We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from cancer survivor Dan Adams.
This past November I had my semi-annual cystoscopy. My visit was an early Christmas present, as I wound up receiving an "all clear" from my urologist. This coming May, if I get another "all clear," it will mark five years of cancer-free living.
I had a resection to remove a bladder tumor in April 2008. I received an inconclusive pathology report following that procedure and a lot of hesitation from my first urologist. That's when I sought a second opinion from a urologist at a major university hospital. Another resection and a couple of rounds of immunotherapy, and my bladder cancer was gone.
My follow-up cystoscopies were initially every three months, and now I'm comfortable with a six-month schedule. If something is going on in there, I want to catch it early. I'm not ready to move to an annual checkup. I don't know if I will ever be ready.
It's been a bumpy road; a few "red spots" in the bladder that required biopsies and a perforated bladder (those damn catheters) elevated my anxiety above and beyond what might be the norm following a cancer diagnosis. Having a cancer with a high reoccurrence rate also contributes to my feelings of anxiousness.
During the first couple of years in this war with bladder cancer, anxiety consumed my everyday living. Cancer was always on my mind, but I was unaware that anxiety was running my life. It took a long time, but eventually I learned to recognize changes due to anxiety, things that aren't really "me." Inattention to details, aimlessly daydreaming and becoming much more emotional were some of the telltale signs. I realized things weren't right and I sought the professional help I needed. Thankfully, this help and the encouragement and support of a close family brought me through a very trying period.
While my anxiety is more or less under control, I'm still very aware that it's there - and I've come to realize that knowing you have anxiety issues is essential to dealing with them. I know my anxiety level increases as I approach my next cystoscopy, and so I now slow down in the weeks leading up to the procedure and defer major decisions to a less anxious time.
I'm very aware now of anxiety and how it has affected my life beyond cancer. In this nearly five-year battle, anxiety has been the one medical issue, or side effect, that no one brought up; no one mentioned it as an issue to be aware of or offered treatment. I wish someone, in the beginning, had told me that cancer is a game changer, that my life will never be the same. I wish someone had explained that I need to be aware of how powerful anxiety can be, how it can affect your life, your relationships, your work.
I've been a bladder cancer warrior for almost five years, but it's been only the last few years that I've come to realize that anxiety - not just the disease - is something I need to conquer.
Dan Adams lives along the Southern New Jersey Shore where he and his wife of 35 years raised three children and recently became grandparents for the first time. Dan is committed to raising awareness of bladder cancer and supporting those who are newly diagnosed through the Inspire/BCAN Support C0mmunity.
