Hello to all. I am new here and seeking help making decisions about care for my mother who is 80 years old. She has atrial fibrillation and is on medication for that, but otherwise in good health for her age. Recently, she complained of pain in her rib cage, and a blood test leads her oncologist to believe she has multiple myeloma. PET scan revealed lesion on rib. Biopsies are scheduled for rib cage and hip in the next few days.
The care she is currently receiving is at a hospital where I am concerned the oncologists there do not have enough experience with multiple myeloma to manage her care in the best way. I would much prefer that she get treatment at UAMS in Little Rock, Arkansas. So I am hesitant to go through with the currently scheduled biopsies. It seems to me the best solution is to have her primary care doctor refer her to the specialist in Little Rock, rather than staying with this oncologist.
This is all so confusing to me, but ultimately, I want her to have the very best care and don't want to duplicate testing unnecessarily. I just don't know what to do first. Should I call her primary doctor to discuss this?
Thanks for any help those of you who have experienced this can provide.
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Re: How to switch testing to a myeloma treatment center?
Hi Imolnar,
Welcome to the forum.
It's good to hear that you are looking after your mom and getting her under the care of a top multiple myeloma institution like UAMS.
Once you get a referral to UAMS (assuming that is what your mom's insurance first requires... which isn't always the case), you can simply tell UAMS about the situation and they can request all of the records from your mom's current facility.
But I would personally also request copies of all the records and test results (including a CD of the PET/CT results and the radiologist's PET/CT report). I would then take those records to her first UAMS appointment just in case some records might be missing from the institution-to-institution transfer and so that you can start to study her test results yourself. As you get more into this disease, you will find that it is extremely helpful to have your own copies of all the records so that you can easily ask questions about her situation on this forum and so that you can track her progress. Note that every person in the USA is legally entitled to copies of all their medical records, so don't be bashful about asking for copies.
If you haven't done so already, I might also suggest getting a medical power of attorney so that you can easily get these records yourself (some medical institutions require their own form to access another person's records). Also, your mom's current hospital may have an online portal whereby you can view and download most of your mom's current lab tests (although these portals don't always include things like radiologist's reports or doctor's writeups).
Hope this helps.
Welcome to the forum.
It's good to hear that you are looking after your mom and getting her under the care of a top multiple myeloma institution like UAMS.
Once you get a referral to UAMS (assuming that is what your mom's insurance first requires... which isn't always the case), you can simply tell UAMS about the situation and they can request all of the records from your mom's current facility.
But I would personally also request copies of all the records and test results (including a CD of the PET/CT results and the radiologist's PET/CT report). I would then take those records to her first UAMS appointment just in case some records might be missing from the institution-to-institution transfer and so that you can start to study her test results yourself. As you get more into this disease, you will find that it is extremely helpful to have your own copies of all the records so that you can easily ask questions about her situation on this forum and so that you can track her progress. Note that every person in the USA is legally entitled to copies of all their medical records, so don't be bashful about asking for copies.
If you haven't done so already, I might also suggest getting a medical power of attorney so that you can easily get these records yourself (some medical institutions require their own form to access another person's records). Also, your mom's current hospital may have an online portal whereby you can view and download most of your mom's current lab tests (although these portals don't always include things like radiologist's reports or doctor's writeups).
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How to switch testing to a myeloma treatment center?
Imolnar9:
I agree with Multibilly.
In my case my physician referred my case to Mayo Clinic after my local oncologist suggested Bone Marrow test.
He sent my reports to Mayo and got appointment at Mayo same day.
My report from Mayo is copied to my local hometown oncologists as well as my main physician whenever I visit Mayo.
Wish you the best to your Mom's recovery.
Happy New Year.
I agree with Multibilly.
In my case my physician referred my case to Mayo Clinic after my local oncologist suggested Bone Marrow test.
He sent my reports to Mayo and got appointment at Mayo same day.
My report from Mayo is copied to my local hometown oncologists as well as my main physician whenever I visit Mayo.
Wish you the best to your Mom's recovery.
Happy New Year.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: How to switch testing to a myeloma treatment center?
Hi Imolar:
Welcome. As usual, Multibilly offered excellent advice. An organization like UAMS does a very thorough (that's an understatement) evaluation of disease status. I wouldn't try to guess how many tests are performed on bone marrow aspirates - so I would inquire at UAMS if they would accept and analyze samples taken during your mothers bone marrow biopsy from another institute.
I also wouldn't be comfortable saying a PET scan, is a PET scan, is a PET scan. Radiologists at UAMS probably read 20 myeloma PET scans everyday. While a CD copy from another institution may contain enough information, when I try to view mine with a viewer, it appears to be a summary of numerous still shots that somehow or somebody deemed relevant. UAMS does extensive follow-up PET scans during treatment and they continuously compare earlier PET scans to recent PET scans. How they view side by side images I'll never know, but they gain valuable information.
UAMS also has excellent support system and they should be able to address via a phone call whether or not a second PET scan would be covered by your mothers insurance if they deem necessary. My experience with Little Rock is they prefer to do their entire evaluation prior to any chemotherapy is started by your local oncologist.
Just my opinions. Good Luck
Welcome. As usual, Multibilly offered excellent advice. An organization like UAMS does a very thorough (that's an understatement) evaluation of disease status. I wouldn't try to guess how many tests are performed on bone marrow aspirates - so I would inquire at UAMS if they would accept and analyze samples taken during your mothers bone marrow biopsy from another institute.
I also wouldn't be comfortable saying a PET scan, is a PET scan, is a PET scan. Radiologists at UAMS probably read 20 myeloma PET scans everyday. While a CD copy from another institution may contain enough information, when I try to view mine with a viewer, it appears to be a summary of numerous still shots that somehow or somebody deemed relevant. UAMS does extensive follow-up PET scans during treatment and they continuously compare earlier PET scans to recent PET scans. How they view side by side images I'll never know, but they gain valuable information.
UAMS also has excellent support system and they should be able to address via a phone call whether or not a second PET scan would be covered by your mothers insurance if they deem necessary. My experience with Little Rock is they prefer to do their entire evaluation prior to any chemotherapy is started by your local oncologist.
Just my opinions. Good Luck
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: How to switch testing to a myeloma treatment center?
Hello,
I myself am going through the same thing as you just asked. I was being treated by hospital doctors in Santa Rosa Beach, Florida where I live and I am now moving to Atlanta for more specialized care in multiple myeloma at Emory Winship Cancer Institute. My doctor at Emory told my doctors in Florida what he wanted done until I moved to Atlanta.
You are going to need those tests anyway to get a good diagnosis of multiple myeloma, so go ahead and get them done and then when you move your new doctor will have the results.
Anne
Happy New Year!
I myself am going through the same thing as you just asked. I was being treated by hospital doctors in Santa Rosa Beach, Florida where I live and I am now moving to Atlanta for more specialized care in multiple myeloma at Emory Winship Cancer Institute. My doctor at Emory told my doctors in Florida what he wanted done until I moved to Atlanta.
You are going to need those tests anyway to get a good diagnosis of multiple myeloma, so go ahead and get them done and then when you move your new doctor will have the results.
Anne
Happy New Year!-
aseidel - Name: Anne
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: October 2015 with plasmacytoma
- Age at diagnosis: 58
Re: How to switch testing to a myeloma treatment center?
Thank you Multibilly, MMFeb16,15, blueblood, and aseidel, for your prompt responses – all good advice, particularly with regard to getting medical power of attorney and copies of test results.
There is so much to consider and lots of planning and scheduling involved. I have contacted the primary care doc and am waiting for his call. I really would like to cancel the scheduled biopsies in favor of getting them done with the specialist. First, I do not want my mother to undergo duplicate testing, as I am aware that UAMS will want their own tests. At my mother's age, these tests can be painful and exhausting. Plus, I am not sure her insurance would cover duplicate testing. One concern is that the specialist may not be approved without the biopsy results. I hadn't thought about that until just now. I may need to contact her insurance company to get this resolved.
I will breathe a sigh of relief when and if I hear that her insurance will cover the cost of the specialist. I believe we are on the right track here. Thanks once again for your prompt and kind responses. Happy New Year to all of you, and all the best to you on your journey to good health and remission.
There is so much to consider and lots of planning and scheduling involved. I have contacted the primary care doc and am waiting for his call. I really would like to cancel the scheduled biopsies in favor of getting them done with the specialist. First, I do not want my mother to undergo duplicate testing, as I am aware that UAMS will want their own tests. At my mother's age, these tests can be painful and exhausting. Plus, I am not sure her insurance would cover duplicate testing. One concern is that the specialist may not be approved without the biopsy results. I hadn't thought about that until just now. I may need to contact her insurance company to get this resolved.
I will breathe a sigh of relief when and if I hear that her insurance will cover the cost of the specialist. I believe we are on the right track here. Thanks once again for your prompt and kind responses. Happy New Year to all of you, and all the best to you on your journey to good health and remission.
Re: How to switch testing to a myeloma treatment center?
Imolnar,
I agree everyone has provided some good advice.
For what it's worth, I would also lean towards having any biopsies and further tests performed at UAMS. In addition to the concern of insurance coverage for duplicate tests, UAMS will have pathologists on staff that will likely be better suited to interpret biopsy samples for multiple myeloma related issues (or may determine that no rib biopsy is required).
I agree everyone has provided some good advice.
For what it's worth, I would also lean towards having any biopsies and further tests performed at UAMS. In addition to the concern of insurance coverage for duplicate tests, UAMS will have pathologists on staff that will likely be better suited to interpret biopsy samples for multiple myeloma related issues (or may determine that no rib biopsy is required).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
7 posts
• Page 1 of 1