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Choosing A Multiple Myeloma Specialist

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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.

If you are interested in contributing an article for publication in the opinion section of The Myeloma Beacon, guidelines can be requested by emailing .

Photo by Josie Kemp of the U.S. Air Force on Wikipedia – some rights reserved.
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10 Comments »

  • Myeloma Beacon Staff said:

    Because most multiple myeloma specialists practice at a myeloma treatment center, readers of this article may find it useful to review the Beacon’s list of multiple myeloma treatment centers. The list is sorted by state.

    Also, please note that a number of multiple myeloma specialists assist The Beacon in serving the myeloma community, including the Beacon’s Medical Advisors and the Beacon’s physician columnists. In addition, several leading myeloma treatment centers are Beacon sponsors; their logos appear regularly on pages through this website.

    If you are interested in determining whether a physician regularly conducts research related to multiple myeloma, PubMed, the free database of medical journal articles, is an excellent resource. A simple search on the physician’s last name and the keyword “myeloma” (for example, “Twain myeloma”) will return most myeloma-related publications the physician has authored.
     



    Because this has been a very popular article, there have been several direct and indirect attempts to use this comments section to promote various myeloma treatment centers, myeloma specialists, myeloma-related organi­za­tions, and websites.

    While we encourage comments on the article — and author Paul Jakubowski is very much looking forward to them! — please do not reference specific centers, specialists, organi­za­tions, or websites in your comment. This will ensure that there is no mis­under­stand­ing about the comment’s intentions.

    Comments that do not abide by this request will be edited or removed.

  • Nancy said:

    Paul

    Nice article with some good points. My question to you is: you wrote that you interviewed the two specialists you were considering. How did you do this? I imagine you would have to schedule a first time appointment with these doctors and get the insurance to pay for two, first time appointments. To see our hem/onc at a university hospital where we live in California, one has to submit detailed medical records, go through a new patient coordinator. I’m not sure that there would be any other way to see him, even just for a consultation. I’d be very interested to know how you handled this.

    Another point would be to try and attend the local myeloma support group in any area one is considering relocating to. Asking among the support group members would be an excellent way to find out the good myeloma specialists in the area.

    Nancy

  • Vickie, wife of Frank with mm said:

    Paul, excellent article. My husband and I have been talking more recently about this topic of “myeloma specialists, hematologists” more now than in the beginning. I am surprised I haven’t seen this subject talked about more, because it I believe is a key issue in how best to manage this cancer, with the doctors in place. Your #1 question: “is the doctor a Teller or Asker?”, is one we struggle with. My husband’s oncologist is neither. Very hard to read and getting answers from him is like trying to pry open a clam shell. It has been frustrating at times. Thank you for sharing your experience and the measures you used in going forward with your own medical practitioners.

    May you continue to do well Paul.

    Vickie

  • Paul Jakubowski (author) said:

    @Nancy – Yes, well, “interview” may have been the wrong term to use, in hindsight. Sorry. “Chatted with” is probably a more precise description of the initial contacts with the doctors. All I did was call their respective offices and ask to speak with them.

    As I recall, in one case, I spoke with a nurse, and the other a Physician’s Assistant on the initial contact, explaining politely what I was wanting. Neither tried to discourage me, but rather passed the message to the doctor, and In both cases, the doctor called back. Since I had the referral from my family physician, and did my best not to waste their time, both conversations went well. No need for insurance companies, scheduling departments, tests, etc.

    I strongly believe that WE have to take control of our disease. MM treatment isn’t the same as going to an emergency room to have a broken arm set, where any doctor has the skills for the task and the relationship is going to be short. So I sees no reason why those of us afflicted have to live by an assumed set of rules that are intended to get ‘em in and get ‘em out quick so an assembly line doctor can move on to the next patient quickly.

    Perhaps this approach could be perceived as pushy or not according to the way things are done. All I can say is that it worked for me. I ended up with exactly the partner in care I wanted for the long term. I can’t say that if somewhere along the way a minion in the administration department of a doctor’s office wanted me to follow some arcane rule in order to just talk with a doctor I would have refused, but it would have given me pause about the standard of care I could expect long term, and I expect I probably would have just moved along.

    Good point about the support groups. I’m not a support group kind of guy. I’ve never been to a meeting, so that approach just doesn’t occur to me.

  • Laurie said:

    Paul,

    Great article and advice. Question I have for you is in your opinion what is the “best” place to go for treatment of this disease? Seems as though there are a lot of great places, but is there one single place considered the absolute best?

    Laurie

  • Paul Jakubowski (author) said:

    @Laurie I wish I had ultimate wisdom and could answer definitively that if only one could visit XYZ Clinic, they would get the absolute best care. But I’m not nearly that wise.

    But then again I doubt anyone is. There ARE a lot of great places, and my observation does indeed indicate to me that the most sophisticated cancer centers do indeed attract a cadre of superior doctors. However, not all of us need to completely upset our lives and move across the country to receive treatment. Velcade is Velcade. Revlimid is Revlimid. Decadron is Decadron. Those of us currently afflicted are standing on the shoulders of tens of thousands who have gone before us, and there are now many proven therapies that any well informed oncologist can administer in an effort to control this cruel disease in the early years after diagnosis.

    What I’ve sought to do is to find a Board Certified Hematologist with whom I can create a long term partnership. A doctor who keeps himself well enough informed of current events in the world of multiple myeloma that when my care gets to the point that it is beyond his ability to administer FDA approved therapies, he knows where to refer me for more experimental care that is appropriate to my personal situation.

    To me, rather than hitching my wagon to the star of any certain cancer center, this approach will allow me to pick and choose, at the point in time when I need it, the center which has the clinical trial running that is most likely to be effective in targeting my particular strain of MM.

  • Robert Haile MD said:

    For years, starting at 35, I had neuropathic pain in my perineum; curdled ejaculation. MY PSA 4. I was biopsied with large masses in my prostate, Gleason 8. Surgery revealed local invasion, nerve damage, positive node. My first oncologist gave me an oncologist’s literature review., but made no suggestions but said that he would not have done the PSA. I went to a famous cancer centre in Boston with a famous oncologist. He was thorough, reviewed the literature, and finally said what he would do if it were himself. 13 years later my PSA is undetectable and my health is good. I have called him with erroneously high PSA’s; he called right back. I emailed referrals and he emailed me and the patient right back. He is busy, famous, but is the best doctor I have known, along with my neurosurgeon, both as a patient and a referring MD. He and his hospital deserve their great reputation.

  • Paul Jakubowski (author) said:

    @ Dr Haile: Thank you for your post. Sometimes doctors just plain look at things differently from the way we lay people do, and it shows in candid moments like this. Here’s a couple takeaways I have from your comment:

    First, the rules that apply to getting treatment for the flu, breaking an arm, or having high blood pressure simply don’t apply to the doctor/patient relationship when dealing with cancer specialists. Like you, I’ve found them to be much more approachable, seemingly under less time pressure, and more concerned with treating the patient than merely dispensing treatment that conforms to some insurance company’s procedure code. A patient can have more of an expectation of real follow-up, as you received, rather than just a perfunctory reply from a nurse or PA who is slogging through a stack of the doctor’s paperwork from the day.

    Unfortunately, for those of us stricken with a significant disease late in life, we tend to go with what we’ve known and experienced as we’ve watched the health care system get more and more impersonal. As a result, it seems that a lot of us believe that there is no alternative but to put up with it and resort to online forums to gripe about it. Your comment reinforces that we CAN have better. But oftentimes the first step is to simply ask for it.

    Second, it doesn’t surprise me that you got a respectful, sophisticated follow-up from the doctor in Boston. Doctors talk to other doctors differently than they do to lay people. Doctors assume that other doctors are not wasting their time; that their patient will understand what they are trying to say. We lay patients need to acknowledge that doctors have EARNED that assumption, through their training and incredible commitment. We have not.

    My personal experience has taught me that the more I have invested in educating myself about at least the narrow construct of my strain of MM, the more my doctors have been willing to engage in more informative, sophisticated, and yes, time consuming discussions about my care. Net, we lay patients can get to the level of care you’ve enjoyed, but we have to do our part to earn it as well.

    The good news is, I’ve found it’s not that hard to do so. All we have to learn is our our particular strain of a disease; you doctors have to keep the entire spectrum of your specialty in your heads at all times!

    All the best to you in your continuing battle….

  • Jonah said:

    Great article with a lot of useful advice.

    I know it’s not really the purpose of the article, and it’s also kind of implicit in what you’ve written, but I think it’s worth emphasizing that, sooner rather than later, a myeloma patient really should start seeing a myeloma specialist. This is something you hear almost all the time when you speak to people who have had myeloma for a long time, but it’s not something that a newly diagnosed patient necessarily thinks about. Too often, a newly diagnosed patient just assumes that it’s okay to get treatment advice from a general local oncologist, and doesn’t realize that, especially when it comes to his or her long-term care, it will be important to have treatment directed by a myeloma specialist.

    I realize that sometimes, as in your case, there isn’t time to see a myeloma specialist before starting your first myeloma treatment. Also, the reality is that, for most newly diagnosed patients, choosing the first treatment a myeloma patient receives isn’t really a difficult decision. There are maybe three or four common treatments for newly diagnosed myeloma, and there are guidelines and expert advice out there that most general oncologists can use to help them decide what is best for a newly diagnosed patient.

    The fly in the ointment, though, is that some newly diagnosed patients really have very unique situations that a specialist will know best how to handle. Even more importantly, after a patient’s first treatment, the choice of additional treatments becomes more and more dependent on what a patient has been treated with before, how they reacted to it, and what the state of the art is when it comes to treating myeloma. That’s when it is really critical for a patient to be seeing a myeloma specialist who really knows the patient and the particular traits of the myeloma that patient has.

  • Joan said:

    Great article! I see a local oncologist/hematologist with experience treating MM and I also travel a pretty far distance out of town several times a year to see what we refer to as one of the well-known MM specialist. I’m so grateful my two doctors work well together and consult with one another to give me what I consider to be the best care possible. I love them both! They are caring souls. Sorry, I wish I could share their names just as a means to give them both well deserving accolades, but rules are rules.