I'm wondering how many multiple myeloma patients the average oncologist or hematologist is treating at any given time. Any idea?
I am trying to assist a friend with a new diagnosis to find a doctor who has enough ongoing experience and competence in this treatment area. This is only one of many considerations that I am looking into, but I do think it is important.
My friend lives in rural Wisconsin and doesn't have easy access to an academic treatment center, so I would like to help him find the best local option. Even if he finds a distant multiple myeloma specialist for occasional visits, I'd like to help him find the best local provider with experience for his regular treatment and exams.
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Cameron - Name: Cameron
- Who do you know with myeloma?: Friend
- When were you/they diagnosed?: 2015
- Age at diagnosis: 63
Re: How many myeloma patients do oncologists typically see?
We heard from a renowned myeloma expert at MD Anderson that the average oncologist in the USA sees 2-4 multiple myeloma patients a year at best. He has 20+ on his schedule weekly (he spends 4 days in research and 1 day in consultations).
My wife was diagnosed with MGUS and the regular oncologist we first saw immediately jumped to smoldering in 5 years and average life expectancy of 10 years after that. All of it in 5 minutes. He wanted a bone marrow biopsy ASAP. We were shocked and still are 8 months later!
The expert at MD Anderson (we went for a 2nd opinion ourselves within 2 months of diagnosis) smiled at this story and said 5 minutes is probably all the regular practitioner could say about myeloma. After 3 months follow up, we are still with what looks like a very stable MGUS (IgA kappa) with an expert who told us he really did not feel strongly about a bone marrow biopsy in our case and would be surprised if there was any problem. We are scheduled for a 6 months follow up now.
Bottom line: local oncologist(s?) did not know nearly enough about this complex disease to really make sound decisions (and pass correct information!) on the way forward. You are better off finding an expert from the beginning.
My wife was diagnosed with MGUS and the regular oncologist we first saw immediately jumped to smoldering in 5 years and average life expectancy of 10 years after that. All of it in 5 minutes. He wanted a bone marrow biopsy ASAP. We were shocked and still are 8 months later!
The expert at MD Anderson (we went for a 2nd opinion ourselves within 2 months of diagnosis) smiled at this story and said 5 minutes is probably all the regular practitioner could say about myeloma. After 3 months follow up, we are still with what looks like a very stable MGUS (IgA kappa) with an expert who told us he really did not feel strongly about a bone marrow biopsy in our case and would be surprised if there was any problem. We are scheduled for a 6 months follow up now.
Bottom line: local oncologist(s?) did not know nearly enough about this complex disease to really make sound decisions (and pass correct information!) on the way forward. You are better off finding an expert from the beginning.
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MGUSer
Re: How many myeloma patients do oncologists typically see?
What part of Wisconsin is he in? I live in southeastern Wisconsin. Feel free to pm me if you like.
I drive about one hour to UW Milwaukee / Froedert Hospital and see a specialist there. Dr. Hari is the key multiple myeloma specialist in that group.
I can also share my experience with going to a non-specialist hem/onc.
I am only MGUS, but I was just diagnosed a year ago, so I have had 6-7 appointments with the doctor since.
I drive about one hour to UW Milwaukee / Froedert Hospital and see a specialist there. Dr. Hari is the key multiple myeloma specialist in that group.
I can also share my experience with going to a non-specialist hem/onc.
I am only MGUS, but I was just diagnosed a year ago, so I have had 6-7 appointments with the doctor since.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: How many myeloma patients do oncologists typically see?
One of the only ways that I know of to find out how many myeloma patients a general oncologist sees in one year is to call each doctor's office and ask for that information. You might also ask if the oncologist consults with a specialist in myeloma and, if so, who that oncologist is.
You might also go the other route and call one of the cancer centers that has a myeloma program and ask who in your friend's area consults with them. Call Mayo, UIowa, Chicago (I don't remember the name of the cancer center there), etc. Also, if there is a myeloma support group in your friend's area, he could go to a meeting and ask the other attendees who they are treated by, etc
You are a wonderful friend to be asking for this information for him. I know that you / he will find the answer that works the best for him. Most of the specialists at the major cancer centers will coordinate care with a local oncologist. So, your friend might benefit from going to a specialist even if not nearby so that he can develop a relationship for his local oncologist to consult with. Usually all tests and treatment are done locally and forwarded to the specialist. Then the local oncologist follows the treatment regimen developed for the person by the specialist. Your friend might only need to see the specialist one or two times a year if things are going well.
It is also important for him to contact his insurance company to find out details about what is covered under his policy for second opinions out of state and treatment out of state and / or out of network. Also, check on coverage for an autologous stem cell transplant if that should be a recommendation for the future. Check on prescription coverage for top line drugs in case he is prescribed one of the oral drugs for treatment, such as Revlimid or pomalidomide (Pomalyst).
Is your friend still working? His insurance and prescriptions coverage might be fairly good if he is employed and insured through his employer.
Good luck to your friend and to you in gathering all of this information,
Nancy in Phila
You might also go the other route and call one of the cancer centers that has a myeloma program and ask who in your friend's area consults with them. Call Mayo, UIowa, Chicago (I don't remember the name of the cancer center there), etc. Also, if there is a myeloma support group in your friend's area, he could go to a meeting and ask the other attendees who they are treated by, etc
You are a wonderful friend to be asking for this information for him. I know that you / he will find the answer that works the best for him. Most of the specialists at the major cancer centers will coordinate care with a local oncologist. So, your friend might benefit from going to a specialist even if not nearby so that he can develop a relationship for his local oncologist to consult with. Usually all tests and treatment are done locally and forwarded to the specialist. Then the local oncologist follows the treatment regimen developed for the person by the specialist. Your friend might only need to see the specialist one or two times a year if things are going well.
It is also important for him to contact his insurance company to find out details about what is covered under his policy for second opinions out of state and treatment out of state and / or out of network. Also, check on coverage for an autologous stem cell transplant if that should be a recommendation for the future. Check on prescription coverage for top line drugs in case he is prescribed one of the oral drugs for treatment, such as Revlimid or pomalidomide (Pomalyst).
Is your friend still working? His insurance and prescriptions coverage might be fairly good if he is employed and insured through his employer.
Good luck to your friend and to you in gathering all of this information,
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: How many myeloma patients do oncologists typically see?
The number of patients the doctor sees is important. However, I think it important to state that the relationship is NOT "local oncologist" versus "myeloma specialist"; this is the local oncologist AND the myeloma specialist.
In my opinion, the setting and the number of patients seen by the myeloma specialist obviously increases his/her experience and understanding of multiple myeloma. At referral centers such as where I practice (Moffitt), we spend our days seeing, studying, and trying to develop new drugs or treatment strategies to control and hopefully cure multiple myeloma and other plasma cell disorders.
For instance, I see 20+ patients in a clinic day with another 10+ patients seen by advanced registered nurse practitioners (ARNPs). I cannot speak for all institutions, but at Moffitt we see 400+ new myeloma patients annually, with 8000-12000 multiple myeloma visits and over 140 myeloma-specific stem cell transplants. So my colleagues and I see a large number of myeloma patients.
In contrast, local oncologists will generally see 4-5 new myeloma patients annually (some less and some more, depending on their practice).
However, it is important to note that a large population of our myeloma patients at Moffitt are still treated by the local oncologist. They may see me every 2-12 months (or as needed) depending on the acuity of the situation and need.
My point is that I recommend your friend do his best to get to a multiple myeloma expert if he can, but he should not feel that he needs to travel to the specialist for everything (for therapy every day or even more than once). It is a partnership or team – patient, caregiver, local doctor, and myeloma specialist. There should be no hurt feelings or issues between the two (not to say that it is a perfect system).
I do feel that it is important that your friend have access to an expert (as should his local oncologist – we try to ensure that our community oncologists have direct access to us via a number of media).
Best of luck and keep us updated on your friend's experience.
In my opinion, the setting and the number of patients seen by the myeloma specialist obviously increases his/her experience and understanding of multiple myeloma. At referral centers such as where I practice (Moffitt), we spend our days seeing, studying, and trying to develop new drugs or treatment strategies to control and hopefully cure multiple myeloma and other plasma cell disorders.
For instance, I see 20+ patients in a clinic day with another 10+ patients seen by advanced registered nurse practitioners (ARNPs). I cannot speak for all institutions, but at Moffitt we see 400+ new myeloma patients annually, with 8000-12000 multiple myeloma visits and over 140 myeloma-specific stem cell transplants. So my colleagues and I see a large number of myeloma patients.
In contrast, local oncologists will generally see 4-5 new myeloma patients annually (some less and some more, depending on their practice).
However, it is important to note that a large population of our myeloma patients at Moffitt are still treated by the local oncologist. They may see me every 2-12 months (or as needed) depending on the acuity of the situation and need.
My point is that I recommend your friend do his best to get to a multiple myeloma expert if he can, but he should not feel that he needs to travel to the specialist for everything (for therapy every day or even more than once). It is a partnership or team – patient, caregiver, local doctor, and myeloma specialist. There should be no hurt feelings or issues between the two (not to say that it is a perfect system).
I do feel that it is important that your friend have access to an expert (as should his local oncologist – we try to ensure that our community oncologists have direct access to us via a number of media).
Best of luck and keep us updated on your friend's experience.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
5 posts
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