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.