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Patients Speak: Choosing Focal Therapy

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Mr. David Fitch talks to Prostatepedia about choosing focal therapy for prostate cancer.

Join us to read our November issue on focal therapy.

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What was your life like before prostate cancer?

Mr. David Fitch: I live by myself. I’m 74. I’m retired. Ever since I quit working, I found it is a lot better to interact with my friends. I bicycle and swim. I’m more of a cyclist than a swimmer. I cycle almost every day. I’m probably riding 200 to 300 miles a week. I started doing that initially for the social part of it—all my friends are bicycle folks.

Then I got into the VA Palo Alto swimming pool a few years ago and so I’ve got a lot of VA pals as well. All my exercise basically started as more of a social thing. That’s what was happening before the diagnosis of prostate cancer.

How did you find out that you had prostate cancer?

Mr. Fitch: That was through the VA. The VA in Palo Alto, California, is really good. I’ve been going there for over 10 years. I found out through my endocrinologist. I can’t say enough nice things about her. She has literally saved my life at least twice and this was one of those times. She was looking at my PSA over the years. She said: “It’s gently rising. It doesn’t really rise to the threshold of being something to worry about.” It was around 2.5 for several years before rising to around 3.5 over a period of about four to five years. She said, “Would you like to go talk to the urology department?” I said, “Sure, I’m always happy to talk to people.” She sent me to the head of the urology department. I had no clue about what a urologist did. I went to see the guy, and he did a digital rectal exam (DRE) and said he could feel a lump. My previous DRE was 18 months earlier with my primary care physician and she said everything was fine.

The urologist sent me for an MRI— I had no idea what an MRI was. This started my research: What’s an MRI? With the MRI he said, “It looks to me like there’s something wrong, so I need to do a biopsy.” He told me that the protocol for the VA is a blind biopsy, not using the MRI, just poking 12 holes or so into my prostate and taking samples. Very hit-or-miss. My research indicated that using the MRI fused to a picture of my prostate gave the radiologist a better chance of seeing the suspicious areas to sample, but the VA doesn’t do that. There is a program, Veteran’s Choice, that allows patients to be sent outside the VA if a procedure cannot be performed within the VA. I was sent to Stanford for an MRI-ultrasound fusion biopsy. The Stanford radiologist, Dr. Sonn, found lesions on both sides of my prostate. The right side had more suspicious areas than the left. The pathologist’s report confirmed the presence of intermediate prostate cancer. On the right side were two areas: Gleason 4+3 and 3+4. On the left side, it was Gleason 3+4.

What was your reaction? How did you feel when you found this out?

Mr. Fitch: I was very concerned of course but not distraught. The VA Urology Department did not inform me of the difference between blind biopsy and directed biopsy or of the availability of the Veteran’s Choice Program until I asked. I was now suspicious: What else hadn’t I been told? The only solution was my own research. I went down this rabbit hole trying to answer: What is prostate cancer? What does it mean? What do all these numbers mean? Who can do what, and how do I go about finding out? I joined a support group at the VA Palo Alto, which was worthless. Then I went to two other local support groups, one in Los Gatos, and another at Mountain View—both of them pretty good.

I found out from talking to a lot of guys that doctors generally prescribe their own methods of taking care of this stuff, whether or not it fits. Urologists want to cut and radiologists want to radiate. Then I found an online support group, Inspire.com, a partner of Us TOO. It’s fairly comprehensive. You can get a lot of questions answered, and you can spend literally hundreds or thousands of hours digging through—it’s like trying to take a drink out of a fire hydrant.

I was willing to educate myself. I was looking for people who could help me educate myself to find out what needed to be done. The best way I can characterize this is the problem that I had didn’t seem to me to be life-threatening at the moment. It seemed to me like I had plenty of time to figure out what to do next, but I was going to have to do something.

I didn’t like the fact that the head of the VA Urology Department told me he could only offer me surgery or radiation—nothing else. I thought both of those things were like amputating my arm because I got a scratch. I told him that. I said, “You’re not helping me a whole lot.” I had a 20-minute appointment at most. He just seemed too busy to have any sort of a long conversation. I went in there with all this reference material, a ton of it. I didn’t exactly know where I wanted to go with it, but I wanted to have a conversation with the man. His bedside manner was terrible. He gave me 20 minutes and said, “Okay, well, do whatever you want.” I wasn’t getting anywhere.

At that point, I felt that the VA Urology Department was not very helpful. I began to realize that there is a huge difference in doctors’ expertise as far as prostate cancer was concerned. I realized that I had to take this into my own hands. I had to educate myself in order to be able to go forward: What is a urologist? A radiologist? An oncologist? Do they specialize in prostate cancer?

Later, after my focal laser ablation (FLA) procedure, I met Dr. John Leppert, a VA urologist who has been very helpful and supportive in my quest to understand prostate cancer.

Did you turn to the online groups? Is that where you went first for education?

Mr. Fitch: I started online, yes. I did a lot of reading. I just worked for a long time until I had the answers that I wanted. Additionally, I began to hear the names of certain doctors mentioned over and over again: Dr. Snuffy Myers, Dr. Mark Scholz, Dr. Mark Moyad, Dr. Fabio Almeida, Dr. Dan Sperling, Dr. Pete Carroll, Dr. Joe Busch, and many others.

In many cases, Google was where my investigation began and I watched many YouTube videos. I concluded that many doctors want to cut something out of me or to radiate me, and both those things have serious consequences. I didn’t like either one.

It was about that time that I stumbled onto FLA. It probably had more to do with side effects than it did with whether it worked or not, quite frankly. I found that the biggest side effect from FLA was financial. It would cost me $20,000.

I decided not to buy a new car that year and use the money to take care f my body instead. I’m being a little facetious here. If it didn’t work, I could always do anything I wanted to the second time around. That’s what led me to FLA.

Once you found out about focal therapy as an option, how did you figure out which form of focal therapy was best?

Mr. Fitch: My FLA was done in 2016. There are more types of focal therapies now than in 2015 when I made the decision. Additionally, there are very few doctors who do this particular FLA. I went to Dr. Eric Walser at the University of Texas Medical Branch in Galveston, who I think I found out about on Inspire.com. Initially, I was going to Dr. John Feller at Desert Medical Imaging in Indian Wells, California. He had a clinical trial that I was eligible for, but I changed my mind at the last minute because Dr. Feller’s clinical trial would cost more than Dr. Walser’s commercial practice and would require two trips. And Dr. Feller uses an MRI machine that is 1.5 Tesla. I know it works just fine in the right hands, but it is not a 3.0 Tesla machine.

What was the actual procedure like for you?

Mr. Fitch: The procedure was outpatient. It lasted maybe an hour. I was never knocked out. It was just local anesthetic. I spent a few days in Galveston recovering. They did two overlapping ablations on the right side and one on the left. They took larger margins to preclude missing some hard-to-see cancerous spots. Prior to this time, FLA procedures had recurrence rate in the 10-15% range. Taking a little larger margin around the tumor would reduce the recurrence rate. And in my case, they ablated twice, overlapping, on the right and once on the left side. The tumor on the left side was rather small and hard to see. The two tumors on the right side were fairly close to the urethra, which meant that when my poor old prostate swelled up from the ablation, it closed off the urethra. Without a catheter in place, I wouldn’t have been able to pee.

The only painful part of the procedure was reinsertion of the catheter for the blocked urethra. I ended up staying in Galveston from Monday to Friday waiting for the urethra to open. I was told this problem was not typical and was probably due to the ablation near the urethra.

Any side effects after the treatment?

Mr. Fitch: My ejaculations are dry. I’m told that’s pretty typical. I’m 74 years old and not having kids is really not a problem for me. Otherwise, there don’t seem to be any aftereffects.

How are you monitoring now for potential recurrence after treatment?

Mr. Fitch: Active surveillance. The protocol is to have a PSA test every three months and an MRI at six months and 12 months. If everything is clean at the end of 12 months, then maybe an MRI once a year. It varies a little bit after that. The PSAs typically go on at three-month intervals. They’re just part of my normal blood work that I have done at the VA.

To put the PSA in perspective, before the FLA, it was about 3.5. Three months after FLA, it dropped to 2.3. Then at six months, it dropped to 0.25. I was so surprised by that number that I had it confirmed with a second test a few days later. It was 0.28.

At nine months, it jumped back to 0.55. That could have been partly due to riding my bike a lot. That does have an impact on PSA. At one year post-FLA, it is 0.43. I’ve had a one-year MRI as well which shows some scarring but no other problems.

Do you have any advice for men who are in a similar situation?

Mr. Fitch: I would do it again for intermediate prostate cancer (i.e., Gleason 7) which has not metastasized. It’s expensive, not covered by insurance, and I had to travel, but it was well worth it. No pain, no leaking, and sex works. If the cancer reappears in the gland it can be re-ablated or any other procedure used. There are many available therapies for organ-contained prostate cancer that has not metastasized: cryotherapy, CyberKnife, MR-guided focused ultrasound, NanoKnife, proton beam, photodynamic therapy with TOOKAD, stereotactic body radiation therapy (SBRT), brachytherapy (seeds), and more. Technological improvements are happening quickly. I suspect we’re headed down the road of some new, permanent therapies that will eradicate prostate cancer forever. Immunotherapy comes to mind. Until then, FLA seems like a good interim measure.

Any other thoughts for other men struggling with prostate cancer?

Mr. Fitch: Listen to the doctors. If you like what they say, and if you want to follow their advice, that’s fine. If you think there might be something else out there that works better, at least take a look at other options and see how they stack up against what you’re being told. Prostate cancer probably hasn’t changed a heck of a lot in a long time, but the ways that we approach it are changing rapidly. Active surveillance for low-risk cancer (Gleason 6) is increasing dramatically, and scanning techniques make this possible. If it weren’t for the new technologies in scanning, we wouldn’t be doing focal anything. Scanning helps find the tumors. I was a fighter pilot. If somebody was shooting at me, I could combat that by seeing the threat and defeating it. The same goes here. If you can see it, you can probably defeat it.

There are a lot of scanning techniques including MRI. PET/CT scanning techniques use different imaging agents (injected during the scan) and can help to see both inside and outside the prostate. These agents include C 11-acetate, PSMA, Axumin (fluciclovine F 18), and many others. It’s worthwhile investigating those to make sure that a guy knows exactly what he’s got and exactly what he has to deal with before he goes down any road. He’s got lots of time, especially if it’s low or intermediate risk. Take the time to educate yourself, to understand what needs to be done.

The last point I’d make is to attend the Prostate Cancer Research Institute (PCRI) conferences in the fall. It’s designed for patients, given by world class doctors, lasts three days for $50 or so. The education is remarkable.

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Author: Prostatepedia

Conversations about prostate cancer.

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