As you move through your diagnosis and the necessary treatments, understand that your body may never be quite the same. It may have affected your immune system, your heart or kidney function, even your cognition and memory. Dealing with cancer and its barrage of tough treatments might make you prone to secondary cancers. These are new cancers that emerge that are different from the original cancer. This could be due to overlapping risk factors (for example, breast and ovarian cancer in particular share multiple risk factors) or the treatment for the first cancer having made you vulnerable for other emerging cancers. Radiation, for instance, to one body part can disrupt other tissues in the same area and raise the risk of developing a new cancer there or nearby. A commonly cited example is radiation therapy to the chest for Hodgkin’s lymphoma or lung cancer that leads to breast cancer years later. Chemotherapy is also known to raise the risk for blood cancers, more so than radiation. These are yet more reasons why, following treatment, you’ll never be the same again. The good news is there’s still life on the other side.
While you are no longer living in doctor’s offices, it is important to know the screenings you should be having, especially based on your new risk profile. I say “new risk profile” because your body is now a different “new” specimen. But even if you haven’t had cancer, it’s important to know what screenings you should be having at every age. Remember, every time you are screened for cancer, be it a blood test, scan, or specific screening related to your specific family history or genetic risk, you’re seizing an opportunity. And if you miss such an opportunity, a disease could go unnoticed until symptoms surface. Often, by that time, it may be too late. Surprisingly, not everyone agrees on the age and frequency of screening efforts like mammograms, PSA tests, or colonoscopies. Which is why it’s important to work with an internist or primary care physician (PCP) who knows your entire medical history (more on that in Step 12), as well as a specialist in your specific area of high risk. You don’t want to miss those opportunities to stop a disease in its tracks early. Although it’s not fun to go through some of these screenings, some of which can be unpleasant or require preparation and time, you don’t want to have to deal with the alternative—illness and/or premature death. The more you know, the more you stand to gain.
When President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address at the start of 2015, the excitement was palpable. The mission was clear: “To enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized care.” His commitment and the promise of funding made the effort more exciting. The goal was to find ways the government could accelerate precision medicine by building a national registry where the data could finally be shared. I was recommended for the steering committee because it was clear the MMRF’s precision medicine approach to drug development was playing a critical role in saving patients’ lives and driving us closer to a cure.
The meetings for PMI brought together the highest caliber of guests to share their insights. It was the who’s who in oncology. While many of the meetings were held at the White House, others were run at centers doing great work in the field—centers that would become important contributors to the program. The timelines were tight, so we were expected to jump on planes and get to the next assignment at the drop of a hat. During one of the meetings held at Vanderbilt University in Nashville, we had moved through the morning sessions and were breaking for lunch when I caught sight of one of my old myeloma friends, Dr. Keith Stewart, across the room. A well-respected heme-onc clinician and researcher in the myeloma space, Stewart had a special interest in using genomics to customize care to a patient’s genetic makeup. It was not surprising that he’d been promoted to direct the Precision Medicine Institute at the Mayo Clinic.
When he saw me, he came over to say hello. I’d long admired and thought the world of this dedicated doctor whose work has been published in hundreds of scientific papers. He was one of the most collaborative doctors I’d worked with in myeloma and a strong reason for our success at the MMRF. He had both an MD and an MBA, allowing him to understand the unique incentives and business models we strived to build at the foundation. He’d made his footprints throughout his training in Glasgow, Kingston, Toronto, and Boston, and had earned international respect in many healthcare leadership roles.
“Let’s catch up on the steps outside while we eat,” Stewart said, his signature Scottish brogue exuding pure gentleness. As we moved outside, he asked how my family was doing. He was one of the most empathetic doctors I knew.
“All is good,” I said. “The kids are doing well with college and sports, and the MMRF keeps me busy.” Then I told him about Karen. “My sister was diagnosed with breast cancer. Stage III.”
“I’m so sorry to hear this. What is she doing for treatment?”
“She had a lumpectomy followed by chemo and radiation and now the aromatase inhibitors.” He nodded along as I spoke. As a clinician and researcher, his mind went exactly where mine should have gone months and months ago.
“What about you?” he asked.
I looked at him inquisitively.
He went on, “You realize that if your identical twin has breast cancer, you should be getting screened yourself. You are officially high risk. You should at least be seeing a breast surgeon in addition to your regular OBGYN, someone who knows exactly what they’re looking for.”
“I honestly hadn’t even thought about it,” I replied, feeling ridiculously naïve and ignorant. How does someone run a research foundation and not think this through? I did tell him that Karen had been tested for the BRCA gene and did not carry it. From that small piece of information, I felt I was safe.
“Remember our grandfather on our mom’s side had myeloma,” I continued. “Our grandmother on our father’s side had breast cancer. I have asked Ken Anderson and Larry Norton if there is interest in learning more here but it’s hard to make connections and it’s not their area of interest.”
He then offered to do full genomic sequencing on both Karen and me, our mother, and Nicole and David. It became a fascinating effort that unveiled new scientific findings about our shared DNA, but also highlighted the psychosocial challenges of learning information that you might not want to know. For Stewart, he was curious about why identical twins developed two different types of cancer. For me, I was intent on gathering as many clues about my family as possible to help predict future outcomes and to be prepared. But for my family members, not everyone was on board. My children opted out of the sequencing for the time being. Young and healthy, they’d take their time before learning about their genetic blueprint.
With Dr. Stewart’s thoughts in my head that afternoon, I went through the list of breast surgeons I had seen with Karen, eventually landing with Dr. Elisa Port at Mt. Sinai in New York, who directs the Dubin Breast Center. I gravitated toward her direct approach and attitude. And I could get to her office without traffic in ninety minutes, which was much faster than the three-hour drive to Boston. After a physical and detailed history, Port gave her perspective.
“Of course, having an identical twin with breast cancer in her fifties is a risk. But your greatest risk is actually the radiation you had to your ribs years ago for your myeloma. Back then we didn’t know how much protection to provide to the surrounding tissue.”
“This is the first I’m hearing this.” Yet another WTF!
“You also have dense breasts, which adds a bit of challenge, too.”
I asked about other risks I had read about online. “And what about my doing IVF, all those hormones? Or the risk of my grandmother having the disease?” I asked.
“The risk of IVF remains unproven,” she explained, “and your grandmother got breast cancer in old age, so we’re really not sure how much risk they add.”
Her summary was clear and consistent, and we decided to start with a mammogram first and then do an MRI in six months. This would be the strategy going forward as I began to incorporate the breast cancer screenings along with my myeloma blood tests. I tried scheduling my mammogram every January and my MRI every July to make it easier. That was also when I did my screenings for melanoma—another issue that was prone to secondary cancers.
When the first round of scans came back clean, I felt some relief, but there soon came a time when the MRI caught something suspicious. Dr. Port’s call came in while I was busy helping Nicole pack for her move to Uganda. Yes, Uganda. After college, she was desperate to take a break from Boston and really get away. She wanted to do something daring. She applied to the Global Healthcare Initiative and earned a fellowship in maternal health. She was excited and petrified at the same time. This was not the time to talk about another cancer.
Once Paul and I got her off to the program, I went in for the needle biopsy. I remember being asked to lie face-down on the MRI table with the hopes that my breasts would fall through for the best view of what was going on. Nothing fell through. I had nothing to fall through. The nurses and doctors struggled to get the biopsy done but it was challenging and painful with the awkward angles; the results were not great. It was then that Port felt I would need to do surgical biopsies for my care. Surgical biopsies are more challenging because you are back in the hospital and under anesthesia. There is also some recovery time, and to be approved, you need an EKG and blood testing from your primary care doctor. Fortunately, for me, I had just switched to a new internist who had started at our local Stamford Hospital. My friend Tiffany had raved about Dr. Deena Ebright and a few of us started seeing her. Nicole and David as well.
As I headed into Dr. Ebright’s office to discuss what was happening with my breast cancer screenings, she shared with me that she carried the BRCA gene and underwent a double mastectomy years prior. She encouraged me to continue taking the screening seriously and agreed the radiation to my ribs was something to consider. She asked to make sure all information from Mt. Sinai came her way. Ebright became my calm in the storm during any and all medical issues. Her demeanor and “no judgment” approach was a gift for any patient. And her office was well run, able to adjust to some of the fire drills of needing things like EKGs quickly.
I breathed a sigh of relief when that first biopsy came back as benign. But I was beginning to see this was not necessarily going to be a simple January/July visit. I basically alternated heading to Boston one month and New York another. And having learned that there can be false positives with the MRI (as many as 97 for every 1,000 cases), I needed to stay calm and quiet until all the tests were complete. I’d tell the kids that I was headed to either city for a “routine test,” which was true. The older Nicole and David got the more I realized lying is unacceptable, but waiting to share information at the right time is critical. It’s best to share when you have a plan in front of you.
The best way to cure cancer is to find it early. The best way to find it early is to get screened. And yet, people consistently miss their annual physicals and their screenings. My myeloma was found in a serendipitous way. Here I was trying to get approval from my internist to visit a fertility doctor or endocrinologist. And my internist had recently diagnosed another young female patient like me. When he saw my elevated protein and anemia, he knew to do more testing. It was incredibly fortunate, especially knowing that myeloma skews male, older, and African American. Today, primary care doctors are much more in tune with myeloma. They are consistently catching it much earlier.
My meeting with Keith Stewart was somewhat serendipitous, too. His advice may have helped save my life. Knowing I was high risk and should be seen by a high-risk breast-cancer team allowed me to get screened properly and ensured the insurance company covered my testing. Those screenings would ultimately detect my breast cancer in the earliest stages where curing it was an option. My primary care doctor did her best to remind me to get the visits done—to be vigilant in all my screenings in fact, from mammography to dermatology to colonoscopy. Whether you are being vigilant about finding a common cancer in your family early or looking for a secondary cancer, never miss a screening. Know every guideline and recommendation and work with your doctors to determine the right screenings for you. Here are WTDs for developing your screening plan.
STEP 11: NEVER MISS A SCREENING
WTDs
Know Your Risk
Know the Basic Tests and Timing
Get the Right Screenings
Getting the right screening starts with knowing what to screen for. Here’s how to better understand what you’re at risk for:
One of the most powerful ways to know your risk factors for diseases is by taking a good old-fashioned history of your family’s health issues. See if you can trace your family tree back at least one generation of relatives to identify important health challenges that could be part of your makeup. Your family has genes in common. This means you might see trends in heart disease or cancer. You also have some behaviors in common and you might have lived in the same area. Has your mother or sister had breast cancer? Did your dad or brother get colon cancer before the age of fifty? This information can help direct your doctors in your care.
When you fill out the medical forms at the doctor’s office, include every serious concern or disease you’ve had historically. You want to share any surgeries you’ve had, including how you reacted to anesthesia. You want to share any drug reactions or allergies you are aware of. It’s important to include past concerns like viruses, stomach issues, and/or things like precancerous or cancer diagnoses. Make sure you answer questions about alcohol, drugs, diet, and sleep honestly. The more honest you are, the more the doctor can help you.
Your medical history combines your personal history and your family history. It may be kept by your primary care doctor or be part of your electronic health record (EHR). If you’re unsure about this, you should review what your doctor has and make sure it’s complete and updated. It should include all your past illnesses, medical procedures, family medical history, and current health status as well as any medications, allergies, and relevant personal lifestyle habits.
The Centers for Disease Control and Prevention (CDC) supports broad screening for breast, cervical, colorectal, and lung cancer as recommended by the US Preventive Services Task Force (USPSTF), a volunteer group of highly qualified physician advisors. Still, you can go to other websites or speak with your doctor and they might have different recommendations. Much depends on your medical history. Knowing what’s right for you given ever-changing recommendations that can get confusing means having the conversation with your doctor in light of your history and personal risk factors. Here is a brief guide to basic screenings everyone should follow:
Mammography is an X-ray of the breast and is the most common form of screening. There are varying recommendations but the USPSTF states “women 50–74 years of age with an average risk of breast cancer, should get a mammogram every 2 years. Women 40–49 years of age should talk with their doctor.” They also recommend taking an MRI for women at higher risk of breast cancer. If you are considered high risk, it’s recommended you alternate mammogram with MRI typically every six months. And if you have what’s called dense breasts, which can make traditional mammography less reliable because potential cancer can be more challenging to spot, you may have to undergo additional screenings such as whole breast ultrasound. A breast ultrasound in addition to mammography can improve detection of cancer. According to Dr. Elisa Port of the Dubin Cancer Center, mammograms can find 85 to 90 percent of cancers. It’s not 100 percent but “no test is perfect”; if you’re a high-risk patient, you need more screenings.
The USPSTF also recommends getting your first Pap test at age 21, followed by a Pap test every three years. They recommend cervical screening for ages 30–65 years using one of the following approaches:
Updated guidelines from the ACS recommend screening starting at age 25 with an HPV test and then having HPV testing every 5 years through age 65. However, testing with an HPV/Pap co-test every 5 years or with a Pap test every 3 years is still acceptable.
The USPSTF notes that adults from ages 45 to 75 should be tested for colorectal cancer. This shift to starting at 45 years is a relatively new one, owing to an increase in colorectal cancer diagnoses among younger individuals for reasons scientists are still studying. The USPSTF also states that the decision to be screened after age 75 should be discussed with your doctor. There are a number of colorectal screening approaches, from traditional colonoscopies to at-home test kits for low-risk people. Colonoscopies remain the gold standard. They involve a flexible, lighted tube that checks for polyps or cancer in the colon and rectum. The recommended frequency varies so be sure to check with your doctor. When any less invasive tests show a positive test, you’ll have to undergo a colonoscopy to confirm potential problems. The benefit to a colonoscopy over these other tests is that if polyps are found, they often can be removed on the spot.
The USPSTF recommends yearly lung cancer screening of low-dose computed tomography (LDCT) for people who are heavy smokers, who smoke now, or have quit in the past fifteen years and are between 50 and 80 years of age.
Many men will get a PSA (prostate specific antigen) test to help screen for prostate cancer. The higher the PSA level in the blood, the more likely the patient has prostate cancer. Still, the PSA can vary based on age, race, an enlarged prostate, medications, and/or infection. It’s important to do the screening and work with your doctor to analyze the results. If concern exists, your doctor will likely recommend a biopsy.
The American Academy of Dermatology recommends that adults undergo a full-body skin examination at least once a year to screen for skin cancer. It’s also important to perform regular self-examinations of your skin at home. This involves checking your skin regularly for any new or changing spots, including moles, birthmarks, or freckles. If you have a history of skin cancer or other risk factors, such as fair skin, a history of sunburns, or a family history of skin cancer, your healthcare provider may recommend more frequent skin cancer screenings.
Yes, life gets busy. But catching cancer early is the easiest way to deal with it. Pick a day, week, or month, that you want to do all your screenings. Keep to this program every time and don’t come up with excuses. The overall survival rates change dramatically from Stage I to Stage II or III. In early disease the cancer is often localized and easier to remove, while in later-stage disease the cancer may have spread to other parts of the body and is more difficult to treat. There is no question: Early screenings save lives. Just do them. Here are some tips to help ensure you never miss a cancer screening:
Talk to your primary care doctor about your personal risk factors and recommended screening schedule for different types of cancer. If you have a higher risk for a specific kind of cancer, you should also ask to consult a specialist.
It’s not always easy to get appointments. Schedule your cancer screenings months in advance, and make sure to mark them on your calendar or set reminders on your phone.
Many healthcare providers and screening centers offer reminder services, such as automated phone calls or text messages, to help you remember when it’s time for your next screening.
Many communities offer free or low-cost cancer screening events, such as mammograms or skin cancer screenings. Check with your local health department or cancer center to see if there are any upcoming events in your area.
Fola May, MD, PhD, MPhil, is a pioneering gastroenterologist who wears many hats as a physician, researcher, and quality improvement (QI) director. Digestive health and cancer prevention are her focus, as well as addressing health disparities. She has served as an expert in several media and policy settings, from mainstream media to the President’s Cancer Panel on colorectal cancer, and the White House Cancer Moonshot. She knows a thing or two about cancer screenings because she happens to perform one of the most intimidating types that cause people to hit the delay button. It’s why I wanted to talk to her and gain some insights.
Q.People avoid or put off cancer screenings. As a gastroenterologist, you encourage people to get a colonoscopy for colorectal cancer screening when they are due for one. How do you motivate people to schedule them?
A.No one wants to talk about it: a procedure through your anus. Talking about anything that has to do with that area of your body is taboo, especially in communities of color like mine. (In fact, Black individuals are more likely to develop and die from colorectal cancer than White individuals, largely due to screening and treatment disparities.) But everyone is at risk for this type of cancer, and the numbers are telling: Colorectal cancer remains the second leading cause of cancer-related deaths in the US. And it’s not just older folks. There’s been a distressing trend of colorectal cancer in a younger demographic—people under fifty. Which is why “forty-five is the new fifty” when it comes to screening now (if you have no family history; if you do, start at forty). People need to know: This is a cancer that is preventable through screening and easily treatable when detected early—up to 90 percent of patients diagnosed early are cured. But you need to participate in that screening and take advantage of the incredible technologies we have today to prevent this disease. Screening helps us do two things—it helps us detect and remove precancerous polyps before they turn into cancer, and it helps us find colon and rectal cancers at an early stage when they are still curable. Many other cancers are likewise very curable today, but only if you’re on your game and getting screened routinely and on time.
Q.Are you a fan of at-home test kits like Cologuard?
A.Absolutely. I like to encourage people to do what’s easy for them. Cologuard is just one of seven approved strategies to get screened for colorectal cancer. These strategies include stool-based and noninvasive tests that you can do at home like the fecal immunochemical test (FIT) and Cologuard, and more invasive procedures like colonoscopy. So there’s no excuse; there’s an option for everyone. If one of the at-home stool-based tests is what it takes to get you in the door for initial screening, do it. If it comes back positive, of course then you must go for the traditional colonoscopy as that is the only way we can say for certain that you do not have precancerous polyps or cancer. Talk to your doctor about the different options, discuss the pros and cons of them, and find what’s best for you. Cancer screenings are critical to detect disease early. We like to say: The best test is the test that gets done!
Q.How are we going to close the gap between those who have access to high-quality healthcare and individuals from under-resourced settings?
A.I’m passionate about my work to address health disparities. Each person should have the opportunity to have the highest level of health, which begins with screening and prevention. But the reality is that many people live in a medical desert—over 84 million Americans live in places where there’s a shortage of primary care professionals. It can be difficult to see a doctor even when you’re insured. Such a reality is why I’m a coleader of Stand Up to Cancer’s Colorectal Cancer Health Equity Dream Team. We are bringing screening tests to the medically underserved communities around the country. There’s a lot of work to be done, and not just in my specialty but across all cancers. With better awareness, access, policies, and advocacy, we can build a healthier tomorrow.
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With our work in the Obama initiative, I was learning about all cancers. I was seeing the consistencies in the challenges and the opportunities. It was clear that our models in myeloma could benefit so many organizations and patients. And with Nicole in Uganda and David in college, there was time to grow a bit. In time, my work would transition, too.
In the fall of 2015, I received a call from the dean of Harvard Business School (HBS). They had been gifted a $20M grant to accelerate precision medicine by building collaborations and business models that could drive the field forward. I would now become a faculty cochair of the Harvard Business School Kraft Precision Medicine Accelerator. This move, however, meant I needed someone new to come in and run the MMRF—someone eminently qualified, someone I really trusted, someone who knew the staff, the board, and the key donors. An individual who knew how to run a growing team and stay true to the mission of accelerating cures. I decided that someone should be Paul and the board agreed. And while I thought that decision made perfect sense at the time, several trusted advisors warned me of the difficulties of spouses working together. Paul understood how important this was to me. He agreed to take the job.
I was excited to collaborate closely with Paul after these years of working apart, but it did come with challenges. It’s hard for founders to let go and we had two very different management styles. In hindsight, perhaps the decision was in the best interest of myeloma patients but not in our best interest personally.
Being officially invested with accelerating cures across cancers and all diseases at HBS, while still driving the same mission in myeloma with Paul, only fueled my relentless drive. Over the years, I was constantly on the road racing back and forth to Boston. On the ride up, I’d be focused on everything we were doing at Harvard—convening high-level meetings with the best-in-class leaders across the entire oncology ecosystem, addressing the need for new models and approaches. It blew me away how much we could get incredibly smart people to share ideas and shave time off efforts in precision medicine. Driving back home, I’d be thinking how to bring some of the innovative ideas like new venture approaches, exciting platform trials, or direct-to-patient efforts back to the MMRF. The work at HBS was new and exciting, and I was fearless in my efforts to now change the system for all cancer patients. But having two “part-time” jobs with a three-hour commute was tougher than I thought. And then the real crisis hit. Paul and I were traveling together when we started getting texts from both Nicole and David. Our schedule was full and we were focused on our last day of meetings.
“You guys better get on your flight back,” read one text. “Everything is shutting down,” read another.