› Forums › General Melanoma Community › Where would you go? MDAnderson, Moffett, or Vanderbilt? Or somewhere else?
- This topic has 23 replies, 6 voices, and was last updated 11 years, 8 months ago by
alabama girl.
- Post
-
- January 25, 2011 at 6:24 am
I live in Alabama. I am currently NED (YAY!!). I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.
I live in Alabama. I am currently NED (YAY!!). I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.
When my melanoma recurred in a lymph node in June 2009 after a 17 year absence, my local "general" oncologist said depending on what criteria you used, it could be staged as either stage III or IV. He stated that because of the long time period since the 1st occurence, and because we couldn't find a primary, if we treated it as a completely new occurrence, then it would be stage III. However, if we treated it as a recurrence, because my original melanoma was on the LEFT side, and the recurrence was in the lymph nodes on the RIGHT, it would be stage IV. Since he couldn't definitevly state which it was, he wasn't willing to stage it. The PET/CT showed only the one positive melanoma site and treatment proceeded as if it were stage III – surgery (CLND) followed by the year of interferon hell (completed Nov 2010).
ANYWAY, my oncologist says I'm at high risk for recurrence. I like to be prepared (former Girl Scout). For that reason, I want to have at least SOME idea of what I want to do should it recur. Based on what I've read on this site, I know I will need to get myself referred to a melanoma treatment center.
So, although UAB in Birmingham,AL is listed on this site as a Melanoma Treatment Center, they just don't seem to be as "robust" a center as others – nor are they as well known. (And I can't necessarily rely on my current oncologist's recommendation because he graduated from UAB!) If I chose not to use them, I have to be able to defend my choice to my spouse (which should be relatively easy just based on the availability of clinical trials.)
So, if you had to chose: Would you go to Moffett, MDAnderson, Vanderbilt, or somewhere else? I very am fortunate that at this time, I have good insurance that will allow me to go almost anywhere. (I'd like to stay in the southeast, but I would consider the NIH because of the TIL trials, which seem to be a very viable option.)
Thank you!
PS – I don't consider this negative thinking. I prefer not to be in a panic should the worst should occur. If I've at least thought about what I want to do, I'll be better prepared to make a decision and better able to discuss all the choices rationally with my husband. Something VERY important with my VERY logical husband!
- Replies
-
-
- January 25, 2011 at 2:50 pm
Chris,
It's always best to be proactive and to have a plan! We had considered moving to Al last year, our son lives in Leeds. My mel specialist did tell me that there is a mel specialist in Birmingham, however, I don't know his name.
I used to drive 4 hours each way to my Dr. and now I drive 2 hours. I have to warn you that it can be a pain in the neck at times! Example: I'm having an issue right now that is not to be thought to be mel related. My local gyn is scared of me because of my health issues and wants me to go to my surgeon in Charlotte. I really don't want to make that trek for a simple antibiotic!!! Make sure that your local Doctors are willing to communicate freely with whom ever you pick at a major center. Before we moved my Doctors would just pick up the phone and call, my new Doctors haven't done that yet and I seem to do all of the calling.
My recurrance was 27 years after the primary. It's quite a shock.
Good luck with choosing a melanoma Dr. If you would like me to find out the name of the specialist in Birmingham I will ask.
LInda
-
- January 26, 2011 at 6:39 am
Linda,
Thank you so much for your reply! The possibility of a long period of time between recurrences is one of the sneaky features of melanoma, isn't it? I was "only" 27 the first time melanoma bit me. In hindsight, there was SO little I didn't know and so many things I would have done differently. Then again, maybe living in ignorance of melanoma's capricious nature was actually better.
I thank God, and both my General Practitioner and General Surgeon from 1992 for these past 18+ years. I had had a very small, itchy mole on my left back that had been bothering me for over 3 years. Several doctors, including a dermatologist , had examined it and all declared it "normal" – nothing to be concerned about. (In fact, the derm said if it itched I should put some lotion on it. As if I could even reach it, let alone see it well enough to monitor it for changes! It was definitely a different era!)
The very 1st time I complained about the mole to my GP, he removed it – no questions asked. I was actually extremely lucky he even was willing to do this. Unlike today, in 1992, insurance generally wouldn't pay for removal unless the mole had an abnormal appearance. If the biopsy hadn't shown MM, I'd have had trouble getting the insurance company to pay for the procedure!
The surgeon took a very wide-excision (then 8-inch scar) – and while I cursed him soundly while it healed, he managed to do so without a skin graft (yay! – fewer scars). He stated the larger excision was necessary in order to get clean margins because "satellite nodules were found". As far as I was concerned, the cancer was GONE! (At the time, I really didn't understand what "satellite nodules" meant. If I heard that NOW…)
Looking back to that time of my life, I really was very blessed (or lucky, depending on your beliefs). I truly believe if my GP had not removed that mole, I would not be here today. Guess I might owe Dr. Odom a giant Thank You card. (I could send the surgeon one too, but he passed away several years ago.)
………………………….
Anyway, I completely understand about the travel distance thing. While doing the interferon, some days the 20 minute drive to the cancer center was more than I could handle. (Aaaannnnddd, in hindsight and complete honesty, I probably shouldn't have been driving. But that's a different issue.) I think willingness to work with my local cancer center would have to be one of the criteria for whichever melanoma center I chose. It would be nice to know that I could stay local for basic blood work or illness, and save the travel for the "big stuff"..
My impression of my oncologist is that he would be willing to work with another facility. While he was extremely comfortable with treating my "stage III" melanoma, at the same time, he let me know he had no problem if I wanted to go to another facility for treatment. At that point, since my research and his treatment plan were in agreement, I was satisfied to stay here.
If it recurs, I will be having a discussion with him regarding the best facility for further treatment, and their willingness to both assist with the referral process, and their willingness to work with that facility in terms of local testing, patient support, etc.. Including the "Tell me honestly: Where would you send YOUR wife or child if they were diagnosed with stage IV MELANOMA?" question. I have to ask him that because he is an assistant prof at UAB. (I think UAB might be OK for other cancers, but I'm not yet convinced for melanoma.)
Anyway, thank you again for your answer. In replying to you, you've helped me clarify some thoughts. (Sorry my reply is so wordy. I sometimes get that way sometimes late at night :-> )
Chris
-
- January 26, 2011 at 1:41 pm
Chris,
Somethings you could do in the meanwhile so you are ready if mel comes back (hopefully never!!!) are to ask your onc to test the tumor that was removed during your last surgery for the b-raf mutation. Also ask him to do a blood test to find out your hla factor. Being at a smaller site your tests would be done somewhere else so expect the results to take about 6 weeks. These 2 things can either open doors with trials or shut them. For example, many people with the B-raf are going to Vandy for trials. Lynn had mentioned the trial at Moffitt that she's in, you have to have a specific hla factor (I don't). Of course, make sure that your insurance will pay for these tests since your currently NED!!! They are not cheap!
While Charlotte (where I go) has some trials they do not have as many as the major centers. I have discussed this with my Dr. and have found that he appears to be up to date with where trials are located and he told me which ones he thinks are appropriate for me and which aren't. I believe that when needed he will direct me to the right place and not leave me trying to figure it out myself.
My family Doctor is a cancer survivor and she runs a "survivor school". One of the things she talks about is journaling and how sometimes you can work out emotional issues. Sounds like you did that in your reply!! That's what's so great about this board. You never know how you will get the answer but so many times it comes from someone elses experiences that triger something in yourself.
Linda
-
- January 26, 2011 at 1:41 pm
Chris,
Somethings you could do in the meanwhile so you are ready if mel comes back (hopefully never!!!) are to ask your onc to test the tumor that was removed during your last surgery for the b-raf mutation. Also ask him to do a blood test to find out your hla factor. Being at a smaller site your tests would be done somewhere else so expect the results to take about 6 weeks. These 2 things can either open doors with trials or shut them. For example, many people with the B-raf are going to Vandy for trials. Lynn had mentioned the trial at Moffitt that she's in, you have to have a specific hla factor (I don't). Of course, make sure that your insurance will pay for these tests since your currently NED!!! They are not cheap!
While Charlotte (where I go) has some trials they do not have as many as the major centers. I have discussed this with my Dr. and have found that he appears to be up to date with where trials are located and he told me which ones he thinks are appropriate for me and which aren't. I believe that when needed he will direct me to the right place and not leave me trying to figure it out myself.
My family Doctor is a cancer survivor and she runs a "survivor school". One of the things she talks about is journaling and how sometimes you can work out emotional issues. Sounds like you did that in your reply!! That's what's so great about this board. You never know how you will get the answer but so many times it comes from someone elses experiences that triger something in yourself.
Linda
-
- January 26, 2011 at 6:39 am
Linda,
Thank you so much for your reply! The possibility of a long period of time between recurrences is one of the sneaky features of melanoma, isn't it? I was "only" 27 the first time melanoma bit me. In hindsight, there was SO little I didn't know and so many things I would have done differently. Then again, maybe living in ignorance of melanoma's capricious nature was actually better.
I thank God, and both my General Practitioner and General Surgeon from 1992 for these past 18+ years. I had had a very small, itchy mole on my left back that had been bothering me for over 3 years. Several doctors, including a dermatologist , had examined it and all declared it "normal" – nothing to be concerned about. (In fact, the derm said if it itched I should put some lotion on it. As if I could even reach it, let alone see it well enough to monitor it for changes! It was definitely a different era!)
The very 1st time I complained about the mole to my GP, he removed it – no questions asked. I was actually extremely lucky he even was willing to do this. Unlike today, in 1992, insurance generally wouldn't pay for removal unless the mole had an abnormal appearance. If the biopsy hadn't shown MM, I'd have had trouble getting the insurance company to pay for the procedure!
The surgeon took a very wide-excision (then 8-inch scar) – and while I cursed him soundly while it healed, he managed to do so without a skin graft (yay! – fewer scars). He stated the larger excision was necessary in order to get clean margins because "satellite nodules were found". As far as I was concerned, the cancer was GONE! (At the time, I really didn't understand what "satellite nodules" meant. If I heard that NOW…)
Looking back to that time of my life, I really was very blessed (or lucky, depending on your beliefs). I truly believe if my GP had not removed that mole, I would not be here today. Guess I might owe Dr. Odom a giant Thank You card. (I could send the surgeon one too, but he passed away several years ago.)
………………………….
Anyway, I completely understand about the travel distance thing. While doing the interferon, some days the 20 minute drive to the cancer center was more than I could handle. (Aaaannnnddd, in hindsight and complete honesty, I probably shouldn't have been driving. But that's a different issue.) I think willingness to work with my local cancer center would have to be one of the criteria for whichever melanoma center I chose. It would be nice to know that I could stay local for basic blood work or illness, and save the travel for the "big stuff"..
My impression of my oncologist is that he would be willing to work with another facility. While he was extremely comfortable with treating my "stage III" melanoma, at the same time, he let me know he had no problem if I wanted to go to another facility for treatment. At that point, since my research and his treatment plan were in agreement, I was satisfied to stay here.
If it recurs, I will be having a discussion with him regarding the best facility for further treatment, and their willingness to both assist with the referral process, and their willingness to work with that facility in terms of local testing, patient support, etc.. Including the "Tell me honestly: Where would you send YOUR wife or child if they were diagnosed with stage IV MELANOMA?" question. I have to ask him that because he is an assistant prof at UAB. (I think UAB might be OK for other cancers, but I'm not yet convinced for melanoma.)
Anyway, thank you again for your answer. In replying to you, you've helped me clarify some thoughts. (Sorry my reply is so wordy. I sometimes get that way sometimes late at night :-> )
Chris
-
- January 25, 2011 at 2:50 pm
Chris,
It's always best to be proactive and to have a plan! We had considered moving to Al last year, our son lives in Leeds. My mel specialist did tell me that there is a mel specialist in Birmingham, however, I don't know his name.
I used to drive 4 hours each way to my Dr. and now I drive 2 hours. I have to warn you that it can be a pain in the neck at times! Example: I'm having an issue right now that is not to be thought to be mel related. My local gyn is scared of me because of my health issues and wants me to go to my surgeon in Charlotte. I really don't want to make that trek for a simple antibiotic!!! Make sure that your local Doctors are willing to communicate freely with whom ever you pick at a major center. Before we moved my Doctors would just pick up the phone and call, my new Doctors haven't done that yet and I seem to do all of the calling.
My recurrance was 27 years after the primary. It's quite a shock.
Good luck with choosing a melanoma Dr. If you would like me to find out the name of the specialist in Birmingham I will ask.
LInda
-
- January 25, 2011 at 10:14 pm
Moffitt! and thats because I am stage 4 NED and in the vaccine trial there. I really like the trial and Dr Weber and I am still NED! Lynn
-
- January 26, 2011 at 4:51 am
If you are talking about Richard Anderson at the University of Maryland, then I would absolutely recommend him. I had isolated limb perfusion there with him in June of 2010, and I was completely impressed with everything surrounding my procedure.
-
- January 26, 2011 at 4:51 am
If you are talking about Richard Anderson at the University of Maryland, then I would absolutely recommend him. I had isolated limb perfusion there with him in June of 2010, and I was completely impressed with everything surrounding my procedure.
-
- January 26, 2011 at 5:05 am
I actually meant MDAnderson Cancer Center in Houston, TX. Sorry for the confusion! (And thanx for the recommendation.)
Chris
-
- January 26, 2011 at 5:05 am
I actually meant MDAnderson Cancer Center in Houston, TX. Sorry for the confusion! (And thanx for the recommendation.)
Chris
-
- January 26, 2011 at 5:12 am
Thank you for the recommendation! I've heard so many good things about both Moffett & Dr. Weber. My first, gut feeling, was Moffett. However, bot UAB and Vandy are both so much closer to both my home (Montgomery) and my family's home (Indiana). For me to chose someplace a couple of hundred miles further away, I'd better have some good reasons 🙂 (Of course, I think the wide availability of a variety of clinical trials, and the numbers of stage IV patients still living years later are a pretty good testament to their success with melanoma.)
-
- January 26, 2011 at 5:12 am
Thank you for the recommendation! I've heard so many good things about both Moffett & Dr. Weber. My first, gut feeling, was Moffett. However, bot UAB and Vandy are both so much closer to both my home (Montgomery) and my family's home (Indiana). For me to chose someplace a couple of hundred miles further away, I'd better have some good reasons 🙂 (Of course, I think the wide availability of a variety of clinical trials, and the numbers of stage IV patients still living years later are a pretty good testament to their success with melanoma.)
-
- January 27, 2011 at 2:27 pm
I am stage IV and checked out Dr. Weber at Moffitt and also Dr. Patrick Hwu at MDA. Moffitt was offering the IPI trial, however, they had such an overflow of patients they were sending them to MDA in Florida. Dr. Weber suggested I see Dr. Hwu at MDA.
I have been traveling back and forth to MDA since August. We live in Atlanta and was currently treated at Emory. There is no comparison to Emory and MDA. I had a tumor in my chest very close to the IVC, which is the main vein which carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. Emory would not do the surgery.
I started the IPI/Temodar trial at MDA in September and had 4 infusions when the doc decided to pull the treatment. The scans showed that I have some smaller tumors in my right lung which were stable from the treatment, however the largest tumor near the IVC was continuing to grow and Dr. Hwu suggested surgery.
I had surgery on Jan 3. The tumors were all removed successfully and we found out the largest tumor near the IVC was partially dead, which means the treatment was working. I am returning to MDA on Feb 7 for scans and to decide on our next attack. The largest tumor was also collected for possible TIL therapy.
I am overwhelmed by MDA. For me it is the place for treatment.
Let me know if you need additional information.
Sue
-
- January 27, 2011 at 9:59 pm
Sue,
I've been wondering how you've been doing but couldn't find your e-mail. So glad the surgery was a success! Have they considered putting you back on the same trial since they now know it was working?
Were you home or still in Texas when the Atlanta storm hit?
Linda
-
- January 27, 2011 at 10:16 pm
Linda:
I have been wondering about you as well. I stopped checking the board last fall. So many individuals passing due to this disease I had to take a break from it.
One of the questions we have for MDA is going back on the same trial. The trip in February is for scans, discussing the next step and a followup with the surgeon.
Yes, we were in Texas when the storm hit and delayed in getting home for 2 nights. We had to switch hotels for the last 2 nights since they were booked and could not extend our stay. Bummer!
I'm still hurting. They had to break a rib. I don't tolerate narcotics very well so for the most part I have been taking tylenol. I did have a couple of good days this week, however. The pain is gradually lessening.
It's good to hear from you. Stay in touch.
Sue
-
- January 27, 2011 at 10:16 pm
Linda:
I have been wondering about you as well. I stopped checking the board last fall. So many individuals passing due to this disease I had to take a break from it.
One of the questions we have for MDA is going back on the same trial. The trip in February is for scans, discussing the next step and a followup with the surgeon.
Yes, we were in Texas when the storm hit and delayed in getting home for 2 nights. We had to switch hotels for the last 2 nights since they were booked and could not extend our stay. Bummer!
I'm still hurting. They had to break a rib. I don't tolerate narcotics very well so for the most part I have been taking tylenol. I did have a couple of good days this week, however. The pain is gradually lessening.
It's good to hear from you. Stay in touch.
Sue
-
- January 27, 2011 at 9:59 pm
Sue,
I've been wondering how you've been doing but couldn't find your e-mail. So glad the surgery was a success! Have they considered putting you back on the same trial since they now know it was working?
Were you home or still in Texas when the Atlanta storm hit?
Linda
-
- January 27, 2011 at 2:27 pm
I am stage IV and checked out Dr. Weber at Moffitt and also Dr. Patrick Hwu at MDA. Moffitt was offering the IPI trial, however, they had such an overflow of patients they were sending them to MDA in Florida. Dr. Weber suggested I see Dr. Hwu at MDA.
I have been traveling back and forth to MDA since August. We live in Atlanta and was currently treated at Emory. There is no comparison to Emory and MDA. I had a tumor in my chest very close to the IVC, which is the main vein which carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. Emory would not do the surgery.
I started the IPI/Temodar trial at MDA in September and had 4 infusions when the doc decided to pull the treatment. The scans showed that I have some smaller tumors in my right lung which were stable from the treatment, however the largest tumor near the IVC was continuing to grow and Dr. Hwu suggested surgery.
I had surgery on Jan 3. The tumors were all removed successfully and we found out the largest tumor near the IVC was partially dead, which means the treatment was working. I am returning to MDA on Feb 7 for scans and to decide on our next attack. The largest tumor was also collected for possible TIL therapy.
I am overwhelmed by MDA. For me it is the place for treatment.
Let me know if you need additional information.
Sue
-
- August 15, 2012 at 5:11 pm
Hi, I go to UAB and love my oncologist, Dr. Conry and surgeon, Dr. Urist there. I am stage 3B and only had surgery and radiation on the site. It was only micromets in 2 lymph nodes but the melanoma was 9 mm deep.
Also I am originally from Indiana and we live in Lanett, Al. Where is your family from in IND?
My husband prefers for me not to be on this site. He thinks it makes me a little down. Anyway, my CT scan 3 weeks ago was fine. My radiologist wants me to have an MRI of the breast along with a digital mammo and an ultrasound of the lymph nodes and breast. I had melanoma last Nov and breast cancer 4 months later. The sites are only a couple of inches apart, so i will have these tests every 6 mos now along with CT every 3 mos. Just hoping everything is still fine. It is very nerve wracking to have the tests as everyone on this board knows.
Hope you continue to have good news!
Alabama girl
-
- August 15, 2012 at 5:11 pm
Hi, I go to UAB and love my oncologist, Dr. Conry and surgeon, Dr. Urist there. I am stage 3B and only had surgery and radiation on the site. It was only micromets in 2 lymph nodes but the melanoma was 9 mm deep.
Also I am originally from Indiana and we live in Lanett, Al. Where is your family from in IND?
My husband prefers for me not to be on this site. He thinks it makes me a little down. Anyway, my CT scan 3 weeks ago was fine. My radiologist wants me to have an MRI of the breast along with a digital mammo and an ultrasound of the lymph nodes and breast. I had melanoma last Nov and breast cancer 4 months later. The sites are only a couple of inches apart, so i will have these tests every 6 mos now along with CT every 3 mos. Just hoping everything is still fine. It is very nerve wracking to have the tests as everyone on this board knows.
Hope you continue to have good news!
Alabama girl
-
- August 15, 2012 at 5:11 pm
Hi, I go to UAB and love my oncologist, Dr. Conry and surgeon, Dr. Urist there. I am stage 3B and only had surgery and radiation on the site. It was only micromets in 2 lymph nodes but the melanoma was 9 mm deep.
Also I am originally from Indiana and we live in Lanett, Al. Where is your family from in IND?
My husband prefers for me not to be on this site. He thinks it makes me a little down. Anyway, my CT scan 3 weeks ago was fine. My radiologist wants me to have an MRI of the breast along with a digital mammo and an ultrasound of the lymph nodes and breast. I had melanoma last Nov and breast cancer 4 months later. The sites are only a couple of inches apart, so i will have these tests every 6 mos now along with CT every 3 mos. Just hoping everything is still fine. It is very nerve wracking to have the tests as everyone on this board knows.
Hope you continue to have good news!
Alabama girl
-
- You must be logged in to reply to this topic.