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Kathy Giusti is a multiple myeloma patient, founder of the Multiple Myeloma Research Foundation (www.themmrf.org). Kathy suggests you consult with your doctors on all of these topics.
Despite the fact that one in every two men and one in every three women will be diagnosed with cancer in their lifetime, no one ever expects it to happen to them. I surely didn’t.
I was an otherwise healthy 37-year-old when I was diagnosed in 1996 with multiple myeloma, the same rare cancer Tom Brokaw has. Back then, the prognosis was grim: I was given three years to live.
The news was shattering. Like everyone, I had many moments of despair where I was certain my battle was over even before it had begun. But the thought of my beautiful little girl, just a year-old, gave me the determination to live.
Luckily, with the support of my family and friends, I was able to make several smart choices, like learning as much as I could about my cancer and getting second and third opinions, that empowered me as a patient. I didn’t know it at the time, but these choices gave me the best chance of beating the lethal enemy.
Becoming an empowered patient is just as important—if not more so—for the estimated 1.7 million people who will be diagnosed with cancer this year. Our healthcare environment is incredibly complex and is changing rapidly. At the center of this new world is the patient, who increasingly plays an active role in his or her care and who ensures that they or their loved one benefit from today’s research innovations or bold breakthroughs that have not yet been achieved.
Many people don’t know the choices to make to empower themselves as patients. Here are a few things I have learned that I think you need to know:
Start by learning as much as you can about your cancer.
This not only brings a much-needed sense of control, but can help you begin your cancer journey on the right foot. Finding the most up-to-date information is key. Search for a reputable foundation that focuses specifically on your cancer—for example, the Multiple Myeloma Research Foundation, www.themmrf.org, is dedicated solely to multiple myeloma—or visit www.cancer.net, a great resource for all cancers from the American Society of Clinical Oncology.
Get a second or third opinion.
Being treated by a doctor who specializes in your kind of cancer is so important, especially for those of us who have rare or very rare cancers. They will have access to newer treatment options that may be offered only at big academic cancer centers so you don’t miss out on treatments that could help you. But how do you know who’s who? Again, contact a foundation that focuses on your cancer; they will likely already have a network of doctors who they can recommend.
Bank your tissue. This is perhaps the most important thing you can do.
While blood tests or body scans may have provided very strong hints to your cancer, your doctor will likely also need to collect a small piece of your tissue, called a bone marrow aspirate, to confirm your diagnosis. This is a pivotal moment because it is your one and only chance to have your doctor collect an extra sample of tissue before you have treatment. This tissue can be stored in a tissue bank and used throughout your cancer journey as a reference point; comparing your original tissue sample with those taken, for example, if you relapse, can help your doctor learn what treatment may work best for you in the future.
And finally, sequence your genome.
Banking your tissue will also allow you to have your cancer genome sequenced. Although not yet routine, many cancer centers have the technology to sequence some or all of a patient’s cancer genome. This can provide massive amounts of valuable information about your cancer, including whether you have genetic mutations and other abnormalities for which new drugs are available. Even if it is not possible to have your genome sequenced today, having your tissue banked ensures that your genome can be sequenced at a later date.
These are choices that all cancer patients can—and should—make to give them the best chance of beating their cancer. We’ve made it a priority at the MMRF to better understand where, why, and how patients are getting stuck in their choices and, more importantly, what we and the cancer community as a whole can do about it.