› Forums › General Melanoma Community › Hello. And question about how you chose your Oncologist.
- This topic has 28 replies, 11 voices, and was last updated 13 years, 4 months ago by
lhaley.
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- April 26, 2011 at 1:15 am
Hi. I am 38 years old and was diagnosed with Stage IIIB on my upper arm in May 2010. I had two surgeries to excise the area. Two lymphnodes removed, but no cancer found. There were however micorsatellites in the excision area – hence the IIIB staging. I met with MSK and the recommended "watch and wait". I went to NYU and they recommended local radiation. I had a month of radiation in October 2010 at Hackensack Medical Center in NJ because it would be easier to do than to go into NYU every day. (I live in NJ and have a 2 year old
Hi. I am 38 years old and was diagnosed with Stage IIIB on my upper arm in May 2010. I had two surgeries to excise the area. Two lymphnodes removed, but no cancer found. There were however micorsatellites in the excision area – hence the IIIB staging. I met with MSK and the recommended "watch and wait". I went to NYU and they recommended local radiation. I had a month of radiation in October 2010 at Hackensack Medical Center in NJ because it would be easier to do than to go into NYU every day. (I live in NJ and have a 2 year old.)
My recent CT scan showed something on my liver. I had a follow up MRI which showed two hemangeomas (no big deal) and something else that is 6mm. The radiologist noted it as atypical and suggested another MRI in 6 months. My oncologist at Hackensack hasn't offered any other course of action. I feel he isn't very proactive with me. I feel like a number there. I don't feel like I get the attention I deserve. I hate calling the main number and pressing buttons to get to talk to someone, anyone.
SO — my question to all of you is — how did you decide upon your melanoma oncologist? Did you "shop" around? Do you really like the practice? The staff? The doctor? The nurses? Did you travel a great distance to find "the best" doctor for you?
Thanks for any insight! I really need to find another cancer center and I guess I'm just looking for some insight into how others chose theirs.
– Kristin
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- April 26, 2011 at 1:54 am
I think the first go round, WLE and SNB (at least that was for me), we all mostly just end up at where we are sent. I was given two choices for Mel specialists by my Derm and then told I could go to an Onc Surgeon here though it was not recommended. I chose a specialist near where my sister lived and got lucky. Bad news was he left after 6 months to work for Yale and I'm on the West Coast. Did not care for doc taking over his cases so I struck out to find another.
Criteria for me:
1. Melanoma Research Center of Excellence
2. Doctor that people seem to relate to
3. Location
Took a lot of time on the computer, emails, etc. but I think I've found the right one. Hope that helps a little.
Mary
Stage 3
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- April 26, 2011 at 1:54 am
I think the first go round, WLE and SNB (at least that was for me), we all mostly just end up at where we are sent. I was given two choices for Mel specialists by my Derm and then told I could go to an Onc Surgeon here though it was not recommended. I chose a specialist near where my sister lived and got lucky. Bad news was he left after 6 months to work for Yale and I'm on the West Coast. Did not care for doc taking over his cases so I struck out to find another.
Criteria for me:
1. Melanoma Research Center of Excellence
2. Doctor that people seem to relate to
3. Location
Took a lot of time on the computer, emails, etc. but I think I've found the right one. Hope that helps a little.
Mary
Stage 3
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- April 26, 2011 at 3:31 am
I'm very happy with my oncologist, but did check with my GP, who gave him very high marks. Since it's often a GP who refers people out after an initial diagnosis, quite often they get feedback on the oncologists, and they often are aware of reputations in the medical community.
That being said, I also have to mention that my doctor is at MD Anderson, which is very near my home. So, in reality, I didn't have to search very hard or very far. However, it might help you to know that the vast majority of those of us between stages I and III are on "watch and wait" status. I was not treated beyond sugery until I reached stage IIIC – at that time I received interferon, then was back on watch and wait. Many people on this board advised me that this is the most common course because the treatment that exists is so harsh and it's better not to assault the body until absolutely necessary.
If I were in your shoes, I would seek another opinion on the other spot in your liver, and I would also seek another oncologist. You HAVE to trust your doctor – this disease difficult enough to cope with, you can't be dealing with negative feelings about your medical care.
Wishing the best for you-
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- April 26, 2011 at 3:31 am
I'm very happy with my oncologist, but did check with my GP, who gave him very high marks. Since it's often a GP who refers people out after an initial diagnosis, quite often they get feedback on the oncologists, and they often are aware of reputations in the medical community.
That being said, I also have to mention that my doctor is at MD Anderson, which is very near my home. So, in reality, I didn't have to search very hard or very far. However, it might help you to know that the vast majority of those of us between stages I and III are on "watch and wait" status. I was not treated beyond sugery until I reached stage IIIC – at that time I received interferon, then was back on watch and wait. Many people on this board advised me that this is the most common course because the treatment that exists is so harsh and it's better not to assault the body until absolutely necessary.
If I were in your shoes, I would seek another opinion on the other spot in your liver, and I would also seek another oncologist. You HAVE to trust your doctor – this disease difficult enough to cope with, you can't be dealing with negative feelings about your medical care.
Wishing the best for you-
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- April 26, 2011 at 11:44 am
Thank you both! Yes – I don't feel confident in my oncologist and that's what worries me. I know I'll still be on "watch and wait" status and I agree with that. But I just want to like the doctor and nurses and staff that I see every 3-4 months. Right now – I don't. I guess I will begin my search for a Center of Excellence. Is that an actual term? I'll have to google! 🙂
Kristin
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- April 26, 2011 at 11:44 am
Thank you both! Yes – I don't feel confident in my oncologist and that's what worries me. I know I'll still be on "watch and wait" status and I agree with that. But I just want to like the doctor and nurses and staff that I see every 3-4 months. Right now – I don't. I guess I will begin my search for a Center of Excellence. Is that an actual term? I'll have to google! 🙂
Kristin
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- April 26, 2011 at 12:56 pm
If your gut is telling you something, I'd follow it. Luckily for us, (my hubby is the cancer patient) our GP's office told us: "Don't fool around, go right to Dana Farber", but while I was trying to set up that appointment, we did see a local GP oncologist. NIGHT and day difference between the two. We left the GP Oncos office feeling as if they had very little experience with melanoma (only 8 Mel pts in practice…didn't bother to ask what stages…). We left the appointment with the specialist feeling that we were in good hands, even if the news wasn't the wife best.
If you live in NJ, then seriously consider looking into Sloan-Kettering Cancer Center in NYC. It might be a hike depending where in NJ you live, but they are rated #2 Cancer hospital in the USA! We live an hour out of Boston and gladly make the trip to have the peace of mind that hubby is being treated by the best specialists in our area.
Good luck with your search! 🙂
Michelle, wife of Don, Stage IIIc
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- April 26, 2011 at 12:56 pm
If your gut is telling you something, I'd follow it. Luckily for us, (my hubby is the cancer patient) our GP's office told us: "Don't fool around, go right to Dana Farber", but while I was trying to set up that appointment, we did see a local GP oncologist. NIGHT and day difference between the two. We left the GP Oncos office feeling as if they had very little experience with melanoma (only 8 Mel pts in practice…didn't bother to ask what stages…). We left the appointment with the specialist feeling that we were in good hands, even if the news wasn't the wife best.
If you live in NJ, then seriously consider looking into Sloan-Kettering Cancer Center in NYC. It might be a hike depending where in NJ you live, but they are rated #2 Cancer hospital in the USA! We live an hour out of Boston and gladly make the trip to have the peace of mind that hubby is being treated by the best specialists in our area.
Good luck with your search! 🙂
Michelle, wife of Don, Stage IIIc
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- April 26, 2011 at 1:00 pm
Kristin, I think it's critical for a Stage III melanoma patient to see a melanoma specialist, preferably one associated with a comprehensive cancer treatment center certified by the National Cancer Institute. (Memorial Sloan Kettering certainly fills that bill.) This is the only way you can be assured that you are receiving the best available treatment advice and hearing all the treatment options. If you go to MRF's home page and click on patient resources you'll find a list of melanoma treatment centers by state. (aimatmelanoma.org also has a "doctor finder" search tool.)
For me it was all pretty easy– my local primary care doctor, surgeon, and oncology generalist all advised me to seek further care and treatment (after a Stage IIIc diagnosis) at a melanoma specialty clinic reasonably close to home at the University of Colorado Cancer Center. A college roommate on the med school faculty at the University of Michigan also told me that UCCC was the nearest source of first-tier melanoma treatment. A clinical trial was recommended, biochemotherapy, and I went for it. Nearly eight years later, I'm still healthy and showing no evident disease.
I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com. Best wishes to you! Rich
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- April 26, 2011 at 1:00 pm
Kristin, I think it's critical for a Stage III melanoma patient to see a melanoma specialist, preferably one associated with a comprehensive cancer treatment center certified by the National Cancer Institute. (Memorial Sloan Kettering certainly fills that bill.) This is the only way you can be assured that you are receiving the best available treatment advice and hearing all the treatment options. If you go to MRF's home page and click on patient resources you'll find a list of melanoma treatment centers by state. (aimatmelanoma.org also has a "doctor finder" search tool.)
For me it was all pretty easy– my local primary care doctor, surgeon, and oncology generalist all advised me to seek further care and treatment (after a Stage IIIc diagnosis) at a melanoma specialty clinic reasonably close to home at the University of Colorado Cancer Center. A college roommate on the med school faculty at the University of Michigan also told me that UCCC was the nearest source of first-tier melanoma treatment. A clinical trial was recommended, biochemotherapy, and I went for it. Nearly eight years later, I'm still healthy and showing no evident disease.
I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com. Best wishes to you! Rich
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- April 26, 2011 at 1:12 pm
I had my surgery and orginal Dx at a very small hospital and just saw the hospital Oncologist…..then moved a couple of months later. I had already found this board and so I posted a mesage….moving to Chicago need a new Oncologist and Dermatologist…..someone gave me the names of a couple of people I did some research and then went to them.
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- April 26, 2011 at 1:12 pm
I had my surgery and orginal Dx at a very small hospital and just saw the hospital Oncologist…..then moved a couple of months later. I had already found this board and so I posted a mesage….moving to Chicago need a new Oncologist and Dermatologist…..someone gave me the names of a couple of people I did some research and then went to them.
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- April 26, 2011 at 1:37 pm
Hi Kristin,
I was fortunate. I had my mole removed at a Duke Urgent Care and when the path came back "melanoma" the UC dr had already made me an appt at Duke with a mel specialist. I've been in the Duke system, specifically Morris Cancer Clinic ever since and everyone I see there, including my derm, is a mel specialist.
That's what you've got to have. Mel specialists are all over the place. I travel over 2 hours each way to see mine and worth every penny and mile. Don't use your two-year old as an excuse not to seek a great specialist and to make this easier…no, use your two year old as a reason to do what you have to do! If you have to travel 3-4 hours each way, then DO IT! It will make all the difference in the world and to put it bluntly, could make all the difference in being around to watch your precious little one grow up.
Since your gut's telling you to run somewhere else, why aren't you listening? You're online…look up melanoma specialists in your state and any nearby states you're willing to travel to.
As for what you're looking for in a specialist: someone who's on top of the game should be first and foremost. You need to trust the dr above all else. Personality may factor in for some people, that's not a biggy for me. Someone who'll answer my questions and take the time I need and knows their stuff is what I'd look for. It's what was handed to me on a silver platter and I'm very grateful.
Lord, in Your mercy, direct Kristin's steps and guide her to the melanoma specialist for her. Turn her excuses into reasons. And bless her little one with health, give Mom hope, and look after this family. Amen.
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- April 26, 2011 at 1:37 pm
Hi Kristin,
I was fortunate. I had my mole removed at a Duke Urgent Care and when the path came back "melanoma" the UC dr had already made me an appt at Duke with a mel specialist. I've been in the Duke system, specifically Morris Cancer Clinic ever since and everyone I see there, including my derm, is a mel specialist.
That's what you've got to have. Mel specialists are all over the place. I travel over 2 hours each way to see mine and worth every penny and mile. Don't use your two-year old as an excuse not to seek a great specialist and to make this easier…no, use your two year old as a reason to do what you have to do! If you have to travel 3-4 hours each way, then DO IT! It will make all the difference in the world and to put it bluntly, could make all the difference in being around to watch your precious little one grow up.
Since your gut's telling you to run somewhere else, why aren't you listening? You're online…look up melanoma specialists in your state and any nearby states you're willing to travel to.
As for what you're looking for in a specialist: someone who's on top of the game should be first and foremost. You need to trust the dr above all else. Personality may factor in for some people, that's not a biggy for me. Someone who'll answer my questions and take the time I need and knows their stuff is what I'd look for. It's what was handed to me on a silver platter and I'm very grateful.
Lord, in Your mercy, direct Kristin's steps and guide her to the melanoma specialist for her. Turn her excuses into reasons. And bless her little one with health, give Mom hope, and look after this family. Amen.
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- April 26, 2011 at 2:03 pm
Excellent question! I do wish I would have read this stuff when I was first diagnosed December 2009.
Finding my surgeon was a joke. My GP (at a welfare clinic) initially sent me to another surgeon who shouted at me "what are you doing HERE. What am I supposed to do with you?" He then sent me to my current surgeon who as it turns out is considered one of the best and most experienced plastic surgeon in the area.
My first onc told me there is no treatment for melanoma other than surgery. I looked for her replacement when I had my first recurrance. I went more for someone who was upbeat and hope inspiring. Just asked a few cancer patients I knew.
While my current onc is not a specialist, she is not shy to get other opinions. AND THIS IS WHAT I LOVE ABOUT HER. She has presented my case to other local oncologists, radialogists and cancer surgeons. She has contacted and will continue to remain in contact with the University of Colorado Cancer Center for options and opinions.
If my current treatment (radiation) doesn't stop the recurrances, she will refer me to Dr. Lewis at University of Colorado Cancer Center.
I like my onc but I don't trust her with my life. I keep up with this forum and keep my eyes open for options. And I PRAY.
Nicki, Stage 3b, scalp
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- April 26, 2011 at 2:03 pm
Excellent question! I do wish I would have read this stuff when I was first diagnosed December 2009.
Finding my surgeon was a joke. My GP (at a welfare clinic) initially sent me to another surgeon who shouted at me "what are you doing HERE. What am I supposed to do with you?" He then sent me to my current surgeon who as it turns out is considered one of the best and most experienced plastic surgeon in the area.
My first onc told me there is no treatment for melanoma other than surgery. I looked for her replacement when I had my first recurrance. I went more for someone who was upbeat and hope inspiring. Just asked a few cancer patients I knew.
While my current onc is not a specialist, she is not shy to get other opinions. AND THIS IS WHAT I LOVE ABOUT HER. She has presented my case to other local oncologists, radialogists and cancer surgeons. She has contacted and will continue to remain in contact with the University of Colorado Cancer Center for options and opinions.
If my current treatment (radiation) doesn't stop the recurrances, she will refer me to Dr. Lewis at University of Colorado Cancer Center.
I like my onc but I don't trust her with my life. I keep up with this forum and keep my eyes open for options. And I PRAY.
Nicki, Stage 3b, scalp
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- April 26, 2011 at 5:00 pm
I found my oncologist through word of mouth…………not sure where you are located but here in Cincinnati, Ohio we have a local website for melanoma awareness. check it out…………..www.melanomagirl.com
I have been so very pleased with my doctor………….he's one of the top docs in our area. Good luck to you!
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- April 26, 2011 at 5:00 pm
I found my oncologist through word of mouth…………not sure where you are located but here in Cincinnati, Ohio we have a local website for melanoma awareness. check it out…………..www.melanomagirl.com
I have been so very pleased with my doctor………….he's one of the top docs in our area. Good luck to you!
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- April 26, 2011 at 5:05 pm
Kristin,
Look for a melanoma specializing oncologist. I found mine here:
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
You definitely want an oncologist who specializes in melanoma, it's a world unto itself.
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- April 27, 2011 at 5:36 pm
Thank you all! I am going to possibly go back to talk to MSK as well as talk to Mount Sanai (a Dana Farber melanoma oncologist just joined with them!). Thanks for all your support! I feel more empowered to make the change to an organization where I feel that I am a person and not just a number. Thank you!
Kristin
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- April 27, 2011 at 6:10 pm
Kristin,
I found my local oncologist by following the recommendation of Charlie S. When I had a recurrance she immediately put me with a melanoma specialist. What I like about him: He never makes me feel as if I'm rushed when asking questions, he knows of trials that are elsewhere if needed and he has discussed them with me, gives me his opinions on the trials and why he feels that way, e-mails when I have a question between appointments, refers me when needed. Recently I had some intense pain and the local Dr would not operate on my gallbladder before my next PET scan. I e-mailed my mel specialist, he was on vacation, he not only e-mailed me twice but forwarded the e-mail to his nurse who then called me. Then when he got back he reread the scan and set me up with a surgeon at their hospital.
I'm now with a different local onc because we have moved. To me it's important for your Dr to have knowledge, but it's also important that their willing to share that knowledge! Also, make sure that the hospital that you finally choose has a team approach. Sometimes they call it a tumor board, mine calls it a melanoma conference. My mel has traveled to the bladder so my urologist has just as much imput!
Linda
Stage IV since 06
scans in 2 weeks and hopefully still stable!!
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- April 27, 2011 at 6:10 pm
Kristin,
I found my local oncologist by following the recommendation of Charlie S. When I had a recurrance she immediately put me with a melanoma specialist. What I like about him: He never makes me feel as if I'm rushed when asking questions, he knows of trials that are elsewhere if needed and he has discussed them with me, gives me his opinions on the trials and why he feels that way, e-mails when I have a question between appointments, refers me when needed. Recently I had some intense pain and the local Dr would not operate on my gallbladder before my next PET scan. I e-mailed my mel specialist, he was on vacation, he not only e-mailed me twice but forwarded the e-mail to his nurse who then called me. Then when he got back he reread the scan and set me up with a surgeon at their hospital.
I'm now with a different local onc because we have moved. To me it's important for your Dr to have knowledge, but it's also important that their willing to share that knowledge! Also, make sure that the hospital that you finally choose has a team approach. Sometimes they call it a tumor board, mine calls it a melanoma conference. My mel has traveled to the bladder so my urologist has just as much imput!
Linda
Stage IV since 06
scans in 2 weeks and hopefully still stable!!
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- April 27, 2011 at 5:36 pm
Thank you all! I am going to possibly go back to talk to MSK as well as talk to Mount Sanai (a Dana Farber melanoma oncologist just joined with them!). Thanks for all your support! I feel more empowered to make the change to an organization where I feel that I am a person and not just a number. Thank you!
Kristin
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- April 26, 2011 at 5:05 pm
Kristin,
Look for a melanoma specializing oncologist. I found mine here:
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
You definitely want an oncologist who specializes in melanoma, it's a world unto itself.
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