Trust In Your Care Team

My cancer posse is comprised of some of the best folks—kith and kin from around the country who rallied in April 2022 when I was first diagnosed with synchronous cervical and uterine cancers. Throughout this unchartered journey, my husband, married daughter in Mississippi and son in Massachusetts have each been effective posse leaders, giving me strength for the road, dispensing loving advice (whether solicited or not!) and serving as liaisons for meal trains, care packages and other generous support. They truly have been my first line of defense.

Dr. Mark and Doris

But, when I look back on this odyssey, I must admit that any success along this journey was determined by my relationship with the principal guide on this trip: my gynecologic oncologist. Captain of my medical team, he was instrumental in shepherding me through the cancer maze: treatment plans; laboratory results; side effects; scans. How blessed I am to have this particular medical professional on my posse.

Dr. Jaron Mark was referred to me after the biopsy and diagnoses. I was slightly surprised at our first consultation. The white-coated doctor who walked in and shook my hand did not appear much older than my son. A soft-spoken but confident young Black man, I was rather pleased that my oncologist would look like me, but I needed to be assured that he was ready for THIS middle-aged Black woman (who has occasionally been deemed a crusty old broad) as a patient. I recall one of the comments I made to him that day to let him understand my mind-set: “Doctor, I plan to celebrate my 100th birthday, and you’re going to help me get there!”  

He looked somewhat taken aback, but then recovered well, smiled and nodded. He seemed up for the challenge.

I was also impressed when he shared that he is an alumnus of Meharry Medical College in Nashville, Tennessee. Established in 1876, Meharry was the only medical school to admit Blacks in the South and was the training ground for generations of Black doctors. As a graduate of an historically Black institution in Ohio myself, I always feel a special bond with other such alumni. His esteem was elevated further in my eyes when I discovered he was in practice with his father. Fighting cancer is very much the family business, I suppose.

The true value of our relationship was revealed during those early months of treatment. My oncologist carefully explained every step along the road, using lay terms to describe complicated procedures. He made certain to discuss side effects while also providing realistic possibilities. He never sugar-coated information, yet maintained an optimistic demeanor. And he was proactive. Although my cervical malignancy was Stage 3b1, he informed me that the Stage 1A uterine cancer was far more aggressive and deadly. He advised that I start chemotherapy immediately after brachytherapy, delaying a scheduled family vacation to Boston. When I protested, he very gently but firmly reminded me of the need to stall the progression of the uterine serous cells. He did not arrogantly reprimand me or condescend that he was the expert and I a mere patient; he actually appeared apologetic and concerned that I have all the facts to make an informed decision (the vacation was cancelled). 

Doris and her Radiology team at the START Center 

I ended chemotherapy on January 9, 2023. A scan later that month indicated no evidence of disease. However, by June I began experiencing digestive disturbances, abdominal discomfort and appetite loss. A further scan indicated recurrence of the uterine cancer in the peritoneum. My oncologist booked me for an immediate consultation and we discussed a plan of action that included oral chemotherapy and immunotherapy. But we also discussed a “Plan B” if the desired results were not achieved. I appreciated that he did not advise repeating the treatment plan that did not work the first time. And, if the medicine still fails to eradicate the cancer cells, he does not want to waste precious time; after 3-4 infusions of immunotherapy, he will order a scan to determine effectiveness. If there are no positive results, I will then take the clinical trial route. 

I now understand why so many patients complain about the medical attention (or lack thereof) received from too many doctors and nurses. From the first meeting, I sensed that my young oncologist translated my verbal and nonverbal messages accurately. He was respectful and attentive and I reciprocated the same. Even though I was an entire generation or two ahead of him, he did not patronize or minimize. He answered every question asked, even those posed by my family members. Also importantly, his staff clearly was expected to behave similarly. When a nurse bungled some insurance issues and miscommunicated with me during the first months of treatment, I expressed my displeasure to the doctor and they were no longer employed there at my next appointment.  

When Dr. Mark shook my hand at the end of our consultation last month, he looked me squarely in the eyes, smiled and shared words of encouragement that helped boost my spirits. In that moment, an unspoken bond was reaffirmed: he was not only my doctor, but a trusted fellow combatant in this war against my own cells, a posse member who continues to accompany me up hills and down valleys along the way. I could not ask for better!

A sixth generation Texan from San Antonio, Doris Helene White earned a B.A. from Central State University in Ohio (an historically black institution) and a juris doctorate from Boston University School of Law. Her career in the government sector as a Massachusetts trial attorney reaffirmed her commitment to an equitable legal system. Her husband Steven Soares, daughter Dr. Leigh Soares and son Steven Cooper Soares lead the best “cancer posse” in the galaxy! 

Clinical Trial Awareness Month: Cervical Cancer Needs YOU!

That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.

While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.

You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.

We said it before:

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker

It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.

This process takes a lot of teamwork: scientists work on hypotheses, patients report on progress and challenges, and doctors monitor outcomes. The result: an increase in clarity, more answers, more awareness, more options, and longer lives. Have a discussion on clinical trials with your care team and support system. Learn more with these recommended resources:
https://www.webmd.com/cancer/cervical-cancer/cervical-cancer-clinical-trials
https://www.clinicaltrials.gov/ct2/home

If you have experience with a clinical trial and want to share it with us, contact us at [email protected].