The Gripping Fear of PTSD after Breast Cancer

This blog is long overdue. I like to write when I’m clear headed and have done research on the topic I am writing about. Not today. Today, after surviving breast cancer twice, I am once again experiencing the gripping fear of PTSD after breast cancer.

It happens when I go for routine tumor markers, scans, or experience a new ache or pain. Today is emotional while I wait on test results, but I couldn’t feel more determined to finally share why PTSD feels like a choke hold around my throat.  Today I wait for the results with fear; fear so many breast cancer patients experience. The wait, the PTSD, all comes with the heavy burden of hearing you have breast cancer.

Our Responsibility as Patient Advocates

I spoke to a friend and colleague yesterday, a fellow patient advocate, about our responsibility to share our lived experience and voices with the medical community and other patients. We do this in hopes of not only improving care for patients but also improving practice in medicine for clinicians whose job it is to disseminate information to anxious patients.

The details of this experience is one I put on the back burner for three and a half years. It is difficult for me to talk about. I am still angry. I have forgiven my health care provider who was involved at the time, but I have not forgotten.

The purpose of this blog is not to explain the markers, but I understand readers will want to know more details. Know not all oncologist uses tumor markers, but they are a diagnostic tool for patients that can be used for follow-up care. An explanation of tumor markers and why they are evaluated can be found here at a link from Science Direct.

The beginning of my PTSD was the day I walked into the cancer center I formerly went to and was told this:

“Mrs. Coutee, we saw some lesions on your spine from the recent MRI we took. I’m sorry, you are stage IV, metastatic.”

I sat in the chair and began to weep inconsolably. My husband sat next to me and put his arm around my shoulder. The nurses went out immediately to get a warmed blanket to wrap around my shoulders to ease the uncontrollable shaking of my entire body after receiving the news.

It was one of many tests and scans ordered to determine next steps to remove the tumors seen in my breasts from a recurrence of breast cancer. I knew I had lesions on my spine 7 years previous and was certain they had those records on hand.

I did not think to ask them if they had those records when I was shaking in fear, crying uncontrollably, and saying, “All I want to do is see my grandchildren grow up.” I was certain I requested the transfer of those files and they were in the possession of my new oncologist.

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.”

Does this sound like a reasonable approach? Is this something clinicians would be comfortable saying to an already fearful patient? I wasn’t given the privilege of those words the day I went in for the results of the MRI scan. As a result of the words used by my clinician that day, 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.

When they finally did get those records to do a comparative look, the lesions determined not to be cancer seven years previously, had not changed a bit in these new scans. That resulted in them having to retract the stage IV, metastatic diagnosis. The damage was done. I experience PTSD because of that one day. Words already stated, cannot be retracted.

How does my PTSD present itself?

I worry about the results in the weeks leading up to the blood tests. I talk to family and friends about it and feel as though I’m burdening them with grim worry and upcoming tests. I lose my appetite the day or two before and day of the tests. I cry the night before and day of the tests.

I checked into the office where I was having my blood work for tumor markers today. The phlebotomist brought me into the room. I was wearing a shirt that said, “Believe in the magic”. She asked me to verify my date of birth. I looked at her and smiled as I stated that today was my birthday. She returned the smile with a “Happy birthday”. That’s when I lowered my head and began to cry.

When she asked if I was OK, I told her I have PTSD and explained why as simply as I could relaying the story of what happened to me. She quietly said, “That’s not right.” I agree.

We are all human. I must believe that my previous oncologist, just two years into practice, handles things differently now with patients. Me, I must move on. I have forgiven but cannot forget that day. I would be negligent if I didn’t share this story. I would be remiss in not telling this story to both my fellow cancer patients and to the healthcare providers who must chose words carefully when speaking to patients.

I am an educator and will be for the rest of my life. If we don’t learn from situations, both good and bad, we cannot improve our own lives and the lives of others.

Today PTSD grips me.

Today, a friend and two-time breast cancer survivor sent me this picture.

This is what we do.

We get through these days.

We hug our grandchildren.

Acknowledge the love and strength our family and dearest friends send us on days like this.

We carry on.

Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.