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 info@cervivor.org.

My Whole New World in the New Year

On December 30, 2020, my life did a loop-di-loop on the magic carpet of life. I was diagnosed with stage IIB cervical cancer. This diagnosis was quite honestly shocking as I happen to be one of those people who never put off a screening of any kind, even during COVID! What led to the diagnosis?

I had only one sign. I started bleeding, which I attributed to heavy lifting and moving furniture while decorating my house for Christmas. I made an appointment with my gynecologist for the very next day and I had an internal sonogram which showed a mass of some kind. She told me to be on the safe side we would set up an MRI which I went home to schedule during my Christmas vacation.

I scheduled the MRI for very early in the day so that I could also go for a mani/pedi and visit my daughter’s new home. As I sat in the pedi chair waiting to have my nails done, my phone rang. It was the gynecologist, which surprised me, but I figured it was the day before a holiday and she wanted to talk to me before the long weekend.

She definitely surprised me when she asked if I was somewhere private I could talk. I went out to my car in pedicure flip flops in the dead of winter to hear her tell me, “It is cancer.” I did not panic. My oldest daughter had had cervical cancer five years prior to this and it was thankfully caught early and was treated. I listened to my doctor tell me to take notes, and the first thing I grabbed was an envelope from a Christmas card, and I furiously wrote notes of oncologists’ names, words like ‘dysplasia’, ‘6 cm’, radiation, and chemo. I made the split second decision to go to the oncologist my daughter had been treated by and my gynecologist told me to stay put while she called him. She called me back to tell me he would meet me on a Zoom call so I quickly ran home for this meeting. Now this oncologist is pretty well known in the area for gynecological cancers and I knew him already so I felt comfortable until we started the meeting and he stoically uttered the words, “THIS IS VERY DIFFERENT THAN YOUR DAUGHTER!”

Phyllis with her daughters

In a matter of minutes on the second to the last day of the year, I had scheduled all my appointments with oncology, hematology and radiology. My biopsy and D&C were scheduled for a week later until my world again turned upside down.

My oncologist told me I had a rare, aggressive tumor and they wanted to switch my treatment plan to try and shrink the tumor in preparation for surgery. Of course it would be me with the rare tumor that only accounts for 5% of cervical cancer diagnoses. I know, I’m an overachiever!

I was set up to begin a Taxol/Carboplatin protocol and with cold-capping to save my hair. I went through the nine weeks like a trooper and was so happy as I suffered only minimal side effects. I was able to continue teaching (remotely because of COVID) and I stayed positive and ready for my battle. But it was short lived.

The tumor indeed shrunk, but not enough so back to the drawing board of the traditional treatment plan. I went through six rounds of Cisplatin (ironically I did lose my hair but I was advised not to cold cap this time) concurrent with radiation and Brachytherapy. Again, the tumor shrunk, but not enough which leads me to my current status — LIVING WITH CANCER. This in itself is a difficult thing to wrap ones’ head around.

Phyllis sporting a cold cap during chemotherapy treatment

In September, I began a course of Topotecan and Cisplatin. Since this would be administered for three consecutive days every 21 days, I decided to take a leave from work and the doctor highly advised it! I am so glad I am off! The side effects are not fun! I have seven days of intense pain and constipation but I am trying to deal with it by wearing a smile and a big win for me was that my latest CT scan revealed a lot of shrinkage!

My biggest lesson learned: YOU CANNOT PLAN WITH CANCER! Things are not what they seem and plans constantly change. All I know in this journey is that it’s important to go with the flow and STAY HAPPY!

Phyllis Adams is part of our Cervivor community and a proud Jersey girl. She is an active member of our Facebook groups Survivor Slimdown and I’m A Cervivor!. Thank you for sharing your story, Phyllis!