I am a non-smoking prostate cancer survivor who was treated with radiation and hormones. In 2015, I passed some blood tinged urine. This sent me to my urologist who did a urineanalysis and cystoscopy along with a CT urogram. It was determined that I had a Ta tumor which was initially identified as low grade. I was reevaluated at Johns Hopkins where it was classified as a high grade Ta. Subsequently I had several TURBTs followed by BCG immunotherapy.
Initially, my urologist felt that I did not need BCG immunotherapy. But once my case was determined to be high grade Ta, he decided to use the BCG approach. Since then, I have had multiple TURBTs and to date, 12 BCG treatments.
The BCG treatments, while not pleasant, are completed within one day, and the side effects are over quickly. My urologic oncologist has consistently reminded me to live my life to the fullest so I am able to work the treatment schedule and exams in with other things I like to do in my retirement. But I diligently observe applicable exams, test results and follow-ups.
Having survived two cancers has made me focus on doing my absolute best to live life every day, and recognize the blessings, from faith to family, you have surrounding you. I am diligent in my checkups – I always have questions for my doctors and continue to stay in contact with other patients via Facebook groups, as well as a local support group in Bethesda, Maryland. I try to practice the 3 P’s — meaning patience, persistence, and positive mental attitude.
When I was diagnosed, I immediately contacted BCAN for information on bladder cancer, as well as a request to be connected with a bladder cancer survivor. I was pleased that just a day later I was matched up by BCAN with a man from Tennessee. He is a bit younger than me but otherwise has a similar situation as mine.
This Survivor 2 Survivor volunteer contacted me immediately. This wasn’t just a one-time discussion – we have talked a number of times on the phone, but it made sense for smaller questions and updates to move over to email. But after a doctor’s visit I will generally send him a short status update and get his reply pretty quickly. It’s a real help to be able to speak with someone in your age group who has a very comparable, similar situation with respect to bladder cancer and has been through the same procedures, such as TURBT. But you have to be willing to ask questions to keep the conversation going.
My advice to newly diagnosed bladder cancer patients is do your research — starting with BCAN and other online resources like the American Urological Association (AUA), the National Comprehensive Cancer Network) (NCCN) guidelines, the National Institute of Health (NIH) and similar organizations. Do not panic, but also do not proceed without seeking second opinions and reexaminations of any pathology work.