Episode 38 Shownotes - Post-Cancer PTSD
You are listening to Best Life After Cancer, Episode Number 38. This week we are talking about PTSD. I want to remind you that I am a doctor, but not your doctor, so run all medical issues by your primary team. If you are in crisis, and thinking about harming yourself, please call 911 or reach out to national suicide prevention hotline at 1-800-273-8255.
Hey, friends. Hope you are well. I am typing this going into Valentine’s Weekend. We are not really people who make a big deal of this. My husband and I don’t do a gift exchange or anything, but do plan a dinner together sometime close to the day (usually not on actual Valentine’s day – too crowded and limited menus and other things that make it less fun). On the actual day, we usually have some sort of fun dinner as a family with as many heart things as I can add – this year I found red heart shaped ravioli at Costco that I know my kids will love, chocolate covered strawberries, and more fun treats. I love to find little things to add a celebratory feel, especially during Covid. Valentine’s day will be past when this airs, but I hope you had plans to show a little added love to the ones most special to you this weekend.
This is a week I am feeling even more grateful than usual for family. There was an accident a few weeks back in our extended family, and we are so lucky that we didn’t lose one of our family members. Following the accident, it was really interesting or at least noteworthy – this event brought up a lot of anxiety in me. We had an accident in my household a few years ago – we had a dog get injured, and my husband bitten when he tried to rescue her, totally not her fault – she was panicked and in pain, and ended with him in the ER and her needing to be put down. It is too much of a story for here, but the bottom line was that after, I had flashbacks and trauma from it for about 18 months (Link to story here). Another pet accident a few years later, and then a phone call telling me my 32 yo brother had suddenly passed from a heart issue, have led to some pretty significant repeated trauma over the last 5 years of my life. With the accident in our family this week, I found that it brought back a lot of the anxiety and issues I thought I had worked through and put behind me. This made me curious. Is there any research on repeated traumas? Is this something I am seeing in my patients and not recognizing? How common is PTSD in cancer patients without repeated events?
First, let’s define – what is PTSD? It is failure to recover from a sudden and catastrophic traumatic event. In one study, it is estimated that worldwide, 70% of people will experience a traumatic event, but the lifetime prevalence of PTSD is only 5%. PTSD is characterized by a sense of living in fear of re-experiencing the trauma and is often accompanied by flashbacks, nightmares or intrusive thoughts. During the flashbacks, the person experiences memories, sensations and emotions from the event as if it is happening again in present time. It is important to understand that trauma-related memories differ from memories of non-traumatic events. In cancer patients, some of the unusual sensations may be pain in one of the surgery scars and chemotherapy-related nausea, along with more common palpitations and shortness of breath. One of the things I wasn’t aware of is that PTSD symptoms are considered pathologic when they persist for more than 1 moth post trauma with distress and functional impairment. This is actually something that is being looked at more closely recently in cancer patients. A review on the NIH website quotes that 40% of patients with cancer experience significant emotional and social distress during treatment, with approximately 1/3 of patients developing distress that requires specialized intervention. An article on Cancer.net quotes a rate of PTSD of 1 in 4 women with breast cancer and the American Psychiatric Association quotes that 22% of cancer survivors suffer from some level of lifetime cancer-related PTSD. The article points out that anxiety after cancer is a NORMAL and EXPECTED part of the process. But normally these feelings lessen as time goes by. If they continue to get worse, or affect daily life, it could be a sign of PTSD. Other symptoms include avoiding places, people or things that bring back memories, strong feelings of hopelessness, trouble sleeping or concentrating, loss of interest in activities and relationships that used to be enjoyable, self destructive behavior. Usually these symptoms develop within 3 months of a traumatic event, but can occur months or years later.
The article also gave some information on people more likely to get PTSD. These include those with prior PTSD or other mental health conditions prior to cancer, women from minority groups, people with high overall levels of stress, people who use avoidance techniques to deal with stress (such as alcohol or drugs). It is more pronounced in those with less formal education, low or no income, and single people. It can be triggered by follow up scans, doctor visits, pain and other physical symptoms, or the death of a public figure from cancer. A very interesting note in one article is that some women are triggered by pink ribbons which remind them of diagnosis, which may lead to changes in how these women function during October and Breast Cancer Awareness month. Strong support from family and friends is protective, as is a good relationship with the treating healthcare team. Finally, receiving accurate information about diagnosis and stage is protective.
The article from the NIH indicates that cancer related PTSD often goes undiagnosed and untreated. One of the reasons for this is that the DSM-IV, or the internationally agreed upon handbook of mental disorders, only recently added the diagnosis and treatment of a life-threatening illness as a traumatic stressor that can result in PTSD, so this is a newly recognized variant of the condition. This change took place after multiple studies reported traumatic stress-like reactions in patients with cancer. Also, many patients are not referred or decline referral because high levels of sadness and anxiety are often perceived by both patients and the treating team as “normal” reactions to cancer diagnosis and treatment.
This is compounded by the fact that many patients are encouraged to “think positive”, “be a fighter” and “be grateful it isn’t worse”. This may lead to feeling that they can’t express grief, fear and anxiety without being “weak”, “ungrateful” or “giving in”. Add in that patients might know that stress affects immunity, and many therefore suppress or force down these feelings, which actually adds to the stress on our bodies. Multiple studies have shown that psychological intervention can increase quality of life in cancer patients. Patients with untreated distress have poorer outcomes and worse compliance with treatment and follow up plans.
It’s pretty clear that cancer patients can have PTSD from this data. What about repeated traumas related to cancer? The bulk of the research on repeated trauma is in survivors of childhood abuse, but there is clearly data that repeated trauma brings more issues for many people than a single event. From Wikipedia, Complex post-traumatic stress disorder (C-PTSD; also known as complex trauma disorder) is a psychological disorder that can develop in response to prolonged, repeated experience of interpersonal trauma in a context in which the individual has little or no chance of escape. C-PTSD is most often associated with chronic sexual, psychological, and physical abuse or neglect, chronic intimate partner violence, victims of prolonged workplace or school bullying and victims of slavery and human trafficking, among others. It is can result in prolonged feelings of terror, worthlessness, helplessness, and deformation of one's identity and sense of self. It is noted in multiple articles that patients with this will often have anxiety, rumination and fear that may not meet the criteria for PTSD, but are still very distressing. While I don’t think my story qualifies as this, I continued to ponder this specifically with my patients who are diagnosed with either a second cancer down the line, metastatic disease or have other significant recurrent issues in their journey after cancer. It was interesting, as I was thinking about this, a breast cancer survivor I coached recently came to mind immediately. She was almost 10 years from her cancer diagnosis, but still had a lot of fear and anxiety. She sought me out, looking to feel better about her cancer history. When I first met her, I was surprised. Almost 10 years out, without any recurrence. Why had the fear not gotten better yet? Then she told me that every year or so, they found an abnormality at the site of her breast cancer on her imaging. This lead to multiple repeat biopsies, aspirations and several surgeries. Even though there had never been a recurrence, she was clearly struggling. Enough that she came looking for help and joined my coaching group. Something was seen again while she was in the group, and it was so useful to be able to help her work on her thoughts about the upcoming procedures and stress. It was very clear that her repeated biopsies and recurrent bouts of “my cancer might be back” had prevented her from moving on as many people can.
While I have not formally diagnosed patients in the past with PTSD, I have certainly been aware of the challenges my patients face. I have had many patients over the years that have described how every mammo and test brings fear, and for the women diagnosed with a second breast cancer, that fear is significantly heightened. When we think about it, this makes perfect sense. The instinctive part of our brain wants to keep us safe. If we had a mammo once that showed a cancer, our brain from then on wants to protect us from the negative emotions that came after the mammo. Our instinctive, or primitive, brain, the part watching for lions and tigers and bears, really thinks we shouldn’t get more mammos, because the same thing might happen. Our planning, higher brain, or prefrontal cortex, has to overrule the primitive brain, because it knows that planning and early detection is our best protection, even if it is scary. When I thought this through, 2 things became so much more apparent. First, no wonder some percentage of people don’t go for the mammos or cat scans I order after treatment! It also helps me to understand why some people disappear and don’t follow up at all. And second, of COURSE our brains will make double the fuss if we have repeat mammos that lead to repeated negative emotions. That part of our brain for SURE thinks we are crazy by continuing to put ourselves in the line of fire.
I think this process is even more heightened in patients with metastatic disease. For most people, if their cancer is found to have spread, treatment is ongoing. Meaning it continues over the remainder of their life, possibly with some breaks, but usually ongoing. Most commonly, a treatment is continued until it becomes ineffective, and then a new treatment is started. Repeated scans are done to see if the treatment is effective, and for most people, at some point, it is shown that a new spot has developed. This leads to repeated traumas of being told a life threatening condition is back, with all of the uncertainty that brings.
The reason I think this is SO critical to be aware of is because it can affect how people deal with their cancer moving forward. If the PTSD leads to patients not coming for follow ups, or not getting their testing, they may be creating a situation where we find a recurrence later, decreasing the chances of cure. If it leads to them using food or alcohol to suppress the feelings, also not great, as we know alcohol is a risk factor for recurrence in many types of cancer, and obesity increases risk of not just cancer recurrence, but also heart disease, hypertension, diabetes and more. How to deal with PTSD? I will share with you some of the recommendations and also what helped for me personally.
For starters, if you think you might have PTSD, and are struggling, reach out to your team and get help. Help may take the form of medications for anxiety and depression. It might mean psychiatric evaluation, therapy or other treatment. Cognitive behavioral therapy and something called eye movement desensitization and reprocessing, or stress inoculation training may be recommended. Support groups with others facing similar challenges can be helpful. If you are considering harming yourself, get help immediately. Next, know that you are not alone, not flawed, or damaged, weak or any of the other things our bully brains like to tell us.
For me, I want to share what I learned from my experience with PTSD. I am purposely not sharing a lot of detail in this podcast, because it will be too much for many people. If you want the full story, you can read it HERE. With the first accident we had with a pet, I spent 18 months really trying to force down the flashbacks. I remember when I felt one starting, I would literally use all my strength to squash it and force it from my mind. I envisioned getting in my head and literally pushing the flashback out with both hands. But things our brains need to deal with keep coming back. If we avoid them, they get bigger and bigger, and scarier and scarier. This is because our brain knows it needs to process the event. So, the more I pushed the flashbacks away, the stronger they became, more intense, persistent, and debilitating. I thought these would eventually go away on their own, and had not sought therapy or other treatment. My first life coach told me that I had to process the pain, which means not running or forcing it down or away. She quoted Ekhart Tolle, what we resist persists, what we fight, we strengthen. Allowing these flashbacks was a horrible thought. But I took her advice to heart. I actually scheduled time for this, and sat down and purposely thought about the event, and when the flashback came, I let it run all the way through, and really let myself feel the terror, grief and horror. It sucked. I did this every day for 2 weeks. Every day was a little less horrible than the last. At the end of the 2 weeks, I felt that I was ready to stop and see what happened. I still have thoughts about the event. They still make me sad, but not panicked. The process I took myself through is similar to those used by therapists, but for me, I just wanted to do it without someone watching, questioning and commenting. For sure, you may need help to go through this, but I would tell you from just my personal experience, taking some time to work through what your brain is screaming for help with instead of forcing it away or down is a great first step.
With our second pet accident, I KNEW that forcing down the feelings was the pathway to flashbacks, and I spent the first two weeks after letting them come whenever they came, letting my brain feel the shock, horror and grief. It SUCKED. For sure. But, after a month, I was sad but not having any type of overwhelming flashbacks. It took longer to feel better, but we don’t expect grief to disappear overnight.
I hope this is helpful. The bottom line – if you are questioning whether you possibly have PTSD, it is possible, and you should take steps to address it. You are not weak, and you are not alone. I have linked a few of the journal articles about this on my blog, where you can find the show notes for today’s discussion. The final thing today is a quick ask from all of you. If you are enjoying this podcast, please consider rating, writing a review and subscribing. Apple lists podcasts based on the number of written reviews, so doing this helps other patients who need help finding me! Thanks in advance, and I will speak with you soon!
Cancer.Net Cancer PTSD Article
Psychiatric Times Cancer PTSD Article
