Choosing A Multiple Myeloma Specialist
Published: Jun 5, 2014 4:56 pm
For many people who have just been diagnosed with multiple myeloma, a key challenge is selecting a multiple myeloma specialist.
I did not face that challenge — at least not initially. I literally started treatment the day the diagnosis came in.
The evening before my diagnosis, after a routine checkup with my long-time family doctor in Nebraska, I got a call from the doctor’s urologist partner.
“I want you at the hospital within the hour,” the urologist said. “Stop at Walgreens, pick up a prescription I’ve called in for you, and drink it on the way here. I won’t be able to sleep tonight if I don’t see you first.”
Seriously, have you ever had a phone call like that? From a specialist you’ve never even met?
As it turns out, my kidneys were in bad shape. Really bad shape. When I was finally diagnosed with multiple myeloma the next day, a medical oncologist I had never met came back in to work after leaving for the day to administer my first dose of Velcade (bortezomib). He set the dose in consultation over the phone with a transplant doctor in Omaha who was the expert in multiple myeloma.
Revlimid (lenalidomide) would be added later, beginning in the third cycle, as my kidneys steadily improved and could tolerate a full dosage of Velcade and Revlimid.
Overall, I received six cycles of the Revlimid-Velcade-dexamethasone (Decadron) combination. My condition steadily improved from the original M-spike of 8.5 g/dL to 0.4 g/dL, which is considered a very good partial response. At that point, in the winter of 2012/2013, I had an autologous stem cell transplant (see my previous guest column here at The Beacon for some of the details of that experience).
Shortly after my transplant, both the local Nebraska oncologist, who had administered the chemo, and the transplant doctor at the University of Nebraska Medical Center in Omaha, left their positions for jobs with increased responsibility in other cities. At the same time, my family doctor in Nebraska went on a reduced work schedule in preparation for retirement.
So, I was left with a decision about how to replace them all.
Looking back, I now realize that I developed a set of six questions that I eventually used to select my new multiple myeloma specialist.
1. Is the doctor a Teller or an Asker?
I group the doctors in the world into two types, Tellers and Askers.
A Teller is the kind of doctor who is constantly answering pages in the middle of appointments, and who insists I don’t need to take notes because “he will give me a copy of everything anyway.” Never mind that the copies are all gibberish because he hasn’t explained my questions about them, and that they are not in my hand while he is Telling me.
I avoid the Tellers.
I chose my family doctors in both Florida, where my wife and I live during the winter, and in Nebraska because they struck me as Askers. Askers are not just someone who wants to monopolize a conversation with caveats about what they can’t do. I want to be treated like a patient, not a drug salesman. I once had a cardiologist run $30,000 worth of tests on me after I showed up in an emergency room at 2:00 a.m. complaining of chest pains, only to tell me my heart was fine.
When pressed as to what was wrong and causing all the chest pain, all he could offer, in stunningly boring detail, was that it was not my heart. It turned out to be only an easily treated pinched nerve in my back caused by a scoliosis. My Asker family doctor had diagnosed it in about 30 minutes flat with pointed questions about lifestyle and how I carried a heavy computer bag.
2. Is the doctor well established?
Second, since both of my original cancer doctors were young, accomplished, and obviously upwardly mobile, I resolved to choose someone who, while younger than me, was well established in a practice and not likely to move on to greener pastures. It’s pretty easy to tell, from website stock portraits and college and medical school graduation dates, where any doctor stands.
3. Does the doctor have ties to the area?
I wanted someone who is tied, for personal reasons, to the geography where he practices and I live, and not likely to move. For this, I examined medical school training and hometown. During an initial appointment, I steered the conversation to where his wife is from.
4. Is the doctor certified in hematology?
I wanted someone board certified in hematology. My initial oncologist was not. When it came to challenging questions about Revlimid perhaps causing secondary cancers, for example, it was evident that his general area of expertise of medical oncology had not prepared him for the question, and I never got a straight answer from him.
That was not necessarily his fault; hematology just wasn’t his specialty. It was also not the fault of the cancer center in Nebraska; recruiting a hematologist to a rural area is a tough challenge. There is no guarantee that the hematologist will not just use the position as a career stepping stone to the big city.
However, since I was attempting to change the locus of my care to Florida anyway, I wanted someone who, by training and by interest, would be keeping up with the very latest in the world of multiple myeloma and other blood cancers. I resolved to do “better.”
5. Is the doctor covered by your insurance?
Of course, insurance is a big concern. It does not make sense finding as specialist who is not in my insurance company’s network and I therefore cannot afford.
6. How much are you willing to do to get the doctor you want?
I had a serious, heart-to-heart talk with my wife about just how much she would be willing to sacrifice for me to deal with multiple myeloma in a way I was comfortable with.
If I couldn’t find a hematologist in Florida, would she be willing to move to Houston with me so that I could be close to the MD Anderson Cancer Center? (This question brings up two whole other topics for discussion – just how far is one prepared to go to cater to this disease? And what is, from a patient’s point of view, the “best” place to go for treatment?)
How did I apply the six questions listed above in my own case? I started the process of finding new doctors from the bottom up.
First, I had the frank talk with my wife.
Then, I went onto my insurance company’s website, and did a search for all doctors who are in network near where I live in Southwest Florida. I eliminated small practices, which are likely to be bullied by insurance companies, and chose instead to go with a very large practice with real bargaining power; a practice with its own lab so that tests could be turned around in hours or days, not a week or more, as I had previously experienced.
This limited the list to a manageable number of board certified hematologists. I took this list to my local family doctor and asked him who he would choose if he were in my shoes. I told him I wanted an Asker like him, not just a Teller who couldn’t be bothered to keep up with my sometimes audacious questioning. He laughed and said that in that case, two choices were clear-cut to him; it should come down to whomever I was more comfortable with.
I interviewed them both. I felt very comfortable with a doctor who was from Florida, had gone to medical school in Florida, had interned and done his residence at the Moffitt Cancer Center in Tampa, and was married to a woman from the Tampa area.
However, he was still quite young and very upwardly mobile; the kind of doctor who will soon be a chief of staff somewhere, and no longer see patients. I didn’t want to run that risk again.
So, I chose the other option, and am extremely glad I did. My current oncologist is interested in me in a way no other doctor since my savior urologist was at initial diagnosis.
He is younger than me, so is likely to outlive me; but not so young that he is restless. He enjoys patient contact and is not interested in medical administration. He is always current, and well ahead of me, with regard to the latest myeloma research findings. He has a fabulous relationship with the key players at the Moffitt Cancer Center in Tampa. Where questions formulated from my study online had stumped previous doctors, he is ready with an answer, patient with me, and in a majority of cases, has a follow-on topic to recommend I study. He is fully aware of all ongoing clinical trials, and has access to many, should I ever need one, through the auspices of his very large practice. And importantly, he communicates effectively with my “up North” doctors when needed during my summers in Nebraska.
I am very happy with my outstanding, local choice. There is no need for me to even consider a move to Houston (yet?).
This is a guest patient opinion article by Paul Jakubowski. Paul was diagnosed with multiple myeloma in May 2012 at the age of 60. He is currently in very good partial remission and continues to receive maintenance treatment. He and his wife split time between homes in Nebraska and Florida, which demands some unique approaches to ongoing care.
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