there they made it into something more serious than I thought they would since my PET and MRI was good. I was told to consider below the knee amputation over the complicated skin flap surgery that has potential for functional complications as well. The idea of below the knee amputation makes my stomach turn but it seems to make some logical sense. I was told it would be less expensive and involve less of a recovery time. It seems ridiculous to me that I would have to do something as extreme for melanoma that's likely just stage 2. I guess it's just a concern about clearing margins and the complications involved in doing so on an ankle. I have an appointment with an orthopedic oncologist to discuss that. Any thoughts?
The surgical oncologist I saw said that she wants me to do immunotherapy and get additional scans (though the scans are something she wanted just somewhere down the road). This confuses me because she hasn't even done a sentinel node biopsy to see if there's any lymph node involvement (which I'm assuming is unlikely since my pet scan didn't suggest that). I thought that was only something that drs considered if there was evidences of spread to lymph nodes or other places. Is it a concern about micro metastasis? Is this only because it is reccurent? Why would they try to do something that the situation doesn't seem to call for? The surgical onc is sending my specimen to a different lab since it hasn't undergone any genetic testing. They wanted to know whether it had the BRAF mutation.
What do you think? Does this even seem appropriate? I feel like I should second guess some of the judgements made. I feel like they're maybe being overly vigilant?
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- May 5, 2016 at 2:50 am
I'm no doctor, but what has been suggested, amputation, seems outrageous. I understand this may be a difficult area to surgically obtain so-called clear margins but I have never heard of anything like this.
First rule on this board is you must be treated by a melanoma specialist. Regular oncologists just won't due. Second, in my opinion various drug therapies and/or radiation would be obvious next steps before doing anything radical. Others here must also have good ideas. Get a second opinion from a specialist at a major institution. Many resources are on this site, and within message threads.
Gary
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- May 5, 2016 at 3:02 am
The surgical oncologist I saw has melanoma listed as a "special interest" on their online profile (along with breast cancer which seems to be their main specialty). I don't know if that's the same thing. I'm going to mayo clinic and I was told that they are one of the best so I feel like I should be somewhat trusting on that basis. I've also seen amputation listed as a surgical solution in some instances like if its on a finger or a toe but surrendering an entire foot seems way extreme to me.
The surgical oncologist said that she wants me to consider it, the plastic surgeon I saw said that's what he would do if he was in my position and I'm going to see an orthopedic oncologist who I guess suggested that solution to the surgical oncologist. I'm guessing he'll be walking me through other options as well.
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- May 5, 2016 at 4:02 am
I agree with what Gary has said. And no, a "special interest" in their profile does NOT mean they are a melanoma specialist. Search Melanoma Onoclogy, Melanoma Clinics, Melanoma Specialist Doctors near your area. As an example, where I get treated it is called a Melanoma Center and the oncologists and dermatologists ONLY deal with melanoma in their practice. Before you do anything drastic, get second, third, fourth opinions if you need to.
Wishing you all the best.
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- May 5, 2016 at 4:02 am
I agree with what Gary has said. And no, a "special interest" in their profile does NOT mean they are a melanoma specialist. Search Melanoma Onoclogy, Melanoma Clinics, Melanoma Specialist Doctors near your area. As an example, where I get treated it is called a Melanoma Center and the oncologists and dermatologists ONLY deal with melanoma in their practice. Before you do anything drastic, get second, third, fourth opinions if you need to.
Wishing you all the best.
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- May 5, 2016 at 4:34 am
I'm not finding any melanoma specific clinics when I search the greater Phoenix area. The melanoma international website lists Mayo clinic (which I'm already going to) and some treatment center in tucson as my local options. The best I could do is call the surgical oncologist at Banner MD Anderson and get his opinion and possibly find people who've had experiences with getting large melanoma's removed in a similar location (ankle/heel area). It might not be realistic for me to find someone who only does melanoma since it seems like a lot of oncs try to cross specialize.
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- May 5, 2016 at 4:34 am
I'm not finding any melanoma specific clinics when I search the greater Phoenix area. The melanoma international website lists Mayo clinic (which I'm already going to) and some treatment center in tucson as my local options. The best I could do is call the surgical oncologist at Banner MD Anderson and get his opinion and possibly find people who've had experiences with getting large melanoma's removed in a similar location (ankle/heel area). It might not be realistic for me to find someone who only does melanoma since it seems like a lot of oncs try to cross specialize.
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- May 5, 2016 at 1:00 pm
Surgical oncologists often have breast cancer and melanoma as specialties because both cancers use sentinel lymph node biopsies. My question is can you find a melanoma specialist in a "medical oncologist", not a surgical. Those are the docs who might offer different treatment options. I might want a medical oncologist opinion because their first solution isn't always surgery but a surgeon always wants to cut.
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- May 5, 2016 at 1:00 pm
Surgical oncologists often have breast cancer and melanoma as specialties because both cancers use sentinel lymph node biopsies. My question is can you find a melanoma specialist in a "medical oncologist", not a surgical. Those are the docs who might offer different treatment options. I might want a medical oncologist opinion because their first solution isn't always surgery but a surgeon always wants to cut.
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- May 5, 2016 at 1:00 pm
Surgical oncologists often have breast cancer and melanoma as specialties because both cancers use sentinel lymph node biopsies. My question is can you find a melanoma specialist in a "medical oncologist", not a surgical. Those are the docs who might offer different treatment options. I might want a medical oncologist opinion because their first solution isn't always surgery but a surgeon always wants to cut.
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- May 5, 2016 at 3:43 pm
MD Anderson is probably the closest top rated place for you to go for melanoma specialists.
What Janner said is true, a lot of melanoma surgeons are also breast surgeons due to the procudure of the sentinel lymph node biopsy crossing over to both cancers. You do need a sentinel lymph node biopsy, I don't see any reason why you wouldn't get one. I had scans before my surgery, nothing showed up. But 4 lymph nodes were taken out for the sentinel lymph node biopsy and 3 were positive for micro met melanoma. You need to be properly staged, and you need a melanoma medical oncologist to chime in about treatment and all of that… not just a surgeon as they are just there for cutting stuff out, not for treatment or long term plans.
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- May 5, 2016 at 4:19 pm
Actually, LA is closer than MDA. There is a MDA clinic in Gilbert but I'm not sure melanoma is a specialty there. I also know Wolfram Samlowski is a melanoma med onc in Vegas. But on a basic google search, I found this doc who is a melanoma specialist medical oncologist at the Arizona Cancer Center. I suspect there are others.
http://uacc.arizona.edu/profile/lee-cranmer
Besides the sentinel node biopsy, I also think breast cancer and melanoma surgeons cross over because they are both superficial surgeries. By that, I mean much of the surgery may take place visibly instead of totally internally like other types of surgeons.
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- May 5, 2016 at 4:19 pm
Actually, LA is closer than MDA. There is a MDA clinic in Gilbert but I'm not sure melanoma is a specialty there. I also know Wolfram Samlowski is a melanoma med onc in Vegas. But on a basic google search, I found this doc who is a melanoma specialist medical oncologist at the Arizona Cancer Center. I suspect there are others.
http://uacc.arizona.edu/profile/lee-cranmer
Besides the sentinel node biopsy, I also think breast cancer and melanoma surgeons cross over because they are both superficial surgeries. By that, I mean much of the surgery may take place visibly instead of totally internally like other types of surgeons.
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- May 5, 2016 at 4:19 pm
Actually, LA is closer than MDA. There is a MDA clinic in Gilbert but I'm not sure melanoma is a specialty there. I also know Wolfram Samlowski is a melanoma med onc in Vegas. But on a basic google search, I found this doc who is a melanoma specialist medical oncologist at the Arizona Cancer Center. I suspect there are others.
http://uacc.arizona.edu/profile/lee-cranmer
Besides the sentinel node biopsy, I also think breast cancer and melanoma surgeons cross over because they are both superficial surgeries. By that, I mean much of the surgery may take place visibly instead of totally internally like other types of surgeons.
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- May 5, 2016 at 3:43 pm
MD Anderson is probably the closest top rated place for you to go for melanoma specialists.
What Janner said is true, a lot of melanoma surgeons are also breast surgeons due to the procudure of the sentinel lymph node biopsy crossing over to both cancers. You do need a sentinel lymph node biopsy, I don't see any reason why you wouldn't get one. I had scans before my surgery, nothing showed up. But 4 lymph nodes were taken out for the sentinel lymph node biopsy and 3 were positive for micro met melanoma. You need to be properly staged, and you need a melanoma medical oncologist to chime in about treatment and all of that… not just a surgeon as they are just there for cutting stuff out, not for treatment or long term plans.
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- May 5, 2016 at 3:43 pm
MD Anderson is probably the closest top rated place for you to go for melanoma specialists.
What Janner said is true, a lot of melanoma surgeons are also breast surgeons due to the procudure of the sentinel lymph node biopsy crossing over to both cancers. You do need a sentinel lymph node biopsy, I don't see any reason why you wouldn't get one. I had scans before my surgery, nothing showed up. But 4 lymph nodes were taken out for the sentinel lymph node biopsy and 3 were positive for micro met melanoma. You need to be properly staged, and you need a melanoma medical oncologist to chime in about treatment and all of that… not just a surgeon as they are just there for cutting stuff out, not for treatment or long term plans.
-
- May 5, 2016 at 4:34 am
I'm not finding any melanoma specific clinics when I search the greater Phoenix area. The melanoma international website lists Mayo clinic (which I'm already going to) and some treatment center in tucson as my local options. The best I could do is call the surgical oncologist at Banner MD Anderson and get his opinion and possibly find people who've had experiences with getting large melanoma's removed in a similar location (ankle/heel area). It might not be realistic for me to find someone who only does melanoma since it seems like a lot of oncs try to cross specialize.
-
- May 5, 2016 at 4:02 am
I agree with what Gary has said. And no, a "special interest" in their profile does NOT mean they are a melanoma specialist. Search Melanoma Onoclogy, Melanoma Clinics, Melanoma Specialist Doctors near your area. As an example, where I get treated it is called a Melanoma Center and the oncologists and dermatologists ONLY deal with melanoma in their practice. Before you do anything drastic, get second, third, fourth opinions if you need to.
Wishing you all the best.
-
- May 5, 2016 at 3:02 am
The surgical oncologist I saw has melanoma listed as a "special interest" on their online profile (along with breast cancer which seems to be their main specialty). I don't know if that's the same thing. I'm going to mayo clinic and I was told that they are one of the best so I feel like I should be somewhat trusting on that basis. I've also seen amputation listed as a surgical solution in some instances like if its on a finger or a toe but surrendering an entire foot seems way extreme to me.
The surgical oncologist said that she wants me to consider it, the plastic surgeon I saw said that's what he would do if he was in my position and I'm going to see an orthopedic oncologist who I guess suggested that solution to the surgical oncologist. I'm guessing he'll be walking me through other options as well.
-
- May 5, 2016 at 3:02 am
The surgical oncologist I saw has melanoma listed as a "special interest" on their online profile (along with breast cancer which seems to be their main specialty). I don't know if that's the same thing. I'm going to mayo clinic and I was told that they are one of the best so I feel like I should be somewhat trusting on that basis. I've also seen amputation listed as a surgical solution in some instances like if its on a finger or a toe but surrendering an entire foot seems way extreme to me.
The surgical oncologist said that she wants me to consider it, the plastic surgeon I saw said that's what he would do if he was in my position and I'm going to see an orthopedic oncologist who I guess suggested that solution to the surgical oncologist. I'm guessing he'll be walking me through other options as well.
-
- May 5, 2016 at 2:50 am
I'm no doctor, but what has been suggested, amputation, seems outrageous. I understand this may be a difficult area to surgically obtain so-called clear margins but I have never heard of anything like this.
First rule on this board is you must be treated by a melanoma specialist. Regular oncologists just won't due. Second, in my opinion various drug therapies and/or radiation would be obvious next steps before doing anything radical. Others here must also have good ideas. Get a second opinion from a specialist at a major institution. Many resources are on this site, and within message threads.
Gary
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- May 5, 2016 at 2:50 am
I'm no doctor, but what has been suggested, amputation, seems outrageous. I understand this may be a difficult area to surgically obtain so-called clear margins but I have never heard of anything like this.
First rule on this board is you must be treated by a melanoma specialist. Regular oncologists just won't due. Second, in my opinion various drug therapies and/or radiation would be obvious next steps before doing anything radical. Others here must also have good ideas. Get a second opinion from a specialist at a major institution. Many resources are on this site, and within message threads.
Gary
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- May 5, 2016 at 2:56 pm
You NEED an expert, this doctor is really great at MDA, please check out his webinar about surgery:
http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- May 5, 2016 at 2:56 pm
You NEED an expert, this doctor is really great at MDA, please check out his webinar about surgery:
http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- May 5, 2016 at 2:56 pm
You NEED an expert, this doctor is really great at MDA, please check out his webinar about surgery:
http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- May 5, 2016 at 4:15 pm
Sorry you are having to go through this. I agree with what others have said. It seems a little drastic to me. Probably 5 or even 3 years ago that might have been something to seriously consider but with the treatments available now I think that is not something I would consider right off the bat. Another clinic with a great reputation is the Angelas clinic in LA. Probably a 5 or 6 hour drive for you. I think Dr. Hamid and maybe Dr. Ribas are there. Others on here can probably confirm that. That's where I would go if I was in Phoenix (MDA is great also but just further away). Good luck.
Brian
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- May 5, 2016 at 4:15 pm
Sorry you are having to go through this. I agree with what others have said. It seems a little drastic to me. Probably 5 or even 3 years ago that might have been something to seriously consider but with the treatments available now I think that is not something I would consider right off the bat. Another clinic with a great reputation is the Angelas clinic in LA. Probably a 5 or 6 hour drive for you. I think Dr. Hamid and maybe Dr. Ribas are there. Others on here can probably confirm that. That's where I would go if I was in Phoenix (MDA is great also but just further away). Good luck.
Brian
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- May 5, 2016 at 7:50 pm
I think the point others have made and I agree with is that more times than not a surgical oncologist is going to recommend surgery. If the surgical solution is amputating the foot then I personally would want to consult with Ribas or Hamid and get there thoughts first. You have nothing to lose by doing so. By not doing so you stand the chance of losing a foot.
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- May 5, 2016 at 7:50 pm
I think the point others have made and I agree with is that more times than not a surgical oncologist is going to recommend surgery. If the surgical solution is amputating the foot then I personally would want to consult with Ribas or Hamid and get there thoughts first. You have nothing to lose by doing so. By not doing so you stand the chance of losing a foot.
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- May 5, 2016 at 7:50 pm
I think the point others have made and I agree with is that more times than not a surgical oncologist is going to recommend surgery. If the surgical solution is amputating the foot then I personally would want to consult with Ribas or Hamid and get there thoughts first. You have nothing to lose by doing so. By not doing so you stand the chance of losing a foot.
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- May 5, 2016 at 4:15 pm
Sorry you are having to go through this. I agree with what others have said. It seems a little drastic to me. Probably 5 or even 3 years ago that might have been something to seriously consider but with the treatments available now I think that is not something I would consider right off the bat. Another clinic with a great reputation is the Angelas clinic in LA. Probably a 5 or 6 hour drive for you. I think Dr. Hamid and maybe Dr. Ribas are there. Others on here can probably confirm that. That's where I would go if I was in Phoenix (MDA is great also but just further away). Good luck.
Brian
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- May 5, 2016 at 9:29 pm
I am sooo NOT any kind of expert and only in the learning stages of this, so please excuse any naivete that rings through but, if they can successfully use gamma knife treatments on the brain, why can they not try this on an ankle?
Best wishes for a successful outcome for you!!!
Barb
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- May 5, 2016 at 9:29 pm
I am sooo NOT any kind of expert and only in the learning stages of this, so please excuse any naivete that rings through but, if they can successfully use gamma knife treatments on the brain, why can they not try this on an ankle?
Best wishes for a successful outcome for you!!!
Barb
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- May 5, 2016 at 9:29 pm
I am sooo NOT any kind of expert and only in the learning stages of this, so please excuse any naivete that rings through but, if they can successfully use gamma knife treatments on the brain, why can they not try this on an ankle?
Best wishes for a successful outcome for you!!!
Barb
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- May 6, 2016 at 12:25 pm
I absolutely second what everyone else has said. If you go to an orthopedic surgeon, they will suggest orthopedic surgery. A doctor only knows their specialty, and ultimately sells their wares. So go to one who specializes in Melanoma (not surgery). It sounds like they are suggesting amputation to make it easier on themselves, not on you. Yes, skin grafting is hard to recover from, but people do so everyday. I’d say 1 – find a specialized oncologist for Melanoma who is located at a center with 2 – a plastics department or a burn unit. They handle skin grafts all the time and you’ll be in better hands for healing.Best of luck!
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- May 6, 2016 at 12:25 pm
I absolutely second what everyone else has said. If you go to an orthopedic surgeon, they will suggest orthopedic surgery. A doctor only knows their specialty, and ultimately sells their wares. So go to one who specializes in Melanoma (not surgery). It sounds like they are suggesting amputation to make it easier on themselves, not on you. Yes, skin grafting is hard to recover from, but people do so everyday. I’d say 1 – find a specialized oncologist for Melanoma who is located at a center with 2 – a plastics department or a burn unit. They handle skin grafts all the time and you’ll be in better hands for healing.Best of luck!
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- May 6, 2016 at 12:25 pm
I absolutely second what everyone else has said. If you go to an orthopedic surgeon, they will suggest orthopedic surgery. A doctor only knows their specialty, and ultimately sells their wares. So go to one who specializes in Melanoma (not surgery). It sounds like they are suggesting amputation to make it easier on themselves, not on you. Yes, skin grafting is hard to recover from, but people do so everyday. I’d say 1 – find a specialized oncologist for Melanoma who is located at a center with 2 – a plastics department or a burn unit. They handle skin grafts all the time and you’ll be in better hands for healing.Best of luck!
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- May 6, 2016 at 2:13 pm
I sense from your posts that you are thinking that your melanoma specialist has to be fairly local. Not so! Find a specialist (at one of the major melanoma centers) and don't worry about the distance. Once a plan is established and started, then you can get help from local doctors. But don't let them call the shots.
I didn't have melanoma (that's my husband) but I had another serious and rare medical condition. I live in Colorado, my diagnosing doctor is in Los Angeles, and my surgeon was at MD Anderson in Houston. I've never regretted traveling for the absolute best care.
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- May 6, 2016 at 2:13 pm
I sense from your posts that you are thinking that your melanoma specialist has to be fairly local. Not so! Find a specialist (at one of the major melanoma centers) and don't worry about the distance. Once a plan is established and started, then you can get help from local doctors. But don't let them call the shots.
I didn't have melanoma (that's my husband) but I had another serious and rare medical condition. I live in Colorado, my diagnosing doctor is in Los Angeles, and my surgeon was at MD Anderson in Houston. I've never regretted traveling for the absolute best care.
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- May 6, 2016 at 2:13 pm
I sense from your posts that you are thinking that your melanoma specialist has to be fairly local. Not so! Find a specialist (at one of the major melanoma centers) and don't worry about the distance. Once a plan is established and started, then you can get help from local doctors. But don't let them call the shots.
I didn't have melanoma (that's my husband) but I had another serious and rare medical condition. I live in Colorado, my diagnosing doctor is in Los Angeles, and my surgeon was at MD Anderson in Houston. I've never regretted traveling for the absolute best care.
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- May 6, 2016 at 3:05 pm
If you are in the Phoenix area I highly recommend Cancer Treatment Center in Goodyear. I had my surgery there in September and I love everything about that place. My oncologist, Dr. Quan, is a melanoma specialist and I can't say enough good about my surgeon, Dr. Wascher. Even my care giver specialized in melanoma. I had stage II and the surgery took care of it so I'm NED now! Priase the Lord. Please call the treatment center for their help.
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- May 6, 2016 at 3:05 pm
If you are in the Phoenix area I highly recommend Cancer Treatment Center in Goodyear. I had my surgery there in September and I love everything about that place. My oncologist, Dr. Quan, is a melanoma specialist and I can't say enough good about my surgeon, Dr. Wascher. Even my care giver specialized in melanoma. I had stage II and the surgery took care of it so I'm NED now! Priase the Lord. Please call the treatment center for their help.
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- May 6, 2016 at 3:05 pm
If you are in the Phoenix area I highly recommend Cancer Treatment Center in Goodyear. I had my surgery there in September and I love everything about that place. My oncologist, Dr. Quan, is a melanoma specialist and I can't say enough good about my surgeon, Dr. Wascher. Even my care giver specialized in melanoma. I had stage II and the surgery took care of it so I'm NED now! Priase the Lord. Please call the treatment center for their help.
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Tagged: cutaneous melanoma
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