When doctors say the word “cancer,” patients feel fear. Kathy Giusti certainly felt it when she learned that she had multiple myeloma, a form of bone marrow cancer that was likely to take her life within three years. But she overcame her fear…reclaimed a measure of control over her situation…and survived!
Giusti’s initial cancer diagnosis came in the mid-1990s. She soon will have outlived the less-than-three-year-survival estimate by a factor of 10. And during that time, she has seen her children grow up…founded the nonprofit Multiple Myeloma Research Foundation…survived a second cancer diagnosis (this time breast cancer)…and wrote Fatal to Fearless, which provides practical advice about coping with a cancer diagnosis. Bottom Line Personal asked Giusti how she managed her diagnosis…
Step #1: Research your diagnosis…the right way. One of the first things almost everyone does after a cancer diagnosis is look for more information about that cancer…and the first place they look is on the Internet. Problem: A lot of the information online is inaccurate, outdated or not applicable to that patient’s situation. To dramatically improve your odds of finding useful information…
Be as detailed as possible when you enter search terms into a search engine. Enter your type of cancer with as much specificity as possible—“triple negative breast cancer” rather than just “breast cancer,” for example. Once you know the status of your disease, include that in your search terms—“stage 2 melanoma,” for example. Try a search that includes where you are in the cancer treatment process, such as “newly diagnosed” or “waiting for results.” If you can’t find webpages that address a particular concern, add that concern to your search terms—for example, “Adenocarcinoma of the prostate what questions should I ask my doctor.”
Helpful: If you can’t recall all the details about your cancer or don’t know how to spell the terms, log into the “patient portal” available through your health-care provider’s website.
Rely only on the most trustworthy websites. The very best websites for reliable online cancer info include the National Cancer Institute at Cancer.gov…the American Cancer Society at Cancer.org…the American Society of Clinical Oncology at Cancer.net…and Mayo Clinic at MayoClinic.org.
Locate nonprofit foundations that focus on your type of cancer. You likely will come across one or more of these nonprofits by entering the search terms described above—their web addresses end with “.org,” and their names often, though not always, include the word “foundation” or “society.” Examples: BreastCancer.org…The Leukemia and Lymphoma Society (LLS.org)…LUNGevity Foundation (Lungevity.org) …The Prostate Cancer Foundation (PCF.org)…and the Multiple Myeloma Research Foundation (TheMMRF.org), among many others.
If your searches don’t turn up an organization: Search the name of your cancer along with the phrase “advocacy group” or “research foundation.” Read the “About us” tab in these sites to confirm they’re appropriate for your type of cancer. Also phone these organizations—not only do they typically have a tremendous amount of useful and trustworthy information on their websites, many have on-call “patient navigators” who can provide insight and assistance at no charge. These patient navigators might themselves be survivors of the same cancer.
Check the age of articles and webpages. Cancer research is advancing so quickly that anything that hasn’t been updated within the past one to three years may not be accurate.
Step #2: Choose the best doctor for you. Your primary care physician will be able to refer you to an oncologist—but that oncologist isn’t necessarily the right one to take the lead in your treatment. There are so many different types of cancer—and cancer treatment is advancing so rapidly—that no oncologist can be an expert on all cancers.
One great way to find oncologists who are knowledgeable about your type of cancer is to ask nonprofit foundations that focus on your type of cancer for recommendations in your geographic area.
If you want to identify the best oncologists for your cancer, see who presented papers about that type at recent cancer society annual meetings. These presenters are the oncologists doing the actual research. Identifying them may take a bit of online research—enter the name of your cancer into a search engine along with the word “meeting” and the name of one of the leading cancer research societies and associations—American Society of Clinical Oncology (ASCO)…American Association for Cancer Research (AACR)…or, for blood cancers, American Society of Hematology (ASH). Example: Search “ASCO meeting” and “colon cancer.” Then look through the search results for abstracts or other web pages that list oncologists who presented on the relevant cancer at these meetings in recent years. These doctors may not be located near you, but they might be able to recommend an oncologist in your area.
Helpful: When you reach out to oncologists, include among your questions “How many patients have you treated who have my type of cancer?”…and “Who else would you recommend I speak to about this form of cancer?”
Best: See at least two oncologists before beginning treatment. Before making appointments, confirm that the doctors are covered by your insurance or will take your Medicare coverage. Also confirm with your insurer that getting a second opinion will be covered.
Step #3: Testing and treatment. Your doctors will, of course, recommend tests and treatments. But there are a few things that you as a patient should do…
Push for the most precise testing possible. Many of the latest, most effective cancer treatments are “personalized medicine,” a form of health care that requires extremely detailed tests of the patient and/or the cancer. This might include genomic testing, which involves analysis of the patient’s DNA and perhaps genetic sequencing of the cancerous cells…and/or immune profiling, which evaluates the patient’s immune system to forecast how effective specific treatments would be for that patient. Such testing is so new that it might not yet be a component of your doctor’s standard approach…and it often is available only at National Cancer Institute–designated centers and academic medical centers. Ask your doctor if you will get this sort of testing. If the answer is no, ask whether it would be beneficial with your treatment. Before having these advanced tests done, contact your insurer to confirm that they will be covered.
Track key markers. You often can access test results through your health-care provider’s patient portal. Ask your oncologist and/or a nurse in the oncologist’s office which numbers you should monitor most closely in your test results. The results might include a tremendous amount of data but usually only a few stats are especially telling. If the results of a test show that one of these key numbers rose or fell sharply, e-mail the oncologist’s office immediately to note this sharp movement and express your concern. Doing this increases the odds that your doctor will review the test results and respond as promptly as possible.
Look into clinical trials. One way to access the very latest cancer treatments is to sign up for a clinical trial of a so-new-it’s-not-yet-fully proven treatment strategy or drug. There are thousands of trials listed at
ClinicalTrials.gov—sorting through them can be daunting. Ask nonprofit foundations that focus on your type of cancer to help you identify any clinical trials that might be appropriate for you, then discuss these trials with your doctor
What do cancer patients wish they’d done differently during their treatments? Here are the three most common regrets…
They wish they’d invested more time in selecting doctors. Many patients work with the oncologist their primary care doctor refers them to—and only later realize that this oncologist wasn’t the optimal choice.
They wish they’d spoken up about the side effects. It’s sometimes possible to reduce side effects without reducing the odds of successful cancer treatment, perhaps by adjusting dosages or selecting different treatments.
They wish they’d kept closer tabs on their loved ones. A cancer diagnosis isn’t just life-changing for the patient. It is life-changing for his/her spouse and other loved ones as well. Many cancer survivors report that if they had to do it over again, they would have remembered to occasionally ask those loved ones, “How are you holding up with all this?”
