› Forums › General Melanoma Community › Just trying to find some answers
- This topic has 21 replies, 7 voices, and was last updated 10 years, 11 months ago by
Tim–MRF.
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- June 12, 2014 at 1:00 pm
Hello everyone, I was first diagnosied in August of 2011 and was in remission until the scans found hot spots March of 2014. After two biospys and a trip to Md Anderson. I am most stressed than usual. At MD Anderson the doctor order a CT scan, which he showed us (myself and my sister). According to that scan there was a small mass near my urethea, a suspucious lymph node, and spot near my liver. He thought that spot near my liver was just a blood vessel. He told me I needed another biospy and I could chooose to do that out at MD Anderson or at home. He also told me that any treatment I considered could be done at Md Anderon or home. My thoughts was at that time, well if they can do this at home, I will go home and have it done. I was so wrong. Come to find out, that mass my cancer doctor thought was just my uretha just constricted, and that lymph node is near some bile duct and hard to get to. I saw my surgeon yesterday and he is getting with a expert in that to see how to remove that node at this time. My surgeon recemmended I go back to MD anderson. At this point in time I feel like nobody cares about me, and this unrest of the going back and forth and not knowing what to do for me us unreal.
Plus every time I have been on this site, it like nobody out there cares about what I am going through or the fact that I feel like a ping pong ball going back and forth. My Doctor here in Alabama basically told me, that we do not have the medical expertise that knows how to watch someone that is doing teatments. Then Md Andseron didn't seem to care about me. Really? This is my life we are talking about. I am now considered to be in Stage 4, M 1 B, because that cancer spread to my lung. I need information fast so I can make a decison on what to do and where to go. Need Help fast.
Robbie
I have not had any treatment, and do have the BRAF gene 6000E.
- Replies
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- June 12, 2014 at 2:00 pm
Melanoma is too serious a cancer not to be at a major cancer center. I am at Sloan.
A nurse from my insurance company calls and counsels me through this whole process and told me to only get scanned and boipsied at Sloan (or in your case MD Anderson) because I want the best radiologists and lab clinitions looking at my actual scans and slides, not just the reports issued by a lower level facility. They have seen everything, and more than once. The cancer doctor who referred me to Sloan told me that he had only seen my cancer twice in his career and did not know how to treat it.
Also, the major cancer centers are the ones doing the reseearch and can either get you into a clinical trial or access to a Phase III treatment that you definitely would not be able to get at home.
Cancer (and specifically melanoma) immunotherapy treatments are progressing very rapidly. Your job is to stay alive long enough to benefit from the treatments, and for that you have to be somewhere where they have the knowhow and the facilities to do ANYTHING to fight anything that comes up.
It is very scary. Perhaps you could take advantage of the social workers that these centers provide. Keep reaching out for help because you are worth it.
I wish you all the best. I am hopeful regarding my own melanoma and I am hopeful regarding yours too.
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- June 12, 2014 at 2:00 pm
Melanoma is too serious a cancer not to be at a major cancer center. I am at Sloan.
A nurse from my insurance company calls and counsels me through this whole process and told me to only get scanned and boipsied at Sloan (or in your case MD Anderson) because I want the best radiologists and lab clinitions looking at my actual scans and slides, not just the reports issued by a lower level facility. They have seen everything, and more than once. The cancer doctor who referred me to Sloan told me that he had only seen my cancer twice in his career and did not know how to treat it.
Also, the major cancer centers are the ones doing the reseearch and can either get you into a clinical trial or access to a Phase III treatment that you definitely would not be able to get at home.
Cancer (and specifically melanoma) immunotherapy treatments are progressing very rapidly. Your job is to stay alive long enough to benefit from the treatments, and for that you have to be somewhere where they have the knowhow and the facilities to do ANYTHING to fight anything that comes up.
It is very scary. Perhaps you could take advantage of the social workers that these centers provide. Keep reaching out for help because you are worth it.
I wish you all the best. I am hopeful regarding my own melanoma and I am hopeful regarding yours too.
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- June 12, 2014 at 2:00 pm
Melanoma is too serious a cancer not to be at a major cancer center. I am at Sloan.
A nurse from my insurance company calls and counsels me through this whole process and told me to only get scanned and boipsied at Sloan (or in your case MD Anderson) because I want the best radiologists and lab clinitions looking at my actual scans and slides, not just the reports issued by a lower level facility. They have seen everything, and more than once. The cancer doctor who referred me to Sloan told me that he had only seen my cancer twice in his career and did not know how to treat it.
Also, the major cancer centers are the ones doing the reseearch and can either get you into a clinical trial or access to a Phase III treatment that you definitely would not be able to get at home.
Cancer (and specifically melanoma) immunotherapy treatments are progressing very rapidly. Your job is to stay alive long enough to benefit from the treatments, and for that you have to be somewhere where they have the knowhow and the facilities to do ANYTHING to fight anything that comes up.
It is very scary. Perhaps you could take advantage of the social workers that these centers provide. Keep reaching out for help because you are worth it.
I wish you all the best. I am hopeful regarding my own melanoma and I am hopeful regarding yours too.
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- June 12, 2014 at 2:22 pm
This is all just my honest opinion, but if I'm you, I don't choose where to have surgery or treatment out of convenience. MD Anderson is a top facility and I would insist on doing everything there(or whatever other top facility you choose, Moffit, Sloan, etc). Scans, radiation, surgery, Zel, Dab, ipi, even basic follow-up… ANY treatment of ANY kind relating to melanoma, I would want done at a Melanoma Center of Excellence ie MD Anderson.
Just my opinion.
Good luck!
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- June 12, 2014 at 2:22 pm
This is all just my honest opinion, but if I'm you, I don't choose where to have surgery or treatment out of convenience. MD Anderson is a top facility and I would insist on doing everything there(or whatever other top facility you choose, Moffit, Sloan, etc). Scans, radiation, surgery, Zel, Dab, ipi, even basic follow-up… ANY treatment of ANY kind relating to melanoma, I would want done at a Melanoma Center of Excellence ie MD Anderson.
Just my opinion.
Good luck!
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- June 12, 2014 at 2:22 pm
This is all just my honest opinion, but if I'm you, I don't choose where to have surgery or treatment out of convenience. MD Anderson is a top facility and I would insist on doing everything there(or whatever other top facility you choose, Moffit, Sloan, etc). Scans, radiation, surgery, Zel, Dab, ipi, even basic follow-up… ANY treatment of ANY kind relating to melanoma, I would want done at a Melanoma Center of Excellence ie MD Anderson.
Just my opinion.
Good luck!
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- June 12, 2014 at 2:42 pm
I agree with the other posters. We happen to live in Houston so MD Anderson is right by us. They have all the targeted therapies there for BRAF positive Melanoma. And they are doing the most advanced treatments (some that aren't even offered elsewhere). It would be best to stay at MD Anderson if you can. I can't imagine what you are going through but please know that you are not alone.
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- June 12, 2014 at 2:42 pm
I agree with the other posters. We happen to live in Houston so MD Anderson is right by us. They have all the targeted therapies there for BRAF positive Melanoma. And they are doing the most advanced treatments (some that aren't even offered elsewhere). It would be best to stay at MD Anderson if you can. I can't imagine what you are going through but please know that you are not alone.
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- June 12, 2014 at 2:42 pm
I agree with the other posters. We happen to live in Houston so MD Anderson is right by us. They have all the targeted therapies there for BRAF positive Melanoma. And they are doing the most advanced treatments (some that aren't even offered elsewhere). It would be best to stay at MD Anderson if you can. I can't imagine what you are going through but please know that you are not alone.
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- June 12, 2014 at 2:59 pm
Dear Robbie,
I am sorry that you are feeling so badly about your situation. It is definitely no fun, and many of us can relate to your position very well. I agree with the prior posters….you do have options and going to a place where they know the most about what you need is essential. It is not easy, but I have traveled for my care from Chattanooga to Tampa for over three years.
MD Anderson is a national cancer center that provides state of the art care for many with melanoma. I don't know that they were being uncaring when they offered that they could see you or that you could get your care in Alabama. Perhaps they were just offering you the choice as traveling for care is obviously very difficult. Your doc in AL actually did you a favor by admitting that they were NOT experts in the surgery you need. It is better to know that from the start and some docs (aka people) are not good about admitting their limitations. In Alabama, UAB does some really great cancer care, but not to the extent, and especially in melanoma, that MD Anderson does. If, however, you do wish to return to MD Anderson, but did not care for the doc with whom you consulted….you can always ask to see his/her partner and perhaps that would be a better fit for you.
As far as your scans….they are often read differently by different folks. That's not very nice for us, the patients…but that is the reality. Whether the issue at the urethra is one thing or the other will probably become more clear, in a follow-up scan, no matter who reads it.
You had been adamant on a prior post that you would not be a "human pig" in a clinical trial. That is certainly your choice, though many of us here currently, and certainly many of those before us, have been exactly that…..and I am ever so thankful. Those trials and "pigs" certainly put money in the pockets of institutions, doctors, and pharma. However, they also put their lives on the line so that the rest of us now have access to better meds and treatments. Without those "pigs" we would not now have the option of BRAF inhibitors nor ipi nor IL2….all of which are now FDA approved and can be prescribed for you at MD Anderson with no involvement in a clinical trial. And, indeed, I think those three treatments alone with resection of the node would all be very reasonable choices for you. Anti-PD1 (2 different products…one from BMS and another from Merck) is available in 2 different expanded access programs at various facilities…both are just coming online….so they are not "everywhere" yet and the situation of their provision may be too much like a clinical trial for your comfort.
I hope that helps. Some links to information that may help you follows:
Info about BRAF: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
Info about ipi:
Info about going to places that specialize in what you need:
I wish you my very best. Celeste
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- June 12, 2014 at 2:59 pm
Dear Robbie,
I am sorry that you are feeling so badly about your situation. It is definitely no fun, and many of us can relate to your position very well. I agree with the prior posters….you do have options and going to a place where they know the most about what you need is essential. It is not easy, but I have traveled for my care from Chattanooga to Tampa for over three years.
MD Anderson is a national cancer center that provides state of the art care for many with melanoma. I don't know that they were being uncaring when they offered that they could see you or that you could get your care in Alabama. Perhaps they were just offering you the choice as traveling for care is obviously very difficult. Your doc in AL actually did you a favor by admitting that they were NOT experts in the surgery you need. It is better to know that from the start and some docs (aka people) are not good about admitting their limitations. In Alabama, UAB does some really great cancer care, but not to the extent, and especially in melanoma, that MD Anderson does. If, however, you do wish to return to MD Anderson, but did not care for the doc with whom you consulted….you can always ask to see his/her partner and perhaps that would be a better fit for you.
As far as your scans….they are often read differently by different folks. That's not very nice for us, the patients…but that is the reality. Whether the issue at the urethra is one thing or the other will probably become more clear, in a follow-up scan, no matter who reads it.
You had been adamant on a prior post that you would not be a "human pig" in a clinical trial. That is certainly your choice, though many of us here currently, and certainly many of those before us, have been exactly that…..and I am ever so thankful. Those trials and "pigs" certainly put money in the pockets of institutions, doctors, and pharma. However, they also put their lives on the line so that the rest of us now have access to better meds and treatments. Without those "pigs" we would not now have the option of BRAF inhibitors nor ipi nor IL2….all of which are now FDA approved and can be prescribed for you at MD Anderson with no involvement in a clinical trial. And, indeed, I think those three treatments alone with resection of the node would all be very reasonable choices for you. Anti-PD1 (2 different products…one from BMS and another from Merck) is available in 2 different expanded access programs at various facilities…both are just coming online….so they are not "everywhere" yet and the situation of their provision may be too much like a clinical trial for your comfort.
I hope that helps. Some links to information that may help you follows:
Info about BRAF: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
Info about ipi:
Info about going to places that specialize in what you need:
I wish you my very best. Celeste
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- June 12, 2014 at 2:59 pm
Dear Robbie,
I am sorry that you are feeling so badly about your situation. It is definitely no fun, and many of us can relate to your position very well. I agree with the prior posters….you do have options and going to a place where they know the most about what you need is essential. It is not easy, but I have traveled for my care from Chattanooga to Tampa for over three years.
MD Anderson is a national cancer center that provides state of the art care for many with melanoma. I don't know that they were being uncaring when they offered that they could see you or that you could get your care in Alabama. Perhaps they were just offering you the choice as traveling for care is obviously very difficult. Your doc in AL actually did you a favor by admitting that they were NOT experts in the surgery you need. It is better to know that from the start and some docs (aka people) are not good about admitting their limitations. In Alabama, UAB does some really great cancer care, but not to the extent, and especially in melanoma, that MD Anderson does. If, however, you do wish to return to MD Anderson, but did not care for the doc with whom you consulted….you can always ask to see his/her partner and perhaps that would be a better fit for you.
As far as your scans….they are often read differently by different folks. That's not very nice for us, the patients…but that is the reality. Whether the issue at the urethra is one thing or the other will probably become more clear, in a follow-up scan, no matter who reads it.
You had been adamant on a prior post that you would not be a "human pig" in a clinical trial. That is certainly your choice, though many of us here currently, and certainly many of those before us, have been exactly that…..and I am ever so thankful. Those trials and "pigs" certainly put money in the pockets of institutions, doctors, and pharma. However, they also put their lives on the line so that the rest of us now have access to better meds and treatments. Without those "pigs" we would not now have the option of BRAF inhibitors nor ipi nor IL2….all of which are now FDA approved and can be prescribed for you at MD Anderson with no involvement in a clinical trial. And, indeed, I think those three treatments alone with resection of the node would all be very reasonable choices for you. Anti-PD1 (2 different products…one from BMS and another from Merck) is available in 2 different expanded access programs at various facilities…both are just coming online….so they are not "everywhere" yet and the situation of their provision may be too much like a clinical trial for your comfort.
I hope that helps. Some links to information that may help you follows:
Info about BRAF: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
Info about ipi:
Info about going to places that specialize in what you need:
I wish you my very best. Celeste
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- June 12, 2014 at 4:06 pm
Robbie,
In retrospect it sounds like maybe you would have been better served if the MDA cancer specialist had steered you toward seeing an MDA surgeon. In your next "ping-pong" appointment, if you go back to MDA to talk to a *surgeon* this time, then you will see if your experience with their surgeon gives you confidence that they understand your case, especially the aspects of the surgery your local facility is struggling with.
One way to look at MDA is that they have been your "first" opinion, at least melanoma-wise. You could try a second opinion somewhere else — say, Vanderbilt. And then decided between MDA and (Vanderbilt, etc.). But in another sense it doesn't sound like you have gotten a "first" opinion yet from an MDA, surgery-wise rather than melanoma-wise. There's a risk you could end up feeling more ping-ponged going for a second opinion elsewhere than MDA, at least before you've gotten a first opinion from their surgeons.
I will say I'm seen at two places (UCSF, Portland Providence) and I have felt like I'm getting top care. Excellent expertise and care is out there, beyond, say MDA, Moffitt and MSK. I did go to MDA for a second opinion once, and wouldn't be dissuaded from seeking treatment there, except they're not local. There are 29 NCI-designated cancer centers if I remember correctly, not just 3.
You are the most important member of your care team. You have to pull the strings when communication and coordination break down in small and sometimes in bigger ways. I hope you are able to a satisfactory opinion on the surgery, and get the surgery done and treatment started soon, however you make your next steps.
– Kyle
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- June 12, 2014 at 4:06 pm
Robbie,
In retrospect it sounds like maybe you would have been better served if the MDA cancer specialist had steered you toward seeing an MDA surgeon. In your next "ping-pong" appointment, if you go back to MDA to talk to a *surgeon* this time, then you will see if your experience with their surgeon gives you confidence that they understand your case, especially the aspects of the surgery your local facility is struggling with.
One way to look at MDA is that they have been your "first" opinion, at least melanoma-wise. You could try a second opinion somewhere else — say, Vanderbilt. And then decided between MDA and (Vanderbilt, etc.). But in another sense it doesn't sound like you have gotten a "first" opinion yet from an MDA, surgery-wise rather than melanoma-wise. There's a risk you could end up feeling more ping-ponged going for a second opinion elsewhere than MDA, at least before you've gotten a first opinion from their surgeons.
I will say I'm seen at two places (UCSF, Portland Providence) and I have felt like I'm getting top care. Excellent expertise and care is out there, beyond, say MDA, Moffitt and MSK. I did go to MDA for a second opinion once, and wouldn't be dissuaded from seeking treatment there, except they're not local. There are 29 NCI-designated cancer centers if I remember correctly, not just 3.
You are the most important member of your care team. You have to pull the strings when communication and coordination break down in small and sometimes in bigger ways. I hope you are able to a satisfactory opinion on the surgery, and get the surgery done and treatment started soon, however you make your next steps.
– Kyle
-
- June 12, 2014 at 4:06 pm
Robbie,
In retrospect it sounds like maybe you would have been better served if the MDA cancer specialist had steered you toward seeing an MDA surgeon. In your next "ping-pong" appointment, if you go back to MDA to talk to a *surgeon* this time, then you will see if your experience with their surgeon gives you confidence that they understand your case, especially the aspects of the surgery your local facility is struggling with.
One way to look at MDA is that they have been your "first" opinion, at least melanoma-wise. You could try a second opinion somewhere else — say, Vanderbilt. And then decided between MDA and (Vanderbilt, etc.). But in another sense it doesn't sound like you have gotten a "first" opinion yet from an MDA, surgery-wise rather than melanoma-wise. There's a risk you could end up feeling more ping-ponged going for a second opinion elsewhere than MDA, at least before you've gotten a first opinion from their surgeons.
I will say I'm seen at two places (UCSF, Portland Providence) and I have felt like I'm getting top care. Excellent expertise and care is out there, beyond, say MDA, Moffitt and MSK. I did go to MDA for a second opinion once, and wouldn't be dissuaded from seeking treatment there, except they're not local. There are 29 NCI-designated cancer centers if I remember correctly, not just 3.
You are the most important member of your care team. You have to pull the strings when communication and coordination break down in small and sometimes in bigger ways. I hope you are able to a satisfactory opinion on the surgery, and get the surgery done and treatment started soon, however you make your next steps.
– Kyle
-
- June 12, 2014 at 6:09 pm
Robbie, lots of good ideas and opinions in the previous replies to your post, so I'll risk repeating some of what's already been said in the hope of perhaps reinforcing it. First, I'm sorry to hear about your frustrating experience recently; it can't feel good to feel like you're being bounced around like that. As Celeste pointed out, though, consider that perhaps both MDA and your local doctors were actually trying to do what's in your best interest, both by MDA giving you the option of having the procedure closer to home and by your doctors in Alabama being humble enough to suggest that maybe they weren't the best qualified in your particular case.So much has happened with melanoma in the past several years. I was diagnosed in the summer of 2010 and was Stage IV from the beginning – my four year "anniversary" is coming up in a few weeks and in all honesty, I questioned back then whether I'd even make it six months to that first Christmas. But all that's happened has given *options* to melanoma patients that have never been there before, and many of us count ourselves oddly fortunate to be riding the wave of these new options. But with options come decision points, and, at least in my experience, no one is going to tell you exactly what to do and when. No one will say, "You must go to this hospital," or, "You must see this doctor," or, "This is the treatment we are going to do, you have no choice." Right now especially, you have options, who will treat you and where, and what that treatment will be. What is most frightening for me personally is when those options start to run out. Today, though, I still have options available to me, as do you. This doesn't mean that you won't hear strong opinions from doctors, nurses, family members, or even others here on this forum, but in the end, the choices are yours (and yes, that can feel lonely).There's lots of good information about treatment options both in the replies above and elsewhere on the forum, I won't go into my own treatment history here, feel free to click on my profile to read more. I'm relatively new to this forum, but not new to melanoma. I've learned more than I ever wanted to know about melanoma. I knew that my story was unique, but you'll see here that there are many unique paths that people have followed on their journeys. I don't know if I've made the perfect choices on my own journey, but I am confident that I've made the best choices I could with the information I had along the way. Those decisions weren't made in a vacuum, but working with doctors who I've trusted and who were willing, on a few occassions, to suggest options that might not be in their proverbial "wheel house". Even within a single institution, it should be a team approach, with medical oncologists, surgical oncologists, radiation oncologists, etc.If I can make a couple of simple suggestions, again only based on my own experience, that might help you. First, make sure your "home" doctors in Alabama are talking with the doctors you've seen at MDA. My "home" hospital is an NCI-designated Comprehensive Cancer Center here in Philadelphia, but I spent about 9 months participating at a clinical trial at NCI-NIH about three hours away in Bethesda, MD (in part because my doctors were willing to make referrals outside their institutions when appropriate). All along, however, they were consulting back-and-forth, helping us navigate through our decisions. I found that there was rarely disagreement about the best next step. The only downside is that it can sometimes seem like things move along more slowly while waiting for doctors to be able to coordinate a time to discuss my case. Second, as has been stated, I've heard great things about MDA. They're often at or near the top ranking for many cancers, including melanoma. But if they're not right for you, that's O.K. Whether it's finding another doctor there or going to another institution, it's worth considering. You need to be comfortable. From what I know, MDA is huge, which can be intimidating to some people, which again, is O.K. Personally, I've found that the hospital I go to has turned out to be a good fit for my personality. It's on the smaller side of cancer hospitals and has an almost "family" feel, at least to me, but it's still one of the 30 or so NCI Comprehensive Cancer Centers. Whether it's my doctors, nurses, scan technicians, radiation therapists, or receptionists, I know many of them by name and they the same about me. I know others who have had a different experience and felt that the hospital was too small, etc. My point isn't to brag about my hospital, only to illustrate an important point. Rankings and surveys are unavoidable, but they can do a disservice in thinking that there is the "best cancer center" or "perfect hospital" or "absolute top melanoma treatment center". There is only a best option and a best fit *for you*. Finding that fit is taking an active role in all aspects of your treatment and one way of looking at it is it's another way of not being a "guinea pig" and instead taking charge. Seek the opinions of others on this board and elsewhere as you try to find that right fit. I wish you the best.Joe -
- June 12, 2014 at 6:09 pm
Robbie, lots of good ideas and opinions in the previous replies to your post, so I'll risk repeating some of what's already been said in the hope of perhaps reinforcing it. First, I'm sorry to hear about your frustrating experience recently; it can't feel good to feel like you're being bounced around like that. As Celeste pointed out, though, consider that perhaps both MDA and your local doctors were actually trying to do what's in your best interest, both by MDA giving you the option of having the procedure closer to home and by your doctors in Alabama being humble enough to suggest that maybe they weren't the best qualified in your particular case.So much has happened with melanoma in the past several years. I was diagnosed in the summer of 2010 and was Stage IV from the beginning – my four year "anniversary" is coming up in a few weeks and in all honesty, I questioned back then whether I'd even make it six months to that first Christmas. But all that's happened has given *options* to melanoma patients that have never been there before, and many of us count ourselves oddly fortunate to be riding the wave of these new options. But with options come decision points, and, at least in my experience, no one is going to tell you exactly what to do and when. No one will say, "You must go to this hospital," or, "You must see this doctor," or, "This is the treatment we are going to do, you have no choice." Right now especially, you have options, who will treat you and where, and what that treatment will be. What is most frightening for me personally is when those options start to run out. Today, though, I still have options available to me, as do you. This doesn't mean that you won't hear strong opinions from doctors, nurses, family members, or even others here on this forum, but in the end, the choices are yours (and yes, that can feel lonely).There's lots of good information about treatment options both in the replies above and elsewhere on the forum, I won't go into my own treatment history here, feel free to click on my profile to read more. I'm relatively new to this forum, but not new to melanoma. I've learned more than I ever wanted to know about melanoma. I knew that my story was unique, but you'll see here that there are many unique paths that people have followed on their journeys. I don't know if I've made the perfect choices on my own journey, but I am confident that I've made the best choices I could with the information I had along the way. Those decisions weren't made in a vacuum, but working with doctors who I've trusted and who were willing, on a few occassions, to suggest options that might not be in their proverbial "wheel house". Even within a single institution, it should be a team approach, with medical oncologists, surgical oncologists, radiation oncologists, etc.If I can make a couple of simple suggestions, again only based on my own experience, that might help you. First, make sure your "home" doctors in Alabama are talking with the doctors you've seen at MDA. My "home" hospital is an NCI-designated Comprehensive Cancer Center here in Philadelphia, but I spent about 9 months participating at a clinical trial at NCI-NIH about three hours away in Bethesda, MD (in part because my doctors were willing to make referrals outside their institutions when appropriate). All along, however, they were consulting back-and-forth, helping us navigate through our decisions. I found that there was rarely disagreement about the best next step. The only downside is that it can sometimes seem like things move along more slowly while waiting for doctors to be able to coordinate a time to discuss my case. Second, as has been stated, I've heard great things about MDA. They're often at or near the top ranking for many cancers, including melanoma. But if they're not right for you, that's O.K. Whether it's finding another doctor there or going to another institution, it's worth considering. You need to be comfortable. From what I know, MDA is huge, which can be intimidating to some people, which again, is O.K. Personally, I've found that the hospital I go to has turned out to be a good fit for my personality. It's on the smaller side of cancer hospitals and has an almost "family" feel, at least to me, but it's still one of the 30 or so NCI Comprehensive Cancer Centers. Whether it's my doctors, nurses, scan technicians, radiation therapists, or receptionists, I know many of them by name and they the same about me. I know others who have had a different experience and felt that the hospital was too small, etc. My point isn't to brag about my hospital, only to illustrate an important point. Rankings and surveys are unavoidable, but they can do a disservice in thinking that there is the "best cancer center" or "perfect hospital" or "absolute top melanoma treatment center". There is only a best option and a best fit *for you*. Finding that fit is taking an active role in all aspects of your treatment and one way of looking at it is it's another way of not being a "guinea pig" and instead taking charge. Seek the opinions of others on this board and elsewhere as you try to find that right fit. I wish you the best.Joe -
- June 12, 2014 at 6:09 pm
Robbie, lots of good ideas and opinions in the previous replies to your post, so I'll risk repeating some of what's already been said in the hope of perhaps reinforcing it. First, I'm sorry to hear about your frustrating experience recently; it can't feel good to feel like you're being bounced around like that. As Celeste pointed out, though, consider that perhaps both MDA and your local doctors were actually trying to do what's in your best interest, both by MDA giving you the option of having the procedure closer to home and by your doctors in Alabama being humble enough to suggest that maybe they weren't the best qualified in your particular case.So much has happened with melanoma in the past several years. I was diagnosed in the summer of 2010 and was Stage IV from the beginning – my four year "anniversary" is coming up in a few weeks and in all honesty, I questioned back then whether I'd even make it six months to that first Christmas. But all that's happened has given *options* to melanoma patients that have never been there before, and many of us count ourselves oddly fortunate to be riding the wave of these new options. But with options come decision points, and, at least in my experience, no one is going to tell you exactly what to do and when. No one will say, "You must go to this hospital," or, "You must see this doctor," or, "This is the treatment we are going to do, you have no choice." Right now especially, you have options, who will treat you and where, and what that treatment will be. What is most frightening for me personally is when those options start to run out. Today, though, I still have options available to me, as do you. This doesn't mean that you won't hear strong opinions from doctors, nurses, family members, or even others here on this forum, but in the end, the choices are yours (and yes, that can feel lonely).There's lots of good information about treatment options both in the replies above and elsewhere on the forum, I won't go into my own treatment history here, feel free to click on my profile to read more. I'm relatively new to this forum, but not new to melanoma. I've learned more than I ever wanted to know about melanoma. I knew that my story was unique, but you'll see here that there are many unique paths that people have followed on their journeys. I don't know if I've made the perfect choices on my own journey, but I am confident that I've made the best choices I could with the information I had along the way. Those decisions weren't made in a vacuum, but working with doctors who I've trusted and who were willing, on a few occassions, to suggest options that might not be in their proverbial "wheel house". Even within a single institution, it should be a team approach, with medical oncologists, surgical oncologists, radiation oncologists, etc.If I can make a couple of simple suggestions, again only based on my own experience, that might help you. First, make sure your "home" doctors in Alabama are talking with the doctors you've seen at MDA. My "home" hospital is an NCI-designated Comprehensive Cancer Center here in Philadelphia, but I spent about 9 months participating at a clinical trial at NCI-NIH about three hours away in Bethesda, MD (in part because my doctors were willing to make referrals outside their institutions when appropriate). All along, however, they were consulting back-and-forth, helping us navigate through our decisions. I found that there was rarely disagreement about the best next step. The only downside is that it can sometimes seem like things move along more slowly while waiting for doctors to be able to coordinate a time to discuss my case. Second, as has been stated, I've heard great things about MDA. They're often at or near the top ranking for many cancers, including melanoma. But if they're not right for you, that's O.K. Whether it's finding another doctor there or going to another institution, it's worth considering. You need to be comfortable. From what I know, MDA is huge, which can be intimidating to some people, which again, is O.K. Personally, I've found that the hospital I go to has turned out to be a good fit for my personality. It's on the smaller side of cancer hospitals and has an almost "family" feel, at least to me, but it's still one of the 30 or so NCI Comprehensive Cancer Centers. Whether it's my doctors, nurses, scan technicians, radiation therapists, or receptionists, I know many of them by name and they the same about me. I know others who have had a different experience and felt that the hospital was too small, etc. My point isn't to brag about my hospital, only to illustrate an important point. Rankings and surveys are unavoidable, but they can do a disservice in thinking that there is the "best cancer center" or "perfect hospital" or "absolute top melanoma treatment center". There is only a best option and a best fit *for you*. Finding that fit is taking an active role in all aspects of your treatment and one way of looking at it is it's another way of not being a "guinea pig" and instead taking charge. Seek the opinions of others on this board and elsewhere as you try to find that right fit. I wish you the best.Joe -
- June 12, 2014 at 9:51 pm
Robbie:
You have received a lot of good advice in the previous posts. I would echo two things:
–if you decide you cannot go back to MD Anderson the next closest spot for a large, strong melanoma program is likely Vanderbilt. They have a good team and are leading the field in a number of areas.
–MD Anderson is a good place for melanoma treatment, but can take some pateince to navigate. I have heard of others having an experiencie similar to yours, and have heard from people who had a smooth, seamless experience. Dr. Jeff Gershenwald is a surgical oncologist there. If you can see him I promise he will treat you well.
I have not read the early post about clinical trials, but I am a big believer in trials. One of the most promising melanoma drug classes, anti-PD1, is only available through a clinical trial right now (or through expanded access, which counts as the same thing). Five years ago I used to say routinely, "If you have metastatic melanoma and your doctor is not at least talking with you about a clinical trial you need to get a new doctor." About four months ago I mentioned this to a cuople of outstanding melanoma experts and they both said, "I think that is still true."
Tim–MRF
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- June 12, 2014 at 9:51 pm
Robbie:
You have received a lot of good advice in the previous posts. I would echo two things:
–if you decide you cannot go back to MD Anderson the next closest spot for a large, strong melanoma program is likely Vanderbilt. They have a good team and are leading the field in a number of areas.
–MD Anderson is a good place for melanoma treatment, but can take some pateince to navigate. I have heard of others having an experiencie similar to yours, and have heard from people who had a smooth, seamless experience. Dr. Jeff Gershenwald is a surgical oncologist there. If you can see him I promise he will treat you well.
I have not read the early post about clinical trials, but I am a big believer in trials. One of the most promising melanoma drug classes, anti-PD1, is only available through a clinical trial right now (or through expanded access, which counts as the same thing). Five years ago I used to say routinely, "If you have metastatic melanoma and your doctor is not at least talking with you about a clinical trial you need to get a new doctor." About four months ago I mentioned this to a cuople of outstanding melanoma experts and they both said, "I think that is still true."
Tim–MRF
-
- June 12, 2014 at 9:51 pm
Robbie:
You have received a lot of good advice in the previous posts. I would echo two things:
–if you decide you cannot go back to MD Anderson the next closest spot for a large, strong melanoma program is likely Vanderbilt. They have a good team and are leading the field in a number of areas.
–MD Anderson is a good place for melanoma treatment, but can take some pateince to navigate. I have heard of others having an experiencie similar to yours, and have heard from people who had a smooth, seamless experience. Dr. Jeff Gershenwald is a surgical oncologist there. If you can see him I promise he will treat you well.
I have not read the early post about clinical trials, but I am a big believer in trials. One of the most promising melanoma drug classes, anti-PD1, is only available through a clinical trial right now (or through expanded access, which counts as the same thing). Five years ago I used to say routinely, "If you have metastatic melanoma and your doctor is not at least talking with you about a clinical trial you need to get a new doctor." About four months ago I mentioned this to a cuople of outstanding melanoma experts and they both said, "I think that is still true."
Tim–MRF
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