The Cancer Trauma Project

Cancer Related Traumatic Stress is real and the The Cancer Trauma Project, together with Cervivor is doing something about it. We appreciate this opportunity to share our project with the Cervivor community and to make a lasting impact. The Cancer Trauma Project seeks to promote understanding of the emotional trauma people experience from cancer. We do this by listening to stories, writing, speaking, and training providers and we need your help.

Cancer Related Traumatic Stress is related to Post Traumatic Stress Disorder (PTSD) in that it falls on the spectrum of stress-related mental health conditions but it is not widely recognized. In fact, if your medical team told you about it, please contact us because we want to thank them! More often people aren’t told about Cancer Related Traumatic Stress even though people with cancer are often screened for distress. Distress and traumatic stress are very different. We might be distressed about being late to an appointment, having another scan, preparing for surgery or something else. For the most part, when the event that is causing us distress is over, we are OK.  With traumatic stress, the effects are lasting, might not show themselves until long after the event, and are often marked by experiencing the same thoughts, feelings, and body sensations as they did during the event, even though we know we are nowhere near the doctor’s office. This is a hallmark or trauma – your body remembers the event and can activate the same feelings and sensations as if you were there again. In its extreme form, this is a flashback.The most common events during the cancer journey that cause traumatic stress are the diagnosis conversation, the time between that conversation and a treatment plan or starting treatment, and follow up scans. But we know that the cancer journey is fraught with many more daily events, like having to get another needle, realizing that your plans for biological children may be over, losing your hair, figuring out how to explain to employers why you were out of work, medical bills, the onslaught of “well wishes” from others, sharing the news with loved ones, especially children, and many others.

The Cancer Trauma Project has collected over 50 stories. We incorporate these stories into our writing to demonstrate the impact of cancer related traumatic stress. Hear the words of one survivor:

The chemo. You feel like you’re really sick. It’s the chemicals and not the cancer but your mind can’t distinguish that. So emotionally you’re dying. I felt like I was facing my death even though I had some chances I wasn’t going to die. I could have. But I gripped it like I could die.

The biggest thing is I couldn’t ever feel grounded. I felt I was always on, trying to go 100 miles an hour to try and deal with everything. It is as if you’re playing dodge ball and everyone is always throwing balls at you.

I’d stay up late at night, my heart was racing, my actions were quick, trying to figure things out. Panic is disorganized but I would focus on let’s get on with everything. That stayed at a heightened level.

When we talk about the emotional trauma related to cancer so many people validate what we are saying but when push comes to shove people aren’t getting the right kind of mental health treatment and that is a BIG issue. To be effective we have to hear your stories. We are grateful that the Cervivor community teaches cervivors how to powerfully share their stories. We all know that having cancer can be a very stressful experience for both the person with cancer and their support system. But what hasn’t been clearly documented is the way the stress of cancer is emotional trauma. The Cancer Trauma Project is looking at trauma as Dr. Saakvitne and her colleagues did. Trauma in people with cancer is the unique individual experience of an event, a series of events, or a set of enduring conditions, in which the individual’s ability to integrate their emotional experience is overwhelmed.

Your story provides the wisdom that guides our work. If you’d like to participate you can complete our screening or send an email to contact@cancertrauma.com. After you complete the screening form, we’ll follow up to schedule an interview or send you the online interview. If you’re in the Washington, DC area, we’d love to meet you in person. If we are going to truly help people with Cancer Related Traumatic Stress, we need to know how the emotional trauma of cancer happens. By listening to your stories, the Cancer Trauma Project will learn from you and spread the word through writing, speaking, and training. Please join us in this mission.

Click here to complete the screening to share your story.

“We’re In!”

I started treatment for cervical cancer in spring of 2016. One of the first things I did was start searching for those with my cancer. When I found Cervivor, I immediately knew it was special.  It was a sisterhood of survivors, but they were also advocates! Cervivor was dedicated to eradicating our cancer. It wasn’t just a group of women looking for support, but it was a group of women who had been through it and were DOING something! I like to say that joining Cervivor and being trained at Cervivor School has given me advocacy wings.  I have had many opportunities both in my community and on the national level to participate in events as a Cervivor Ambassador. Most recently I was asked to represent our organization at the National HPV Vaccination Roundtable, in Atlanta. I had interacted on the Roundtable’s Facebook page, and felt like I had working knowledge of the collaboration. They are about stopping HPV…sign me up!

The Roundtable meeting began with a lunch. I arrived alongside Tamika Felder, Cervivor’s founder. The first thing I noticed was that we could hardly get to a spot at a table because everyone was wanting to speak with Tamika. They would greet her, as lifelong friends. Many of them had questions about Cervivor and other projects Tamika has in the works. Attendees were quickly inquiring about me and my role. They were interested in me as a Cervivor Ambassador and very excited to meet an HPV cancer survivor. I began to realize what it meant to be at this meeting. These were the countries top doctors, healthcare professionals, and researchers who had worked in this space for years! These were representatives from other organizations, our (Cervivor’s) partners in eradicating HPV and HPV related cancers! Tamika and Cervivor had been part of this collaborative group since it’s inception! I was so proud to be a part of a cancer nonprofit that is so well respected in this space. It further affirmed my initial feeling that when I found Cervivor, I found something special.

“Empowering Parents and Allies” task group

The meeting was an exciting two days packed with a lot of information and a lot of work! Each organization that is part of the Roundtable sends at least one representative. Those representatives are broken into task groups of their choosing. The task groups are just that, groups with an assigned task to help advance vaccination rates in the U.S. and spread awareness, education, and facts about HPV and the vaccine. The public educator in me was drawn to the “Empowering Parents and Allies” task group, as reaching families with knowledge is at the heart of many things I do. Most of the first day was spent in our task groups, reviewing previous work and annual goals, as well as setting new goals and collaborating with other task teams that may be partner groups in reaching these milestones. Our first evening was full of dinner presentations with updates from each task group and a celebration of the hard work and victories achieved by the Roundtable throughout the year.

The second day of the meeting was just as full. Each moment was packed with presentations from medical teams who are on the front line of vaccinating in the family practice setting, to panel discussions from research scientists on how the social media statistics can work in favor of our messaging. We had a working “Jeffersonian Lunch,” ensuring that time was purposeful and well spent. Every second was full of collaboration, information, and getting to the center of how we can change the HPV vaccination narrative in our country and strive to significantly reduce HPV cancer rates.To be honest there was so much information, that I joked with one of the other attendees at our table about how absolutely full my brain was by the end of lunch on day two. It felt as though it could not hold one more piece of information, fact, or even tidbit. I had officially hit my limit and the “meeting glaze” took over. You know, the glaze you get when the presenter’s voice starts sounding like the Charlie Brown teacher?

It was an honor to work with such an amazing group of professionals. My eyes were opened and faces were given to the people who are diligently working to spread the truth about HPV and a vaccine that is cancer prevention. How exciting to see the position that Cervivor holds among the nations top scientists, doctors, and cancer organizations. We are part of that! We are on the front lines of eradicating HPV! Cervivor is right there, side by side, elbow to elbow! We are rolling up our sleeves and deep into the space of changing the narrative on this virus and educating the public on how acting now can impact generations to come! I was so proud to be a part of this National Roundtable, but I was even prouder to be representing Cervivor. We’re in!

 

Holly Lawson is a two year cervical cancer survivor. Cancer has left her with many challenges, including Chronic Kidney Disease, but she is fighting for her survivorship and currently training with the Ulman Cancer Fund in the Cancer to 5K Program. She is an active Cervivor Ambassdor, who is finding healing in advocacy and sharing her story.