You know, when I am all done with all this cancer stuff, when the last treatment is over, when the last scan has been read as clear, I will never really be done. What I mean is, I will have to follow up regularly for at least the next five years, if not forever, depending on how things go. It will be like a little shadow over my life probably for the rest of my life. There is a post traumatic stress element to having gone through any illness like this that is not likely to disappear any time soon. How am I ever going to have what seems like a normal ache or pain without overthinking it? What if that little ache is my cancer coming back? I already HAD normal-ish symptoms seemingly consistent with menopause and overwork….and they turned out to be cancer! Yes I know, I know, the growth was not a normal symptom, but you see what I mean about the rest of it right? You see? I am not even done with treatment yet and I am already pre-thinking about overworrying. Oh for heaven sake.
Being diagnosed and treated for cancer is in itself a stressful and potentially traumatic situation. Patients experience a whole range of feelings including fear, sadness, anger, anxiety and adjustment issues. There is such close association with cancer patients and post traumatic stress that the DSM-IV post traumatic diagnostic criteria were expanded to include diagnosis with a potentially life-threatening illness as a possible stressor significant enough to induce PTSD. The DSM-V PTSD diagnostic criteria allow for specific implications of cancer- related post traumatic stress, but there is still a lot more research needed in this area. Studies done by Mehnert and Koch showed that 54% of breast cancer patients viewed cancer as a traumatic stressor. Andrykowski and colleagues interviewed survivors of lung cancer and found that 37% viewed their diagnosis and treatment as a traumatic stressor. There are other studies that reflect similar results. Still other studies correlated the incidence of cancer related post traumatic stress to lower socioeconomic status, young age, limited social support or dissociative symptoms regarding the cancer experience( Not being able to recall any cancer related discussion with the doctor.) The bottom line is that cancer is considered a traumatic stressor by some patients. There just isn’t enough data out there right now to describe the entire course of cancer related post traumatic stress, but we know that it is out there.
So, now that we know it exists, what do we do about it? I think the key is integrating psychosocial support into the acute care phase and survivorship phase of cancer care. I think it is important to make therapy and mental health care directly available in the oncology setting, not as a completely separate venture in a different location. A lot of patients, myself included, have a difficult enough time getting to their regular oncology appointments, much less a whole separate group of appointments with a mental health professional. I think it is also important to take a detailed mental health and trauma history on every cancer patient from the very beginning. You need to know what background you are dealing with even before the intense stress of cancer treatment begins. If a patient already has an extensive trauma or psychiatric history, they are a set up for post traumatic stress with cancer treatment. Maybe if you are able to highlight that risk ahead of time, the patient can already be directed into mental health treatment before the stress of cancer treatment takes root. It is also important to continue to monitor distress and stress as treatment is ongoing. Ongoing screening for distress is already a component of the National Comprehensive Cancer Network’s clinical practice guidelines. There are specific pathways for management of acute stress, traumatic stress, and adjustment disorders. I think this is the very checklist that I have to go through every time I go to the doctor’s office. I also have a list of mental health support resources, but they are in a different location than my doctor’s office and it is still up to me to seek them out and make arrangements.These checklists and protocols are great, but they mean nothing in the grand scheme if the availability and connectability of mental health treatment is not easily and readily available. I still feel like it would really be up to me to bring up if I am having any mental health issues when I truly think it is the doctor’s role to watch for these signs even before I would bring them up. As a cancer patient, your mind is whirling all the time. You really do need some one watching out for you to clarify some things that you cannot clarify for yourself as readily. I am not saying that cancer patients are all helpless or anything. I am just saying that we may need a little extra support or supervision than most with everything else going on that potentially distracts us from caring for ourselves. Post traumatic stress is real. Now that we can identify it, we need to get better at addressing it.