Giving Voice to our Young Adult Cervical Cancer Community

During National Adolescent and Young Adult (AYA) Cancer Awareness Week (April 6-10), we want to shine a spotlight on the many young adults who have played such a key part in shaping and supporting our Cervivor community.

AYA Cancer Awareness Week focuses on 15 – 39 year olds who are affected by cancer. As cervical cancer is most frequently diagnosed in women between the ages of 35 and 44, there are many Cervivors in this “young adult” cohort of women, who face unique challenges facing a cancer diagnosis at a time in their lives. 

Let’s give voice to young adults and the isolation they face:

When treatment experience in and out of the hospital can be particularly isolating for young adults. The average age in a (non-pediatric) hospital is 60, and the average age of a cancer diagnosis (across all cancers) is 66. Young adults fighting cancer, and young women fighting cervical cancer,  can find themselves alone with no one their own age to connect with. Then, many have to self-isolate at home as part of treatment due to a weakened immune system. Generally, the top psychosocial issue for young adults battling cancer is social isolation.

For Tamika Felder, the founder of Cervivor, that profound feeling of isolation ultimately led to action:  “I was 25 when I was diagnosed with cervical cancer. I wasn’t married. I had no kids. I was excited to finally be finished with college and living independently and kickstarting my career. I was focused on setting my long-term life goals, and on everything I wanted to achieve. Then, suddenly out of nowhere, I had cancer. My future looked totally different, especially with the loss of my fertility. It felt like a complete loss of myself,” said Tamika.  “I felt totally isolated and alone. I felt at that time that it was an embarrassing and ‘stigmatized’ cancer to talk about.” Feeling totally alone, Tamika started reaching out and building a network of cervical cancer survivors. From that, Cervivor was born.

“I felt very alone during the first year after treatment because I didn’t know any other young adult cancer survivors or cervical cancer survivors,” said Emily Hoffman, who was diagnosed at age 30, shared in her Cervivor story. She speaks about her loneliness and isolation, and the empowerment and support of finding women her own age who had been through what she went through, in her video “Hey Girl.”

Let’s give voice to catastrophe of losing your fertility as a young adult:

“I mourn the ‘normal life’ that cancer ripped away from me,” wrote Sarah Thibodeaux in her blog on Cervivor, Young Adult Cancer Survivorship. Sarah was only 29 years old when she was diagnosed with stage 3 cervical cancer and lost her fertility as a result of her treatments, “Now I am now at an age where a question that I tend to get from people is whether or not I have any children. When I tell them that I don’t, they usually follow up with the question ‘Well, why not?’  It’s in that moment I always have to decide just how in-depth I want to go about my situation, and it can be an awkward experience for both of us.”

“Nobody deserves to lose their chance to have a biological child.  Fertility is a loss so great that it cannot be put into words,” wrote Megan Tanner in her blog Fertility, Family & Cancer. Megan was diagnosed at age 32. “Sometimes, I feel like my body failed me twice (cancer being the first fail), but I have to remind myself it wasn’t me, it wasn’t my body – it was the treatment that did this to me.  The odds were against me, but it wasn’t anyone’s fault, especially my own.”

SPOTLIGHT: Several members of the Cervivor community have joined with other young adult cancer survivors to serve as vocal, active advocates for state and federal coverage of fertility-saving procedures as part of cancer coverage. “Young adult cancer patients have already had to sacrifice a lot to their disease – their chance at future parenthood needs to be valued and protected. We think one of the best ways to do this is by expanding access to fertility preservation, like sperm and egg freezing, through better insurance coverage,” says Joyce Reinecke, Executive Director of the Alliance for Fertility Preservation

“Over the last few years, we have worked with other nonprofit organizations and patient advocates across the country to call for this coverage, and we are thrilled to report that ten states have passed laws to protect this option for cancer patients. This has brought coverage to over 30M people who previously did not have this coverage!”

Let’s give voice to financial hardships that young adults face:

 “Being a young adult cancer patient was tough,” shared Morgan in her blog Creating Patient-Provider Synergy. “I turned 26 and I was essentially booted off of my mother’s insurance. I was paying a hefty premium, co-insurance, hotel and gas in order to receive the care I never had before. It became unfeasible and at the time I didn’t know where to turn for resources.”

Let’s give voice to those who share their voice:

Let’s give voice to the many Cervivors who were diagnosed when they were young adults, and who have become shoulders of support and advocates and educators for HPV vaccination, HPV screening and Pap testing. 

Like Cervivor Ambassador Karla in Honduras, who let us know on Facebook that she led a cervical cancer prevention and HPV vaccination information session at her work. Like LaTasha, a Cervivor Ambassador in Florida who was diagnosed at age 32. Like Amy, a Cervivor Ambassador who was diagnosed at age 24 and who now is applying her Cervivor School 2019 advocacy training at home in Australia. Like Tessa, who was first diagnosed at age 28 while in medical school, or Katie and Taylor, who were both diagnosed at age 27. Like so many others.  

Resources:

There are a number of organizations addressing the unique needs and challenges of young adult cancer survivors: Stupid Cancer, the Alliance for Fertility Preservation,  and the Ulman Foundation.

 

Friends Across the Sea

Cancer survivors often turn to the internet for community and support when they are diagnosed with cancer. No matter how much of a support system one has, there is absolutely nothing in the world like connecting with someone who truly understands and has been there. At Cervivor, our online community is a huge part of our movement, both in advocacy and support. It was no surprise to us when we found out that two cervivors who had connected online during treatment were going to be meeting one another for the first time at our Cervivor School in Cape Cod, this past fall. However, with Laura being based out of Ireland and Lucy located in Missouri, it felt bigger than usual. These two besties were about to meet for the first time and we had front row seats!

Later we had an opportunity to meet with Lucy and ask her some questions about her friendship with Laura and what it was like to finally meet her:

How did you and Laura meet?

Laura and I first met through an online forum for Cervical Cancer (Jo’s Trust). She reached out to me after reading one of my posts.

What made you continue connecting online?

We were nearly the same age which seemed rare considering cervical cancer isn’t thought to happen in young women in their 20’s. That was an instant connection and feeling like I wasn’t alone in my battle. Laura could tell that I was having a hard time with my diagnosis and that I was feeling down. She sent me a friend request on Facebook and we stayed connected that way.

What support and/or inspiration have you received through the connection?

Laura was a great deal of support for me. She was about a month ahead of me in treatment, so anytime I had questions regarding my treatment plan, I knew she could answer because she had just gone through it.

Is it weird to have such a bond and share personal info with someone you have never (and may never) meet?

Not weird at all. It was so comforting knowing that I had Laura to talk to, even if she was in another country. It’s amazing how much you’re willing to share with someone you feel connected to. I have probably shared more stuff with Laura than my own husband!

What was it like to finally meet each other?

Oh gosh I cried! Laura and I had been talking for a year and a half before we finally met. In the beginning, we always said that someday we would meet. Life gets busy and deep down I was afraid I would never get to meet her in person. I am so thankful for Cervivor for allowing us the opportunity to meet!

Has it changed the relationship (good or bad)?

I truly believe Laura and I have the same soul. She is everything I could have ever imagined and so much more. I am blessed to have met her and to have a friend in her. We still talk all the time and encourage each other through our advocacy for cervical cancer.

What’s next?

I’m positive I will see Laura again. A friendship like this doesn’t just go away or move on. Maybe next time will be in Ireland, we’ll see!

Team Cervivor was delighted to play a part in bringing these two advocates together for the first time. We are sending them both lots of Cervivor love across the miles.

-Team Cervivor