terri-coutee
Photo from Nadia Strong

When breast cancer patients experience PTSD, it can be triggered for several reasons. My own experience leads me to understand what triggers my PTSD after a second breast cancer diagnosis. I realize it is important to learn to control the mechanism that triggers the response. How do I do this? Awareness, speaking to others who have been through it and how they manage their own PTSD after breast cancer, realigning my thoughts to conquer the fear that PTSD brings on. 

My PTSD occurs because I was diagnosed with stage IV, metastatic breast cancer, and seven days later the diagnosis was retracted. I lived with that diagnosis for a week. I told my family and friends, and they were sucked into the dark vortex that is the result of such a diagnosis.

What happened? My healthcare teamordered scans after my second diagnosis. They saw lesions on my spine and that’s when the stage IV diagnosis was given. Feeling sure they had the records of scans that I had done after my first diagnosis I believed the metastatic diagnosis was correct. A bone biopsy taken at a major cancer center in the United States confirmed seven years before the metastatic diagnosis that there was no evidence of cancer. The healthcare team from my second diagnosis did not have those original scans, so I feverishly began to FAX them to their office.

After the healthcare team viewed the scans from seven years before and compared them to the new scans they ordered they saw no change in the lesions they diagnosed as metastatic breast cancer.  I use my experience now as a teaching tool for patients dealing with PTSD.

What I Learned and Can Share About My Own PTSD Experience

I am a patient advocate representing both breast cancer patients and those seeking information about breast reconstruction after mastectomy. I want oncologist, breast surgeons, radiologists, plastic surgeons, primary care providersnurses, residence in training…, I want them and whoever else delivers news to cancer patients to know this. I believe they put the cart before the horse. I think the situation should have been handled differently that day.

I stand firmly by this statement and hope it can be used as a tool in training, improving, and evaluating how we disseminate information to patients.

I would have walked out fearful but not gripped by fear if this is how the situation was handled.

“Mrs. Coutee, we spotted some lesions on your spine in the MRI. We naturally have concerns because you have had breast cancer before, but we don’t know what they are now and don’t want to assume anything until we do further testing. Have you ever been told prior to this second diagnosis you have lesions on your spine? Are you noticing any new or recent pain in your back? We are going to do further scansbefore we make any further diagnosis.”

That didn’t happen that day and now, each time I go for tumor markers to determine if there are any indicators there is cancer present, I have a full-blown episode of PTSD. I am working to resolve my own fears. I spoke to a friend who has had metastatic breast cancer for close to 18 years. She told me to tie that anger up in a bag and let it go! I realize that much of my PTSD is a result of anger, a diagnosis that should have been handled differently.

How I Handle PTSD After Breast Cancer

I go into my tumor marker blood work appointments now using guided imagery. I visualize this. My body is healthy now. I feel good. I am strong. This will be okay and if the results are different, I will lean on those I trust and rely on to give me strength. I wear something special to the appointments, so I feel healthy and strong and treat myself afterwards to a favorite coffee drink. I put on my woman warrior face and ask for prayers, good vibes, and support for those days.

I don’t think that the PTSD I experience after my breast cancer diagnosis will go away. But I do believe it will diminish and be manageable. If you have PTSD from a breast cancer diagnosis that cannot be controlled by self-measures, speak to your oncologist, primary care, or trusted healthcare provider for additional help.

Have you experienced PTSD after breast cancer? How do you deal with it?

Terri Coutee
Breast Cancer Patient Advocate

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