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My PTSD occurs because I was diagnosed with stage IV, metastatic and seven days later the diagnosis was retracted.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 team ordered 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 providers, nurses, 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 scans before 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 eighteen 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 OK 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.
I like the tying the anger up in a bag and ditching it option! Because of where I live there are no “steady” who have known long enough to have a profile on me. Oddly, my Cardiologist who has managed my case from before my first heart failure is both located a long distance from me and too high in the world of specialists to get past the way “things are supposed to be” as mandated by the system. As a result and by institutional procedure, the Cardio contacts whatever Primary Care Doctor I had at whatever date that contact form was generated and that now dead-file where a person was archives my data to the shredder and nothing gets to me.
This has caused quite a bit of unnecessary damage to me physically. By leaving things known by the specialist unattended until they crash I’m no longer “fixable” by surgery. This, of course, was not conveyed to me, nor was it known to me I’ve been on a transplant wait-list for the last two years. The good news is a pace-maker will probably help, though how I’ll find about it and when the install will happen remains to be revealed.
It’s a very strange thing to walk alongside an extremely sophisticated and fully functional life-saving system and be invisible to it. As for dealing with this kind of disassociation? I haven’t found a solution beyond avoiding situations where Medical people feel obliged to offer help and can’t.
Hello Scott,
This is a tough situation and disheartening to read. I hope that very soon you are able to move forward with the transplant. It must be very frustrating, however, to deal with your current system and what you are trying to get done to improve your health. Always good to hear from you and find a big bad to tie that anger up in! Just let someone else do the lifting when you throw it out the door!!
~ Terri