The following is a Guest Post from a fellow advocate of mine. Bob McEachern is an advocate for Follicular Lymphoma. You can find much more of his writing on his own very popular blog “Lympho Bob”. In this post, he describes how one going through cancer may likely face symptoms of Post Traumatic Stress Disorder (PTSD). This topic interested me greatly, as I have met advocates of many different chronic illnesses and have often wondered how receiving the diagnosis of a chronic illness and living with a chronic illness may impact one’s mental health. I now have a first-hand description.
PTSD and Cancer
Recently, a friend posted a link on Twitter. Like me, she’s a cancer survivor – breast cancer for her, Follicular Lymphoma for me.
The link was for a study of Post-Traumatic Stress Syndrome (PTSD) in cancer patients. The researchers began with a simple assumption – that a cancer diagnosis is a traumatic event (I’d say that’s a good assumption). They interviewed patients when they were diagnosed (their exposure to the trauma), and then again at 6 months and at 4 years after diagnosis. The interviews focused on their possible PTSD-related symptoms – intense fear, horror, or helplessness at diagnosis, and then later re-experiencing the event by avoiding it, or feeling numb or detached, for example.
They found that, 6 months after diagnosis, about 20% of cancer patients experienced some form of PTSD. That’s more than 3 times the rate of PTSD in the general population.
The PTSD rate was in line with the general population at 4 years, but there are plenty of cancer patients who relive their experience, even years later.
My own diagnosis was as traumatic as many others. I was 40 years old, the healthiest I had ever been, and had three young children, aged 10, 8, and 6. After the diagnosis, I spent a week doing blood tests, a PET scan, and a bone marrow biopsy, trying to figure out what I was dealing with.
After all that, I went to see a Lymphoma specialist at a nearby research hospital. For the first time, in the waiting room, I was surrounded by other cancer patients, and my reality started to creep in. I picked up a brochure and saw the 5- and 10-year survival rates for Follicular Lymphoma. It was all overwhelming. I spent the next two weeks breaking into tears every half hour or so, wondering, Will that be me? Will I be a statistic? And wondering what would happen to my kids. It was the darkest time of my life.
Fast forward 9 years. My wife needed some testing done at the same hospital. We went up to the second floor of one of the building, and as she was checking in, I got a strange sense that I’d been there before. The building is kind of pyramid-shaped, with one wall completely made of glass windows. In the middle of the waiting area, there was a large planter full of ferns.
I knew those windows. I knew that planter. This was the waiting room that I had been in before.
As my wife sat in the nearly empty waiting room to be called in, I looked around for a directory, to see if this was actually the Hematology section, and not the specialty she was being tested for. Before she got called in, I told her that I thought this was the same room.
She went in for the tests, so I sat by myself in that waiting room, for the 3 hours or so that the tests took. I had brought a book with me, but I couldn’t focus on it. I got up and walked around, still wondering if this was the same room. Sure enough, I found a bronze plaque that had something to do with an important donor and Hematology. This was the place. I also found a big Andy Warhol-type print of a local personality, his face repeated like Marilyn Monroe’s, hanging on the wall. This personality had blood cancer, too. It’s funny — one memory of that bad day was seeing him in the hallway, when he must have had an appointment. This was most definitely the old Hematology department (which I later realized had moved to a new cancer building).
Lots of feelings came flooding back to me. It’s a strange sensation, reliving something so vividly, nine years later.
I don’t know if what I felt would be classified as Subsyndromal PTSD, as the researchers in the cancer study call it. But it’s easy for me to believe that cancer patients can experience those symptoms, even years after they were diagnosed.
One fascinating finding from the PTSD-Cancer research that really stood out for me: patients with all types of cancer experience PTSD at 6 months at a rate higher than the general population, except one: breast cancer patients.
The researchers think that this is the case because breast cancer patients have so many more support resources available to them than patients of other cancers.
Another conclusion from the researchers that stood out: many cancer patients who do experience PTSD symptoms have the belief that going it alone is a sign of strength, and they should just gut it out when they have emotional problems.
It’s not an easy leap to put those two things together. Breast cancer patients (about 99% of them are women) have more support resources, but are also more likely to use them. In general, men are less likely to seek out help.
My two experiences, nine years apart, were very different. After diagnosis, when things went dark, I kept everything inside for two weeks. I needed to “be strong.” I remember watching TV with my wife and kids, turning off the lights “so I could see better,” but really trying to hide my tears from them. Things only got better when I finally opened up to my wife. She was and still is my rock. She listened, let me cry, and let me know that whatever happened, we would go through it together. Nine years later, after revisiting the same office and feeling the same feelings, I didn’t make that mistake again. We talked through it all right away.
The researchers conclude that more support for cancer patients’ mental health is needed. Even a doctor taking time to debrief a patient’s emotions, right from diagnosis, can help. A doctor’s willingness to bring up the issue can go a long way toward finding a problem.
And patients need to be willing to seek help. Being silent is not a sign of weakness, they say. In fact, it’s a sign of strength – it takes courage to seek help.
That’s a good reminder for all of us.