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.
Friday, November 27, 2009
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.
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.
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.
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.
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.
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