There is nothing scarier than the words “you have cancer.” When I was first diagnosed with bladder cancer 11 years ago, it blew me away. I didn’t know how to react, because I had never been faced with such a challenge before.
Stage III Bladder Cancer
My doctors at Winthrop University Hospital in Garden City, Long Island, told me that I had stage III bladder cancer, and that it was very aggressive. They said that most likely, the cancer had penetrated the walls of my bladder, and I would have to have the bladder removed by surgery and be replaced with a constructed bladder.
When the surgery was over, however, they gave me great news: the cancer was not as bad as they had thought, and I was able to keep my bladder.
About 2 months after surgery, I began a treatment called Bacillus Calmette-Guérin, or BCG, which is used in some patients with bladder cancer to prevent the cancer from growing and coming back. My doctors believed that the cancer might have moved to other parts of my body, and they wanted to be sure that the BCG treatment would remove any remaining cancer cells in my body.
After I received 6 rounds of BCG therapy, my doctors recommended that I go to Memorial Sloan Kettering Cancer Center in New York City for a maintenance program, which is a standard treatment after BCG therapy to prevent cancer recurrence. So, every 3 months, the doctors at Memorial Sloan Kettering would have me do urine tests, blood tests, and a cystoscopy.
And every time, they found some lesions with cancer, and I would go for a one-day surgery to remove the lesions with the cancer. Once the lesion or lesions were removed, I was clear to go back home.
Cancer Spreading to the Kidneys
This maintenance therapy continued for 5 years, until the doctors found that the cancer had spread to both of my kidneys. They recommended that my 2 kidneys be removed, which would mean I would have to go on dialysis for the rest of my life. I have had family members who were on dialysis, and I can assure you it is not a pleasant road.
For our peace of mind, my wife and I sought second and third opinions. We spent the summer traveling to different cancer centers at several universities, including Cornell University, NYU, Mount Sinai Hospital, and others. Every one of these cancer centers had a different assessment of my situation and a different recommendation.
Finally, the doctors at Winthrop University Hospital, who had successfully treated me before, said that I should only have my left kidney removed and leave the right kidney, which was still functioning at 80% capacity. They removed the left kidney and inserted a tube from my bladder directly into the right kidney. I then underwent 6 more rounds of BCG therapy, hoping to rid my body of any remaining cancer.
Immunotherapy Clinical Trial
Although the BCG therapy worked for a while, the cancer eventually spread again. My doctors at Winthrop University Hospital told me that they had taken me as far as they could, and they recommended that I enroll in a clinical trial with a new immunotherapy being conducted at Mount Sinai Hospital.
Matthew Galsky, MD, a hematologist oncologist specializing in urology, and the lead researcher at Mount Sinai Hospital, said that I was a candidate for treatment with the immunotherapy called Tecentriq (atezolizumab), which was being investigated for the treatment of people with advanced bladder cancer.
Dr. Galsky oversaw the first clinical trial that compared the use of chemotherapy (then the standard treatment) versus immunotherapy for the treatment of people with advanced bladder cancer (also called “urothelial cancer,” the most common type of bladder cancer).
In addition to being a doctor, Dr. Galsky is also my friend, and he has shown me that he cares more than any other doctor I’ve ever had. Since that clinical trial, Tecentriq has been approved by the FDA for the treatment of patients with advanced or metastatic bladder (urothelial) cancer.
In June 2021, I completed my 65th round of immunotherapy. I feel like a million dollars! The immunotherapy is keeping the cancer away, and I have no side effects from the treatment. In addition, receiving treatment with the immunotherapy doesn’t take my whole day away.
Every 28 days, I leave Staten Island and head to New York City for treatment. I have a blood test, followed by 30 minutes of infusion with the immunotherapy, and 30 minutes of observation, but after that, I’m done. Every 3 rounds of treatment, I also have a whole-body PET and CT scans, which they call “eyes to thighs.” And I have a COVID-19 test every time I go for treatment.
I have had such a positive response to the immunotherapy, that a couple of years ago I had the option to stop treatment. Because I am doing so well, however, I worried that if I stopped immunotherapy and things went bad for me, I would be the one to blame. And because I don’t have any side effects, I decided that I had no real reason to stop.
Maintain a Positive Outlook
Aside from the inconvenience of an infusion every 28 days, immunotherapy has barely interrupted my schedule. I am retired now, so I am not that busy. Occasionally, I have an engagement that requires my doctors to move an appointment, but immunotherapy allows me to live my life, without too many sacrifices.
If I can give any advice to people with newly diagnosed cancer, it is to try your best to maintain a positive outlook, and stay strong mentally. You have to say to yourself, “I’m going to beat the cancer. The cancer is not going to beat me.”
Choose the Right Doctor for You
It is also important to choose the right doctor. Just because someone is “the best doctor in the world” doesn’t mean that this doctor is right for you. Every doctor works differently for every patient.
No matter how good your doctor is, you must do your own research to find the best doctor for you. Seek a second and third opinion, and find as many people as you can to support you during this challenging experience.
American Cancer Society
Bladder Cancer Advocacy Network