Cal
Jones and partner Bonnie live in Redlands, California. He was diagnosed in February
2000 at the age of 59 with a PSA of 9.6, Gleason 3+3, staging: T1c. Treatment
selected: Proton Beam Radiation. He continues... When
I was diagnosed, it hit me like "a ton of bricks" (someone else's expression,
but one I fully identify with). Since then I have been attending a local support
group, weekly meetings... listening to others similarly diagnosed and worried,
etc. My wife and my son attended a few of those early meetings with me, but I
have continued... and still attend regularly.
I
went to Loma Linda University Medical Center because it is a "teaching hospital"
and I have always had good luck around a teaching atmosphere... students have
to be so careful and analyze things well.... professors are mentors and often
well-known authorities, write the books, etc. And when I ask questions, doctors
and students, and nurses, and techs, and whoever... they all try hard to answer
fully.
I
did not know when I began trying to learn about what to do about PCa that the
journey would truly become a long trip and one I was going to have to travel while
making all the decisions myself. I initially thought that doctors and other experts
would be able to guide me... a few consultations and I would be happily upon my
way. No, that is not what PCa is all about. So, since I wasn't satisfied with
the initial answers and explanations I was getting, I got on the internet... and
for several months I spent 2-4 hours daily reading and asking questions, etc.
Meanwhile,
my uro had immediately put me on Zoladex, and I was assured with my numbers that
the Zoladex would hold the PCa at bay for a few months while I took the time to
learn and consult with other patients and different experts. I consulted with
another uro, with a seed expert, and on the internet studied the pro's and con's
of cryo and hormones and IMRT, and WW. Proton became my choice primarily because
it is the "high tech" solution... and according to studies the adverse side effects
are fewer and less intense than predicted statistically for other treatment choices.
I
am of the opinion now that other choices, if carried out by a truly recognized
artist with a clear and known track record of success, can be just as satisfactory
as proton beam therapy. Those experts are few and far between, however. Nonetheless,
I also discovered that LLUMC is not only unique for treating PCa with proton beam
radiation so effectively and efficiently, but it is also very unusual in how all
personnel are dedicated to "making man whole" ... treating the medical, emotional,
and spiritual aspects all together. A very unusual hospital setting as far as
I have ever known... people really are nice, informative, comforting, assuring,
...from the docs to the nurses, the techs, social workers... everyone.
I
completed my treatment August 2000, and since then have continued learning and
talking to PCa survivors. Proton Beam Radiation Therapy is entirely non-invasive
and essentially there are no side effects at all. Some men, especially those who
come to treatment with symptoms, have aggravation of such symptoms. Almost everyone
does experience an increase in urgency and more frequent urges to urinate somewhere
along in the treatment schedule... some say they also feel more tired than usual,
but my theory is that fatique is due mostly to just being bored... tired to the
stress in coming to a treatment decision, etc.
I
had only proton treatment, but frequently men opt to have some 3D-CRT photon therapy
in combination with the proton... this is usually because their prostate is considerably
enlarged or their numbers are greater (PSA over 10, GS 7+) Those that do have
some "regular radiation" do complain more of the effects of feeling tired, and
more frequently mention some irritation to the bowel... but all I have heard talk
about this have reported these effects relatively minor and shortlived.
I
have heard that around six months post treatment that some men experience some
bleeding in the bowel... generally minor and it does go away. Needs to be checked
by a doctor, however, to be sure it is nothing else, etc. I have not noticed anything
like this myself, alto my stool is sometimes a little loose... I figure from the
Zoladex, because I have had so much trouble shaking the effects of the Zoladex
generally, but I really do not know. No severe problem for sure.
I
have also heard that somewhere around 18-24 months post treatment, that there
sometimes is another bount with blood in the stool... and with some men it can
be chronic... and with others it too goes away after a while. These types of stories
have been very rare. Much more common to men who chose RP, Seeds, EBRT, etc.,
but very, very rare and less intense or severe among men I have heard about who
chose PBRT.
My
PSA in December 2000 was 0.64. It is predicted that somewhere post treatment about
18-24 months the PSA will reach its nadir... and if it doesn't significantly rise
after that, then my situation will be deemed a "cure"... generally I am scheduled
to have PSA tests every six months for two years... and "we will see". Meanwhile,
the effects of the Zoladex are fading, but some effects still lingering.
Here
are my numbers PCD--» Cal Jones, 1985 Vasectomy age 45; Diagnosed with Prostate
Cancer at age 59. March '99 PSA 6.7, October '99 PSA 9.7, January 2000 Biopsy,
Gleason 3+3 [2nd pathology, Bostwich Gleason 3+3]; Staging T1c;
January
2000 Bone Scan & CAT Scan Negative; February 2000 began Zoladex 3.6 mg. Monthly;
March 2000 Zoladex; April 2000 Zoladex.... ; May 2000 PSA 0.23 (Zoladex discontinued);May
2000 MRI (see below); June 2000 Zoladex resumed; Proton Beam Radiation Therapy
completed August 2000;December 2000 PSA 0.64.
Algorithms:
PP:67,30, 2,1; NP: 81,17,3,3; BP: NN; D'Amico level 1: 70% OCD(organ confined
disease); Lerner: 84% 5 YFFR after an RP that looks organ confined but if DNA
is aneuploid, this drops to 70%. PP: Partin; NP: Narayan; BP: Bluestein 5/00 MRI
w/spectroscopy: gland 16.5cc (PSA density not calculated)... no evidence of seminal
vesicle invasion, lymphadenopathy, or bony metastases... extensive disease bilaterally
from the base to apex... dominant abnormality in the left base to mid gland...
subtle irregularity in the left mid gland is suspicious for early extracapsular
extension. Stage T-2-C/T-3-A.
Three
weeks after being on Zoladex, suddenly felt the loss of libido, impotence, lots
of "hot flashes"... and gradually several other side effects... weight gain, slight
superficial rash, chronic upper respiratory infection, occasional nausea.
I
have been off Zoladex for 8 months now... libido and potency returned slowly around
5-6 months after ceasing Zolodex, but other side effects although lessening too,
are still being felt.
[10 February 2001] Current Age 60. Current PSA 0.49. Current Treatment is that
I am doing nothing. I have been attending a support group meeting weekly ever
since I was diagnosed... listened to lots of stories of men diagnosed with Prostate
Cancer.
[2 February 2002] I am Cal Jones, bronze mentor, Proton Beam Radiation: latest
PSA is 0.12... "still going in the right direction, down" This is the 17th month
post-treatment point in my journey. The Zoladex effect has finally worn off...
I do feel much better and suddenly lost the weight I had gained. Meanwhile, I
do have had some minor rectal bleeding... for the past three months, but it is
even much less now and seems to be going away... only notice a little every 3-4
days. Doc says it may take a year+ to go away entirely.
Around
18 months post-treatment (post proton and also post Zoladex), suddenly I felt
a lot better... more energy generally. Also, the weight I had gained due to the
Zoladex just fell off. I am still overweight by about 40 pounds... where I was
when first diagnosed in February 2000.
Meanwhile, the proctitis disappeared. I had a colonoscopy in connection with a
normal physical and the doc remarked that there was evidence of increased vascularization
in the area where the radiation damage had been (which is normal for tissue that
repairs itself after radiation), but everything else looked fine... no polyps,
no colon cancer, etc. Doc advised that the portion of the intestine that was irradiated
would likely always be more vulnerable to irritation, but baring some severe problem,
I probably would not notice anything... and I haven't seen any blood ever since.
That
has been a while now... I finished treatment over three years ago, and kept attending
a support group meeting weekly for two years more. When attending, I talked to
hundreds of other patients... newbies and vets alike. I also took lots of notes
and published a weekly "news" update of the meetings, the discussions, etc. It
was entertaining for all as well as therapeutic for me... I recommend the practice,
along with exercise both mental and physical. I am no longer attending the weekly
support group...but I have been staying connected. I generally work out in the
evenings, chat on the internet, plan vacations, etc.
Have
been getting psa tests every six months... one was "0.07" but the last 2-3 have
been "below 0.1" (the lab says that it is not scientifically significant to report
scores to the second and third decimal point... so they have stopped doing it).
My doc says he will have me do one more psa test on the six month schedule and
from thereon the psa testing will be annually. Yep, sounds pretty good as far
as the PCa is concerned... my hope is that my case is one of the less aggressive
ones, the "pussy cat" variety as opposed to the "tiger variety". And I haven't
been left with any serious or chronic adverse side effects. Now to get the weight
down... so that I will not develop heart problems. Bottom line is that life is
moving on.
Cal
hits Silver status this year - five years on from his diagnosis. He is now 64,
his current PSA is 0.01 ng/ml and his current treatment is, to use his words "Watchful
Learning". This is what he has to say:
Same-o,
same-o... psa remains low, side effects remain extremely minimal. Occasionally
notice some unusual urgency... but that is it generally.
Still
same-o, same-o, but just had another psa test to double check.
Same-o,
same-o is the general theme.
However
to bring the record up to date, my latest PSA is officially 0.08 ng/ml (tested
January 9th, 2007). Libido slowed down, but plumbing works with a little encouragement.
Some bladder and bowel "urgency" occasionally. Still overweight; still finding
it very difficult to lose about 40 lbs. No other side effects.
I
am older... seven years older than when first starting this journey. Also, in
2003 my wife and I moved from Redlands, CA, to San Diego, CA. (Point Loma community).
Still Southern California. I am working in Carlsbad, CA... about a half hour North
of San Diego city.
Spent
December 2006 in Mexico, vacationing (hiking, kayaking, and reading) at the tip
of Baja California.
Another
year of same-o, same-o... PSA in February is again somewhere less than 0.1, no
apparent signs of changing. All plumbing still works. Only side effect I would
attribute to PCa treatment is some urgency sometimes. It is handy to know where
the nearest restroom or bush is. Blood in stool is long, long a thing of the past.
Spent
another end of the year 2007 at the tip of Baja California, generally worked out
daily, did some kayaking, hiking, tennis, and reading... this time also went fishing,
caught a small marlin and several good sized dorado (aka mahi-mahi).
Cal's e-mail address is zzzzjones@hotmail.com
