Breast cancer survivor gives ideas to cope with genetic cancer test results worry.
Breast Cancer Genetic Testing: Ways Patients, Survivors, And Previvors Can Cope With This Worry
I tested positive for the PALB2 genetic abnormality seven years after beating breast cancer in my 40s. There are so many more discovered genetic abnormalities out there now beyond the BRCA1 and BRCA2 I was tested for seven years ago. I chose to redo the genetic testing recently, for my sake and for my family's sake, but now how do I mentally and emotionally cope with the results and my already-made choice to have a prophylactic double mastectomy based on the genetic results now?
It feels like patients, survivors and previvors now have access to a lot more genetic information, yet the support systems to cope with genetic information is still limited. It is all so new, yet still I am fortunate. Here is how I can cope.
People. As a breast cancer survivor, I can turn to the people support systems I already have-my oncology doctors, my breast cancer support group (though it is a little weird to go back after being out for seven year years), my oncology talk therapist and my "oncology" friends (people I connected with through my past cancer experiences). I suspect it is more difficult and lonelier for newly diagnosed cancer patients and previvors.
Coping tools. I can also turn to the tools I added to my emotional tool bag with the help of my oncology talk therapist. I use deliberate mindfulness, time spent focusing on one of the five senses, meditation, gratitude, soothing music and visualization to name a few. In addition, I have the perspective of having survived breast cancer and melanoma, and I have years between those events and right now. However, time and perspective are not available for the newly diagnosed and previvors, just by virtue of what they are.
Online support. Though some of the specific genetic cancer support groups online, including on Facebook, are pretty small, they still offer support and help to reduce the "aloneness" of coping with a genetic results.
FORCE, Facing Our Risk Of Cancer Empowered at www.facingourrisk.org is a network of genetic researchers and has information for survivors, previvors and caregivers.
Journal. Another very important tool that I will continue to use to cope is my journal. I do not want to think about the upcoming double mastectomy every day for the next several weeks. I do not want to become a boring or upsetting one-topic conversationalist. When the upcoming surgery and PALB2 pop into my brain, I will turn to journaling. In my journal, thoughts can get out of spinning endlessly around in my head. I can say whatever I want without worrying about worrying anyone. Make sense?
My choices, as someone who has already had multiple surgeries, chemotherapy and radiation treatments, may be different from someone who has not had or not yet needed cancer treatments. Honestly, I really do not want to go through chemotherapy again if I can do something proactive to prevent that (a prophylactic double mastectomy). That said, I also know, as a survivor, that I could get through chemotherapy again if I had to do it.
I suspect that survivors may be more proactive than newly diagnosed cancer patients and previvors, but I don't think we have the data on that yet. It is hard to say from where we are standing right now. It also depends on each person's family history with cancer, personal experience with cancer patients, and even personality. Time will tell and I hope some of these tools will help you today.