Today, I am attempting my first EVER Facebook LIVE with a closed group Surviving Survivorship that I recently created in an effort to raise awareness regarding late effects of cancer treatment months, years, even decades out from the end of treatment. If you are an adult survivor of cancer diagnosed from birth up to 39 years of age and would like to join the group, we’d love to have you.
Anxiety, Depression, and PTSD are known to be late effects of Childhood, Adolescent, and Young Adult (CAYA) cancer treatments though it can be difficult to find studies on the subject. A big part of me wonders if this is a failure to screen on the part of healthcare providers or a failure to report on the part of the individual survivor.
Survivor, there is no reason to suffer; help is available, so seek it out.
For those of you who are not familiar with my personal story, you can read about it here.
As I prepared for today’s FB LIVE at 1 pm EDT and available only to members, I found it quite interesting that anxiety, depression, and PTSD are often referred to as behavioral late effects rather than physical late effects in the literature. I would submit to you that all 3 are both behavioral and physical in nature though it is my belief, my personal opinion that the behavioral component has an organic basis rooted in the trauma of the life experience.
To follow are risk factors for anxiety, depression, and PTSD as presented by the Children’s Oncology Group based in the United States in their survivorship guidelines.
- Female gender
- Adolescent or Young Adult age
- Prior trauma
- Mental health or learning problems before childhood cancer
- Low levels of social support
- Parental history of depression, anxiety, or PTSD
- Cancer of the brain or spine
- Cancer Treatment delivered directly to the central nervous system
- Bone Marrow Transplant or Stem Cell Transplant
If based on the above, you find yourself to be at risk, it is essential that you bring this to your healthcare providers attention. The earlier the intervention, the less time spent suffering.
If distress lasts longer than 2 weeks and/or interferes with your ability to do key home, school, work tasks, you should call your HCP. Since physical health problems can also cause these symptoms; therefore, a thorough exam will also be needed.
If you are at risk, then you should assess yourself or ask those closest to you if you show signs of anxiety, depression, and/or PTSD.
- Changes in appetite accompanied by weight loss or weight gain
- Crying easily, cry for no reason at all, or the inability to cry
- Constant fatigue and low energy levels
- Increase in the amount of time spent sleeping
- Sleep disturbances
- Feelings of hopelessness, thoughts of death, escape, suicide
- Intrusive recall of the painful aspects of cancer
- Feeling extremely fearful, upset, or angry when thinking about cancer
- Physical symptoms when thinking about cancer
- Avoiding follow up and healthcare in general
- Refusing to talk about cancer
Let me begin by sharing with you that I have been working on issues related to each of these areas for a decade. Healing does not come easily. It’s hard work, and you must be intentional in doing the work. Part of that work includes building a tool kit.
- Identify fears: recurrence, second malignancy, infertility, dying young
- Identify triggers: any situation that has an element of uncertainty, smells, sounds, tastes
- Identify avoidant behaviors: avoiding appropriate follow-up, the hospital where you were treated
- Desensitization in the name of your present and future health
- Healing trauma through Yoga
- Movement: whether dance, walking, running does not matter; simply incorporate movement into your days
- Setting goals and following through
- Stepping outside of your comfort zone
In my clinical experience, more often than not, medication is needed to alleviate the symptoms so that you can begin the work. I couldn’t even begin to identify anything until the antidepressant and anxiety medication had reached therapeutic levels and lifted my depression and brought my anxiety down to a tolerable level.
There are also several books that I have found helpful through the years and refer back to quite often.
- The Body Keeps the Score by Bessel van der Kolk, MD
- Healing Trauma: Pioneering Program for Restoring the Wisdom of your Body by Peter Levine
- Overcoming Trauma through Yoga: Reclaiming Your Body by David Emerson
I would love to know what interventions and books you have found most helpful as you’ve traveled this path of survivorship, so please leave a comment below.
Lastly, I promised that I would share with you how I have overcome, or at the very least lessened, the amount of anxiety I experience when I am due for a mammogram or an MRI given my high risk for treatment-related breast cancer.
At the suggestion of my trauma psychiatrist, I made a video the night before my mammogram or MRI talking with myself about how I was feeling, my worst-case scenarios, my anxiety level followed by reminders that I had been here before and I would likely be here again. So, what attributes did I possess that would cause me to rise to the occasion of a breast cancer diagnosis. The video was about 3 minutes in length.
After I returned home with results, I recorded another video, and I could visibly appreciate the relief on my face, my disposition, my tone of voice, my body language and it didn’t feel like I had dodged a bullet; it felt like I had been responsible with my health and wellbeing. I used to watch the video every 6 months which is how often I am screened. Now, I can’t even locate it, but these testing days are far less intimidating and much less anxiety-provoking. I highly recommend you give this a try if you experience a great deal of anxiety prior to scans and such.
Finally, I think these late effects have gone under-reported, under-researched, and under-treated because of the stigma attached to each of them. Survivor, there is no shame in what you are going through; cancer is life-altering, even life-shattering. It can cause deep emotional distress that must be articulated so that the suffering ends, so please do not be silent if this is a struggle for you like it is for me.
PS: Please note that the featured image paired with this post was taken 6 years ago at the height of my struggle with anxiety.