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.

But Mom, I don’t want a shot – HPV Vaccine in my Family

1 Week Prior to Doctor Appointment

Zoe: “I don’t want to get a shot. Will I have to get a shot?”

Me: “Yes, you will have to get at least one shot.”

Zoe: “I DON’T WANT TO GET A SHOT! Why? Why do I have to get a shot?”

Me: “To keep you healthy.”

Zoe: “But I don’t want to get a shot!”

Repeat, at least twice an hour, all waking hours.

1 Day Prior to Doctor Appointment

Zoe: “Mama, please!  Please, I don’t want to get a shot.  Why, do I need a shot?”

Me: “To keep you healthy.  I know you don’t want one.  No one wants to get a shot. But it is important.”

Zoe: “But why?  WHY? I’ll do anything.  Please I don’t want to get a shot!”

Me: “It isn’t negotiable.  You have to get a shot to keep you healthy. “

Zoe: “Please! I don’t want a shot!”

Repeat, at least 4 times an hour, all waking hours.

Day of the Doctor Appointment, In the Car, On the Way There

Zoe: “Why?  Why?! Why, do I have to get a shot?  Can I please not get it?”

 

It was then that I opted to pull the car to the side of the road.  I felt exasperated, annoyed, and exhausted by this discussion.  My daughter has just turned 11 and we are on the way to her well child exam, where I know she will be the recipient of at least 1 shot.  I know this because, at 11 years old, she is now eligible to receive the HPV vaccination. I know that I will be requiring this vaccination for her. 

My daughter was just 8 years old when I was diagnosed with Stage 2 cervical cancer.  I never told her that I had cancer.  I never used the actual word cancer to describe what I was going through.  I was concerned that it would cause her more fear than I wanted for her. So, I told both her, and her 6 year old brother, that I was sick.  That I had a problem in my tummy, and would point to my lower abdomen.  I told them I would have to have surgeries and take medicine that seemed to make me sicker, but was actually helping me to get better.  Each of my young children watched me suffer through chemotherapy, internal, and external radiation, 4 surgeries, multiple ER visits and many hospital stays.

What I went through fuels the effortless decision to get my daughter the HPV vaccination.

HPV is the cause for cervical cancer.  Statistics show at least 80% of people will contract at least one strand of HPV during their lifetime. Most people will fight off this virus on their own.  Others will not be so lucky, and the HPV will cause precancerous or cancerous cells to grow.  It was time to have a conversation, on the side of the road heading into the Dr office.

Me: “Do you remember when I was sick?  Do you remember how much pain I was in and how you had to visit me in the hospital?  Do you remember that when you visited me I had a needle in my arm?  That needle had to stay there.  For days.  For almost a week.  I had to sleep with it in my arm.  Do you remember how hard it was for all of us?  How we had to leave our apartment and live with Grandma and Grandpa?  How I couldn’t take care of you?”  I hate reminding her of this.  I hate reminding myself of this.  I wonder if this is the right thing to say.  “This shot they are going to give you today, the one you don’t want, it will protect you from getting the sickness I had.  This shot will protect you so you won’t have to go through the sickness that I had.  This shot will prevent you from possibly needing many others and getting poked with many more needles.  That is why you have to get it.  That is why it is not a choice.  That is why we are doing it.”

Zoe: “Then why didn’t you get it when you were a kid?”

Me: “Doctors didn’t have this shot when I was kid.  I wish they had, but they didn’t.  You are lucky that they have it now.  You are lucky to be able to get this shot!”

Zoe: “Will Isaac have to get it?”

Me: “100%.”

 

As for Isaac, he is currently 9 years old. My insurance will cover him receiving the HPV vaccination when he turns 11.  He will, 100%, be getting this vaccination as well.

The choice to vaccinate my son against HPV is just as uncomplicated and straightforward as the choice to vaccinate my daughter.  Almost every person who is sexually active will become infected with HPV at some point in their lives, if they do not receive the vaccination they will be left at risk for the high risk cancer causing strands of HPV.  “Most men who get HPV never develop symptoms and the infection usually goes away completely by itself. However, if HPV does not go away, it can cause genital warts or certain kinds of cancer,” (cdc.gov).  Someday, my 9-year-old son will have a partner.  Someday he will be sexually active.  I want to protect not only my son, but his future partner as well.  HPV is spread through skin to skin contact, so even if he and his partner practice safe sex, there is a high likelihood, that if not vaccinated he would spread HPV.  HPV can cause not only cervical cancer in women, but penile cancer, anal cancer, vulvar cancer, and oral cancers.  While women can be screened during their annual pap exams for HPV, there is no test for HPV in men, and usually, men who carry HPV show no sign or symptoms of the virus.  He would never know if he had the virus.  So, my son, if not vaccinated, would unknowingly be passing this virus on to his partner, and could potentially be at risk for cancer himself.

Many people wish for a cure for cancer.  People discuss and post prayers and thoughts for cures all the time.  But, we have a vaccination now that can prevent specific types of cancer from ever occurring!  Isn’t that better than a cure?  If you could prevent your child from having to suffer, why would you ever make the choice not to? The risks for the HPV vaccination are negligible, especially when compared to the likelihood of contracting the virus, and the horribleness of actual cancer treatments. Choosing to vaccinate both my daughter and my son against HPV is a no brainer.

In the doctor’s office

Zoe: “I don’t want to get this shot, but I know I have to.”

Me: “Yes.  You have to, because I love you to the moon and back, and I never ever want you to be as sick as I was.”

 

I know I will say the same thing to my son when it is his turn to get the HPV vaccination.

Do you have questions about HPV and the HPV vaccine?  Take a look at these resources for more information.

Cervivor:  http://cervivor.org/hpv-and-cervical-cancer/understanding-hpv/

CDC: https://www.cdc.gov/std/hpv/stdfact-hpv-and-men.htm

Read more about Ana here:  http://cervivor.org/stories/ana/