My Journey So Far
In July 2014 I had lumbar fusion surgery and little did I know that in approximately 90 days I would be diagnosed with bladder cancer.
My bladder cancer journey
September 2014: Hematuria
As I was preparing to go to bed I went to the restroom. As I looked into the toilet the water was bright red. It was a Sunday evening and even though I had kidney stones at 11 years old, I did not think that they had returned. I had no pain or any other symptoms; just blood in my urine.
When I go to work the next morning I called to see if I could see my primary physician and was told to come in that afternoon. As my doctor and I talked he said he wanted to get me into the Urologist quickly. You see, my PCP had a dad who had been diagnosed with bladder cancer and he immediately wanted to make sure I was diagnosed properly.
October 2014: Exams, scans, plans
Exams, questions about my history (not a smoker, 54 years old at the time, never worked around chemicals, no family history, X-rays, CT scan. Then they scheduled the “gold standard” cystoscope.
It was October 28, 2014, when I had the scope. My doctor was talking through it and mentioned some concerns and then said “I need to biopsy this… no I need to get you into surgery on Friday, you have cancer.” He apologized for being so upfront and blunt and I appreciate that aspect of our 8.5-year relationship. Be honest, don’t placate me. We scheduled surgery and on Friday, October 31 I had my first TURBT. Diagnosis T1 HG CIS. At the next appointment, he went over the treatment plan of BCG.
March 2017: BCG
I was having my 18th instillation of BCG which resulted in pain, severe blood in urine, and other symptoms that made me realize that I could not continue the treatments. At the next cystoscope, the Urologist made me aware that my bladder was in rough shape. Highly inflamed and we would discontinue treatments for the next few months. Nine months later at a subsequent cystoscope and cytology, it was discovered that my cancer was back. Time for another TURBT. As time passed, it was evident that I was refractory to BCG so we started looking for other treatment options.
Several TURBTs later with chemo introduced into the bladder afterward, Keytruda had been approved for NMIBC and my Urologist suggested I talk to the Oncologist and potentially try this avenue. By this time my CIS had recurred either 4 or 5 times; I lost track. My wife and I visited the Oncologist and it was decided to try this treatment and insurance approved six infusions. After the first infusion, I did not feel good. However, I decided to continue until I got to number five and I called it quits. I cannot describe what I felt, but something seemed off in my body. Those treatments were from September thru December 2020.
I was working my retirement job and was feeling more tired than normal. Plenty of sleep but naps a lunch, after work and feeling constantly worn out. As the summer progressed I decided to leave that job. As a retirement job, I was suddenly still working more than I wanted to in retirement. I was also getting to the point that I was not functioning well and I attributed it to the longer hours and just getting older.
As the following months went by I was getting weaker and weaker and losing weight without trying. I was close to passing out when I attempted to shower each day or was on my feet very long. My urologist could not pinpoint what was causing these issues nor my personal physician. Tests after tests, PET scan, CT scan, X-rays, and more blood tests.
Finally, after passing out twice for over 5 minutes and losing 50 pounds, one test revealed that I needed to see an endocrinologist. Appointments were made and after sitting in the waiting room leaning over on my wife, the doctor called us back and let me know that my Thyroid was not working properly and my adrenal glands were not producing cortisol. Proper medication is a beautiful thing.
Now, I have gained back some of the weight and strength and the doctor explained that with some people (nice to be rare) immunotherapy can cause the body's glands to react adversely, such is my case. After regaining some strength and meeting with my Urologist we decided to turn to Gemcitabine for the next rounds of intravesical therapy.
My journey and moving forward
I went through 15 rounds of Gemcitabine and my bladder was highly inflamed, friable, and just a mess. We jointly decided to hold further treatments and maintain close observation through cystoscopes, CT scans, and cytology. So far I am NED and still have my bladder. To some, this may seem strange to have a desire to spare the bladder as long as possible. To me, it is my desire to retain my bladder as long as I can.
All in all, I am doing well and enjoying retirement. I do know that the next recurrence will bring about a decision regarding the next steps. For me, I have chosen an RC with an ileal conduit.
Everyone has a different story or journey and I wanted to share mine. Maybe you find this informative or solace during your fight. Just remember, bladder cancer is a fight we are all in together and the sharing of our journeys is key for those just starting or wondering what is next for them.
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