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ocation, location, location. It’s the number one rule in real estate and a common refrain sung by agents and choosy homebuyers alike. But it should also be the mantra for people with cancer. They rightly expect to receive the latest and greatest treatment options, but all too often overlook the importance of where they get it.

The United States offers the best cancer care in the world. But there is no guarantee that all Americans who need superb cancer care actually receive it. That’s because there are significant differences in cancer care between cancer centers. People treated in one place may not live as long as they would have had they sought treatment elsewhere.

Today, about 85 percent of cancer patients in the US are treated in their local communities. This works out for a lot of them. After all, many people have cancers that are relatively common, with treatments that have become so routine, so standardized, their chance of kicking it is pretty good — no matter where they seek care.

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But for those of us faced with a rare or aggressive or hard-to-treat cancer, where we get treatment can become a matter of life and death. If you need surgery, for example, you’ll likely have better success and develop fewer complications at a medical center that treats many other individuals with your same kind of cancer.

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A new study focusing on the medical management of multiple myeloma, the same blood cancer I have, adds to the knowledge base that patients treated by experienced physicians fare better. It compared survival rates among patients with multiple myeloma treated at centers with different numbers of patients with this condition. Compared with centers treating just 10 or fewer patients per year, centers that treated 20, 30, and 40 patients per year had approximately 10 percent, 15 percent, and 20 percent lower overall mortality rates during the study period. This held true even when researchers took into consideration sociodemographic and geographic factors and whether patients had other conditions that could affect their health.

While not particularly surprising, these data are troubling when considered in a larger context of just how rare myeloma is compared to, say, breast cancer or prostate cancer. This year, about 30,000 Americans will learn they have multiple myeloma, a disease for which there is no cure. (That’s less than two percent of the nearly 1.7 million Americans who are expected to be diagnosed with cancer this year.) With 13,000 hematologists and oncologists in practice today, the average one will see only two patients with newly diagnosed multiple myeloma each year and six living with the disease. Some physicians, of course, will see more, while many others will see fewer.

Experience goes a long way. But I’d argue it goes farther today than ever before. When I was diagnosed with multiple myeloma in 1996, there were few treatment options and limited clinical trials. Today, in addition to benefitting from an unprecedented number of new drugs that have become available in the last 10 years, I and many other multiple myeloma patients benefit from potentially lifesaving new treatments that are under study in clinical trials — assuming we live near, or can travel to, a center where the trial is offered.

It is so important that everyone with cancer, even those with seemingly nonthreatening tumors, seek care from a physician who routinely treats their kind of cancer — even if it requires going the extra mile. Don’t be afraid to ask a potential doctor how many patients with this type of cancer he or she is treating.

Another essential question to ask — ideally before starting treatment — is whether the physician or the cancer center can sequence your cancer genome. That provides valuable information, including whether you have genetic mutations and other abnormalities for which new drugs are available.

If the center doesn’t have the technology to do this, ask if it can at the very least bank a sample of tumor tissue. Banking cancer tissue ensures that sequencing can be done at a later date once the technology becomes routine.

The cancer community must also work harder to educate oncologists in every community on current research — from our rapidly evolving knowledge of cancer biology to the latest molecularly targeted therapies and associated biomarker tests — that might affect their clinical practice. With tens of thousands of biomedical journal articles published every year, a physician would need to read 19 new articles each day just to stay in front of the eight ball; this begins to explain the oft-cited statistic that it takes a whopping 17 years for research evidence to become routine clinical practice.

That’s why my organization, the Multiple Myeloma Research Foundation, has made it a priority to disseminate relevant research and offer free, multi-sponsored continuing medical education programming designed by our academic advisors. Other groups, such as the Institute of Medicine, the American Society of Clinical Oncology, and the White House’s Precision Medicine Initiative, are similarly focused on accelerating the diffusion of knowledge and are building new models that bridge the gulf between research and clinical care.

Together, we can ensure that all cancer patients get the very best care — no matter how rare or how complex their cancers are. You and I should have as much a chance of beating our cancers as anyone else.

Kathy Giusti is the founder of the Multiple Myeloma Research Foundation and a member of its board of directors.

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  • Hi Sue,
    Thanks again for your reply,
    Yes I get it directly into the stomach, painless actually , and then the following day have to swallow 22 steroids ,the ones you already mentioned, and a 11 Chemo tablets . , just completed my 4 weeks, and I understand it continues for a further 8 weeks, and then a review is taken, whiter it stem cells etc.
    Great fun. Just have to get on with it u guess and go along with The specialist.

  • This article give GREAT advice. When my wife Barb was diagnosed in June of 2001, the local hematology group in our town gave us 3 radically different prognosis’s ranging from a cheerful, “this is a bump in the road” to “maybe 3 months to live”. This disparity caused me to look elsewhere in the greater Chicago area. We moved Barb to another hospital with a hematologist with much more myeloma experience. Barb started with a Phase 3 trial protocol much gentler than a chemo treatment prescribed by the local onc. Barb’s highly aggressive flavor of Myeloma still won, but we got 4 years together. I’m convinced, based on Barb’s Myeloma lack of response to conventional treatments she would have died in just a few weeks if we had not made the change in doctors.

  • Thanks Ms Susan Witcher
    I thank you for your comments extremely helpful
    I am in the velcade weekly by injection
    And 21 x6mg Decamenthasone weekly as well orally as well as the chemo tablets is that excessive?
    Many thanks for your help Michael.

    • Hi Michael,
      Is the velcade injection by sub-q (poke in the stomach) or intravenous (in the arm)? I get mine by a needle
      In the stomach. Sub-q doesn’t cause as much neuropathy as the intravenous injection in the arm. Do you have a myeloma specialist? Many new drugs are in the pipeline. Stay positive. Smiles, Sue

  • Wouldn’t it be great if the MMRF developed a rating system for doctors showing how many MM patients they have, what patients think of them, and what their success rates are?

  • Thank you so much for caring. MMRF has given me so much insight to my disease. You make my life better and I thank you. I recently decided to go to Cleveland Clinic. Very pleased. Started at Monte Flores in NYC, Stem cell transplant (kicked my butt). Needed 24/7 care. Which my loving family from Erir, PA. Has provided. I am truly blessed! My Doctor here has only 2 MM patients. So off to CC were my Doctor has 80 patients. That’s all he does. I agree with your writings. Thank you again. P.S. I would like to share my data. I will talk to CC.

    • I’m a Cleveland Clinic patient as well (MM discovered 7/14) and couldn’t be more pleased with the team approach and the care I’ve received.

  • My doctor says I have smoldering myeloma he is a blood doctor I don’t know much about this disease and he never wants to answer any of my questions and he confuses me I don’t know where to turn to are what to expect with this disease I read about it because they tell me it’s going to turn into multiple myeloma but I don’t understand half of what I read and I am on Medicaid so there’s not a lot of doctors out there that take my insurance I don’t know what to do are the questions I should be asking please help if you can I go two Cancer Specialists of North Florida I see a blood doctor there I would like to find a new doctor I do not like him as I said before he doesn’t tell me anything

  • Asking doctors how many patients they have seen with your disease is ineffective for several reasons – physicians, in general, do not feel comfortable answering these kind of questions and therefore, with the patient and they may not know or answer accurately. What are the professional standards, certifications that are awarded to the hematologists, cancer centers that would tell patients they have met rigorous criteria in caring for multiple myeloma?

  • Recently been diagnosed in Cork , CUH hospital , Ireland
    With Muliple myloma. Have starred In the valcade, the steroids 22 of them weekly and the chemo tables 11 of them.
    Your thoughts on this current action, are there better alternatives? Just completed 4 weeks at this stage.
    Welcome your comments .

    • Sounds like standard therapy VRD. Velcade, Revlimid(pills) and dexamethasone((steroids). Is the velcade given to you subcue? This is an injection in the stomach. It helps to reduce peripheral neuropathy. Dexamethasone should be no more than 20 mgs a month. Make sure you take a baby aspirin with the revlimid. Hope this helps.

  • I’ve been undergoing treatment for MM for 4 years now. My Oncologist is a hematologist with only 2 other MM patients. I’ve undergone 2 series of chemotherapy and am rapidly approaching a decision on when to have a stem cell transplant using my previously stored stemcells. Recently I visited Dr. Bensinger at Swedish Hospital ( Seattle) who was identified as an “expert” in MM in one of your articles. His recommendation was to do the transplant sooner than later and to start using a ‘maintenance” drug( Remenoid?) My current oncologist says there is no rush and isn’t prescribing any meds between chemo treatments.

    Question: How do I, as the patient, weigh these two seemingly divergent treatment plans to ensure the best chance for a longer survival? (If I want to use Dr. Bensinger in the future I would have to change Medicare Plans).

    Thanks,
    Bill

    • Hi Bill…

      I had my Stem Cell Transplant after 4 round of RVD last month. It is NO piece of cake, but this is the standard of care for the “8-10 year” survival rate.

      After 4 rounds of the RVD you should have your stem cells harvested. (they will harvest enough for 2 transplants) The reason they harvest after 4 is the longer your stem cells get chemo, the more they are damaged.

      I cannot urge you enough to follow the advice of Dr. Bensinger. IF you did not change your Medicare plan, don’t despair…ask for a list of companies that will help you pay for your SCT. There are many, and all you have to do is ask.

      God Bless

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