THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

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).

Had another "yearly" PSA; test (and DRE thrown in for free) in January 2009 when I got back from vacation at the tip of Baja California. Also had a colonoscopy (every five years?). I got busy with normal life, still working and still occupied with "projects" around the house. Anyway, I forgot to update my YANANOW site.

Result of tests: PSA still 0.07; colon still clear. Yep, this same-o, same-o theme appears to continue... including the overweight that I am still want to shed.

Play less tennis now, workout more, did heavy gardening last month (getting ready to rebuild a house), walk often. Sometimes kayak and watch whales.

I recently received a message from YANA imploring me to update my story. [I think imploring may be a little overstated - asking politely perhaps: pointing out the value of a GOLD MEMBERS input?]

Well, I do not have an update since my 2009 report of a PSA;. That said, all is going well here and has been ever since discovering YANA in 2000. So well recently, I put off reporting and put off getting a PSA this year. I do read all YANA updates, however.

I usually get an annual PSA test in January (when I return from a traditional, annual jaunt to Cabo San Lucas area over Christmas and New Years). Since I skipped a test in 2010 so far (just busy, inadvertent), I have not had the news to report. So, at this time, for the time being, I do not have the answer to the ever-present question, "How's your PSA?"

But I can report life goes on and in ten days, I will reach 70 years old. I am wondering if I will ever grow up. I think I can attest that even us youths can be victims of PCa and they, as myself, should get PSA tests and deal with the results as one deems important. Men and anyone else reading this story should also be advised to visit the rest of the YANA site too… other stories obviously, if interested; but importantly also the humor stuff, Troop C, etc.

Bottom line for me at this time is that the only news to report re my YANA story is just another "same-o, same-o" refrain, but without a 2010 PSA test result. Well, I have a birthday coming up too and I am looking forward more to good wishes and a glass of wine. If any readers are near San Diego, they are welcome to join me with the wine and live conversation (wine, PSA's, whale watching, politics, Troop C).

If anyone else reading this has had or is having a birthday too in 2010, congratulations to all and best wishes for more. Yep, I will report my next PSA test... likely in February 2011 when I get back from Cabo and Hawaii (a two-fer this year).

Skipped a PSA test and visit to doc last year... just got busy and kept putting off making an appointment. So I went this year, got the PSA in February (just learned the results today when I had my consultation). Result 0.07... this is same it has been for several years now. Otherwise, health in general going well without issues too. So, this is another "same-o, same-o" report. [And very important for that very reason - to show that there IS a life after a prostate cancer diagnosis.]

While still trying to loose weight, I began a self-designed exercise/stretching program last September 2011. It mainly consisted of doing jumping jacks, so many that I was gasping for breath. I did 3-4 repetitions... and then stretched a lot too. It is the sort of exercise program that runners might use in the form of "interval training" where they run as fast as they can, but for only 1-2 minutes, then run/walk slowly to recover; then repeat 2-3 times. But in doing such intense exercise with jumping jacks supposedly is less likely to cause injuries (eg to knees, ankles, etc.).

Well, all was OK for four months as far as loosing some weight (I did loose 12 lbs) and regaining flexibility in general. But I also suddenly realized I had developed plantar faciitis (really sore, painful heels... strains to the connective tissues, tendons in the feet). Meanwhile, I changed doctors twice (and hospitals and labs).

I changed because I now live in San Diego, but my PCa doctor that was 100 miles North suddenly switched hospitals to my home town: so it is closer now to get my annual DRE, PSA; test.

Anyway, the new lab PSA; results at the new hospitals in San Diego have been reported as 0.16 in November 2011 from one hospital lab, and 0.14 in April 2012 from the second hospital lab.

These results are "higher" than what I am used to getting, but my doctor assures me that the differences in this case are "not statistically significant".

That is, when changing labs, it is common that different "assays" and types of PSA; tests are used... and the results also do vary -- even in the same lab from time to time. Well, the results commonly are reported at different levels, but the given potential statistical error (range) is still close.

In my case that is the assessment since the reported difference does not appear to be great enough to warrant a suspicion that the PCa is recurring. The annual DRE (digital rectal exam) checked out fine, no issue. So the doc says if I am worried, "we can check out the PSA; again in few months"; otherwise the PSA; seems to still be way below 1.0 and that is consistent with no recurring disease!

Otherwise, things going great: yep, same-o, same-o in the sense life is great, having fun and generally not worrying about PCa or adverse side effects from conformal proton radiation therapy 11+ years ago. The plantar faciitis has slowed me down for the time being, but it is definitely improving and I am again determined to loose an additional 10+ pounds with exercise and diet.

Finally got over the plantar faciitis (slowly... took a year!), but have been careful not to do extensive jumping jacks for the time being until I am sure. I do lunges and squats and "fast feet" in rapid succession to get the heart beat up: typical of the "interval" conditioning that is often recommended now to stay in shape.

Anyway, life has not been without issues this past year. I turned out to have a sudden shortness of breath one Sunday in Nov 2012. I had no hint why (no other signs/symptoms). Fearing maybe a heart issue, I popped an aspirin and drove to a nearby emergency room to be checked out. The verdict was no heart issue at all... so I got up and prepared to leave. The doc said "no way"... need to spend 3-4 days in the hospital on blood thinners due to a pulmonary embolism (several small blood clots in my lungs).

This was all new to me, but as it turned out I was able to leave after a couple of days. The treatment was 6 months of blood thinners. All has turned out fine: doc never figured out the cause and the blood clotting has disappeared... I feel great and actually never stopped normal exercising, except for when I experienced the shortness of breath and during the hospital stay. Meanwhile, had blood drawn often, many times to check the blood thinner level for the six month period, to May this year. I also had some routine PSA; tests done (since there was plenty of blood available!) All PSA; results (again from another different hospital lab) were well under 1.0... but one was slightly higher (0.78), and the last one was lower (0.55) --"under one" for sure... so the docs say all is well with the PCa stuff.

Meanwhile the pulmonologist noticed a "suspicious" spot on left lung, lower lobe. I had a spot like this 13 years ago (when coincidentlly diagnosed with PCa) and that spot turned out to be a non-threatening, benign "valley-fever" scar. That was no big deal (after being watched for a year with repeated periodic x-ray pictures). This time, the answer is still unknown... will have a biopsy in a few more days; and maybe that will lead to some surgery. The "good news" is the spot has all the signs at worse as being the most easily cured type of lung cancer... err, if it is cancer. There is no hint it might be PCa that has spread and no sign it might already be metastasized at all... only one suspicious spot, lymphs are all clear on the PET/CT scan, etc. "Can just cut it out and you will be fine," assess the docs. Easy for them to say! After the biopsy, we might know some more... like whether it is cancer or just what it is.

Otherwise, things going great: yep, once again another year of same-o, same-o as far as PCa is concerned. In this sense life is great, having fun and generally not worrying about PCa or adverse side effects from conformal proton radiation therapy 13+ years ago. The plantar faciitis has slowed me down, but it is past being an issue and I am again determined to lose an another 10+ pounds with continued exercise and diet.

By the way, the exercise regime definitely shows: the docs have been checking and testing my lungs in case surgery is needed... and they say I have strong lungs, all a good sign that exercise makes a difference in overall conditioning. Also a sign the suspicious spot so far is not compromising the function of the lungs. If you are wondering as I at first did whether proton radiation might be a good route to go in dealing with this suspicious spot, I consulted the proton docs and was advised in this case, surgery is the only known to be "the best" solution (mainly because I am at such low risk for having surgery complications... "good lungs" "no heart issues", etc.).

Personally, I especially am not looking forward to a necessary 3-4 day stay in a hospital recovering. The 10 day out-patient proton protocol for lung cancer does sound more tolerable from the point of view of avoiding the risks of infections and other hospital stay complications in general. The docs all say the hospital route risks are all "extremely low" but they never cite actual numbers.

Looking back, I think learning how to deal with prostate cancer was a challenge, but the answers to the relevant questions seemed more assuring after talking to hundreds of PCa patients... and reviewing posts in general of others on YANANOW, those that opted for proton and those that opted for one of the other available protocols. Comparing what knowledgeable patients have to say I find most reassuring and more relevant in the end (no pun intended) than what one hears from healthcare providers... IMHO. The only exception to this generalization is the female biopsy nurse who 13 years ago pulled me aside as I was leaving the uro's office... and advised me to "check out proton" before submitting to a surgeon's knife or 3D-CRT. Low PSA;'s to all.

Cal's e-mail address is: zzzzjones AT hotmail.com (replace "AT" with "@")

NOTE: Cal has not updated his story for more than 15 months, so you may not receive any response from him.