Janice Johnson: get informed and advocate for yourself

When Janice Johnson started experiencing sudden GI symptoms at the age of 48, a cancer diagnosis was the last thing she expected. In fact, it was difficult for her to even get a colonoscopy in the first place, being that the recommended screening age was 50 at the time (2016). 

Since then, it’s been a whirlwind of procedures, treatments, and lessons learned. Now that Janice has made it from stage IV colon cancer with metastasis to her liver to no evidence of disease (NED), she’s ready to speak up about the things she’s learned along the way. 

Janice, a wife and mother of two, wasn’t ready to accept the bleak answers she was being given. What she found speaks to the importance of getting informed and staying persistent. 

Now armed with insight about biomarkers, knowing when to get a second opinion, and with a commitment to making informed medical decisions, Janice knows her self advocacy may very well have saved her life. She hopes that by sharing her story, it can help do the same for others. 

Janice’s Diagnosis 

What started as a trip to the hospital for what Janice believed to be food poisoning turned into a colonoscopy screening days later. While her primary care doctor was hesitant to order the colonoscopy, Janice is likely still alive today because she was able to get this test. 

“I remember the gastroenterologist telling me she suspected it was cancer,” Janice said. “I wasn’t ready for that. From there, things went very fast. I was diagnosed November 22, 2016 and scheduled for surgery on December 6, 2016. I wasn’t given a ton of options, and was really scared at the time. The doctors told me I needed to move quickly to avoid a blockage, so I wasn’t given time to process the decision. Instead, I defaulted to the doctor’s recommendation.” 

Having more time to think about things since then, Janice reflects on some important lessons she’s learned from this experience. 

“Every patient needs an opportunity to process the situation and make informed medical decisions,” Janice said. “Looking back, I wish the doctors would have helped to facilitate that more. I was so emotional that I wasn’t able to think straight. I wish I would have advocated for a colon resection specialist, which I wasn’t given.” 

Receiving a cancer diagnosis is understandably difficult for anyone. Still, Janice reiterates the need for patients to pause and reflect before making one of the most important decisions of their lives. 

“For me, it was the doctor making it seem like I was going to die that was driving a lot of my decisions,” Janice said. “Unless immediate surgery is required, I would recommend others take a couple of days to a week to process their diagnosis. Then, make a follow-up appointment to ask questions and determine all of the options.” 

Janice’s Treatment Part One

As Janice continued treatment, she started researching and questioning her doctor’s recommendations more. This became particularly important when she was re-diagnosed from stage III colon cancer to stage IV with metastasis to her liver. Janice was told she would need to be on chemo for life. Even still, her odds for living weren’t very good. Unfortunately, Janice’s inquiries were not always met with open arms. 

“Chemo was really hard on my body, so I decided to look into getting a second opinion,” Janice said. “That was when things started changing with my oncologist. He was very resistant to me speaking with anyone else about my case.” 

Because of an Alliance-funded scholarship, Janice was able to attend the American Association of Cancer Research (AACR) annual conference. It was here where she met contacts that would forever change her life. 

“I started developing a relationship with a scientist who I was referred to from the conference,” Janice said. “She became a critical part of my journey. I tried to connect her with my oncologist, but he refused to speak with her. After that, he wouldn’t even take ten minutes in the room with me. It got to the point where every time I had to go to the doctor I was nervous and crying. I felt scared and I didn’t know what that was going to mean for the quality of treatment and care I received. I tried to give the doctor the benefit of the doubt and ended up staying longer than I should have.” 

When Janice’s doctor recommended a new treatment drug, Janice decided to run it by the scientist. She told Janice that the drug was an inhibitor and wouldn’t do much in regards to treating her cancer. At that point, Janice decided to get a third opinion.

“When this new doctor validated everything the scientist told me, I knew I had to speak to my oncologist about it. When I shared this information, my doctor stormed out of the room and accused me of ruining my own treatment process. I left, with tears in my eyes, knowing that the relationship was broken. I decided to transfer care to an NCI-designated cancer center, but was left without treatment for eight weeks as a result. It was an incredibly difficult and scary part of my journey.”

Learning About Biomarker Testing From a $10,000 Bill

Early on in Janice’s treatment, she received some biomarker testing she was never informed about. A year later, she received a co-pay bill for a $10,000 charge. 

“When I received this bill in the mail, I figured it must have been a mistake,” Janice said. “I combed over all of my paperwork and noted I was not at the treatment center where the testing took place. I was on and off the phone with the insurance company and hospital for months trying to sort everything out.”

Ultimately, Janice found out her blood was sent to a lab at a testing facility without her knowledge or consent. Still, she was stuck with the bill. 

“I was so annoyed,” Janice said. “This was information my oncologist could have used to better assist me with treatment. I didn’t even understand what the testing was about. When I requested the results, it was difficult to decipher without a medical background. It wasn’t until I attended the AACR conference that I started learning more about biomarkers and why it’s important.”

Working with the scientist she met through a mutual connection from the conference, Janice found out she had the KRAS-G12D and TP53-G245D genetic markers. 

“I was able to learn about clinical trials that were available to me as a result of my biomarkers,” Janice said. “Even though I didn’t end up doing any clinical trials and it hasn’t changed my personal treatment plan, we’re now in a better position in case something comes up in the future. Additionally, having my biomarker information is priceless when it comes to better navigating my childrens’ healthcare.”

While Janice wishes she could have learned about biomarker testing in a different way, she’s so happy it came on her radar. Janice reflects on the importance of biomarker testing. 

“I’d like to see more information made available on genetic testing,” Janice said. “I think one of the reasons doctors don’t always talk to patients about the details is they don’t think they’ll understand it. So many people don’t know this is an option as a result. In my opinion, I think biomarker testing should be pushed just as hard as screening because it’s just as important when it comes to possibly saving your life.” 

To find out more about biomarkers and how it pertains to colorectal cancer patients, visit the Alliance’s web page on biomarkers. 

Janice’s Treatment Part Two, Plus Reflecting on the Role of Racism

Thankfully, after Janice’s difficult experience with her previous oncologist, she was able to move on to a new doctor with a much different experience. The results of her new treatment plan left her with clear scans. 

“After eight weeks without any treatment, I was a mental basket case,” Janice said. “I was so scared of how this would affect my ability to live but I didn’t have any other options. When I met with my new doctor, it was a complete change. He validated my concerns and was very professional. He reassured me there were options and welcomed me talking to other medical professionals and scientists regarding my treatment.”

Janice started a new treatment regime and underwent five sessions of radiation. Since then, she has been feeling great and has a whole new outlook on life.

“I now go in to do regular lifestyle treatments, focusing on diet, exercise, and recommended reading for wellness. Now that my full person has been embraced, I feel that it’s put me in the best position to live a long and healthy life.”

Janice, a black woman, reflects on other factors that may have contributed to her previous challenges with healthcare. 

“In order for me to get a black female oncologist, I needed to go to a different institution that cost double the price of me going to see a white male doctor,” Janice said. “There’s a level of people being grossly taken advantage of with institutional indiscretions taking place. In a perfect world, we would have more black doctors and oncologists. There also needs to be more diversity training. If you’re going to treat patients, treat patients. Don’t base your treatment off socioeconomic status or color of skin. I feel like my previous oncologist wrote me off. I have lived longer than he or the statistics have said I would. I have no idea whether or not any of that was because of racism.”

African Americans have the second-highest incidence rate of colorectal cancer with 35% higher death rates. 

Janice’s Message & Mission

Janice has been through a lot. At the time of her diagnosis in 2016 her youngest child was just ten years old. Now, she has a 17-year-old son in high school and a 28-year-old daughter. More than anything, Janice is grateful to have been given this extra time with her children and spouse of 33 years. She hopes that by spreading her message, she can help others spend more time with the ones they love. 

“I volunteer and help fundraise with the Alliance’s Never Too Young Program because I know how important this mission is,” Janice said. “People need to understand that early screening and biomarker testing saves lives. I’m determined to get that message out.”

Janice also has some words of advice for patients and doctors when facing a colorectal cancer diagnosis.

“Patients shouldn’t be afraid to ask questions and get a second or third opinion. It's their life they’re talking about,” Janice said. “Doctors should be open to working as a team with other professionals, and patients need to do whatever it takes to advocate for themselves. As a patient, it’s also important to do your own research and not just take what you’re told at face value. Learning to live a healthy lifestyle with proper diet and nutrition is also such an important piece to the puzzle. Still, it’s not always something doctors talk about.” 

While Janice has faced a difficult whirlwind of experiences since first being diagnosed, she’s learned so much along the way she now offers up freely to others. Through Janice’s story, we are reminded there is great strength in knowledge and unwavering persistence. Thankfully, in Janice’s case, these incredible acts have resulted in her getting her life back.