Anita’s Story: “We have to be our own advocates and live life as bravely and as fully as we can.”

It started with a seemingly innocent symptom: blood in her urine. Initially dismissed as a urinary tract infection by her general practitioner, Anita sought a second opinion in December 2019. By January 2020, the reappearance of blood in her urine prompted an urgent referral to a urologist which led to a turning point in her journey when a cystoscopy revealed a sizable tumor. With a background in animal healthcare, she was familiar with such sights, yet this one, nestled within her, signaling the start of an unexpected journey. Here is Anita’s story:

My first symptom of bladder cancer was blood in my urine. I thought, “Okay, I am having a urinary tract infection.” I didn’t feel anything, but there was blood. I went to my general practitioner after discovering the blood and she had me urinate in a cup. She didn’t see blood, and so she said, “No, you’re fine.”

From there, I changed doctors and went to see a new one. That was December of 2019. On the day of my appointment with my new doctor, which was at the beginning of January 2020, I had blood in my urine once again. She looked at it and said, “We’re sending you right over to the urologist.” 

A few days later on January 9th, I went to the urologist; he performed a cystoscopy and saw a huge tumor. My background is in animal healthcare, so I’ve worked with small animals and large animals. Seeing tumors and knowing what they are doesn’t necessarily freak me out. It was like, “Oh, well, that’s something special growing inside of me.”

And so, I was scheduled for a TURBT within two weeks. By the time I saw the urologist, it was scheduled for February 6, so it was pretty quick.

The doctor performed the biopsy, and my tumor came back high grade, and he was concerned that it was muscle invasive

I’m usually one of those people who can take in any information, but this was different. I thought, “What do I do about this?” The only option was to move forward. The doctor suggested bladder removal and referred me to UCSF. When I was sent over to UCSF, I spoke to a doctor there who wasn’t convinced that losing my bladder was necessary at that point and wanted to do another biopsy. We talked about the other options for bladder preservation

During the next TURBT, it came up negative but they did infuse a chemotherapy drug. There were no cancer cells, and a third TURBT was done with blue light, and nothing showed up. I didn’t have any straggling cancer cells hanging around that could be found.

Then it was put to a tumor board about what I should be on next and there was some concern about the cancer being muscle invasive, and this is where I failed. I should have said, “No, I want something more.” They put me on BCG treatments. 

I should have pushed, and I didn’t. That was my failing. I want patients to question authority, and you don’t question it rudely, but you say, “Are there better options? Are there other options? What else can we do?”

I did the BCG treatments and was at the end of my six-month break, getting ready to start the next series in June of 2021. Then, there was one weekend when I had a lot of blood in my urine.

I went to urgent care the following Monday. I knew they could get that information over to the urologist, UCSF, or whoever needed it so we could make a plan right away. 

They discovered that the tumor was back, and so the plan was for me to have my bladder removed. They did a PET scan and discovered that I had nodules in my lungs, and I said, “So I guess I’m not getting the bladder removal surgery.” 

 I did three rounds of chemotherapy with Cisplatin and Gemcitabine, and they did another scan. The cancer was still growing. Then I went on Enfortumab Vedotin, and that worked for about a month. My side effects with the Enfortumab Vedotin were kidney stones that were the size of a pencil head. It was like passing razor blades. Again, I had dark blood in my urine. The doctors took a culture and when it came back, it contained bacteria, and not a good one. I was put on antibiotics. 

My next scan showed that the tumors that were shrinking were now growing again. Then it became, “Okay, what do we do next?” Genetic testing was done to find out if taking Keytruda would work and I began it in April of 2021. 

When I was not responding to the Enfortumab vedotin, I looked up clinical trials. I found two clinical trials that I possibly could qualify for, one at the Mayo Clinic in Jacksonville, Florida, and the other in Pensacola at the Woodlands. I flew to Jacksonville, and it didn’t feel like the right fit so I drove to Pensacola to the Woodlands Medical Specialists. Within five minutes of sitting with Dr. Owera, as he looked at my chart, had endless questions as to why things were done a certain way previously. 

Going back to California, I had some decisions to make. I had been looking at many options available, and I had been in touch with the Hyperthermia Cancer Institute in Santa Monica. They thought that they could help me quite a bit with the enhancement of the Keytruda with hyperthermia. My new oncologist next door at St. John’s was also amazing. He was another one who said, “If these stop working, we have many things available to you. Don’t worry.”

I sold my ranch in Northern California, bought a travel trailer, moved my three cats and my dog down to Southern California along with three of my horses, and lived in my travel trailer. I had lived in Southern California in the past, so I knew where I was. I just camped out there for three months. 

I had radiation treatments for 30 days and my hyperthermia treatments lasted 60 days. That was July and August of 2021 and through half of September. 

I completed the hyperthermia treatments at the Hyperthermia Cancer Institute in Santa Monica. I truly believe the hyperthermia treatments enhanced the Keytruda treatments. 

Soon after radiation and the hyperthermia treatments ended, I was on my way to moving to Florida. I started seeing Dr. Owera immediately.

One of the things that the hyperthermia and the radiation did was create a fistula (hole) in my bladder. It felt like I was sitting on water balloons every time I stood up. I was flooding. I was referred to a surgical urologist to have a repair done on my bladder. I had the surgery but my bladder was too damaged and the repair was not successful. 

My bladder had to be removed. It was “quality of life” is how they put it, and I agreed, because every time I stood up, urine would pour out. I had my radical cystectomy at UAB Birmingham, Alabama on August 3, 2023.

I am currently still receiving Keytruda maintenance therapy every six weeks and am handling it pretty well. 

Dr. Owera has been a huge positive support throughout all of this and has done so without holding back information and always has the next step or two in his mind for things. I think that is something everybody needs to find. 

It’s important to make sure that you have the best insurance that you can afford. Even if it is scraping by on other things, make sure that you are well covered. I’m on Medicare now, and again, thank God that all this started when I began with Medicare, but my insurance with Blue Shield of California is amazing. Even before I transitioned to Medicare, when I had called Blue Shield to find out why some of the doctor’s requests for coverage did not come back that it was okayed, she said they never received anything. The woman I spoke with said, “Hold on a moment.” She took over, called the hospital, and got the ball rolling. She contacted all the doctors, and by the end of the day, I had the approval for all the testing and everything that they wanted to do.

Looking back, when bladder removal surgery was first offered, I should have pushed for it. If I had, I could have avoided being in this position right now. I did let the doctors at UCSF know that they could have offered more options than the BCG, but hopefully, for the next patient, things will be done differently. 

I work with animals and I know life is short. None of us are promised tomorrow.  We have to be our own advocates and live life as bravely and as fully as we can.

I just feel blessed every day, and I feel blessed that God has given me the people around me.