Friday, November 27, 2009

A BELATED SIX MONTH CHECKUP

Dr. Gud E. Nuff initiated our appointment by reviewing my chart and asking me how I had been doing in general. I told him I felt great and had been experiencing no ill side effects. He conducted a DRE, palpated the lymph glands of my neck and groin, then concluded these proceedings with the following assessment, "you have less than 1% chance of dying from prostate cancer." "Do you have questions?" he inquired. The following discussion ensued:

Comment and Question:
"I had been scheduled for a colonoscopy three months ago. I consulted with my case manager at UFPTI who advised me to wait at least one year. When ready she would mail my proctologist advisory materials on how to conduct his examination." I asked Dr. Gud E. Nuff to address these issues.

Answer
"Proton radiation irritates and reddens the bowel especially in the vicinity of the prostate. Proctologists are trained to biopsy in these circumstances. Such a procedure may cause an ulceration that is resistant to healing. Additional intervention may then be required. A year of healing following treatment is simply a precautionary measure."

Comment and Question
For perspective on the next few questions the reader should know I avoid "unnecessary" exposure to radiation and have done so most of my adult life. For example my dentist routinely provides his patients with an annual full mouth x-ray. In deference to my concerns in this regard my dentist reluctantly limited this prodedure to once every ten years for me.

Following my diagnosis of prostate cancer I readily agreed to any and all forms of radiation. This included a multitude of preliminary assessments including an MRI (or two) a Cat-scan and various other diagnostic procedures involving radiation. The treatment procedure per se consisted of 39 occasions of concentrated proton beam radiation assisted by innumerable
x-ray scans to ensure the proper placement of my prostate.

"What are the long term effects of all this radiation on my various body parts including my bladder, colon, rectum, bones and other tissues in the path of the radiation beams.

Answer
"Negligible".

Question
"Same question as above concerning the effect of radiation on my longevity."

Answer
"Negligible"

Question
"Am I at greater risk for other cancers as a result of my history of prostate cancer and radiation treatment."

Answer
"Negligible"

In concluding our appointment Dr. Gud E. Nuff pointed out that 30% of post-treatment graduates experience rectal bleeding at about the 18 month interval. I knew about this phenomenon from reading Marckini; on page 130, Marckini comments as follows:

"As. . .healthy tissue repairs itself, there is a phenomenon called radiation induced neovascularization. New blood vessels form in the rectal wall, and periodically some blood vessels near the surface leak blood, or a scab will slough off. This condition is not uncommon, it is self-limiting, and it almost always goes away after a few months."

I certainly hope I am among the 70% who do not experience this worrisome symptom, but all in all, I do not know how the results of my belated six month checkup could have gone much better.

Sunday, October 11, 2009

A Routine Journal Entry--- Eureka!

Another favorable PSA reading to report,i.e., .55.Fantastic! My Free PSA also continued to drop,i.e., .05. This could be bad news, but probably isn't. UFPTI advises that Free PSA readings are collected on us gradutes at this point for future research purposes only. Conceivably I will discuss this topic in more detail after my belated six month checkup at UFPTI scheduled for November 12th. I should have other matters of interest to report, because, as usual, I intend to raise many questions.

Saturday, June 13, 2009

Three Month Update

This entry qualifies as a good news bad news edition. First the good news: (1) I am totally free of the nuisance side effects reported earlier, i.e., intestinal turmoil,urgency and incomplete voiding and (2) my PSA has dropped to a remarkable 1.10. I am unsure of what I expected, but I can say with absolute certainty it never occurred to me my result would be quite this low. The staff at UFPTI advised us not be be overly concerned if we experienced an occasional spike in our PSA during the two year monitoring period. In keeping with this advice I will try my best not to become overly optimistic in view of this phenomenally low, totally unanticipated reading.

For the record the reader should know UFPTI directed the lab to run a Free PSA; my result was 12 which signifies my risk of an existing cancer is less than 25 per cent. A Free PSA will be run periodically over the next 21 months.

Now for the bad news. My potency seems to have diminished (I am guessing) in the neighborhood of 10 to 15 per cent. This erosion may be due to the aging process., If it is due to proton radiation, however, it contradicts the prognostication of Dr Gud E. Nuff. On the other hand it places me among the 35 per cent of men who report some change in their sexuality as per R. Marckini , p.67. I suspect I am much better off than would be the case had I selected a treatment modality other than proton therapy.

Stay tuned. Who knows what the next three months will bring.

Wednesday, March 11, 2009

A Semi-Final Word

As of today the proton treatment is complete.

Nuisance side effects should slowly fade completely.

The speech went reasonably well, though, it would have been better had I not been quite so emotional. Of course I wept, but the audience was patient and seemingly appreciative.

The initial PSA result looks very promising. it dropped from a high of 3.8 to 2.41. We will monitor my PSA very closely, i.e., every three months for the next two years.

From time to time I will provide progress reports so stay tuned if interested in outcome long term.

I wish to thank my family and friends who offered their welcome support throughout my tumultuous journey.

Friday, March 6, 2009

The Final Stretch

As of this entry I have three treatments remaining. My intestinal turmoil at this point is minimal. A few minor bladder annoyances have arisen, but no major problems exist and none are expected. The minor annoyances, urgency and incomplete voiding from time to time, are said to be "self-limiting."

Each of us prostate patients is expected to make two presentations at our weekly luncheons. My second and final presentation will be delivered next Wednesday following my last treatment. Its content appears below for your consideration.

When I last stood before this group as a newbie I wept. I wept because I was so happy to be here. Today I may become a little misty eyed. This time because I am so happy to be through with my treatment. I am a full fledged graduate as of today, and I will be leaving soon, perhaps, tomorrow. And as all of you can appreciate that is a very good feeling.

I intend to try not to weep today, however, not because its unmanly, but today's presentation is about this institution and the staff who make it what it is. I wish all the people who contributed to my care could be here so that I could tell them personally how grateful I am. Inasmuch as this is not possible I am including this presentation as my next journal entry. It will be available to my family and friends who have followed my treatment, to certain staff member's who are aware of its existence and to all those in cyberspace whoever and wherever they may be.

My list of heroes is limited to those I interacted with most directly, roughly on a consecutive basis as follows:

- To the intake staff who answered all my questions and patiently assisted and guided me in the collection of all of the medical data which resulted in my acceptance by this center. Thank you so much for your caring assistance.

-To my case manager who shepherded me through the program. This key member of my treatment team answered innumerable questions and promptly returned my phone calls of which their were many. She coordinated responses to the blips and hiccups that occurred along the way. It takes a special person to do this job and she certainly qualifies in this respect.

-To my managing physician who developed my treatment plan and oversaw its implementation, who smoothed out the bumps and medical issues as my treatment progressed. In my blog I refer to him as Dr.Gud E.Nuff. In retrospect I wish I had named him Dr.Tu Gud because in many respects, like this institution and its staff, they are seemingly too good to be true.

-To the simulation crew who worked so diligently in preparing me for the real thing. I presented them with a very real challenge, in that, on the day of my work up I experienced the worst case of intestinal turmoil that I had suffered in the previous six or seven months. They responded by redoubling their efforts. I feel indebted to their unwavering patience and commitment to their important task.

-To the gentle conscientious caretaker who inserted my four gold rings. I think the urologist who conducted my biopsy could learn a thing or three from this accomplished practitioner.

-To the Patient Services Director whose enthusiasm for this institution is contagious. I knew I was fortunate to stumble upon proton therapy as a solution to my problem, but I did not realize how lucky I was to end up here in Florida until I took the guided tour. It was so educational, so encouraging and so entertaining that I took the tour twice; the second time I took notes. If ever there was a man who found his calling it is this fine gentleman.

-For the technologists and radiation therapists and the person who hired them. What a beautiful/handsome conscientious and competent crew. Thank you so much for your daily compassionate care.

And finally I want to pay tribute to my wife Marilyn who among other duties serves as my navigator, secretary, business agent and recreation director. As always we were joined at the hip
throughout this ordeal. She accompanied me on all the preliminary meetings and on each treatment trip we made to the center. Most importantly she kept me warm on each of the cold winter nights we spent here in Jacksonville--of which there were many.

Would each of you please join me in applauding the individuals I have cited and all those who have contributed to the great care each of us has received during our stay here.

Thursday, February 26, 2009

An Unexpected Procedural Change and Corresponding Concern

For the sake of emphasis and because of its relevance, I am including the following passage from my previous journal entry:

"When undergoing radiation for cancer, minor deviances produce major concerns. For a non-participant, it may be difficult to fully appreciate, but each unanticipated blip becomes a quality of life issue."

As the technologist escorted me to the dressing room one day last week, she advised me: "Today's treatment will take a little longer than usual, because of an adjustment to the beam aperture." "Less of the tissue surrounding the prostate will be radiated." What triggered this modification, I wondered? Had something shown up in the monitoring mechanisms that necessitated a change? Did the intestinal flareups indicate a need for a more focused approach? Had there been an error in the initial treatment plan that needed correcting? The technologist assured me (1)this was a preplanned change which occurs in about fifty percent of the patients she radiates and (2)the less collateral damage the better. Good reassuring information to be sure, but in my estimation ill-timed. I made a mental note to discuss this conundrum with Dr. Gud E. Nuff.

In my weekly discussion with the gud doctor I expressed my concern. To my surprise (dismay?) the doctor seemed unmoved. "It is a matter," he responded, "which the technologists are perfectly capable of handling." Perhaps so, I thought, but from my (patient's) perspective, there is room for improvement. In my humble opinion, the planned procedural change provides a golden opportunity for a meaningful doctor-patient dialog, preferably, early in the treatment process. I intend to address this issue in my exit interview.

Thursday, February 19, 2009

More Blip, More Anxiety

When undergoing radiation for cancer, minor deviances produce major concerns. For a non-participant, it may be difficult to fully appreciate , but each unanticipated blip becomes a quality of life issue. My intestinal flare-up reemerged this past weekend. On Monday when removing the balloon the attending technologist advised me to consult my doctor because of the apparent rectal bleeding that had occurred. Rectal bleeding is never a good thing. As a proton therapy patient it is a potential calamity. Accordingly my case manager arranged for a consultation with the on-duty physician within minutes following my treatment. TALK ABOUT RESPONSIVENESS; ABSOLUTELY AMAZING.

In any event the attending physician, an extremely conscientious caretaker, after reviewing my record and asking a host of relevant questions concluded: (1) This particular intestinal disturbance was most likely caused by dietary indiscretion. * I had consumed two beers and several handfuls of peanuts on Friday evening and (2) the bleeding resulted from a combination of the intestinal disturbance and the normal irritation which accompanies the usage of the balloon. In his professional opinion radiation was not a significant factor, and in due time I would be just fine. From my perspective, I had dodged another bullet.

*A note on diet. During the active treatment period, i.e., a five day work week, proton patients are expected to avoid gas producing foods and beverages including carbonated beverages, leafy green vegetables, fiber etc. Fridays are supposedly "free days" when it is acceptable to return to your normal diet. Apparently I found an exception to the exception.

Thursday, February 12, 2009

Progress Report

The gastrol-intestinal blip is substantially resolved. Dr. Gud E. Nuff appears to have been correct. The other really good news is I am half way through the treatment process. So far, so gud.

Friday, February 6, 2009

An Unanticipated Blip

Sixteen down, twenty-three to go. So far so very, very good. I have experienced a couple of minor side effects. The most disturbing symptom to date has been "intestinal turmoil" which under normal circumstances would generate little or no concern. Because I am in treatment, I suspected I may be reacting to radiation. Consequently, I felt a moderate degree of alarm. In addition I was concerned the intestinal disturbance which included the production of gas may adversely impact the treatment process. We prostate patients learn early on intestinal distress must be avoided.

In my last journal entry I discussed the various measures taken to immobilize the prostate. Intestinal gas has the opposite effect. It creates a moving target and undermines the treatment process. Because of my two-pronged concern, I consulted Dr. Gud E. Nuff. In his professional opinion these symptoms were neither caused by radiation nor were they affecting treatment. "Let's monitor the situation and go from there," he advised, which sounded both reasonable and reassuring. Its comforting to feel as if you are receiving gud care.

Friday, January 30, 2009

A Day at the Gantry

In proton vernacular the radiation treatment area is known as a gantry; it resembles the inside of a gigantic washing machine drum. It is roughly 12 feet in diameter and 10 feet deep; it is painted in hospital white. There are currently three such gantries at UFPTI. The gantry in which I am treated is staffed with seven technologists (three or four per shift) most of whom are attractive, super-friendly attentive young women. The one male staffer I have encountered is clean-cut and no less friendly or attentive. On our first meeting this young gentleman alluded to the church group of whom he is a member and with whom he interacted the prior weekend.

Extensive efforts are devoted to ensuring that a given patient is properly identified thereby guaranteeing he will receive the appropriate degree of radiation using the lens designed especially for his treatment. Likewise extensive efforts are made to properly align the patient and his prostate.

A typical day in the barrel -like drum occurs as follows:

---The patient arrives thirty minutes early and dutifully empties his bladder. On cue from a technologist he consumes 15 ounces of water.

---A technologist escorts the patient to a small dressing room. The patient exchanges his street clothes for a hospital gown which is as you might expect open in the back and in this case for good reason.

---When summoned the patient takes a fifty-yard stroll down a hall to the treatment area. A gantry crew member scans the patient's identification tag and has him confirm his identity by reviewing three computer screens each with his printed name and one of which displays his recent photograph.

---The patient mounts the gurney and positions himself in the body cast designed during his three day workup for the purpose of properly aligning and immobilizing the lower portion of his body. Gantry staff make minor adjustments to the patient's positioning as needed based on laser technology.

---The prostrate per se is properly positioned and immobilized by the introduction of a measured amount of liquid infused by one of the technologists directly into the patients rectum or within the confines of an elongated, well-lubricated elastic balloon. This procedure is the most emotionally and physically discomforting aspect of treatment. I am not sure how the crew decides who will carry out this task. I do know the administering technologist changes from day to day. Perhaps its a democratic rotation. Conceivably its the short straw method. Then again it may be the way in which my sister and I decided who's turn it was to do the dishes when we were children. This process consisted of a potentially endless debate of "it's yourturn," "no it's your turn" until we reached some sort of trade off compromise or the ultimate arbiter in the matter, our mother, decided whose turn it was indeed.

---With the push of a button a technologist rotates the automated gurney into the washer drum portion of the gantry.

---Xray machines roll out, one on the side, one from the top, for a final check on the alignment of the patient's prostrate. The beam zeros in on four gold marker's inserted in the patient's prostrate during his three day workup.

---When all systems are go the proton beam is unleashed on its cancerous target. There is no sound or sensation to signal its operation. The patient knows he is being radiated when the gantry crew quietly leaves the area. In a matter of minutes the crew returns. The treatment officially ends when the balloon is removed and/or a technologist assists the patient with his dismount from the gurney.

---A return stroll down the hall, a visit to the bathroom and redressing completes the process.

Although the treatment plan varies from person to person, typically prostate cancer patients undergo 39 such treatments on consecutive workdays.

Friday, January 23, 2009

Prognosis

A physician by the name of Dr. Gud E.Nuff oversees my treatment at UFPTI. He is a radiation oncologist with over 15 years of experience. Dr. Gud E. Nuff's calm, cool, confident and somewhat laid-back demeanor belies the enormous responsibility he shoulders for ensuring the medical well-being of the patients under his care.

Based on the results of the battery of diagnostic tests administered in conjunction with my three day workup, Dr. Gud E. Nuff developed my treatment plan. Currently we meet weekly to discuss my progress. On the three occasions we have met I have managed to focus our discussions on what to expect in the way of outcome over the long term. Here is what I learned; in each of the areas which all prostate cancer patients share a particular concern:

CURE RATE
Cure is indicated by low-normal PSA readings and the absence of any biological indications of cancer. Dr. Gud E. Nuff estimated my chances of this type of outcome were in the 85 to 90% range.

IMPOTENCE
Dr.Gud E. Nuff is a glass full kind of guy. He talks in terms of potency not impotence. He advised me not to expect an improvement on this parameter. On the other hand, he reassured me I could expect to leave the treatment center with about the same degree of potency that, "I brought to the table."

BLADDER CONTROL/INCONTINENCE
"The likelihood of a problem in this respect," Dr. Gud E. Nuff opined, "are negligible, almost zero."

BOWEL/INTESTINE COMPLICATION
"The chance of a problem in this respect," Dr. Gud E.Nuff estimated, "are less than 8%."

In my estimation I am in gud hands with good prospects.

Friday, January 16, 2009

Treatment Begins

Good news: (1) the diagnostic tests alluded to earlier have been confirmed negative which means the cancer is limited to my prostate, and (2) my treatment has begun. The UFPTI program included a tour of the facility, consequently, I knew what to expect. The initial treatment proceeded flawlessly. My emotional reaction to the procedure, however, caught me by surprise. I experienced a mixture of gratitude, fear, concern and amazement. Underlying these emotions was the knowledge that cutting edge science, modern medical technology and a sophisticated team of highly trained physicians, nurses and support staff had been assembled, in part, to treat a 72 year old man's cancerous prostate in an effort to salvage what remains of his quality of life. A somewhat melancholy and extremely humbling experience for which I am deeply grateful.

The remainder of this journal will be devoted to the treatment process. I will address outcome expectations (prognosis) and side effects as they materialize.

Monday, January 12, 2009

Pretreatment Musings

At least two of the proton treatment centers I contacted provided a list of their former patients who expressed a willingness to discuss their treatment experiences with anyone who might be interested. Since my arrival here at UFPTI I have interacted with a number of proton therapy patients. At a recent luncheon I heard former patients discuss their treatment experiences and outcomes. I have also visited a few web-sites devoted to proton treatment and reviewed the testimonials of dozens of former patients. I have yet to hear an unfavorable comment. Without exception these individuals discuss the process and their outcomes enthusiastically in highly positive, near-reverent terms.

Maybe they exist, I have not researched the matter, but I have yet to see a book, a web-site or a list of patients extolling the virtues of prostatectomy, seed implantation, castration, other forms of external beam radiation or any other treatment modality. I suspect there may be an underlying reason or two.

Monday, January 5, 2009

The Proton Advantage In a Nutshell Moreorless

Healthy cells tolerate the destructive force of radiation better than cancer cells. Therein lies the effectiveness of radiation for treating cancer. One characteristic of a proton beam is known as the Bragg Peak. As described in an article by James Metz M.D. "...the absorbed dose of a proton beam increases very gradually with increasing depth and then suddenly rises to a peak at the end of the proton range." The energy level beyond the Bragg Peak is relatively negligible. Another important characteristic of a proton beam is it can be manipulated to deliver optimal levels of energy to precise locations within the target area. In layman's terms cancer cells can be nullified with pinpoint accuracy. By way of contrast an xray beam, the more common form of radiation, tends to deliver equal amounts of energy from the entry level through the target volume to the point of exit. These differences in radiation characteristics translate into less collateral damage from proton beam radiation. Herein lies the proton advantage.

I have no reason to doubt the validity of the above information. It is derived from a variety of presumably reliable sources. I feel obligated to mention, however, many well-intentioned, highly trained professional experts would disagree with the above-stated point of view. The reader may recall Dr. Tuflov who had recently attended a national symposium of radiation specialists who concluded clinical evidence does not support superiority of proton treatment over other forms of external beam radiation either in terms of long term outcomes or adverse side effects. It is the lack of unaminity among the experts that has made my journey all the more tumultuous.

Friday, January 2, 2009

Pretreatment Impressions

After being here in Jacksonville for awhile, touring the facility and interacting with a few of the institutes's medical personnel, I am satisfied with my treatment choices. Dr. Ezee's and Dr.Tuflov's persuasiveness notwithstanding, I am convinced that for me and my circumstances proton therapy represents the least unattractive option. Preliminary test results indicate the delay involved with this choice has not jeopardized my chances for a favorable outcome. Furthermore I am convinced UFPTI is the premiere proton treatment center in existence. It offers state of the art equipment and the most advanced technical procedures available.
By virtue of my modest research effort and a ton of dumb luck, I am at the right place at the right time to be treated for this dreadful disease.