Stand Up To Cancer employee, Frederick Johnson, shares his story, his experience undergoing a routine colonoscopy in the midst of COVID-19, and the importance of recommended screenings for this disease.
Colorectal cancer, which occurs in the colon or rectum, is the second most common cause of cancer death in the US in men and women combined. But it doesn’t have to be. With regular screening, colorectal cancer is one of the most preventable cancers and is beatable in 90% of cases when caught early.
As an employee at Stand Up To Cancer for over a decade, I decided to share my own colonoscopy experience to help encourage others to talk to their doctors about which colorectal cancer screening may be right for them.
In 2008, my dad unfortunately passed away from colorectal cancer. Due to my family history of the disease, my doctor recommended I have my first colonoscopy at the age of 40. Following that screening, I was advised to get another colonoscopy in 10 years. As I approach my 50th birthday, it was important for me to talk with my doctor about screening options, especially with the pandemic delaying so many screenings in 2020.
There are several effective tests available – from a colonoscopy done at a medical facility to non-invasive tests that can be done from the comfort of your own home. For me, a colonoscopy was the right choice. And since this is my second, I know the process and procedure isn’t that bad, and it’s well worth it because it could help save your life.
While researching my options, I learned that colorectal cancer disproportionately impacts the Black community. Black and Hispanic Americans are more likely to have colorectal cancer diagnosed at later stages due in part to differences in access to screening and health care. I also learned that most people with colorectal cancer have no family history of the disease.
With millions of people in the US not getting screened as recommended, and many people delaying routine appointments due to the pandemic, it’s more important than ever to know your screening options and reschedule missed tests. If you are 45 or older, talk to your medical provider about a screening test that is right for you.
If you’d like to learn more about my experience, you can follow my entire journey here.
I’m thankful to work for an organization focused on saving lives. And I’m proud to Stand Up To Cancer and get screened for my father, myself, and the future. Stand Up To Cancer for yourself and your loved ones by learning more about the benefits of colorectal cancer screening at StandUpToCancer.org/ColonCancer.
Frederick Johnson, BCPA
Recently we spoke with Andrew T. Chan, MD, MPH (@AndyChanMD), lead researcher for the COVID Symptom Study App and SU2C Gastric Cancer Interception Research Team Leader, about the importance of the influenza (flu) vaccine and its impact on patients, especially those that are immunocompromised, cancer survivors, and their loved ones.
What are your recommendations for immunocompromised patients in regards to protecting their health during the COVID-19 pandemic, and as we move into flu season?
As we head into flu season, now more than ever, people must be vigilant about taking precautions to minimize their risk of acquiring of both the flu and COVID-19. This begins by practicing what we know works in virus prevention: washing your hands, avoiding large crowds, social distancing, wearing masks in public, staying away from others if you feel sick, and getting the flu vaccine if you are over six months old. These behaviors must continue because it will ultimately help protect you and others, especially those who may be immunocompromised, including patients and their families.
Why is getting the flu vaccine this year important for patients, survivors, and their loved ones?
All people living with cancer, especially immunocompromised patients, survivors, and their caregivers need to get the vaccine as soon as possible to help minimize their risk of getting the flu. It is equally essential for even individuals who are not in close contact with people living with cancer to get the vaccine now to help reduce the spread of flu in our communities.
When is the ideal time for people to get the flu vaccine?
While we don’t yet know when flu season will peak, and where the virus will be most prevalent, it’s best to get the vaccine right now since we don’t know exactly when the flu season will strike.Of course, over time the protection offered by the flu vaccine may wane, so it is worth talking to your doctor about what to do if the season persists longer than expected.
Are cancer patients and survivors more likely to get the flu than others?
Cancer patients and survivors with compromised immune systems are more likely to develop worsening symptoms, less able to effectively fight an infection, and more prone to develop complications after being infected. This is why everyone needs to get the flu vaccine this year and do everything they can to protect themselves and their community.
What are the key differences between COVID-19 and the flu?
This is an area we are studying through the COVID Symptom Study App. We know some symptoms are more specific to COVID-19 than the flu, such as the loss of taste and smell. On the other hand, flu symptoms seem to be more commonly associated with nasal congestion and a stuffy nose. However, there are some shared symptoms which may make it hard to tell them apart.
Understanding the key differences between the two viruses is something we hope to tease out over the next few weeks based on what communities are reporting, and the symptoms they are experiencing, to help distinguish the flu from COVID-19.
What should someone do if they think they might have COVID-19 or the flu?
It is likely that people may have symptoms that could be due to both infections. The good news is that we now have tests for both viruses, and the bottlenecks we faced in testing for COVID-19 earlier in the pandemic have somewhat improved.
If you believe you may have either the flu or COVID-19, we recommend isolating and getting in touch with your doctor about what steps to take regarding testing.
How can tracking COVID-19 using the COVID Symptom Study App help fight the pandemic this winter?
The COVID Symptom Study App captures symptoms of COVID-19 so we can identify hotspots of the virus. In the same way, our app can be utilized to track the flu and predict outbreaks as well. This is why it is so important for people, whether they have cancer or not, and whether they feel well or not, to log how they feel through the COVID Symptom Study App.
How close do you believe we are to having effective treatments for COVID-19 that will help reduce hospitalization and risk for immunocompromised patients?
I’m heartened by the progress currently being made in developing promising treatments for COVID-19 and the speed at which scientists are working to develop tests and therapeutics. Although researchers are working as fast as they can, we are also not taking short cuts, so it will take some patience before these come to fruition. I’m hopeful that more treatments will be available to reduce the risk of hospitalization within the next several months, but it is not easy to predict exactly when they will be ready.
Is there any evidence that mask-wearing, social distancing, and getting the flu vaccine may reduce the spread of the flu this year?
There is clear evidence that wearing a mask and washing your hands is an effective means of prevention for any respiratory virus. There is also evidence that getting the flu vaccine minimizes your risk for flu as well. In 2020, as a result of mask-wearing, social distancing, and the flu vaccine, we have seen remarkably low influenza rates in the Southern Hemisphere during their winter flu season, which occurs during our summer months. This is solid proof that these non-pharmacological interventions can make a difference in making our flu season much more manageable.
Now is the time to stand together, practice prevention, and get the flu vaccine. By doing so, we will minimize the risk of the flu for ourselves, our loved ones, our communities.
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Drs. Edith Perez, MD and Lori Pierce, MD discuss the importance of health equity, and the work SU2C and ASCO are doing to increase diversity in cancer research and treatment.
“Everyone has the right to be healthy and is entitled to high-quality care,” Dr. Lori Pierce, President of the American Society of Clinical Oncology (ASCO), exclaims during SU2C’s most recent Facebook Live event discussing the importance of health equity. “Health equity is a simple concept, but it’s become complicated, and there are barriers that need to be addressed and eliminated.”
During the Facebook Live event, SU2C Health Equity Committee Chair, Dr. Edith Perez, and Dr. Pierce engage in an in-depth discussion on the importance of health equity, and SU2C and ASCO’s commitment to improving access to care and long-term survival rates for underrepresented populations.
Dr. Perez says that now more than ever, we must put words into action when it comes to health equity in both cancer research and treatment. For decades, patients of color have been at an increased risk for certain cancers and carry the highest mortality rates and shortest survival rates for most cancers. Yet, only 4% of clinical trial participants are Black, and 5% are Hispanic according to FDA data.
One way SU2C is committed to improving cancer treatment for underrepresented populations is by bringing together the brightest scientific minds from diverse fields through the new SU2C Health Equity Breakthrough Team. This team will be selected and receive funding in early 2021, and will focus on new approaches to address health disparities in cancer care and prevention, and help increase diversity in clinical trial participation. Additionally, SU2C continues to collaborate with organizations like ASCO, Black Women’s Health Imperative, and Friends of Cancer Research to build awareness about the importance of health equity and diverse clinical trial participation.
As SU2C and ASCO remain committed to prioritizing diversity and inclusion across research and awareness initiatives, we hope to continue these critical conversations to inspire action and ensure that all patients facing cancer benefit equally in both research and treatment.
Watch the Facebook Live discussion addressing health equity in cancer research here.
As a 4th grader, one of Elizabeth Jaffee’s favorite books was the biography of Marie Curie, the legendary Nobel prize winning physicist, chemist and pioneer in the study of radiation. Though it may have been an unusual choice for such a youngster, Jaffee’s childhood fascination with Curie (“she’s probably the mother of radiation oncology”) was a sign of things to come.
“I just loved science,” says Jaffee, “and it got me thinking about how science and medicine have such huge implications in life. I also had an uncle who died of lung cancer, so I became fascinated by cancer. I thought ‘why do people die of cancer, what is this?’”
Those early questions ultimately led Jaffee to get a medical degree from New York Medical College, and a medical residency at Presbyterian-University Hospital in Pittsburgh, PA. Today, Jaffee is one of the top immunologists in the country. She’s the Deputy Director of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, in addition to being on the scientific advisory council for the Cancer Research Institute, chief medical advisor for the Lustgarten Foundation, and a SU2C Dream Team Leader as well as a member of the SU2C Health Equity Committee
“My whole life, I just wanted to be a doctor,” she says.
Elizabeth’s fascination with immunology was triggered early in her college days in the late 1970s, when virology had first become a hot topic in medical circles. “It was just a fascinating time in biomedical progress,” she remembers, “and it made me realize the immune system is so powerful, and now we’ve got a better understanding of it through understanding virology.”
She adds: “In those days, I first started making the connection that if the immune system can fight infection, why can’t it help fight cancer? That’s when I started getting interested, I was fascinated by the whole field.”
That fascination fuels her through long days in the cancer research buildings at Johns Hopkins, overseeing clinical trials, consulting with patients, and relishing her role as Team Leader for the SU2C-Lustgarten Foundation Pancreatic Cancer Dream Team.
“Working with the Dream Team has been unbelievably wonderful in so many ways,” says Jaffee. “I’ve developed multiple collaborations with some of the smartest people around the country. It’s been a wonderful experience personally, scientifically, and career-wise, and I really thank Stand Up for the whole concept they brought forward. There’s no other mechanism that has the ability to provide this kind of funding to support top-level multi-investigative, multi-level research.”
The current progress being made in cancer research has Jaffee excited and optimistic about the future. “Researchers are on the verge of converting cancers that in the past have not responded to treatment, such as pancreatic or brain cancers, from deadly cancers into chronic diseases,” she says.
“Giving people back their quality of life and longevity of life. That’s huge.”
To nurture her own quality of life, Elizabeth unwinds and rejuvenates by hiking, reading (non-fiction and fiction, especially detective stories) and spending time with her blue-eyes cockapoo, Frank Sinatra (“He’s my buddy.”). She stays in shape with another passion, indoor cycling. “I try to get on my Pelaton every day, it keeps my brain going, you get to think as you’re cycling.”
When Elizabeth White’s mother passed away from ovarian cancer in 2006, it changed the entire course of her young life. Though just a junior in college at the time, Elizabeth dedicated herself to cancer advocacy, and worked for various ovarian cancer associations over the forthcoming years. But in 2017, cancer rocked her life yet again.
White had just become the new executive director of the Michigan Ovarian Cancer Alliance, and she was tasked with promoting the then-new MAGENTA (Making GENetic Testing Accessible) study — a clinical trial conducted by the Ovarian Cancer Dream Team co-funded by the Ovarian Cancer Research Alliance and National Ovarian Cancer Coalition.
When she learned about the ease of this ground-breaking research, Elizabeth knew the time had some to do something that had been in the back of her mind for years: Get genetic testing for cancer risk mutations.
“If it weren’t for the ease of this testing, I probably still wouldn’t have done it,” she says. “I knew the stats, I knew my mom died from it and I still didn’t make the time for me. But this made it so easy, why wouldn’t you get tested?”
After filling out the online questionnaire, Elizabeth talked to a genetic counselor, was mailed the saliva kit provided by Color Genomics, and returned the test by standard mail. No in-person counseling or on-site testing appointments required.
But despite her mother’s cancer history, Elizabeth was still shocked when he got the results: She had the BRCA 2 genetic mutation, and with it a 75 percent chance of developing breast cancer and a 20 percent chance of developing ovarian cancer. With taking care of her husband and young daughter in mind, Elizabeth knew what she had to do next.
She ultimately opted to have a double mastectomy, and she’ll have her fallopian tubes and ovaries removed in the near future. Through it all, she’s learned the power and purpose of self-care and the immense value of being proactive with her health.
“I’m just so much more appreciative and grateful, this study has changed my life,” she says. “It also makes me so appreciative of science, knowing I could do this, and it makes you look at different aspects of your life. If I’m not taking care of myself, maybe I won’t be there for my daughter, for those important life milestones. It makes you slow down.”
Today, Elizabeth has taken her own advice and continues to prioritize her self-care. She has stepped away from full-time work in cancer advocacy and is enjoying her new career as a meeting planner, though she makes time every week to do consulting work with the Ovarian Cancer Research Alliance.
“It was tough decision for me,” she says, “working in the cancer world was my way to help my mom, but self-care has made me more appreciative of my health and my knowledge.”
“If you don’t take care of yourself, you can’t help anyone else.”
Stand Up To Cancer (SU2C) is deeply saddened by the recent events in this country and we stand in solidarity with the countless Americans who are bravely and peacefully standing up to longstanding and pervasive racial inequality. A nation founded on the concept of shared values can and must do better.
Inequality is felt across the broadest spectrum of the human experience, including in the realm of health and healthcare. In recent months we have seen how COVID-19 disproportionately impacts communities of color, and black Americans in particular. What many may not realize is that this same inequality also exists in the way patients of color are at increased risk for certain cancers and how limited their access often is to prevention, diagnosis, treatment, and care.
Last year, Stand Up To Cancer launched our Health Equity Initiative that has set a precedent for increasing diverse participation in cancer clinical trials. This effort addresses the underrepresentation of people of color in the development and testing process for new cancer treatments. Diversity in clinical trials is important to ensure that all cancer patients benefit from these research efforts.
Stand Up To Cancer is rooted in the belief that we are all stronger when we stand together. Through collaboration, our scientific community continues to make incredible progress that is saving more lives. At SU2C, we are committed – through our Health Equity Initiative – to addressing the racial inequality that many cancer patients face. We will continue to prioritize diversity and inclusion across our research and awareness programs as part of our effort to make good on that commitment, so that one day, everyone has the same prospect of becoming a long-term survivor.
“Now is the time everyone should be willing to accept help if it means keeping yourself safe.” – Ghecemy Lopez, two-time cancer survivor.
1. How has facing cancer helped you deal with everything happening in the world right now?
Facing cancer inspired me to become a cancer research advocate focused on closing the health gap for patients in underrepresented communities. As a survivor, I’m used to the unknown and adapting to a new normal. I’m using that experience to help my patients and community adapt and stay safe as well.
2. What is your advice to anyone impacted by cancer right now?
I have a lot of patients still in treatment or high risk for COVID-19 right now so I’ve been checking in on them and offering to help where I can. My advice is to focus on milestones instead of days, find reliable health guidelines, and don’t be afraid to ask for help if you need it. Now is the time when everyone should be willing to accept help if your health could be at risk.
3. What are some of the barriers your patients are facing right now?
Currently, there are a lot of disparities in the information on COVID-19 that is being presented in Spanish vs. English. Many people in my community aren’t getting a full picture of what’s going on. I’m also helping navigate support services that may be available to those out of work or at home.
4. Why is diversity in clinical trials so important for COVID-19 and cancer research?
The standard of care for any virus or disease comes from clinical trials. We’re seeing this firsthand with COVID-19 as researchers are hard at work finding a way to combat this through clinical trials. The more diverse the patient population is during these trials, the better researchers will understand how a larger population will respond to treatment once it’s approved and on the market. The same is true for cancer clinical trials. It’s how we will continue to improve patient outcomes and ultimately save lives.
5. Who do you Stand Up for?
There are many people that aren’t able to stay home right now, and some of these people are cancer survivors who are risking their health for all of us. The doctors, nurses, pharmacists, grocery store clerks, delivery services and so many others are standing up so that we can get through this. It is my hope that together, we can change the status quo and equally Stand Up for one another in the future.
“Knowing that Dom has already faced colon cancer makes me wary of how being exposed to COVID-19 could impact his health.” – Catherine Mazzullo, wife and caregiver
1. What are you doing to stay safe right now?
We’re doing great and staying safe at home. My husband Dominic is a stage four colon cancer survivor, and this situation is nothing like we’ve ever seen before. We’ve tried to move any medical appointments we can to telehealth and I’ve been doing the grocery shopping. We’ll remain cautious until we know it’s safe to go out in public again.
2. What is the hardest part about being a caregiver to someone who may be immunocompromised?
Dominic and I have been married for almost 40 years. He’s my everything, so I feel extremely responsible for his care. Sometimes that means making sure we do what’s best for his health even when it’s not easy to get through. I always tell him, “What happens to you, happens to me,” and I know he feels the same. We’re in this together.
3. What advice would you have for a loved one caring for someone who is newly diagnosed?
Find your inner strength to do what’s right by your loved one and do it kindly. As a caregiver, you have the tendency to want to put your needs aside, but you have to take care of yourself too and lean on others for support when you need it.
4. What gives you hope?
I look at what these genius researchers have done for cancer patients up to this point and I’m in awe. I will always be wary of Dom’s cancer returning, but I feel comforted knowing there is research that continues making advances, improving patient outcomes, and saving lives.
“I’m taking things I learned facing cancer to help support others who are struggling right now.” – Katherine Stuart, currently in treatment for HER2-positive breast cancer.
1. Has COVID-19 impacted your treatment plan?
Thankfully my immune system is in really good shape as I continue to go in for treatment. My infusion center is small, and they are working on implementing all the precautionary guidelines to keep us all as safe as possible. I’ve also moved my appointments with my oncologist to teleconference for now.
2. How has facing cancer helped you deal with everything happening in the world right now?
It’s definitely made me more resilient. For me, it really comes down to focusing on what I can control and staying informed about what’s going on from reliable sources. I have rituals in place to give me a sense of routine, and I try to find a little bit of joy in every day.
3. How are you staying connected to others while staying home?
I’ve been cooking a lot and dropping off food for others in need. I’ve also had some wonderful phone conversations with friends I haven’t spoken to in years, along with daily phone check-ins with my close friends. I’ve also been able to take what I’ve learned facing cancer and help people in my circle deal with their own fear and anxiety as we all struggle with what’s going on right now.
4. What gives you hope?
It’s scary to think that my health could be impacted by the actions of a stranger, so I’m encouraged when I see people following guidelines and social distancing. I’m also filled with hope and gratitude for the healthcare workers. They are going to war for all of us right now and their courage is unbelievable.
“The challenge for me as a cancer patient, is that my husband is a frontline healthcare worker.” – Michelle Mallin, currently in treatment for a rare metastatic sarcoma.
1. What are you doing to protect yourself right now?
I’ve been on lockdown, closely following the guidelines for people at high-risk for COVID-19; which include only going out for necessary doctor’s appointments and limiting public interaction.
2. What’s the hardest part of being married to someone on the front lines of COVID-19?
The stress of having to be hypervigilant about taking precautionary measures because I’m immunocompromised. I miss things about my husband people often take for granted, we haven’t shared a hug or kiss in over a month.
3. What is your advice to others facing cancer right now?
Focus on your immediate health needs, find support where you can, and follow recommendations for keeping yourself and your loved ones safe and healthy.
4. Why is it important for everyone to follow social distancing guidelines right now?
Surreal is the only word I can come up with to describe what’s going on right now, but social distancing can ultimately help save lives.