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Donna McAllister: From Determined Patient to Dedicated Advocate
“I was treated with compassion, given hope, and kept informed of every facet of my treatment.”
My journey at Fox Chase started nearly seven years ago, when I was a new patient. In September of 2014, I was feeling a little off. I had gone for a walk and felt out of breath and a bit woozy. Knowing that something was wrong, I decided to go to the doctor. After I received the results of my bloodwork, they advised me to go to the emergency room immediately. Once there, I had a large amount of blood in my urine and I was admitted to the hospital. CT scans determined I had a growth in my bladder. After a biopsy confirmed the growth was cancerous, I was referred to Fox Chase.
During my first visit to Fox Chase Cancer Center, I met with urologic oncologist Dr. Alexander Kutikov. He diagnosed me with muscle invasive bladder cancer and informed me that the tumor was attached to the wall of my bladder. Dr. Kutikov immediately consulted with Dr. Elizabeth Plimack, a medical oncologist. Together, they suggested that the best course of treatment would be to receive chemotherapy before surgery to shrink the tumor and prevent it from spreading beyond my bladder. I began chemo just one week after my first visit and finished just before Thanksgiving. During my follow-up visit, Dr. Kutikov told me that my tumor had shrunk 30 percent.
At that point, the next step was to surgically remove my bladder. Since I would no longer have a bladder, Dr. Kutikov would need to create a way for me to urinate. We decided that an ileal conduit urinary diversion, where a segment of my intestine directs urine through a stoma into an external collection bag (an ostomy bag), would be the best option.
I was nervous after hearing what the surgery would involve, but I was put at ease by my care team.
Leading up to my surgery, and even during my visits with Dr. Kutikov and Dr. Plimack, I was prepared for what to expect after my surgery with my external ostomy bag. You don’t just walk out of the hospital with an external bag after surgery not knowing what to do. From day one, I was given a sort of show and tell, and my doctors and nurses never made me feel like any of my questions were stupid. I was given a goodie bag of hands-on examples and brochures to take home and study, which explained where my stoma would be placed and how to handle everything.
During my procedure, Dr. Kutikov removed my bladder and my uterus. Everything went well, and the tumor had not breached the wall of my bladder, which was good news. My body doesn’t react well to anesthesia, so my recovery time took longer than most patients. I stayed in the hospital for longer than expected. While I was there, I saw the ostomy nurse every day, and by the time I went home, I was a pro at handling my ostomy bag!
During my initial appointments and scans, the radiologists also noticed that I had a very small nodule in the lower part of my left lung. But, at the time, it was very small and not worrisome. My care team decided we would keep an eye on it while I underwent my initial treatment.
Just over a year ago, it began to grow a bit. Because I am healthy, it was decided that having it surgically removed was my best option. Dr. Stacey Su, a thoracic surgical oncologist, was the one who performed the surgery laparoscopically. She was wonderful and made me feel calm and confident about the surgery. Since then, I have been in great health!
After my treatment, I regularly visited Dr. Kutikov for check-ups. I also began to get more involved with helping other patients. In the years since my treatment, I have mentored four patients and have been a part of the Patient to Patient Network, which is a program that matches a new patient with a current or former patient to talk about their experience with cancer care. In 2015, I joined the Fox Chase Ostomy Support Group (which is now meeting virtually), and in 2016, I started attending the yoga classes Fox Chase offers patients and survivors.
I have also participated in a number of panel discussions with Dr. Kutikov and Dr. Plimack on collaborative care in bladder cancer, and in 2019, I joined the Fox Chase Patient and Family Advisory Council (PFAC). PFAC aims to strengthen collaboration between patients, family members, and staff in order to enhance Fox Chase’s standard of care. I strongly believe that how you are treated when you are sick is just as important as the medical care you receive, so this group is something I’m really passionate about and proud to be a part of.
I will also be serving as Fox Chase’s Patient Ambassador for the annual Paws for the Cause fundraising event this coming fall, which raises money for cancer research while involving pets.
Because of the pandemic, I have not been able to do much in-person work at Fox Chase, but I have been keeping myself busy. I keep active through yoga and walking, and I love to knit, crochet, and sew. In fact, this past year, I have used my sewing machine more than in the past 20 years! I have sewn more than 300 masks for family and friends during the COVID-19 pandemic. I also recently received my first dose of the COVID-19 vaccine, so I’m looking forward to more frequent visits with my granddaughters.
I hope my story can help other patients feel some sort of comfort in their battle with cancer. Although the fear does not go away, I think that sharing these experiences can give some peace of mind to those facing uncertainty.
Learn more about bladder cancer treatment at Fox Chase Cancer Center