Salvage

I’ve really had nothing to add to this blog until I was shocked by a rising PSA in January of 2017. I had decided that I needed a regular doc not only to establish a doctor-patient relationship but to possibly treat onset of diabetes. As all diagnosis go a series of blood test was discussed for diabetes. As an afterthought, I casually asked her to add a PSA test.

UCHealth (University of Colorado) is really good at providing the information on their patient dashboard in real time but at the same time as the doctors get the info. That evening I got my first notice that new results were in. The first to come in were some of the blood sugar which confirmed diabetes. Then PSA showed up. My world stopped.

In a nanosecond, I went from PCa is not important to the key focus of my existence. Nine years of low PSA numbers had really softened my interest in keeping up with my knowledge of this disease. My main interest was high blood sugar not PCa. In that nanosecond my focused flipped and all the evaporating memories of what I knew came flooding back.

The second time around is different. I’m now in a rarefied atmosphere of very few patients. Information or options and consequently advice is much more limited. Where the first go around there were all sorts of treatment options to now it is limited, less optimistic. All choices  are fraught with consequences which appear to be unavoidable and not good. You look for words like cure but you find more words like abatement or words like maintenance or reduce the size…

What I learned the first time is that help only comes to you when you shake the trees. Friends and family are great resources but you must let them know. It took me a few weeks to wrap my head around this new threat. As the news spread we started getting advice some useless to one that was a surprise from our friend Mike at UCLA.

In Germany, three to four years ago, they developed PSMA Pet/CT scan. What it does I’ll quote from the UCLA brochure.

“PSMA-PET imaging test works by marking an antigen receptor that sits on the surface of every prostate-cancer cell, called PSMA, with a radioactive peptide, Gallium-68. is process allows the cancer cells to be detected wherever they are located, including outside of the pelvic region.”

Since this is not yet approved by the FDA and still in trials it’s not a generally available diagnostic tool. In Germany, they are treating patients with advanced prostate cancer with a similar technology but instead of Gallium-68 they use another isotope to deliver a killing dose to the cancer cell. Although this treatment shows promise there is an element of risk or concern since it is not used for early reoccurring cancers like mine. Only on much more advanced. There must be a high level of risk.

I went through the PSMA Pet/cat scan which was easy except they could not use contrast which would have been a bit better. My creatinine levels were too high and the docs were concerned with kidney damage. No contrast was used. Within a few minutes of the test the docs had evaluated the results with good news and bad. The bad they confirmed the PSA numbers indication of PCa. The good-the cancer was confined to the prostate.

Now its late March. I just had the PSMA Pet/CT scan. I now know I just entered the ring again to face a fight with PCa. What the hell was I going to do?

I kept thinking if radiation worked for nine years and was so benign why not do it again. I call Loma Linda up and see what they could do. They flat out say I can’t do radiation again. I don’t understand why. I ask my urologist and she agrees but adds it will cause morbidity. I accept that but don’t yet understand. After more reading and meeting other urologist I finally understand. Radiation effect on the body is cumulative. The more radiation you’re exposed to the greater the potential for other cancers, like leukemia, to emerge. Any of the radiation treatment are a close balance of just being strong enough to kill the cancer being treated but not strong enough to create a secondary cancer.

By mid-April I’ve eliminated two basic treatments the German treatment because I’m not severe enough and any form of radiation as being too risky. What’s left – Cryo, HiFu, Hormones, or surgery.

Before I go into the next steps let me tell you I feel no effects of this cancer growing inside of me. The exception is that I’m getting up at nights more frequently-every three to four hours. Other than that, all is good except for diabetes. I’ve lost weight which I attribute to the drugs for diabetes. In the back of my mind I’m not 100% sure.

By now it’s the end of April. I know I must get serious about what to do. I look at the options and I know from research years ago not one of the solutions is without great consequences but each would let me live. I know some are more difficult for the docs but I only care about the outcome and resulting quality of life. My number one fear is incontinence. I saw my mother-in-law go into full incontinence. Not one piece of furniture she ever sat in stayed dry. Although I can live without sex I would sorely miss it. I’d like to avoid that. There are all sorts of secondary complications from fistulas, scar tissue that causes pain or it keeps you from emptying the bladder to others I can’t even imagine.

Cryo is almost guaranteed impotence.

HiFu has promise but impotence and scaring are high percentages

Surgery will require more surgery to fix incontinence – that is out.

Hormones is not a cure but abatement with side effects of menopause and makes diabetes worse.

I just don’t like any of the options.

Connye, my wife, and her dad leave for a six-week trip to spend two weeks in Europe to study the end of World War II by visiting Germany and Poland. These two are really historians and love the history of the WWII. This gives me two weeks before I go on a two-week trip to Hawaii.

I go into denial. I go on a remodel blitz of the house that keeps busy building, fixing, and painting from the time I wake up till the time I have to make dinner and bed. Then I go to Hawaii.

Hawaii is fun but there is a dark cloud that keeps it from being what it could be. I think of two things remodel and that I need to find a solution. No solution congeals from all that thinking.

Back in Colorado I finally get serious. I get from my urologist, Dr. Ripoll, for best name in Cryo, Dr. Duke Bahn out of Ventura, CA. I also get the best name for HiFu, George Suarez from Miami.

At this point I’m leaning to cryo even though it’s a 100% chance of impotence.

Once you’re out there looking information starts to come in almost on its own. I start to find out more about HiFu and there are subtle hints of promises of being kinder. I talk to an oncologist from Baptist hospital his recommendations are cryo or surgery in that order. As we talk further he call HiFu as a potential kinder solution. I meet with my urologist. She is adamant not to go with surgery, which she almost calls butchery. Her recommendation was to use cryo or HiFu. Her initial preference was Cryo for the simple reason since radiation is hot an opposite treatment was cold – Cryo.

I’m seduced by the promise of not being impotent with HiFu. I do realize the outcome is still higher levels of impotence but the likely hood of incontinence is low. As of June 20, 2017, I make the arrangements to be treated with HiFu on July 12.

I wish I was more confident. I truly expect to go through a recovery period of a few weeks until the Supra pubic catheter is removed. It’s a catheter that is inserted in the belly just above the pubic bone right into the bladder. That concerns me little. However, realizing I’m out for almost two hours and have to take a host of pills to keep infection at bay, to manage bladder irritation, to kick start erections, Flomax to make you pee. I realize this is not as simple as 9 weeks of proton radiation.