This story was written by a community member, Cindy B. She responded to one of our story requests about life with cancer.  

Two years ago, a growth in my pulmonary artery was discovered by accident.  Since then, a diagnosis of fibromuscular dysplasia and pulmonary artery sarcoma have turned my life upside down. I live every day from scan to scan wondering what will return and in which location.

It all started during a routine checkup when I mentioned a swooshing sound, or bruit, in my ears to my APRN.

An ultrasound and CT scan were performed on my carotid arteries. Beading, characteristic of Fibromuscular Dysplasia, was found in my carotid artery as well as a growth in my pulmonary artery.  [I learned that] imaging in the neck area usually will not go low enough to see a pulmonary artery, but in my case it did and it saved my life.

The subsequent race from doctor to doctor and multiple hospitals had my head spinning. Some doctors felt I had pulmonary artery fibromuscular dysplasia (FMD) which is benign and others felt it was pulmonary artery sarcoma which is malignant. Pathology confirmed sarcoma, but [there was some doubt because] the cells in FMD and sarcoma share some of the same qualities.

I felt alone, confused, and bewildered by the lack of understanding of my conditions.

This was a very difficult time [due to the] treatment and long-term outcome of these two rare diseases. To cope, I sought out some of the best institutions on the east coast to gather their input and suggestions regarding treatment.  I also began to research both FMD and sarcoma to present information to my doctors and get a better understanding of what we were dealing with.

The team of doctors I put together were receptive of my involvement [and respected] the research and information I gathered.  My surgeon was very interested in my case and I continue to provide him with information on FMD as there is very little known about this disease that strikes mostly healthy, young women.

[Since my diagnosis] I have had two open heart surgeries, four 4-day inpatient intensive chemotherapy treatments, and another open-heart surgery to replace the pulmonary artery with a bovine artery. The chemotherapy went well, I had to adjust to hair loss, and cardiac rehabilitation lasted for months but it was a great help in my recovery.

As a result, I have lost my job and my sense of security in my own body.

[Prior to diagnosis] I had always felt I was very in tune and aware of what was going on inside my body. [Now I] second guess myself.

How could I have not known two such sinister diseases were lurking inside me?  How could a seemingly innocent swooshing sound in my ears lead to such a dire diagnosis?  I had been seeing specialists for years and no one picked up on any of this. [I’m left wondering if I can] trust any doctor in the future with my care.

[Many people were] surprised by my diagnosis. I have a healthy diet, never smoked, hiked, I am not overweight, and I had zero symptoms of my sarcoma/FMD other than an audible bruit. My community, as well as my doctors, have been very supportive and my diagnosis has increased their awareness of both FMD and sarcoma.

“Scanxiety” is very real for me and probably will be for some time. [I am often] wondering if my FMD or sarcoma has progressed or if it will return with a vengeance in the future.  It’s a struggle to find doctors that understand one disease let alone two and how they interact with each other or, if in my case, they are one and the same. My oncologist says it is perfectly normal [to be anxious].

Now, I am trying to adjust to the stress of starting my life over again at age 55.

My doctors are all out of state because my case is so rare, so the financial stress of my illness, along with finding a new job, and constant doctor’s appointments is mentally and physically exhausting.  I continue to have FMD in my carotid, vertebral, and intracranial arteries.

[On the bright side], my diagnosis has also helped a few close friends on their own cancer journeys.

They have seen all I have been through which has helped them to realize cancer is not a death sentence. I still have moments of insecurity around my doctor’s appointments and scans, but I have shared honestly about my fear and [received] positive support.

My husband has been my rock.  It’s difficult to remember that the care giver is struggling along with you in an unimaginable situation.  My sister, my mother and my son have all been my cheerleaders and support group. They even went with me to my doctor’s appointments when my husband could not.  They have all taught me the importance of not only advocating for FMD and sarcoma, but for myself.

Cindy, Fibromuscular Dysplasia, Pulmonary Artery Sarcoma

Do you live with ‘scanxiety’? Share your story in the comments below.