​The Double Whammy of Breast Cancer and SCI

Posted by Reeve Staff in Life After Paralysis on October 16, 2020 # Health

By guest blogger Sheri Denkensohn-Trott

I became a quadriplegic at age 16 and have dealt with increasingly serious health challenges since. Ten years ago, I developed significant pressure sores that required surgery. Although the surgery was successful, I suffered complications that kept me hospitalized for months. I was on a ventilator, then had a tracheotomy. My treatment involved daily chest x-rays and frequent CT scans.

I finally returned home two months shy of my 43rd birthday. Each year, like clockwork, I have my annual mammogram around my birthday. So, in spite of still being weak from my hospitalization, off I went to get screened. Ironically, the day before my appointment, my aide, while putting my bra on me, had felt a lump in my right breast. We attributed it to dense tissue.

For people who use a wheelchair, getting mammograms is what I call “ugly gymnastics.” Even if the machine raises and lowers enough (many don’t), it is impossible for me to maneuver close enough to get my breast in place. Instead, it takes two people to push and hold my upper body in position. My head resting in the right position hurts my neck because of the tracheotomy.

After the mammogram, I heard whispers among the technicians, including the word “comprehensive.” I knew that couldn’t be good, and I endured more uncomfortable and ugly gymnastics. When the technicians left the room, a doctor entered, and she told me I had a lump in my right breast, and a biopsy was needed. Then she said, “You’re in luck; the biopsy can be done today.”Sheri breast cancer walk

It was all happening too fast; as I reclined my chair for the needle biopsy (not the recommended way to do this; it should be done on an adjustable exam table), all I could think was why, after all, I had been through, did I have to endure this? A few weeks later, my gynecologist called with the news. He apologized for telling me over the phone, but said bluntly, “You have breast cancer.” I was devastated.

Luckily, my cancer was Stage I and not aggressive. Also, lucky for me, I did not need chemotherapy since I was not strong enough to tolerate it. The oncologist suggested a lumpectomy followed by radiation, but I explained that my disability meant that I could not feel the heat, so radiation was not an option. Instead, I opted for a full mastectomy with no follow-up treatment or drugs because of their negative impact on bone density (already a problem for me because of my spinal cord injury (SCI).

I will never know the cause of my breast cancer, I had genetic testing because of my Ashkenazi Jewish descent -- the most widely known genetic factor relating to breast cancer -- but the results were negative. I am left with the suspicion that the tumor was caused by the repeated radiation I received to treat breathing complications after surgery.

Women with disabilities understandably avoid getting mammograms. The screening procedure is uncomfortable and inaccessible, and in some communities, unavailable. There are so few quadriplegic breast cancer survivors that comprehensive data on our experiences is unavailable. But I know that I am lucky to be celebrating my 10-year breast cancerversary.

From my experience, I have thought about ways that medical facilities could adjust to make mammograms as easy as possible for individuals with SCI and other disabilities involving paralysis. First and foremost, they should be aware that Giotto, an Italian company, makes a fully accessible mammography machine that, like the x-ray apparatus in a dentist’s office, comes to the person. It is the answer for those with disabilities, and, in fact, makes mammography more comfortable for everyone. Tell your healthcare providers and radiology team about this new technology.

And for those of us with disabilities, a few pointers to avoid or mitigate the stress of mammograms:

  • When you make an appointment, inform the receptionist that you have a disability, and you will likely need an additional technician in the room to help with positioning. They should schedule an hour for your mammogram.
  • Make sure that your primary physician is doing regular breast exams if you cannot do them yourself. This is of huge importance and, in my case, a lesson learned. My doctor had never done a breast exam.
  • Remember, there are resources. Even though there is limited data on women with SCI and breast cancer, you can get help by reaching out to the Paralysis Resource Center.

It is easy to avoid thinking about cancer when you have multiple chronic conditions. But avoidance is never the answer. Screening is vital to early detection and a better prognosis. And with luck, in time, you can get screened with no more ugly gymnastics!

Sheri Denkensohn-Trott sustained a spinal cord injury in 1983 and is a C4 quadriplegic. She practiced law for the Federal government for 25 years and started her own business with her husband (who also has a disability) called Happy on Wheels, LLC. Their vision is to inspire others, with and without disabilities, to live happier lives through writing, speaking, mentoring, and consulting. Sheri is a columnist for New Mobility magazine and a regular contributor to other written publications. Additionally, she is a motivational speaker, professional storyteller, and mentors’ students and individuals of all ages. She serves on The Advisory Board of the Rockefeller College and is also a breast cancer survivor and Ambassador for the American Cancer Society. Sheri is currently writing her first book. Sheri and her husband reside in Arlington, Virginia. You can follow them on all forms of social media, and subscribe to their newsletter by accessing their website www.happyonwheels.com.