I have read numerous posts on this forum advising people to seek out a multiple myeloma "expert", in preference to a board certified oncologist or hematologist for treatment.
I do think everyone would want an expert, rather than a novice, to address this illness, or any illness for that matter. Still, I wonder how one would decide on who is an "expert" and who isn't? It is true that some doctors who treat myeloma publish their statistics on numbers treated and survival results, but who is vetting these statistics? How much of the "expertise" is supported by large amounts of time devoted to marketing and self-promotion?
There is, after all, no recognized credentialed "multiple myeloma" medical specialty, at least not in the USA. And how important is experience itself, especially in light of the complexities of this disease? After all, Albert Einstein had no experience publishing on physics before his special and general relativity papers revolutionized that field.
I can understand the value of second and even third opinions, but the loose way "expertise" in treating multiple myeloma is discussed makes me wonder about the value of such discussions. Perhaps I am missing something?
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Multiple myeloma experts
Just a quick note for those of you who may have come to this discussion thread looking for a list of multiple myeloma experts. There are several resources here at The Beacon that can help you.
First, you can consult the Beacon's list of multiple myeloma treatment centers located in the United States. Most of the centers on the list have at least one myeloma specialist on staff. Many of them have several myeloma specialists.
Second, there is a list here in the forum of IMWG members. The International Myeloma Working Group consists of leading myeloma specialists from around the world who collaborate on a broad range of myeloma research projects.
Third, if you live someplace that isn't really addressed by the above two resources, or if you simply want additional advice, don't hesitate to post a question in the forum describing what you are looking for. That's what the forum is for!
First, you can consult the Beacon's list of multiple myeloma treatment centers located in the United States. Most of the centers on the list have at least one myeloma specialist on staff. Many of them have several myeloma specialists.
Second, there is a list here in the forum of IMWG members. The International Myeloma Working Group consists of leading myeloma specialists from around the world who collaborate on a broad range of myeloma research projects.
Third, if you live someplace that isn't really addressed by the above two resources, or if you simply want additional advice, don't hesitate to post a question in the forum describing what you are looking for. That's what the forum is for!
Re: Multiple myeloma experts
Hi MrPotatohead,
I think you're basically asking two questions. The first is: What makes someone a "multiple myeloma expert" (or multiple myeloma specialist). The second is: Does a myeloma patient benefit by being under the care of a myeloma specialist as opposed to your run-of-the-mill haematologist-oncologist?
On the first question, I don't think it's as hard as you make it seem to determine whether or not someone is a myeloma specialist. One way is to just ask: Does the doctor see and treat primarily myeloma patients? If you want to get even more specific, you can ask: If the doctor regularly conducts and publishes research, is it mainly focused on multiple myeloma?
You can find the answers to those questions by checking information about the doctor on their practice or hospital websites, by speaking with them, and by checking Pubmed. If the hospital website says that Dr. Smith is a haematologist-oncologist whose interests included leukemia, lymphoma, and plasma cell disorders, that sends up some red flags. If, on the other hand, the website says that Dr. Jones focus on plasma cell disorders, with a particular focus on multiple myeloma and amyloidosis, then Dr. Jones is more likely to be a myeloma specialist than Dr. Smith. Checking Pubmed will probably provide additional insight as to the focus of Dr. Jones and Dr. Smith.
On the second question -- is there a benefit to seeing a myeloma specialist -- I think the answer is clearly yes. You answered the question yourself, in many ways, with your statement "And how important is experience itself, especially in light of the complexities of this disease?" Do you want a generalist giving you advice about a disease that is particularly complex?
I think a simple analogy clarifies the issue a lot. If you have a car that many other people drive, then if it starts to have engine trouble, you can probably go to just about any service centre and expect to find a mechanic who is going to be able to fix the problem, and fix it correctly.
But what if you have a very rare car, which has a very unique type of engine? And let's say that, on top of that, not only is the engine in your car rare, but the techniques used to diagnose problems with that engine, and fix them, are changing rapidly. Would you still take that rare car, with its rare type of engine, to a general auto mechanic, and expect to have the problem fixed correctly and reliably?
I wouldn't, and I doubt you would.
Yes, many cases of multiple myeloma, particularly newly diagnosed multiple myeloma, can be handled by a standard haematologist-oncologist. Eventually, though, almost every "standard" myeloma case becomes "non-standard" and very unique. And that's when it really makes a difference to have the perspective of a doctor who has seen lots of myeloma cases, and is up on the latest research. Also, a myeloma specialist is likely to be at a centre where many different clinical trials are being carried out, expanding the treatment options for patients under the doctor's care.
One final comment: Your assumption that many myeloma specialists tout statistics about their practices is, in my opinion, incorrect. It's actually rare, since most myeloma specialists recognize the limits of such statistics. There are a few specialists and treatment centres that do what you've described, but they are what I would call "edge" cases, not really in the mainstream of the field.
Cheers!
I think you're basically asking two questions. The first is: What makes someone a "multiple myeloma expert" (or multiple myeloma specialist). The second is: Does a myeloma patient benefit by being under the care of a myeloma specialist as opposed to your run-of-the-mill haematologist-oncologist?
On the first question, I don't think it's as hard as you make it seem to determine whether or not someone is a myeloma specialist. One way is to just ask: Does the doctor see and treat primarily myeloma patients? If you want to get even more specific, you can ask: If the doctor regularly conducts and publishes research, is it mainly focused on multiple myeloma?
You can find the answers to those questions by checking information about the doctor on their practice or hospital websites, by speaking with them, and by checking Pubmed. If the hospital website says that Dr. Smith is a haematologist-oncologist whose interests included leukemia, lymphoma, and plasma cell disorders, that sends up some red flags. If, on the other hand, the website says that Dr. Jones focus on plasma cell disorders, with a particular focus on multiple myeloma and amyloidosis, then Dr. Jones is more likely to be a myeloma specialist than Dr. Smith. Checking Pubmed will probably provide additional insight as to the focus of Dr. Jones and Dr. Smith.
On the second question -- is there a benefit to seeing a myeloma specialist -- I think the answer is clearly yes. You answered the question yourself, in many ways, with your statement "And how important is experience itself, especially in light of the complexities of this disease?" Do you want a generalist giving you advice about a disease that is particularly complex?
I think a simple analogy clarifies the issue a lot. If you have a car that many other people drive, then if it starts to have engine trouble, you can probably go to just about any service centre and expect to find a mechanic who is going to be able to fix the problem, and fix it correctly.
But what if you have a very rare car, which has a very unique type of engine? And let's say that, on top of that, not only is the engine in your car rare, but the techniques used to diagnose problems with that engine, and fix them, are changing rapidly. Would you still take that rare car, with its rare type of engine, to a general auto mechanic, and expect to have the problem fixed correctly and reliably?
I wouldn't, and I doubt you would.
Yes, many cases of multiple myeloma, particularly newly diagnosed multiple myeloma, can be handled by a standard haematologist-oncologist. Eventually, though, almost every "standard" myeloma case becomes "non-standard" and very unique. And that's when it really makes a difference to have the perspective of a doctor who has seen lots of myeloma cases, and is up on the latest research. Also, a myeloma specialist is likely to be at a centre where many different clinical trials are being carried out, expanding the treatment options for patients under the doctor's care.
One final comment: Your assumption that many myeloma specialists tout statistics about their practices is, in my opinion, incorrect. It's actually rare, since most myeloma specialists recognize the limits of such statistics. There are a few specialists and treatment centres that do what you've described, but they are what I would call "edge" cases, not really in the mainstream of the field.
Cheers!
Re: Multiple myeloma experts
Excellent response / analogy, Ian!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Multiple myeloma experts
Ian's response is so appropriate it should be on everyone's radar. There aren't a huge number of myeloma specialists in the US, but there are enough of them scattered around the country that everyone should be able to access a myeloma specialist if s/he is willing to travel a few hours from home. Also, I have read/heard of too many people with myeloma who only went to a local hematologist/oncologist and received old treatment regimens that weren't successful and were never given any of the newer drugs with fatal consequences. A myeloma specialist is up to date on the research, the new drugs, the new drug combinations and when to try different regimens and maybe even some of the older regimens.
I would differ about how myeloma specialists may be listed in their practice, or hospital, website and what publications they have done. Where I am treated, my myeloma specialist is listed as treating blood disorders, which are specified. Because he is director of the transplant program, he is involved tangentially with all of the blood disorders and with some of the other cancers that use transplants as part of the treatment possibilities. His early publications were in various blood cancers and in breast cancers ,.. when transplants were being trialed as a treatment option. But, most of his recent publications are in myeloma with the occasional publication in leukemia because of the CART-19 trials in people with leukemia and now in myeloma. The large percentage of his patients have myeloma, but he still sees a few patients with other blood cancers and the occasional breast cancer patient who have been with him since he started practicing 30 years ago.
Getting second and third opinions is helpful when you are making a major decision about who you want as your oncologist for the long haul and for when you are making the decision about what treatment path to follow. For those of us who are deciding whether to do a transplant, or not, getting the opinion of another oncologist who is looking at your test results and may have a different opinion as to approach can be helpful. We are constantly making major decisions about how to manage our myeloma. And, for me, getting input from other experts, reading the research, and talking to others with myeloma who have gone before all give me information to put together to make the best decision for me.
Such an interesting topic today. Thank you Mr. Potatohead for beginning the discussion.
Nancy in Phila
I would differ about how myeloma specialists may be listed in their practice, or hospital, website and what publications they have done. Where I am treated, my myeloma specialist is listed as treating blood disorders, which are specified. Because he is director of the transplant program, he is involved tangentially with all of the blood disorders and with some of the other cancers that use transplants as part of the treatment possibilities. His early publications were in various blood cancers and in breast cancers ,.. when transplants were being trialed as a treatment option. But, most of his recent publications are in myeloma with the occasional publication in leukemia because of the CART-19 trials in people with leukemia and now in myeloma. The large percentage of his patients have myeloma, but he still sees a few patients with other blood cancers and the occasional breast cancer patient who have been with him since he started practicing 30 years ago.
Getting second and third opinions is helpful when you are making a major decision about who you want as your oncologist for the long haul and for when you are making the decision about what treatment path to follow. For those of us who are deciding whether to do a transplant, or not, getting the opinion of another oncologist who is looking at your test results and may have a different opinion as to approach can be helpful. We are constantly making major decisions about how to manage our myeloma. And, for me, getting input from other experts, reading the research, and talking to others with myeloma who have gone before all give me information to put together to make the best decision for me.
Such an interesting topic today. Thank you Mr. Potatohead for beginning the discussion.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Multiple myeloma experts
Please bear in mind, that multiple myeloma is an "Orphan Disease", and as such due to 20,000 new patients, there is no steady stream of multiple myeloma patients to any one facility, or facilities, such that a Board certification process is possible. ( in multiple myeloma)
Many Oncologists/Internists/ Hematologists around the country do indeed see a fair number of multiple myeloma patients; However, very few can afford to limit their practices to just multiple myeloma patients.
Even the best known myeloma experts see non-MM patients ( MDS; Amyloid; Leukemia, etc).( ie. all B cell sister diseases to multiple myeloma).
Many Oncologists/Internists/ Hematologists around the country do indeed see a fair number of multiple myeloma patients; However, very few can afford to limit their practices to just multiple myeloma patients.
Even the best known myeloma experts see non-MM patients ( MDS; Amyloid; Leukemia, etc).( ie. all B cell sister diseases to multiple myeloma).
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Rneb
Re: Multiple myeloma experts
NSTEWART wrote:
I think this is why the hemo and rad. onco. met and decided yesterday to send my father to Princess Margaret's Myeloma Clinic in Toronto. Solitary plasmacytoma is not something our local hospital's cancer centre sees everyday, plus the fact that my dad's leg numbness and pain won't go away added to the M protein issue.
A myeloma specialist is up to date on the research, the new drugs, the new drug combinations and when to try different regimens and maybe even some of the older regimens.
I think this is why the hemo and rad. onco. met and decided yesterday to send my father to Princess Margaret's Myeloma Clinic in Toronto. Solitary plasmacytoma is not something our local hospital's cancer centre sees everyday, plus the fact that my dad's leg numbness and pain won't go away added to the M protein issue.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Multiple myeloma experts
Hi Little Monkey, Sorry to hear of what your father is going through, and he is fortunate to have you helping him with his back and plasmacytoma issues. Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma experts
Ian, Nancy, Rneb
Thanks for your posts, which cleared up a lot for me with respect to the issue of myeloma expertise. Extremely helpful and much appreciated.
Let me be a little bit more specific. My oncologist treats all kinds of cancer, including multiple myeloma. I did seek out a second opinion from a recognized myeloma treatment center on the West Coast in the USA, where I live. There was a slight difference in the recommendations for treatment between the two.
It does appear that my oncologist is more experienced in the broad sense of the word - specifically in treating cancer, including myeloma. However, the treatment center has treated many more patients with multiple myeloma. But the specific individual I had my second opinion consultation with from that center appears to be relatively inexperienced. Under these circumstances, it is not clear to me whether the "expertise" I was availed of was that of the specific doctor I conferred with, or represented a broader consensus reflecting the collective experience of others in the treatment center. In other words, how does one know where the "expertise" is coming from? I suppose you really need to dig further until you identify a specific name, rather than that of an institution.
Thanks again for all the great information.
Thanks for your posts, which cleared up a lot for me with respect to the issue of myeloma expertise. Extremely helpful and much appreciated.
Let me be a little bit more specific. My oncologist treats all kinds of cancer, including multiple myeloma. I did seek out a second opinion from a recognized myeloma treatment center on the West Coast in the USA, where I live. There was a slight difference in the recommendations for treatment between the two.
It does appear that my oncologist is more experienced in the broad sense of the word - specifically in treating cancer, including myeloma. However, the treatment center has treated many more patients with multiple myeloma. But the specific individual I had my second opinion consultation with from that center appears to be relatively inexperienced. Under these circumstances, it is not clear to me whether the "expertise" I was availed of was that of the specific doctor I conferred with, or represented a broader consensus reflecting the collective experience of others in the treatment center. In other words, how does one know where the "expertise" is coming from? I suppose you really need to dig further until you identify a specific name, rather than that of an institution.
Thanks again for all the great information.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Multiple myeloma experts
Hi MrPotatohead,
I can see why you're concerned; you're specific situation is a little bit more complicated. I guess if I were in your situation, I would try to get from each doctor their rationale for why their recommendation should be preferred to the other recommendation, and then see how the feedback sits with me.
I do think that, if I had to make the choice with no further information whatsoever, I would still go with the recommendation from the myeloma specialist. The specialist, even if he/she is young, is probably keeping closer tabs on the latest myeloma-related research than the oncologist, and also may have consulted with his/her colleagues about your case before coming up with a recommended treatment regimen.
It's also possible, as you mentioned, that the treatment center has an internally developed protocol that it follows for patients such as yourself. Again, one would think that, whatever that protocol is, it probably has been developed with more awareness of the latest myeloma-related research than the approach recommended by your oncologist.
Mind you, I'm saying all of this with just basic information about the two doctors. You've spoken with both of them and may have picked up small hints that might reasonably justify thinking, for example, that the myeloma specialist isn't all that informed, and maybe the oncologist really knows what he/she is doing when it comes to myeloma. Also, perhaps you've looked closer at the two recommendations, reading up about them, and see more sense in the oncologist's recommendation.
There are a lot of variables that you'll have to weigh. I (and the rest of us here) really can only speak to some general things we might use to guide us.
Good luck!
I can see why you're concerned; you're specific situation is a little bit more complicated. I guess if I were in your situation, I would try to get from each doctor their rationale for why their recommendation should be preferred to the other recommendation, and then see how the feedback sits with me.
I do think that, if I had to make the choice with no further information whatsoever, I would still go with the recommendation from the myeloma specialist. The specialist, even if he/she is young, is probably keeping closer tabs on the latest myeloma-related research than the oncologist, and also may have consulted with his/her colleagues about your case before coming up with a recommended treatment regimen.
It's also possible, as you mentioned, that the treatment center has an internally developed protocol that it follows for patients such as yourself. Again, one would think that, whatever that protocol is, it probably has been developed with more awareness of the latest myeloma-related research than the approach recommended by your oncologist.
Mind you, I'm saying all of this with just basic information about the two doctors. You've spoken with both of them and may have picked up small hints that might reasonably justify thinking, for example, that the myeloma specialist isn't all that informed, and maybe the oncologist really knows what he/she is doing when it comes to myeloma. Also, perhaps you've looked closer at the two recommendations, reading up about them, and see more sense in the oncologist's recommendation.
There are a lot of variables that you'll have to weigh. I (and the rest of us here) really can only speak to some general things we might use to guide us.
Good luck!
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