Long distance second opinions
January 27, 2017 8:35 AM Subscribe
I was diagnosed with an incurable cancer, in September. I like my oncologist, but I want to get second opinions on treatment. However, the doctors I want to talk to are far away, and I cannot switch my overall care to them. Any tips for managing this?
So far, my oncologist hasn't had any problem with my seeking outside opinions. I see a naturopath as well, and when I told her and asked her if the supplements he recommended were OK, she said they were fine and asked if I wanted her to send her notes to him as well. Now I'd like to seek opinions from myeloma specialists that live far away from me and also to see a doctor at an integrative cancer treatment center (please no comments on the overall trustworthiness of naturopaths and integrative treatment). I know that this is something people do - I've heard of patients who go to someplace like Memorial Sloan-Kettering for advice on treatment and then those doctors work with their local oncologists. But I find the whole idea really overwhelming, as if I'm saying that I don't trust my doctor (and she is a specialist in my cancer at a major cancer research center). On the other hand, it seems perfectly reasonable and even wise to seek a second opinion for cancer treatment. Also, my insurance in an HMO, so I will need to pay out of pocket for these second opinions, and I cannot switch my overall care to the other doctors I want to talk to. I would appreciate any tips on managing this - both with my oncologist and with the doctors I want to seek second opinions from. It just seems weird and awkward to me.
So far, my oncologist hasn't had any problem with my seeking outside opinions. I see a naturopath as well, and when I told her and asked her if the supplements he recommended were OK, she said they were fine and asked if I wanted her to send her notes to him as well. Now I'd like to seek opinions from myeloma specialists that live far away from me and also to see a doctor at an integrative cancer treatment center (please no comments on the overall trustworthiness of naturopaths and integrative treatment). I know that this is something people do - I've heard of patients who go to someplace like Memorial Sloan-Kettering for advice on treatment and then those doctors work with their local oncologists. But I find the whole idea really overwhelming, as if I'm saying that I don't trust my doctor (and she is a specialist in my cancer at a major cancer research center). On the other hand, it seems perfectly reasonable and even wise to seek a second opinion for cancer treatment. Also, my insurance in an HMO, so I will need to pay out of pocket for these second opinions, and I cannot switch my overall care to the other doctors I want to talk to. I would appreciate any tips on managing this - both with my oncologist and with the doctors I want to seek second opinions from. It just seems weird and awkward to me.
Best answer: It depends on the individual doctor, of course, but I would not be surprised if your doc would be thrilled to get a second opinion as long as it comes from someone or some institution that she admires. Researchers tend to be very much in favor of cross-communication.
I live not far from NYC, and was offered the chance to go to MSK or Columbia Presbyterian for a second (or even first) opinion, with the understanding that any treatment could be administered locally. I think that sort of arrangement is fairly common.
Best of luck.
posted by SemiSalt at 9:30 AM on January 27, 2017
I live not far from NYC, and was offered the chance to go to MSK or Columbia Presbyterian for a second (or even first) opinion, with the understanding that any treatment could be administered locally. I think that sort of arrangement is fairly common.
Best of luck.
posted by SemiSalt at 9:30 AM on January 27, 2017
Best answer: I am so sorry to hear of your diagnosis. And I think you're right to seek more opinions. As praeminure said. It's your life.
So I went and read an older question that revealed your diagnosis. And I wanted to let you know about a friend of mine who has kept an incredible blog about his now 10 year fight against the same cancer. I will memail you the link. The other great news is that he achieved sustained remission with a particular treatment at New York's Mount Sinai Medical Center (MSK is also doing research in this area and likely offers the same treatment).
I saw my friend yesterday. We talked retirement strategies. There is hope.
Anyway check your memail.
posted by spitbull at 9:31 AM on January 27, 2017 [4 favorites]
So I went and read an older question that revealed your diagnosis. And I wanted to let you know about a friend of mine who has kept an incredible blog about his now 10 year fight against the same cancer. I will memail you the link. The other great news is that he achieved sustained remission with a particular treatment at New York's Mount Sinai Medical Center (MSK is also doing research in this area and likely offers the same treatment).
I saw my friend yesterday. We talked retirement strategies. There is hope.
Anyway check your memail.
posted by spitbull at 9:31 AM on January 27, 2017 [4 favorites]
Best answer: Most oncologists are used to and fine with patients seeking second opinions from other major cancer centers. It's part of the deal.
I would call your insurance company about how they handle this (should be NBD) especially if you have a local network plan, as it will probably be out of network.
Then phone the intake department at the major cancer center of your choice. Tell them it's for a second opinon. They will be familiar with the second opinion process because they do a lot of these, and will walk you through what you need. You will almost certainly need to send test results and notes about your treatment to date over to them prior to your appointment.
posted by The Elusive Architeuthis at 9:55 AM on January 27, 2017
I would call your insurance company about how they handle this (should be NBD) especially if you have a local network plan, as it will probably be out of network.
Then phone the intake department at the major cancer center of your choice. Tell them it's for a second opinon. They will be familiar with the second opinion process because they do a lot of these, and will walk you through what you need. You will almost certainly need to send test results and notes about your treatment to date over to them prior to your appointment.
posted by The Elusive Architeuthis at 9:55 AM on January 27, 2017
Best answer: My husband was diagnosed with a blood disorder, myelodysplastic syndrome in 2013. It is lumped in with blood cancers, although his was a little different. He began the chemo for this, and initially had a terrific response, was doing well, and then it quit working.
During this time he discussed getting a second opinion with his hematologist and she was on board with it. It turned out that his treatment was standard, there were three chemo drugs to choose from, but his MDS was serious so they used the heavy hitter of the three.
Long story short is that he eventually had a bone marrow transplant, and is doing great today. It was done locally at a clinic about 45 minutes away from us. The whole time this was going on we were really just overwhelmed and confused, and hoping for the best, but it is just hard to go through. Memail me if you want.
posted by chocolatetiara at 11:22 AM on January 27, 2017
During this time he discussed getting a second opinion with his hematologist and she was on board with it. It turned out that his treatment was standard, there were three chemo drugs to choose from, but his MDS was serious so they used the heavy hitter of the three.
Long story short is that he eventually had a bone marrow transplant, and is doing great today. It was done locally at a clinic about 45 minutes away from us. The whole time this was going on we were really just overwhelmed and confused, and hoping for the best, but it is just hard to go through. Memail me if you want.
posted by chocolatetiara at 11:22 AM on January 27, 2017
Best answer: I am sorry to hear of your diagnosis. Another positive anecdote, our close family friend was diagnosed with myeloma 4 years ago now. He completed treatment, is in complete remission and walked his daughter down the aisle at her wedding this fall. He also teased me mercilessly during Thanksgiving dinner, as he has since I was a tiny sprog. Many cancer centers do have Johns Hopkins offers distance consultations on various cases. MD Anderson and Sloan Kettering offer distance second opinions on pathology, which can also guide treatment.
I wish you the very best in your treatment.
posted by goggie at 11:43 AM on January 27, 2017
I wish you the very best in your treatment.
posted by goggie at 11:43 AM on January 27, 2017
Best answer: Mass General and many, many other hospitals offer remote second opinions. They contact your doctors, get all your records, and work with you. MA General's remote 2nd opinions is here.
I had a very bad cancer diagnosis years ago and MA General's second opinion service gave me a very different treatment plan than the one I originally got. I did have to pay for the remote second opinion myself, though, around $750. But I switched to their doctors and followed their course of treatment. I'm totally fine now.
Cleveland Clinic offers remote second opinions.
Memorial Sloan Kettering's remote second opinions are here.
Memail me if you'd like more names. You got this.
posted by yes I said yes I will Yes at 12:17 PM on January 27, 2017
I had a very bad cancer diagnosis years ago and MA General's second opinion service gave me a very different treatment plan than the one I originally got. I did have to pay for the remote second opinion myself, though, around $750. But I switched to their doctors and followed their course of treatment. I'm totally fine now.
Cleveland Clinic offers remote second opinions.
Memorial Sloan Kettering's remote second opinions are here.
Memail me if you'd like more names. You got this.
posted by yes I said yes I will Yes at 12:17 PM on January 27, 2017
Best answer: My Mom was diagnosed with Multiple Myeloma in Sept 2000. At the time of her diagnosis life expectancies were only 3-5 yrs. But, thanks to an AMAZING Doctor and his team, when Mom passed she was just shy of starting year 12!!!!!!
My Mom's physician was Dr Rafat Abonour. He sees patients at IU Med Center in Indianapolis, IN. He's a leading Myeloma researcher and EXTREMELY COMPASSIONATE physician and human being!!!!!!!!! I even have his mobile #... Although I've only used it twice.
So, I cannot say NEARLY enough about the level of trust & gratitude I have for him!!!!!!! And Mom loved & trusted him & his team!!!!!!!! And, Mom even provided him a nickname , Dr Abby, that still lives on today!!!!!!! If you choose to seek out his advice, please mention the patient who nicknamed him Dr Abby!!!!!!!!!!!
I know this is probably the scariest time of your life. But, there IS HOPE!!!!!!!!!!! The medical community is hoping Myeloma will eventually be treated as a chronic illness like diabetes!!!!!!!
Prayers, Love & {{{HUGS}}} sent your way!!!!!
A VERY Grateful daughter,
Debbie Baker
posted by d.l.bfanoffangs at 3:48 PM on January 27, 2017
My Mom's physician was Dr Rafat Abonour. He sees patients at IU Med Center in Indianapolis, IN. He's a leading Myeloma researcher and EXTREMELY COMPASSIONATE physician and human being!!!!!!!!! I even have his mobile #... Although I've only used it twice.
So, I cannot say NEARLY enough about the level of trust & gratitude I have for him!!!!!!! And Mom loved & trusted him & his team!!!!!!!! And, Mom even provided him a nickname , Dr Abby, that still lives on today!!!!!!! If you choose to seek out his advice, please mention the patient who nicknamed him Dr Abby!!!!!!!!!!!
I know this is probably the scariest time of your life. But, there IS HOPE!!!!!!!!!!! The medical community is hoping Myeloma will eventually be treated as a chronic illness like diabetes!!!!!!!
Prayers, Love & {{{HUGS}}} sent your way!!!!!
A VERY Grateful daughter,
Debbie Baker
posted by d.l.bfanoffangs at 3:48 PM on January 27, 2017
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Sorry if you've already checked this, but are you sure that your HMO won't pay for a second opinion on cancer treatment from a tertiary center? It won't be called out in the summary of benefits as it's rather an obscure offering, but some plans do (mine did).
This is potentially your life at stake, so I wouldn't worry too much about social awkwardness with your doctor. Frankly, if she's unfussed about your consulting a naturopath, she's probably not going to be too bothered by your consulting another specialist. The second opinion is basically for a second diagnosis/staging and then a second recommendation for treatment. Your first doctor should be willing to carry out a recommended treatment that was not her first choice (unless she thinks it's wholly outside the standard of care, which is unlikely in this scenario). If she's not, you probably need to get another doctor, anyway.
posted by praemunire at 8:54 AM on January 27, 2017 [5 favorites]