› Forums › General Melanoma Community › “Major Cancer Center”
- This topic has 36 replies, 8 voices, and was last updated 9 years, 10 months ago by
5dives.
- Post
-
- June 12, 2014 at 5:41 pm
Hello all,
I am writing with what may seem a very basic question. I recently received "the call" from my derm that I have a superficial spreading melanoma, .96 mm, Clark's level 4, mitosis rate 2, brisk TIL. At first glance, I see that this will probably be 1b, right?
Derm says .96 is close enough to 1 mm to warrant the SNB, and he referred me to the cancer center at Loyola Medical Center. Surgeon = Godellas, doctor = Joseph Clark.
I see that Dr. Clark is heading several clinical trials, and my derm said he "lives and breathes" melanoma. He said that if he had a loved one with melanoma, he'd send them to Dr. Clark.
My question: I see this term "major cancer center" thrown around on this board, and I have to admit…I don't know what it means. I know many feel melanoma is too serious to be treated anywhere but at a major center, and I live in Chicago, so there's probably a "better" choice here…but I wouldn't even begin to know where the nearest "major cancer center" to me is.
My cousin died of melanoma, and I'm 45 with three boys…I do NOT plan to mess around with this disease. Bull by the horns, and all that.
Any thoughts appreciated.
Best,
Elaine
- Replies
-
-
- June 12, 2014 at 6:18 pm
I think the best place to start is the National Cancer Institute's list of "Designated Cancer Centers". They break them into two categories: "Comprehensive Cancer Centers" and "Cancer Centers". There are 68 total, 41 of which are "comprehensive". A handful are also research institutions that don't provide direct patient care. Regardless, information on the NCI designation system, including a description of the distinction between the types and a complete listing, by state, is available on the NCI website here:
http://www.cancer.gov/researchandfunding/extramural/cancercenters
That's not to suggest that there aren't other highly-qualified hospitals and certainly some on the NCI's list have better melanoma programs than others, but it is a good starting point.
-
- June 12, 2014 at 6:18 pm
I think the best place to start is the National Cancer Institute's list of "Designated Cancer Centers". They break them into two categories: "Comprehensive Cancer Centers" and "Cancer Centers". There are 68 total, 41 of which are "comprehensive". A handful are also research institutions that don't provide direct patient care. Regardless, information on the NCI designation system, including a description of the distinction between the types and a complete listing, by state, is available on the NCI website here:
http://www.cancer.gov/researchandfunding/extramural/cancercenters
That's not to suggest that there aren't other highly-qualified hospitals and certainly some on the NCI's list have better melanoma programs than others, but it is a good starting point.
-
- June 12, 2014 at 6:18 pm
I think the best place to start is the National Cancer Institute's list of "Designated Cancer Centers". They break them into two categories: "Comprehensive Cancer Centers" and "Cancer Centers". There are 68 total, 41 of which are "comprehensive". A handful are also research institutions that don't provide direct patient care. Regardless, information on the NCI designation system, including a description of the distinction between the types and a complete listing, by state, is available on the NCI website here:
http://www.cancer.gov/researchandfunding/extramural/cancercenters
That's not to suggest that there aren't other highly-qualified hospitals and certainly some on the NCI's list have better melanoma programs than others, but it is a good starting point.
-
- June 12, 2014 at 6:22 pm
Closest to you is the Mayo Clinic. You could also consider Northwestern Memorial. If it were me I would start with Mayo.
-
- June 12, 2014 at 9:40 pm
I am sorry to hear about your brother; 45 is far to young.
You have received some good advice about major cancer centers; hopefully that will be useful. The University of Chicago and Northwestern are both listed in the NIH document; both have significant melanoma programs.
Dr. Tom Gajewsky is a medical oncologist at Chicago and is highly respected, particularly in the immune therapy field. Dr. June Robinson is a research dermatologist at Northwestern. She has done a lot of work on prevention and early detection and is an expert in these areas.
The fact is, though, with a Stage I diagnosis the need for a comprehensive cancer center is somewhat lessened.. In all likelihood you will have no further problems beyond this surgery. I don't think any doctor would recommend follow up therapy, so the action plan is likely to be close observation.
I don't know Dr. Clark, but have the impression he is viewed postively among other melanoma doctors.
Tim–MRF
-
- June 12, 2014 at 9:40 pm
I am sorry to hear about your brother; 45 is far to young.
You have received some good advice about major cancer centers; hopefully that will be useful. The University of Chicago and Northwestern are both listed in the NIH document; both have significant melanoma programs.
Dr. Tom Gajewsky is a medical oncologist at Chicago and is highly respected, particularly in the immune therapy field. Dr. June Robinson is a research dermatologist at Northwestern. She has done a lot of work on prevention and early detection and is an expert in these areas.
The fact is, though, with a Stage I diagnosis the need for a comprehensive cancer center is somewhat lessened.. In all likelihood you will have no further problems beyond this surgery. I don't think any doctor would recommend follow up therapy, so the action plan is likely to be close observation.
I don't know Dr. Clark, but have the impression he is viewed postively among other melanoma doctors.
Tim–MRF
-
- June 12, 2014 at 10:06 pm
I'm with Tim on this one – I'd probably go to the recommended doc for the WLE/SNB.
HOWEVER, if your SNB were positive and you moved to stage III, that would be the time to reevaluate. Since there isn't much available for stage III other than interferon, I might look for a clinical trial.
Stage I where there are no treatments other than surgery, no clinical trials, no adjuvant therapy…. you just need a good doc who can help you watch your skin, and someone who can do the SNB (and does it regularly). Stage III is time to expand horizons.
-
- June 12, 2014 at 10:06 pm
I'm with Tim on this one – I'd probably go to the recommended doc for the WLE/SNB.
HOWEVER, if your SNB were positive and you moved to stage III, that would be the time to reevaluate. Since there isn't much available for stage III other than interferon, I might look for a clinical trial.
Stage I where there are no treatments other than surgery, no clinical trials, no adjuvant therapy…. you just need a good doc who can help you watch your skin, and someone who can do the SNB (and does it regularly). Stage III is time to expand horizons.
-
- June 13, 2014 at 2:20 am
Thank you so much for this very helpful information. As you know, it is all too easy to just "go along" when a doctor tells you what to do.
I respect my derm, and he said he would send a loved one to this doc at Loyola.
After reading your feedback, I'll plan to do the SNB / WLE at Loyola and if the nodes are positive, re-evaluate.
Thank you very much for the help.
Best,
Elaine
-
- June 13, 2014 at 2:20 am
Thank you so much for this very helpful information. As you know, it is all too easy to just "go along" when a doctor tells you what to do.
I respect my derm, and he said he would send a loved one to this doc at Loyola.
After reading your feedback, I'll plan to do the SNB / WLE at Loyola and if the nodes are positive, re-evaluate.
Thank you very much for the help.
Best,
Elaine
-
- June 13, 2014 at 1:12 pm
Hi Elaine-
I live in Chicago and I'm Stage 4 with mets to lungs….currently NED!!! So this is something I always think about…am I with right doctor. Should I be at an NCI Cancer Center… The one thing I do know is that you have to go to someone who is a melanoma specialist…knows the disease, treatments, trials, tied in with other melanoma specialists. That being said…I have been to Northwestern, Rush and Lutheran General. Happy with all of them…very good doctors. Currently, I'm with Dr. Hallmeyer & Dr. Richards from Lutheran General. I have recently completed a clinical trial combining IL-2 and ipi.
I have a friend who went to Dr. Clark around 2000 after being diagnosed Stage 4. He did IL-2 with him and has been NED ever since. He swears by Dr. Clark and I had him on my radar but stayed with Lutheran General after my Surgical Onc at NWM said I needed systemic treatment vs. surgery and discussed the trial with Hallmeyer & Richards that I eventually entered. I was also looking at PD-1 trial with Kuzel but opted to "save" that. I think if you talk to anyone on Chicago they would tell you the melanoma doctors to see here are:
Dr. Clark-Loyola
Dr. Gajewski- U of Chicago
Dr. Brockstein- Northshore
Dr. Kuzel-Northwestern
Dr. Ricahrds/Dr. Hallmeyer- Lutheran General
Take comfort with Dr. Clark…everything I've heard is that he is good doctor….knows melanoma.
You can read my profile…think it's updated for most part. Feel free to reach out to me.
Josh
PS- Who is your derm?
-
- June 13, 2014 at 1:12 pm
Hi Elaine-
I live in Chicago and I'm Stage 4 with mets to lungs….currently NED!!! So this is something I always think about…am I with right doctor. Should I be at an NCI Cancer Center… The one thing I do know is that you have to go to someone who is a melanoma specialist…knows the disease, treatments, trials, tied in with other melanoma specialists. That being said…I have been to Northwestern, Rush and Lutheran General. Happy with all of them…very good doctors. Currently, I'm with Dr. Hallmeyer & Dr. Richards from Lutheran General. I have recently completed a clinical trial combining IL-2 and ipi.
I have a friend who went to Dr. Clark around 2000 after being diagnosed Stage 4. He did IL-2 with him and has been NED ever since. He swears by Dr. Clark and I had him on my radar but stayed with Lutheran General after my Surgical Onc at NWM said I needed systemic treatment vs. surgery and discussed the trial with Hallmeyer & Richards that I eventually entered. I was also looking at PD-1 trial with Kuzel but opted to "save" that. I think if you talk to anyone on Chicago they would tell you the melanoma doctors to see here are:
Dr. Clark-Loyola
Dr. Gajewski- U of Chicago
Dr. Brockstein- Northshore
Dr. Kuzel-Northwestern
Dr. Ricahrds/Dr. Hallmeyer- Lutheran General
Take comfort with Dr. Clark…everything I've heard is that he is good doctor….knows melanoma.
You can read my profile…think it's updated for most part. Feel free to reach out to me.
Josh
PS- Who is your derm?
-
- June 13, 2014 at 1:12 pm
Hi Elaine-
I live in Chicago and I'm Stage 4 with mets to lungs….currently NED!!! So this is something I always think about…am I with right doctor. Should I be at an NCI Cancer Center… The one thing I do know is that you have to go to someone who is a melanoma specialist…knows the disease, treatments, trials, tied in with other melanoma specialists. That being said…I have been to Northwestern, Rush and Lutheran General. Happy with all of them…very good doctors. Currently, I'm with Dr. Hallmeyer & Dr. Richards from Lutheran General. I have recently completed a clinical trial combining IL-2 and ipi.
I have a friend who went to Dr. Clark around 2000 after being diagnosed Stage 4. He did IL-2 with him and has been NED ever since. He swears by Dr. Clark and I had him on my radar but stayed with Lutheran General after my Surgical Onc at NWM said I needed systemic treatment vs. surgery and discussed the trial with Hallmeyer & Richards that I eventually entered. I was also looking at PD-1 trial with Kuzel but opted to "save" that. I think if you talk to anyone on Chicago they would tell you the melanoma doctors to see here are:
Dr. Clark-Loyola
Dr. Gajewski- U of Chicago
Dr. Brockstein- Northshore
Dr. Kuzel-Northwestern
Dr. Ricahrds/Dr. Hallmeyer- Lutheran General
Take comfort with Dr. Clark…everything I've heard is that he is good doctor….knows melanoma.
You can read my profile…think it's updated for most part. Feel free to reach out to me.
Josh
PS- Who is your derm?
-
- June 13, 2014 at 2:20 am
Thank you so much for this very helpful information. As you know, it is all too easy to just "go along" when a doctor tells you what to do.
I respect my derm, and he said he would send a loved one to this doc at Loyola.
After reading your feedback, I'll plan to do the SNB / WLE at Loyola and if the nodes are positive, re-evaluate.
Thank you very much for the help.
Best,
Elaine
-
- June 12, 2014 at 10:06 pm
I'm with Tim on this one – I'd probably go to the recommended doc for the WLE/SNB.
HOWEVER, if your SNB were positive and you moved to stage III, that would be the time to reevaluate. Since there isn't much available for stage III other than interferon, I might look for a clinical trial.
Stage I where there are no treatments other than surgery, no clinical trials, no adjuvant therapy…. you just need a good doc who can help you watch your skin, and someone who can do the SNB (and does it regularly). Stage III is time to expand horizons.
-
- June 12, 2014 at 9:40 pm
I am sorry to hear about your brother; 45 is far to young.
You have received some good advice about major cancer centers; hopefully that will be useful. The University of Chicago and Northwestern are both listed in the NIH document; both have significant melanoma programs.
Dr. Tom Gajewsky is a medical oncologist at Chicago and is highly respected, particularly in the immune therapy field. Dr. June Robinson is a research dermatologist at Northwestern. She has done a lot of work on prevention and early detection and is an expert in these areas.
The fact is, though, with a Stage I diagnosis the need for a comprehensive cancer center is somewhat lessened.. In all likelihood you will have no further problems beyond this surgery. I don't think any doctor would recommend follow up therapy, so the action plan is likely to be close observation.
I don't know Dr. Clark, but have the impression he is viewed postively among other melanoma doctors.
Tim–MRF
-
- June 13, 2014 at 1:25 pm
just an fyi, North Shore has a partnership with Mayo http://www.northshore.org/mayo/
-
- June 13, 2014 at 1:25 pm
just an fyi, North Shore has a partnership with Mayo http://www.northshore.org/mayo/
-
- June 13, 2014 at 7:13 pm
Josh,
Thank you so much for your incredibly comforting response. In these early stages, I feel I have so much to learn, and I do not want to make a mistake.
In all the reading I've done recently on melana, I feel there are two competing nareatives for stage 1b:
1. You will have the surgery and you will be done with it…don't worry too much.
2. This disease will lurk, and then sneak back up on you…beware!
It's incredibly frightening, and as the mother of 3 boys (11, 13, 17), I just don't want to make a wrong move, for them.
My derm is Steven W. Neubauer in Naperville. I've been with him for 10 years, and I do trust his judgment,
Josh, I will read your profile and will keep an eye on you! Congrats on your NED status. 🙂
Thank you!
Best,
Elaine
-
- June 13, 2014 at 7:13 pm
Josh,
Thank you so much for your incredibly comforting response. In these early stages, I feel I have so much to learn, and I do not want to make a mistake.
In all the reading I've done recently on melana, I feel there are two competing nareatives for stage 1b:
1. You will have the surgery and you will be done with it…don't worry too much.
2. This disease will lurk, and then sneak back up on you…beware!
It's incredibly frightening, and as the mother of 3 boys (11, 13, 17), I just don't want to make a wrong move, for them.
My derm is Steven W. Neubauer in Naperville. I've been with him for 10 years, and I do trust his judgment,
Josh, I will read your profile and will keep an eye on you! Congrats on your NED status. 🙂
Thank you!
Best,
Elaine
-
- June 13, 2014 at 7:38 pm
Elaine, it sounds like you are taking a very proactive, pragmatic, and vigilant approach to your recent diagnosis, that's great. Someone here wrote recently that being an optimist and a realist aren't necessarily incompatible points of view, and I agree. Way to go facing this head-on, for yourself and for your family!
Full disclosure, I'm Stage IV, and have been since my diagnosis almost 4 years ago – never been NED, but have come close a few times, for whatever that's worth. You make a good observation about the competing narratives with regards to Stage Ib. If I can make a quick note about that, keep in mind that those narratives may not accurately reflect the true "balance" (for lack of a better word). What I mean by that is that the vast majority of Stage I melanoma patients will never have a recurrence or progression. As such, many of them won't ever have a want or need to post or participate in this forum (and that's O.K. 😉 Without trying to invoke a politically charged phrase, the narratives you see here are probably not completely "fair and balanced". Again, this isn't meant to be a criticism of this forum, in the long time that I've "lurked" and shorter time that I've been a more active participant, I've found it to be a great resource and hope that I've been able to contribute in some small way.
Indeed, many Stage I melanoma patients will have surgery and never have to deal with a recurrence again, while a small percentage will find it to be an insidious beast that rears it's head years later.
Regardless, it's refreshing to see you taking such an active role in educating yourself. Get treated, stay vigilant, and enjoy your boys – and please let us know how things go with your next steps.
Joe
-
- June 13, 2014 at 7:38 pm
Elaine, it sounds like you are taking a very proactive, pragmatic, and vigilant approach to your recent diagnosis, that's great. Someone here wrote recently that being an optimist and a realist aren't necessarily incompatible points of view, and I agree. Way to go facing this head-on, for yourself and for your family!
Full disclosure, I'm Stage IV, and have been since my diagnosis almost 4 years ago – never been NED, but have come close a few times, for whatever that's worth. You make a good observation about the competing narratives with regards to Stage Ib. If I can make a quick note about that, keep in mind that those narratives may not accurately reflect the true "balance" (for lack of a better word). What I mean by that is that the vast majority of Stage I melanoma patients will never have a recurrence or progression. As such, many of them won't ever have a want or need to post or participate in this forum (and that's O.K. 😉 Without trying to invoke a politically charged phrase, the narratives you see here are probably not completely "fair and balanced". Again, this isn't meant to be a criticism of this forum, in the long time that I've "lurked" and shorter time that I've been a more active participant, I've found it to be a great resource and hope that I've been able to contribute in some small way.
Indeed, many Stage I melanoma patients will have surgery and never have to deal with a recurrence again, while a small percentage will find it to be an insidious beast that rears it's head years later.
Regardless, it's refreshing to see you taking such an active role in educating yourself. Get treated, stay vigilant, and enjoy your boys – and please let us know how things go with your next steps.
Joe
-
- June 13, 2014 at 8:40 pm
Joe~
I am a recent stage 1b patient- and I really appreciate your post. You are very positive yet realistic. I agree that is always hear/ read the two extremes and it's hard to find a healthy balance between vigilant- paranoid and "it'll be ok"- ignoring what's happening. I'm hoping time helps me be vigilant and "it'll be ok" combo.
there are sooo many kind, caring, brave warriors of all stages on this board. Thanks for sharing your wisdom.
-
- June 13, 2014 at 8:40 pm
Joe~
I am a recent stage 1b patient- and I really appreciate your post. You are very positive yet realistic. I agree that is always hear/ read the two extremes and it's hard to find a healthy balance between vigilant- paranoid and "it'll be ok"- ignoring what's happening. I'm hoping time helps me be vigilant and "it'll be ok" combo.
there are sooo many kind, caring, brave warriors of all stages on this board. Thanks for sharing your wisdom.
-
- June 14, 2014 at 3:45 am
Joe,
Really can't thank you enough. Thanks for the reminder that the 1b's without recurrences really aren't going to be heard here necessarily because they've "moved on" and are enjoying their lives elsewhere.
Me, I plan on being on this board for a while…seems like good people. 🙂
Best,
Elaine
-
- June 14, 2014 at 3:45 am
Joe,
Really can't thank you enough. Thanks for the reminder that the 1b's without recurrences really aren't going to be heard here necessarily because they've "moved on" and are enjoying their lives elsewhere.
Me, I plan on being on this board for a while…seems like good people. 🙂
Best,
Elaine
-
- June 14, 2014 at 3:45 am
Joe,
Really can't thank you enough. Thanks for the reminder that the 1b's without recurrences really aren't going to be heard here necessarily because they've "moved on" and are enjoying their lives elsewhere.
Me, I plan on being on this board for a while…seems like good people. 🙂
Best,
Elaine
-
- June 13, 2014 at 8:40 pm
Joe~
I am a recent stage 1b patient- and I really appreciate your post. You are very positive yet realistic. I agree that is always hear/ read the two extremes and it's hard to find a healthy balance between vigilant- paranoid and "it'll be ok"- ignoring what's happening. I'm hoping time helps me be vigilant and "it'll be ok" combo.
there are sooo many kind, caring, brave warriors of all stages on this board. Thanks for sharing your wisdom.
-
- June 13, 2014 at 7:38 pm
Elaine, it sounds like you are taking a very proactive, pragmatic, and vigilant approach to your recent diagnosis, that's great. Someone here wrote recently that being an optimist and a realist aren't necessarily incompatible points of view, and I agree. Way to go facing this head-on, for yourself and for your family!
Full disclosure, I'm Stage IV, and have been since my diagnosis almost 4 years ago – never been NED, but have come close a few times, for whatever that's worth. You make a good observation about the competing narratives with regards to Stage Ib. If I can make a quick note about that, keep in mind that those narratives may not accurately reflect the true "balance" (for lack of a better word). What I mean by that is that the vast majority of Stage I melanoma patients will never have a recurrence or progression. As such, many of them won't ever have a want or need to post or participate in this forum (and that's O.K. 😉 Without trying to invoke a politically charged phrase, the narratives you see here are probably not completely "fair and balanced". Again, this isn't meant to be a criticism of this forum, in the long time that I've "lurked" and shorter time that I've been a more active participant, I've found it to be a great resource and hope that I've been able to contribute in some small way.
Indeed, many Stage I melanoma patients will have surgery and never have to deal with a recurrence again, while a small percentage will find it to be an insidious beast that rears it's head years later.
Regardless, it's refreshing to see you taking such an active role in educating yourself. Get treated, stay vigilant, and enjoy your boys – and please let us know how things go with your next steps.
Joe
-
- June 13, 2014 at 7:13 pm
Josh,
Thank you so much for your incredibly comforting response. In these early stages, I feel I have so much to learn, and I do not want to make a mistake.
In all the reading I've done recently on melana, I feel there are two competing nareatives for stage 1b:
1. You will have the surgery and you will be done with it…don't worry too much.
2. This disease will lurk, and then sneak back up on you…beware!
It's incredibly frightening, and as the mother of 3 boys (11, 13, 17), I just don't want to make a wrong move, for them.
My derm is Steven W. Neubauer in Naperville. I've been with him for 10 years, and I do trust his judgment,
Josh, I will read your profile and will keep an eye on you! Congrats on your NED status. 🙂
Thank you!
Best,
Elaine
-
- June 13, 2014 at 1:25 pm
just an fyi, North Shore has a partnership with Mayo http://www.northshore.org/mayo/
-
- You must be logged in to reply to this topic.