You really do not understand what it is like to have cancer until it happens to you. On one level, you are confronted with your own mortality. That is one of the first things that comes to mind when the doctor tells you that you have cancer, and it is reinforced when you look up on the internet 5-year survival rates for your cancer. But at another level, being told that you have cancer is an instant immersion into our healthcare system and the day-to-day challenges of navigating the world of doctors, hospitals, and out-patient treatment programs. It means having to figure out the routine for daily radiation and periodic chemotherapy, deciding when and how to tell friends and family, and building relationships with your doctors, medical teams, and insurers.
I am fortunate to now be considered a “cancer survivor.” With the exception of a recurrence scare a year ago, the periodic MRIs and CT scans of my chest, torso, and abdomen now come back clear: no cancer. This is consistent with the pathology report on my bladder when it was taken out almost 3 years ago, as well as biopsies of my prostate, urethra, and lymph nodes that were taken during that surgery. I spent 20 months in cancer treatment, which included 5 surgeries, radiation, chemotherapy, participation in a clinical trial, two 5-day hospitalizations, and more than my share of side effects and complications. For me, this is what it really was like to have cancer.
Much of my cancer journey was surreal—I was there in person but somehow in my mind it was happening to someone else. I did not expect to respond this way, but it is hard to anticipate what it feels like to hear a doctor say, “You have cancer.” Or to walk into a building with a large sign in front, Washington Cancer Institute. Or to arrange your schedule for daily radiation, be hooked up to an IV for a chemotherapy infusion, or wheeled into an operating room for surgery to remove tumors in your bladder. Perhaps the surreal nature of the experience is why I did not feel the expected sense of elation when I was initially told the treatments had worked, “You are now cancer-free.”
It all started when my new primary care doctor told me that there were “a few extra red blood cells” in the urine sample I had provided and directed me to see a urologist.
It all started so innocuously in mid-September, 2021, when my new primary care doctor told me that there were “a few extra red blood cells” in the urine sample I had provided for my annual physical and directed me to see a urologist to check it out. Having had other issues that involved urologists and knowing what they often do to patients, I decided to negotiate. “Why don’t we wait and test again in 3 to 6 months. Maybe this will go away.” To his credit, the doctor held his ground. “You really need to get this checked out. It is probably nothing, maybe kidney stones or a urinary tract infection…but you shouldn’t wait.”
Getting an appointment to see a urologist turns out not to be easy. The first appointment with my regular urologist was in 6 weeks, but I could see his physician assistant in a month. I was glad I took the earlier appointment when a week later I started to see blood in my urine. It was enough to cause me to email my primary care doctor and ask if I should push for an earlier appointment. He told me it would be OK to wait, and then shared a thought that never occurred to me, “Perhaps the world needs more urologists.”
The appointment with the urologist’s physician assistant lasted 5 minutes. Once she heard that I was seeing blood in my urine, she handed me a cup to provide a urine sample (which this time would be tested for the presence of cancer cells) and an order to get a CT scan of my abdomen and chest. At the time, I thought the purpose of the CT scan was to look for kidney stones, which I had 3 years earlier and which could explain the presence of blood in the urine. I later learned the scan was looking for signs of cancer that may have metastasized to other places in my body.
“You Have Cancer”
The doctor called the next day with the test results: “You have cancer.” He reported that cancer cells were found in the urine sample and the scans showed an abnormal thickening of the wall on the right side of my bladder—and no kidney stones. The next step would be more CT scans, this time with contrast, and a cystoscopy exam, a scope procedure to look inside my bladder. I was not surprised. I had already spent a few hours on the internet researching the possible causes of blood in the urine and concluded I most likely had bladder cancer. I was not terrified because I read that most cases of bladder cancers are diagnosed at stage I, occurring in the interior lining of the bladder. According to the internet, stage I bladder cancer is treated relatively easily with good outcomes: a 96% 5-year survival rate if the cancer has not spread into the muscle underneath the bladder lining.
The cystoscopy confirmed the diagnosis. The “small” tumor looked exactly like the pictures on the internet. I left the office with a few snapshots and instructions to contact the doctor’s office to schedule a time for tumor removal surgery. I asked if I could play tennis in the interim and was told no. “You have a bleeding tumor…take it easy.” An early sign that things were going to change.
My wife, Laura, and I shared the news with our 2 adult children and a few people who would be impacted by my restricted activity. I told a group of tennis partners that I would be out of action for a few weeks. With them, I presented the most positive scenario, which focused on the statistical likelihood that my cancer would be stage I and, if it was, I probably would be getting weekly treatments for 6 to 8 weeks that would not necessarily keep me off the courts. I decided to hold off sharing the news more broadly until we knew more.
The surgery took place on November 11, 2021, at Suburban Hospital in Bethesda, Maryland, a relatively short walk from our house. It was preceded by a pre-op physical and another round of CT exams. I remember waking up in the recovery room, confused and in relatively little discomfort other than from the catheter that routed my now red urine into a bag. Laura took me home late that evening and to the doctor’s office the next morning where the catheter could be removed. That evening my tennis friends sent a wonderful dinner to our house that carried us through the next few days. I can’t describe how much we appreciated their thoughtfulness and kindness, which I hope to remember when friends and family face similar challenges in the future.
The wait for the biopsy results took a few days, during which I regularly checked the hospital’s patient portal and wondered whether it was good or bad that I might see the results before I heard them directly from my doctor. As it happened, I got the results first, and they were not what we were hoping for—“in situ and invasive high-grade urothelial carcinoma. Tumor invades the muscularis propria.” In other words, this was an aggressive cancer that had reached stage II, having grown through the bladder lining and into the surrounding muscle. The optimistic scenario of a stage I cancer with its quick and likely tolerable treatment protocol was no longer on the table. I called the doctor to let him know that I had seen the results and wanted to talk as soon as possible.
“You Are Going To Lose Your Bladder”
The call with my regular urologist who had done the surgery was short and to the point. It was beyond the scope of his practice to treat patients with stage II cancers, so he was referring me to a urologic oncologist at Washington Hospital Center. I already knew from the internet that stage II bladder cancer presented much more significant challenges and had a much lower 5-year survival rate than stage I. Because the cancer is embedded in the muscle rather than on the surface of the bladder lining, the treatment protocol is completely different. I may never forget the doctor’s next comment, “You are going to lose your bladder.”
The decision on physician and medical facility is perhaps the most significant opportunity for a patient with a serious disease to have any control over his or her care.
The decision on physician and medical facility is perhaps the most significant opportunity for a patient with a serious disease to have any meaningful control over his or her care. I grew up in a household that believed all physicians are not equal and when confronted with a serious health issue you find the best. With that in mind, Laura and I reached out through contacts to the head of urologic oncology at the National Institutes of Health. His endorsement of the team at Washington Hospital Center could not have been more positive, and he gave me questions to ask at our initial consult. What a relief to be able to start the next phase of my treatment knowing that I would be getting the best care available in the Washington, DC, area.
The Washington Cancer Institute
That Friday, Laura and I parked the car in the Washington Hospital Center garage and headed across the street to the building marked Washington Cancer Institute. Neither of us felt quite prepared for what was to come. The appointment lasted over an hour as the doctor outlined in some detail the 2 primary options for the treatment of stage II bladder cancer. One option was to remove my bladder, a cystectomy, and replace it with an “ileal conduit” that would divert urine from the kidneys to an external bag or an internal “neobladder” that would be configured from a piece of my large intestine and serve essentially the same function as a regular bladder. He explained that although a cystectomy is major surgery and requires someone to live the rest of their life with an alternative urinary system, this option is attractive to some patients because it immediately removes the cancer. From the perspective of those patients, “I want the cancer to be gone.”
The other option was the “bladder-saving” approach, a 3-part treatment plan that would start with another surgery to remove all cancerous tissue in my bladder followed by radiation and chemotherapy. He noted that about 10% to 15% of patients who opt for this approach ultimately have their bladder removed, either because the treatments do not get rid of the cancer or patients “wind up with a bladder they do not want.” If I chose the bladder-saving option, I might also be eligible for a clinical trial that would add a 1-year series of infusions of the immunologic drug Keytruda (pembrolizumab). The drug, which has a market price of $12,000 per dose, has been approved by the FDA for treatment of stage III and IV bladder cancer but not yet for stage II.
This first appointment was, however, not the time for a decision. The urologic oncologist, who was the lead for my treatment, first had to determine whether the bladder-saving protocol was even an option for me. This would involve a few more scans and an opportunity for him to look inside my bladder, a cystoscopy procedure. He also wanted us to meet with the other 2 members of his team should I chose the bladder-saving approach: a radiation oncologist who would manage the radiation treatments, and a hematology oncologist who would oversee the chemotherapy and, if I chose to participate in the clinical trial, the Keytruda infusions.
I was terrified going into my second appointment that I would be told my cancer had progressed to a point where the bladder-saving approach was no longer an option. That did not happen. Although I had a “large” tumor and there was significant thickening of the right bladder wall, the bladder-saving approach was still an option. The doctor then shared a medical article that laid out 5-year survival rates for different types of stage II bladder cancers correlated to the different treatment options. The survival rates for the bladder-saving approach compared favorably with those for bladder removal, and we discussed how participation in the clinical trial could improve 5-year survival rates even more. I remember an overwhelming sense of relief and emotion as the appointment drew to a close. It was the first time since it all started that something went right. I had options.
I contacted my cousin, an anesthesiologist at the Cleveland Clinic, to talk through the options before making a final decision. His advice was helpful, “Make your first shot your best shot.” With that in mind, I opted for the bladder-saving treatment protocol and, assuming I was approved, participation in the clinical trial. The decision was made official the following day when I was put on the surgical calendar.
Waiting for test results and doctor appointments is scary and one of the great frustrations of being a cancer patient. I didn’t think family and friends need to share in the waiting and uncertainty. It was time to tell my sisters and extended family I had cancer now that I could also tell them about my treatment plan and prospects for a full recovery.
Look for Part II of David’s story coming soon, where he takes us inside his treatment journey and experience with a clinical trial.
