› Forums › General Melanoma Community › Just Diagnosed – Small Town in Western Kansas
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RMcLegal.
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- June 19, 2011 at 8:56 pm
Lab results from a mole removal say: Malignant Melanoma, Superficial Spreading Type, Clarks Level II, Breslow Thickness 0.4 MM, Margins Negative.
More details are in my profile.
I'm not having much luck finding Doctors in Kansas that Specialize in Melanoma treatment. If anyone has a recommendation for a DR. in Kansas it would be appreciated.
A friend has advised me not to mess around and just get to a research facility. Is that sound advice?
Lab results from a mole removal say: Malignant Melanoma, Superficial Spreading Type, Clarks Level II, Breslow Thickness 0.4 MM, Margins Negative.
More details are in my profile.
I'm not having much luck finding Doctors in Kansas that Specialize in Melanoma treatment. If anyone has a recommendation for a DR. in Kansas it would be appreciated.
A friend has advised me not to mess around and just get to a research facility. Is that sound advice?
From the list provide here at MRF the University of Colorado Cancer Center is the closest but I haven't found a Dr. Specializing in Melanoma. How important is that?
M. D. Anderson, Mayo and St Louis University School of Medicine are all about the same distance for me to travel. I have a daughter living in St Louis so leaning towards St Louis University. Has anyone here been treated there?
Any and all advice will be appreciated.
Thanks,
Alan
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- June 19, 2011 at 9:50 pm
Hi Alan, sorry you've become a guest of the Hotel Melanoma. I was diagnosed Stage IIIc back in 2003 and have been treated at the University of Colorado Cancer Center. It's a first-tier melanoma treatment center. My doc is Karl Lewis M.D., and the head of the clinic is Rene Gonzalez M.D. There's a link on my blog to UCCC's melanoma program. I'd be glad to help you in any way I can.
Best wishes, Rich (originally from Wichita).
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- June 20, 2011 at 3:25 pm
Rick,
Just getting back to you. Been busy trying to get appointment etc set up. Thanks for the info. I have found both Doctor's you mentioned at the University of Colorado Hospital website. Yesterday I had done a search there for a Melanoma Specialist but came up with nothing but didn't take time to search further. Shame on me. I have ask my local Dr to have the pathology slides sent to them for a second opinion but don't know yet if that is going to happen. So far this morning have only been able to talk to office people. A person from my Dr's office just called while writting this. She said the Dr. said I didn't need to see the Dermatologist because the excision she had done was large enough due to the fact that the pathology report had said the edges were clear. Dr. did say she may want me to see a Melanoma Specialist (that if I wanted to see a specialist she would rather I see a Melanoma Specialist than a Dermatologist) but like me they were not finding a Melanoma Specialist at the University of Colorado (Dr wanted to see his credentials before seeing about appointment) so thanks to you I was able to help them find Dr. Karl Lewis & Dr. Rene Gonzalez. You and the people on here are the greatest.
FOOTNOTE: My middle daughter is head of x-ray department at our local hospital. She just called and said she had ran into my Dr. in the hall & that the Dr. was trying to decide whether to send me to Dr. Lewis or Dr. Gonzalez.
Alan
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- June 20, 2011 at 3:25 pm
Rick,
Just getting back to you. Been busy trying to get appointment etc set up. Thanks for the info. I have found both Doctor's you mentioned at the University of Colorado Hospital website. Yesterday I had done a search there for a Melanoma Specialist but came up with nothing but didn't take time to search further. Shame on me. I have ask my local Dr to have the pathology slides sent to them for a second opinion but don't know yet if that is going to happen. So far this morning have only been able to talk to office people. A person from my Dr's office just called while writting this. She said the Dr. said I didn't need to see the Dermatologist because the excision she had done was large enough due to the fact that the pathology report had said the edges were clear. Dr. did say she may want me to see a Melanoma Specialist (that if I wanted to see a specialist she would rather I see a Melanoma Specialist than a Dermatologist) but like me they were not finding a Melanoma Specialist at the University of Colorado (Dr wanted to see his credentials before seeing about appointment) so thanks to you I was able to help them find Dr. Karl Lewis & Dr. Rene Gonzalez. You and the people on here are the greatest.
FOOTNOTE: My middle daughter is head of x-ray department at our local hospital. She just called and said she had ran into my Dr. in the hall & that the Dr. was trying to decide whether to send me to Dr. Lewis or Dr. Gonzalez.
Alan
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- June 20, 2011 at 4:49 pm
Hi Alan, very glad to help. I'm not a doc and don't purport to give medical advice, so I wouldn't venture a guess whether you need to have a wide local excision or lymph node biopsy or just "wait and see" as the next step. But I do believe that for your personal peace of mind (and that of your family) you do want to see a melanoma specialist for a consultation, second opinion, or whatever you want to call it regarding next steps and follow up protocol. If all you need to do at this point is wait and see, that's great, but you'll have your foot in the door at UCCC and be able to see them quicker if you ever need to in the future. You won't go wrong with either Lewis or Gonzalez, and these guys work as a team regardless of which doc you're assigned to at this clinic. I've seen both, but prefer Lewis because I've been with him for nearly 8 years and like his manner and style. Gonzalez has made me angry a time or two, but it's just a matter of style and nothing about his skills. Best wishes to you. Rich
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- June 20, 2011 at 4:49 pm
Hi Alan, very glad to help. I'm not a doc and don't purport to give medical advice, so I wouldn't venture a guess whether you need to have a wide local excision or lymph node biopsy or just "wait and see" as the next step. But I do believe that for your personal peace of mind (and that of your family) you do want to see a melanoma specialist for a consultation, second opinion, or whatever you want to call it regarding next steps and follow up protocol. If all you need to do at this point is wait and see, that's great, but you'll have your foot in the door at UCCC and be able to see them quicker if you ever need to in the future. You won't go wrong with either Lewis or Gonzalez, and these guys work as a team regardless of which doc you're assigned to at this clinic. I've seen both, but prefer Lewis because I've been with him for nearly 8 years and like his manner and style. Gonzalez has made me angry a time or two, but it's just a matter of style and nothing about his skills. Best wishes to you. Rich
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- June 22, 2011 at 5:01 pm
Rich,
I have an appointment with Dr Lewis July 6th. Will wait and see what he has to say. If my memory does not fail me I will tell him I have been communicating with you. You guys are great!!!
Thanks,
Alan
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- June 22, 2011 at 5:01 pm
Rich,
I have an appointment with Dr Lewis July 6th. Will wait and see what he has to say. If my memory does not fail me I will tell him I have been communicating with you. You guys are great!!!
Thanks,
Alan
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- June 22, 2011 at 5:02 pm
Rich,
I have an appointment with Dr Lewis July 6th. Will wait and see what he has to say. If my memory does not fail me I will tell him I have been communicating with you. You guys are great!!!
Thanks,
Alan
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- June 22, 2011 at 5:27 pm
Alan, that's great. I think you'll really like Dr. Lewis, he's a very nice fellow in addition to being a fine doc and he's very easy to talk to and welcomes questions. The one thing I had to adjust to with Dr. Lewis is that he has no patient poker face– if he's worried about you, you'll know it. But on the flip side, when he tells me he think's there's a good chance my melanoma is gone for good then I know he really believes that and he isn't just trying to make me feel better. If you remember, please give him my warmest regards.
Rich McDonald
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- June 22, 2011 at 5:27 pm
Alan, that's great. I think you'll really like Dr. Lewis, he's a very nice fellow in addition to being a fine doc and he's very easy to talk to and welcomes questions. The one thing I had to adjust to with Dr. Lewis is that he has no patient poker face– if he's worried about you, you'll know it. But on the flip side, when he tells me he think's there's a good chance my melanoma is gone for good then I know he really believes that and he isn't just trying to make me feel better. If you remember, please give him my warmest regards.
Rich McDonald
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- June 22, 2011 at 5:59 pm
Rich,
Dang, you are fast. 🙂 Cool, I feel better already. Just made it to your blog & found out where you live. We just passed by Monument a few days before I got the lab report back. My wife & I have a Bed & Breakfast in Scott City. We have 4 ladies from Colorado Springs that have been staying with us for 10 years when they come to the whimmydiddle. http://www.whimmydiddle.org/ They have been wanting us to come visit them. My wife is being treated at National Jewish Hospital so we went & had dinner with them the last trip. And I will be sure & give Dr. Lewis your regards & also tell him he owes you a finders fee.
Alan
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- June 22, 2011 at 5:59 pm
Rich,
Dang, you are fast. 🙂 Cool, I feel better already. Just made it to your blog & found out where you live. We just passed by Monument a few days before I got the lab report back. My wife & I have a Bed & Breakfast in Scott City. We have 4 ladies from Colorado Springs that have been staying with us for 10 years when they come to the whimmydiddle. http://www.whimmydiddle.org/ They have been wanting us to come visit them. My wife is being treated at National Jewish Hospital so we went & had dinner with them the last trip. And I will be sure & give Dr. Lewis your regards & also tell him he owes you a finders fee.
Alan
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- July 10, 2011 at 2:38 pm
Hey Rich,
Everything went well. I liked Dr Lewis. He was straight forward, didn't beat around the bush and I like that. Said the WLE was a given but discussed the lymph node biopsy with some of the other Dr's. They all decided that since one edge of the mole has somewhat ulcerated and since it was a fast growing type they should do it. So I'm scheduled for surgery the 20th of July. Dr. Nicole Kounalaksi will do the WLE and biopsy. She is young but my wife and I both liked her. She was able to get my pre-op exam done while we were out there so there was no question about me being ok for surgery. So it is onward and forward then wait for the biopsy report. I'm optimistic but whatever the results are I'm confident Dr. Lewis will handle it well.
I did remember to give him your regards but failed to tell him he owed you a finders fee. 🙂
Thanks for your concern,
Alan
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- July 10, 2011 at 2:38 pm
Hey Rich,
Everything went well. I liked Dr Lewis. He was straight forward, didn't beat around the bush and I like that. Said the WLE was a given but discussed the lymph node biopsy with some of the other Dr's. They all decided that since one edge of the mole has somewhat ulcerated and since it was a fast growing type they should do it. So I'm scheduled for surgery the 20th of July. Dr. Nicole Kounalaksi will do the WLE and biopsy. She is young but my wife and I both liked her. She was able to get my pre-op exam done while we were out there so there was no question about me being ok for surgery. So it is onward and forward then wait for the biopsy report. I'm optimistic but whatever the results are I'm confident Dr. Lewis will handle it well.
I did remember to give him your regards but failed to tell him he owed you a finders fee. 🙂
Thanks for your concern,
Alan
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- June 22, 2011 at 5:02 pm
Rich,
I have an appointment with Dr Lewis July 6th. Will wait and see what he has to say. If my memory does not fail me I will tell him I have been communicating with you. You guys are great!!!
Thanks,
Alan
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- June 20, 2011 at 8:33 pm
RED FLAG!
Clean margins are not the same as a WLE. You need 1cm margins on a lesion your size. Unless your pathology report says you have 1cm clear margins in ALL directions (including the deep margin), your PCP is wrong. The WLE is the ONLY thing you can do for a stage I lesion, and you do not want to minimize that. It's your insurance policy. I don't think you need to travel to Denver to have that done, but you need to find a plastic surgeon or a derm that will do this. I'd suggest finding a local derm no matter what you do. It's much easier to run to them if you have any questions than traveling many hours out of state. There are plenty of sites that show the WLE as the standard of care if you need a referral from your PCP for a derm. I probably have some links on my website under the newly diagnosed section.
I've been stage I since 1992 and worked with both a local derm and a cutaneous oncologist. My local derm took care of me equally well as my cutaneous oncologist and he was easier to get into to see. I stay with the cutaneous oncologist now because I've had 3 melanoma primaries and am at much higher risk for more. There isn't much a specialist can do once you get the WLE done which is why I keep saying you'll probably be fine staying close to home. Obviously, that's just my experience, but stage I is mostly about surgery to remove the lesion, then just watching your scar area for pigment regrowth, or any new lesions. Most derms are capable of watching your skin. I do not rely on just my derm's eyes, though. I watch my body myself. Anything that is changing or is totally different than anything else is biopsied. I'm the one who found my three melanomas and if I get more, I expect to be the one to find any future ones.
Best wishes,
Janner
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- June 20, 2011 at 8:33 pm
RED FLAG!
Clean margins are not the same as a WLE. You need 1cm margins on a lesion your size. Unless your pathology report says you have 1cm clear margins in ALL directions (including the deep margin), your PCP is wrong. The WLE is the ONLY thing you can do for a stage I lesion, and you do not want to minimize that. It's your insurance policy. I don't think you need to travel to Denver to have that done, but you need to find a plastic surgeon or a derm that will do this. I'd suggest finding a local derm no matter what you do. It's much easier to run to them if you have any questions than traveling many hours out of state. There are plenty of sites that show the WLE as the standard of care if you need a referral from your PCP for a derm. I probably have some links on my website under the newly diagnosed section.
I've been stage I since 1992 and worked with both a local derm and a cutaneous oncologist. My local derm took care of me equally well as my cutaneous oncologist and he was easier to get into to see. I stay with the cutaneous oncologist now because I've had 3 melanoma primaries and am at much higher risk for more. There isn't much a specialist can do once you get the WLE done which is why I keep saying you'll probably be fine staying close to home. Obviously, that's just my experience, but stage I is mostly about surgery to remove the lesion, then just watching your scar area for pigment regrowth, or any new lesions. Most derms are capable of watching your skin. I do not rely on just my derm's eyes, though. I watch my body myself. Anything that is changing or is totally different than anything else is biopsied. I'm the one who found my three melanomas and if I get more, I expect to be the one to find any future ones.
Best wishes,
Janner
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- June 22, 2011 at 5:27 pm
Jenner,
Good info & I appreciate it. Even though my PCP said she excised an area over I CM (required 8 stitches for what that is worth) I was nervous, especially about the depth. The delima I face where I live is that the closest dermatologist is 120 mi and Denver is 280 mi. So I have decided to drive the extra distance to see a melanoma specialist, question him about a WLE etc. and see what he has to say. Then make my decisions from what he advises.
I will keep you posted.
Thanks again,
Alan
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- June 22, 2011 at 6:44 pm
The key is 1cm DEPTH margin. They take the excision down to the muscle fascia. If your PCP didn't do that on the biopsy, then you need the WLE. My first melanoma had an excisional biopsy (like yours it seems) but I still needed an extra 2mm width. Since surgery is the best treatment for melanoma, getting everything out now is the best choice! Get your opinion from the specialist, but I'd still consider getting regular followups with the much closer derm if you like him/her. Just easier if you don't have to travel as far for quick questions and checks.
Good luck!
Janner
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- June 22, 2011 at 6:44 pm
The key is 1cm DEPTH margin. They take the excision down to the muscle fascia. If your PCP didn't do that on the biopsy, then you need the WLE. My first melanoma had an excisional biopsy (like yours it seems) but I still needed an extra 2mm width. Since surgery is the best treatment for melanoma, getting everything out now is the best choice! Get your opinion from the specialist, but I'd still consider getting regular followups with the much closer derm if you like him/her. Just easier if you don't have to travel as far for quick questions and checks.
Good luck!
Janner
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- June 22, 2011 at 5:27 pm
Jenner,
Good info & I appreciate it. Even though my PCP said she excised an area over I CM (required 8 stitches for what that is worth) I was nervous, especially about the depth. The delima I face where I live is that the closest dermatologist is 120 mi and Denver is 280 mi. So I have decided to drive the extra distance to see a melanoma specialist, question him about a WLE etc. and see what he has to say. Then make my decisions from what he advises.
I will keep you posted.
Thanks again,
Alan
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- June 19, 2011 at 9:50 pm
Hi Alan, sorry you've become a guest of the Hotel Melanoma. I was diagnosed Stage IIIc back in 2003 and have been treated at the University of Colorado Cancer Center. It's a first-tier melanoma treatment center. My doc is Karl Lewis M.D., and the head of the clinic is Rene Gonzalez M.D. There's a link on my blog to UCCC's melanoma program. I'd be glad to help you in any way I can.
Best wishes, Rich (originally from Wichita).
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- June 19, 2011 at 9:53 pm
While it is usually best to see a melanoma specialist, I'm not sure traveling to Colorado or Texas is necessary in your case. If you can find a derm who will work with you locally, that might be your best choice. Your lesion is very thin and once you have the WLE (wide local excision), you will likely have no more problems with it. You are either stage IA or stage IB – depends on the number of mitosis on your path report which you didn't specify. SNB (sentinel node biopsies) are not typically done until a lesion is 1mm deep. If you were having a SNB, then a specialist is best although most breast cancer specialists are versed in the SNB as well since they routinely do the SNB for breast cancer.
I had my first melanoma removed by a local derm and I am still NED (no evidence of disease) 19 years later. It was deeper than yours at .58mm. I have since had 2 more primary melanomas (unrelated to the first melanoma). This happens in only about 8% of the melanoma population. Once you have the margins taken, there isn't much more a specialist can do for you. You need to schedule periodic skin checks, practice sun safety and most importantly – watch your own body for change. Truthfully, I think all of these things can be done with a local dermatologist. I doubt you'd get any different treatment with a melanoma specialist at your stage. There aren't any treatment options for stage I past surgery, and scans also are not done for stage I. So if you are comfortable with your derm and he will work with you, I think staying close to home is a valid option.
Best wishes,
Janner
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- June 19, 2011 at 9:56 pm
One more thing, you could consider sending your pathology slides to a melanoma center to have them re-read by a place that sees lots of melanoma. If the results are similar (rarely are reports identical), then again I think it is a valid option to be treated at home. If the report is significantly different, then you might need to re-evaluate.
Janner
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- June 19, 2011 at 9:56 pm
One more thing, you could consider sending your pathology slides to a melanoma center to have them re-read by a place that sees lots of melanoma. If the results are similar (rarely are reports identical), then again I think it is a valid option to be treated at home. If the report is significantly different, then you might need to re-evaluate.
Janner
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- June 19, 2011 at 9:53 pm
While it is usually best to see a melanoma specialist, I'm not sure traveling to Colorado or Texas is necessary in your case. If you can find a derm who will work with you locally, that might be your best choice. Your lesion is very thin and once you have the WLE (wide local excision), you will likely have no more problems with it. You are either stage IA or stage IB – depends on the number of mitosis on your path report which you didn't specify. SNB (sentinel node biopsies) are not typically done until a lesion is 1mm deep. If you were having a SNB, then a specialist is best although most breast cancer specialists are versed in the SNB as well since they routinely do the SNB for breast cancer.
I had my first melanoma removed by a local derm and I am still NED (no evidence of disease) 19 years later. It was deeper than yours at .58mm. I have since had 2 more primary melanomas (unrelated to the first melanoma). This happens in only about 8% of the melanoma population. Once you have the margins taken, there isn't much more a specialist can do for you. You need to schedule periodic skin checks, practice sun safety and most importantly – watch your own body for change. Truthfully, I think all of these things can be done with a local dermatologist. I doubt you'd get any different treatment with a melanoma specialist at your stage. There aren't any treatment options for stage I past surgery, and scans also are not done for stage I. So if you are comfortable with your derm and he will work with you, I think staying close to home is a valid option.
Best wishes,
Janner
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- June 19, 2011 at 11:00 pm
Hi, and welcome to the forum no one wants to be a member of by choice.
Do you have your pathology report? You may wish to get it so you can make yourself more familiar with the terminology.
Also, do you know if it was ulcerated? And what was the mitosis? (rate of cell division)You are either stage 1a or 1b, depending on the mitosis.
We are also fairly similar in diagnosis, as mine was upper center chest, except my depth is .30 mm Breslow, and I am stage 1b due to a 1 mitosis. Other than that, I also have Superficial Spreading Type, and it is Clarks Level II as well.
As Jan said, in your as well as my case. finding a derm who will work with you locally that will perform what is called a WLE or wide local excision, (which is standard protocol) might be your best option, as a SNB (or what is called a sentinel node biopsy) is not usually done unless the Breslow depth is over .75 mm if ulcerated or 1.0 mm if not.
Congratulations as to catching this early, as this is considered a thin low risk lesion. Keep up the derm visits and skin checks watching for change.
Michael stage 1b
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- June 19, 2011 at 11:00 pm
Hi, and welcome to the forum no one wants to be a member of by choice.
Do you have your pathology report? You may wish to get it so you can make yourself more familiar with the terminology.
Also, do you know if it was ulcerated? And what was the mitosis? (rate of cell division)You are either stage 1a or 1b, depending on the mitosis.
We are also fairly similar in diagnosis, as mine was upper center chest, except my depth is .30 mm Breslow, and I am stage 1b due to a 1 mitosis. Other than that, I also have Superficial Spreading Type, and it is Clarks Level II as well.
As Jan said, in your as well as my case. finding a derm who will work with you locally that will perform what is called a WLE or wide local excision, (which is standard protocol) might be your best option, as a SNB (or what is called a sentinel node biopsy) is not usually done unless the Breslow depth is over .75 mm if ulcerated or 1.0 mm if not.
Congratulations as to catching this early, as this is considered a thin low risk lesion. Keep up the derm visits and skin checks watching for change.
Michael stage 1b
.
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- June 20, 2011 at 1:25 am
Hi! I was in North Dakota and it was even worse…I went to Bismarck but then went to Mayo…eventually I moved to Florida to be close to Moffitt…Mayo is good for surgery related to Melanoma but they don't really have a great melanoma program. St Louis might be good…
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- June 20, 2011 at 1:45 pm
This reply is to thank everyone for the information. Especially Rick for getting me straight on The University of Colorado Cancer Center and Janner for suggesting I have the pathology slides sent to a melanoma center to have them re-read by a place that sees lots of melanoma. I will be asking my local Dr. to get them sent to the University of Colorado for a second opinion.
Yesterday I called my kids to let them know & found out my oldest daughter has a friend from High School that is a Dermatologist in Kansas City and had her phone number. I called her and she said I needed the WLE (wide local excision) and then follow-ups every 3 months to a year and suggested a Dermatologist she knows and has confidence in from Hays, Kansas which is only 120 miles.
Unbelievable! You people are right on and so helpful. God Bless & may everyone get nothing but good reports!
Alan
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- June 20, 2011 at 1:45 pm
This reply is to thank everyone for the information. Especially Rick for getting me straight on The University of Colorado Cancer Center and Janner for suggesting I have the pathology slides sent to a melanoma center to have them re-read by a place that sees lots of melanoma. I will be asking my local Dr. to get them sent to the University of Colorado for a second opinion.
Yesterday I called my kids to let them know & found out my oldest daughter has a friend from High School that is a Dermatologist in Kansas City and had her phone number. I called her and she said I needed the WLE (wide local excision) and then follow-ups every 3 months to a year and suggested a Dermatologist she knows and has confidence in from Hays, Kansas which is only 120 miles.
Unbelievable! You people are right on and so helpful. God Bless & may everyone get nothing but good reports!
Alan
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- June 20, 2011 at 1:25 am
Hi! I was in North Dakota and it was even worse…I went to Bismarck but then went to Mayo…eventually I moved to Florida to be close to Moffitt…Mayo is good for surgery related to Melanoma but they don't really have a great melanoma program. St Louis might be good…
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Tagged: cutaneous melanoma
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