After the initial effects (fear, anger, depression, etc.) of my diagnosis, I embarked on intensive research about this disease and its treatment.
My conclusion was that selecting the doctor and facility that provided the treatment is as, or even more important, than the treatment chosen. With a Gleason of 7 and a PSA velocity of 5.323 ng/ml/yr, it was clear to me that the disease was aggressive and that the high probability of extra-capsular extension would require treatment to kill not only any cancer WITHIN the gland, but also any that may have escaped. I selected Radiotherapy Clinics of Georgia, based primarily on their excellent results as documented in peer-reviewed professional journals.
Upon arriving at their facility I was surprised to find that the level of compassion and human caring was fully the equal of their top-notch medical care. Approaching the 3.5 year anniversary of my treatment I am overjoyed with the results. My PSA is stable at 0.1 ng/ml, I have NO side effects and continue to share a still-exciting and satisfying sexual relationship with my wife. I lead an active life, farming, woodcutting and grandfathering and enjoy robust excellent health. I have no assurance that my treatment will result in an actual "cure", but so far, so good, and the peace of mind allows me to continue this journey through life with joy and exuberance.
11 October 2001 - Current Age 62. Current PSA 0.1. Current Treatment none. Treatment has been completed. Initial treatment? Brachytherapy followed by EBRT. After 1000 hours of research regarding this disease and its treatment, I elected to travel 800 miles to Radiotherapy Clinics of Georgia. My stay there was actually a lot of fun. Morbidities during and shortly after treatment were minimal. And now, over three and one-half years after treatment, I still have completely normal bowel and urinary functions, enjoy a wonderful sexual relationship with my dear wife Sharon and have a PSA that is stable at 0.1 ng./ml. Only time will tell if I have really been CURED of this disease, but I'm extremently happy with my choice of treatment and would gladly share my experiences with anyone who might be interested.
January 27th 2003 marked the 5th anniversary of my treatment for prostate cancer at Radiotherapy Clinics of Georgia so an update is in order. CURE is a word that comes with much difficulty to the survivor of any cancer and being very conservative in nature I hesitate to use it, but according to the long term statistics compiled by RCoG over the decades that they have been carefully collecting patient information, my chances of remaining in remission for the rest of my life are now in the very high ninety percentages and I am overjoyed. there is still a degree of apprehension every six months while waiting for the results of my PSA test, but it is still holding at an undetectable level and my confidence builds each year.
While I was in the most difficult period of making a treatment decision I was told by urologists of the many side effects that may result from radiation therapy while minimizing the side effects of their own surgery. The few side effects that I experienced during and immediately after treatment were minimal and absolutely none remain. After one initial attendance to a PCa support group meeting where the side effects of various other treatments, from other doctors and facilities were so depressing that I decided not to return, I have returned to support group participation to spread the message that indeed, a man can return to an an active, exciting and fully functional life after PCaS IFS they do their homework and choose their treatment carefully.
I implore ANY newly diagnosed prostate cancer patient to take the time and do the work necessary to find the very best treatment they can. I spent over one thousand hours researching my own treatment decision and have spent even more since, because I want to keep up with the latest information in the field. I am forever grateful for my dearest Sharon, who, during the most difficult time in the decision-making process offered the following, "You are worrying about inconsequential details like lost time from work, expense, travel, distance and the like. Just find the best place to be treated and go there. I want you to be around for a long time." I took her advice and have prospered (at least in the health department). Now retired, prostate cancer has almost become a non-event and I can focus my energies on my farming, my hobbies and the very big job of spoiling my grandchildren (now six in number). If I can be of any help in aiding others, it would be some repayment to those prostate cancer patients who helped me.
Jack is doing well. He says: July 27th marked my 6.5 year anniversary after treatment. My PSA was still undetectable and I am thoroughly enjoying life.
8 YEARS past treatment I am still "biochemically free of disease". My PSA still remains undetectable. What makes this anniversary even better is that I am also completely free of any sexual, urinary or bowel side effects from my treatment. Although the primary goal in selecting a treatment is to eliminate the disease, every prostate cancer treatment has side effects and avoidance of long term side effects should be considered when selecting a type of treatment, and in selecting who does your treatment.
My advice to any newly diagnosed PCa patient is to take the time to research the RESULTS of patients treated at any clinic, institution or doctor to find out how well his patients are doing five and ten years past treatment. When I was researching treatment in 1997 I found this to be very difficult. The reason is simple. MOST doctors don't take the time and effort needed to find out just how well their particular type of treatment is working. Only those doctors who are genuinely dedicated to improving their techniques actively follow-up for the many years needed to determine if their patients are still free of disease, and even fewer investigate the long term side effects experienced by their patients. I found that most doctors really have no idea of how effective the treatment they are doing is in the long term. Those patients who's treatment fail just find another doctor. It became apparent to me that a doctor who cares enough to find out just how effective his/her treatment works is more likely to do a better job than one who doesn't.
In 1997 there were only a handful of doctors who could provide actual statistics showing the percentage of their patients who were still free of disease at five and ten years, and it appears the situation hasn't changed much in the last nine years. My advice is to find doctors with PROVEN RESULTS for your "short list" of possible treatments. After that, you can make your choice based on type of treatment and other considerations.
I really have nothing to report. My PSA is still non-existent, all the plumbing still works fine, and I enjoy a wonderful sexual relationship with my wife. My next PSA is due at the end of July and I'll post an update after that.
In just two days I will reach the magic day that we all look forward to... ten years since treatment with an undetectable PSA.
I received word of my PSA results today. I am so excited because I have now reached that point where statistics say I will have a 99% chance of avoiding any recurrence in the future and will probably die of something other than prostate cancer. Approaching the age of 70, I am also excited that absolutely NO side effects bother me. No urinary problems, no bowel problems, no erectile problems.
I'm about to write a nice letter to Dr. Frank Critz and his group at Radiotherapy Clinics of Georgia thanking him again for providing a treatment that has actually cured (if I can now use that word) my cancer. I will also figure out something nice to do for my brachytherapist, Dr. Clinton Holladay, who is now practicing in Birmingham, Alabama.
I am now 11 years past he start of my treatment on January 27, 1998. For most of that time my PSA has been undetectable (less than 0.1) and I was joyous when I made it to ten years. I did figure out how to thank my brachytherapist, Dr. Clint Holladay. I called his office and talked to his office manager. She gave me the name of a local delicatessen and I arranged for a full lunch to be delivered for Dr. Clint and his entire office staff.
I had my 11 year PSA taken last month and for the first time it appears to have gone up. Not much, but from less than 0.1 ng/ml to exactly 0.1 ng/ml. I am not starting to worry yet, because such a small change could be due to lab error or mis-calibration of the the equipment.
I have noticed an increase in ejaculatory fluid over the last two years and this would be consistent with the regrowth of prostatic glandular tissue inside the prostate. My radiation treatment at Radiotherapy Clinics of Georgia was designed to kill ALL of the glandular tissue, but perhaps it didn't. I have written to Dr. Critz, the founder and Director of RCOG t ask his opinion of the situation, but he is out of the country and hasn't yet answered. All though it was thought to be extremely unusual to have recurrence after 10 years, it has happened before and I have noticed more reports as more of us pass the 10 year mark.
I'll keep you all posted on what happens.
Jack
In response to an e-mail reminder, Jack says he's late in getting his PSA but will report anything of interest in due course.
147 months have passed since I started treatment for my prostate cancer. Over 10 of these 12 years I have enjoyed being "biochemically free of disease", or in other words, my PSA has been undetectable. Because of the success of my treatment at the Radiotherapy Clinics of Georgia (Now RC Cancer Centers) I have been asked by many for advice in selecting a treatment. It has always been the same, find a doctor or facility that has a PROVEN TRACK RECORD of actually CURING prostate cancer based on long term studies of patients ACTUALLY TREATED by that doctor or facility.
When I was first diagnosed, my ex-urologist told me that I would have an 86% chance of being cured if he did an RP on me. I told him that I was surprised that his cure rate was as good as the best surgeon at that time, Dr. Patrick Walsh at John Hopkins. When I pressed him to learn just how he determined this success rate he admitted that he had done no long term follow-up studies of his patients, and that this figure was the "commonly accepted" cure rate for his procedure, in other words he LIED to me. Any type of prostate cancer treatment is highly "operator dependent" in that both the curative success as well as the associated side effects are the result of the skill of those doing the treatment. Doctors generally don't like to talk about side effects, and most don't know the numbers and severities of the side effects of the patients they treat. The reasons are simple, most don't ask, and if a doctor's treatment fails or the side effects are extreme, the patient just finds another (hopefully better) doctor. [The results of two Site MiniPolls show this: What were you told? and Did You Get What You Wanted/Needed?]
If you are newly diagnosed, PLEASE select your "treater" carefully, and don't just pick a type of "treatment". The same treatment done by different doctors can produce much different results. A man treated with external beam radiation by Dr. Zelefsky at Sloan Kettering in NYC has a relatively good chance of cure. The same "treatment" by two clowns at St. Joseph's hospital in New Brunswick, New Jersey can burn a hole through your bladder and bowel leaving you urinating from your anus. I attend a lot of Man to Man meetings and am saddened when I hear a man state that he is not impotent because he can have an erection using a vacuum pump or that he's not incontinent because he only uses ONLY three pads a day. You can reduce your chance of becoming one of these men by carefully selecting your "treater".
January 28, 2012 marks the 14th anniversary of the beginning of my treatment for Prostate Cancer at Radiotherapy Clinics of Georgia.
My PSA continues to remain undetectable and I continue to enjoy an active life with absolutely NO nasty side effects. In fact, about 4 years ago I started to produce a small amount of ejaculate during intercourse and it has been increasing ever since. It appears that perhaps at least a small amount of prostatic glandular tissue has regenerated, but not enough to produce measurable PSA.
It's really nice to still have a prostate, but one that is free of cancer and still functioning almost as well at 73 years old as it did when I was 30!
For those who choose to be treated, I can not stress enough the importance of finding a treating doctor or facility that has a good long-term track record as supported by actual data collected from actual patients over many years. I am so happy that I am among the 14,000 men who have been treated at Radiotherapy Clinics of Georgia, where for over two decades they have cared enough about improving their treatment results that they have taken the time and expense to ACTIVELY follow up on every patient to see just how well their treatment has worked.
RCOG is one of the very few places who can accurately predict your chances of being cured based on their OWN stats. The first urologist I went to actually lied to me, telling me that my chances with him were as good as if I were operated on by Dr. Patrick Walsh. BEWARE - To quote a fellow RCOG patient, "Just because they wear white coats don't make them all good guys!". [Jack contributed some of the basic "Interpretations" on the TROOP-C page many years ago - others added theirs.]
This month will mark 15 years and three months since I was treated at Radiotherapy Clinics of Georgia and I couldn't be happier. My PSA is still undetectable and everything works perfectly except I am beginning to experience some ED. This may be just from old age (74) or other causes. It would be difficult to attribute it to radiation damage at this late date. I am living proof of precisely why men travel from all over the world to be treated a RCoG. Please note that my PSA as listed is incorrect since the new software for updating our stories does not allow the use of the "less then" (<) sign or entering actual words in the current PSA field.
5987 days (or 16 years, 4 months and 23 days) have passed since my prostate and seminal vesicles were implanted with I-125 seeds at Radiotherapy Clinics of Georgia by Dr. Clint Holladay. The implantation was followed by 35 conformal beam treatments (this was before IMRT so they used custom curt lead blocks to conform the beam to the shape of my gland). It appears that from a curative standpoint, I've made it! My PSA is still undetectable. From a side effects standpoint, I've also been extremely lucky since I had none for 15 years. Over the last year or so my ability to have and maintain a strong erection, but that just might be because I've passed the 3/4 century mark. RCoG has what I feel are the very best long term curative stats ever published in a peer reviewed journal. They even had the guts to submit to, and have them published by, The Journal of Urology (premier journal for surgeons). Now if that's not wiping it in their face, I don't know what is! My advice to newly diagnosed men remains the same as it has for a decade and a half. Find the BEST place that has the BEST PUBLISHED results and go there. I traveled 1100 miles. Believe me..... it was worth it!
It's now been seventeen and one-half years since I started my treatment for Gleason 7 prostate cancer at Radiotherapy Clinics of Georgia in Decatur Georgia and can't be happier that I made that choice. My PSA has been undetectable for over 15 years and I have had no continence or sexual problems at all, except at age 76 a little bit of ED has crept into my bedroom (repaired with Viagra).
To all you newly diagnosed men I can not urge you too strongly to be VERY careful about WHO you choose to treat you PCa. You don't need to to over 1000 hours of research as I did, but PLEASE choose a doctor or clinic that has a PROVEN track record of success, preferably proven by publishing of their long term outcomes in a peer reviewed medical journal.
Look at the PEOPLE doing the treatment and NOT just the TREATMENT PROTOCOLS.
Anyone treated at, or interested in learning more about RCOG from actual patients can visit our group on Yahoo. Just surf to: https://groups.yahoo.com/neo/groups/RCOGgroup/info.
Not much to add to my story. At 18 years past treatment my PSA is still undetectable and I've experienced no side effects from my combined seed and external beam radiation treatment. My experience is not the result of luck, but by studying hard and making a series of logical choices. I really must pitch combination radiation treatment, but only when done by experts. If done properly it does not damage the erectile nerves, so even at 78 years old everything works. Not as well as when I was 21, but with the help of Viagra, "still works" is good enough. Radiation, when done well, does not damage either of the sphincter muscles that control urination, so incontinence is not a problem. Another major advantage is that the muscular layer that surround the prostate is also not damaged, so the pleasure of ejaculation is still present, though reduced because instead of pressing on soft and sponge-like prostate glandular tissue, it now squeezes mostly scar tissue. It still fells really good. Urologists will never tell you about this advantage of keeping your prostate.
Having just passed my 79th birthday, I am particularly pleased to find myself in good health and still cancer free after my combination radiation treatment (I-125 seeds plus conformal external beam radiation) at Radiotherapy Clinics of Georgia in the USA. Nothing much has changed for me since my last update, but I have learned that RCOG has discontinued their research program that resulted in perfecting the protocol that worked so well for me. The Clinic was purchased by a larger medical company and this was probably a corporate decision. I sincerely hope this does not signal the demise of their decade old research program.
I have now reached 20 years since treatment with a still undetectable PSA, no incontinence problems and only moderate ED (caused by old age, not radiation). Thanks to the magic blue pill my wife and I still enjoy a wonderful sex life as I approach 80 years old.
As I approach my 81st birthday (this month) my PSA remains undetectable, where it has been for the 20+ years since my treatment at Radiotherapy Clinics of Georgia. I am convinced that brachytherapy with permanent radioactive seeds remains the very best protocol for actually killing cancer cells inside the prostate while minimizing side effects. When expertly done this provide the most conformal treatment and can be adjusted to prevent damage to erectile nerves and minimize exposure to bladder and bowel. It is also one of the few treatments that can effectively radiate the seminal vesicles, but this requires exceptional brachytherapy skills. Placing seeds in the seminal vesicles also can irradiate a part of the prostate gland that is otherwise difficult to treat. I cannot, however emphasize the need to select a top notch brachytherapist since procedure success is very "operator dependent." After many years of terrific sex, I have recently lost the ability to maintain an erection for very long (although the blue pill helps). This is most probably and effect of old age and not my treatment. One surprisingly interesting thing that has occurred is the return of seminal fluid during ejaculation. Not as much as the "good old days" but enough to add a bit more pleasure to the experience. I attribute this to the fact that a small number of normal glandular prostate cells were not killed by the radiation and have recovered or multiplied. There are not enough to produce measurable PSA. Find a doctor or facility who actually follows up on their patients long after treatment (my clinic required three questionnaires and a copy of my PSA report every 6 or 12 months for 15+ years). Such research indicates a dedication to improving their work and doing the best job they can for their patients.
I was diagnosed on October 30, 1997 and had my I-125 radioactive Iodine implantation on January 27, 1998 followed by conformal beam radiation starting February 17, 1998 and ending 7 weeks later. That's 23 years since diagnosis. I passed my 82nd birthday last week, so it is as appropriate time as ever to look back at the 20+ years that I have had an undetectable PSA, with no long term urinary or bowel complications or any other problems resulting from my treatment.
When asked how I managed to have such great results, I can only attribute it to two things: 1. The research and care that I put into the selection of my treatment protocol and the outfit that treated me... and 2. The extreme care, precision and quality assurance measures exercised by Radiotherapy Clinics of Georgia in treating me.
RCOG has gone though ownership changes and I really don't know if they are still infused with the continuous striving toward excellence that pervaded the organization when I was treated. I do think they should be considered for new patients who are diagnosed with Gleason 7 (3+4) cancer, since when done correctly, no other treatment can provide such a close conformal treatment, when done expertly.
Twenty four years have passed since I was treated for prostate cancer at Radiotherapy Clinics of Georgia using their combined radiation protocol consisting of radioactive seed implants followed by external beam radiation. As you can see from my previous updates, this last portion of my treatment journey has been terrific with absolutely no lasting side effects. At the time I was diagnosed, my Gleason 7 cancer was considered to be more serious than it would be if I was diagnosed today, but given the extreme care and attention to detail exhibited by the entire staff at RCOG at that time, I don't at all consider myself to be "over-treated." I am still a firm believer that the theory underlying the "brachytherapy followed by external beam radiation" protocol developed at RCoG was the very best approach to take at that time, since seeds produced the highest radiation levels while being "conformed" to a very small volume of tissue, hence do not damage surrounding tissue to nearly the extent that beam radiation does. I know that proton beam radiation claims to be able to do the same thing, but am not sure that even with the more precise targeting methods in use today are adequate. I am also skeptical that the Bragg Effect radiation release can be controlled precisely enough to maximize the "kill" within the prostate, while minimizing it to surrounding tissue. The Bragg Effect was discovered in 1947. I studied it briefly in 1958 as a Physics student, and heavily researched it in 1997 when I was making my treatment decision. At that time the Boston proton beam treatment center had shut down and Loma Linda University Hospital was the only place using it and reporting results in peer-reviewed studies. I continued to watch their progress through all publicly-released information, both peer-reviewed and not. Initially they reported results using the "ASTRO" standards to determine freedom from disease. The ASTRO definition was flawed and drastically inflated reported cure rates. When they finally reported their results using maintenance of a 0.2 PSA nadir, the preferred reporting method used by for reporting surgical results (and by RCoG), they were not nearly as good as RCoG's, nor the top proctectomy outfits.
Many changes have taken place over the years at RCoG. This private clinic was purchased by a much larger outfit and the founder, Dr. Frank Critz, no longer had control. I continued to enthusiastically recommend them as a treatment center until their owning corporation shut down their decades-long collection of patient treatment results. It was through the constant analysis of patient feedback results that their "Prostricision" protocol was developed and perfected. When I stopped receiving my regular requests to report side effects and PSA results, it was clear to me that any further improvements to their method of treating prostate cancer would need to be learned from others, since the research part of their own work had died.
Consistently high "cure" rates by brachytherapy are highly depended upon the skill of the brachytherapist. RCoG had developed an extremely rigorous doctor training program to assure that seeds were accurately placed and complimented it with equally rigorous quality control standards for all supporting functions including determination of seed patterns, measurement of the radiation levels of all seeds immediately before implantation, establishment of prostate position before beam radiation treatments.... and many more. I spent 11 weeks in Georgia studying their operation while undergoing treatment (and also working remotely) and was consistently amazed but the extremely high level of quality control over every aspect of their work. I likened it to NASA in its thoroughness.
I still think that patients considering seeds as a treatment should investigate RCoG. Call and talk to their doctors. Make your own conclusions. If they have maintained their standards and still produce the terrific results I have experienced, that is great news. I don't know how they can prove curative results since they no longer do long term patient follow-up, but ask them about it.
At 84 years old and at 24 years past treatment, I couldn't be happier. Every six months my PSA continues to test "unmeasurable." I have enjoyed two decades completely free of urinary or sexual problems but now the ravages of old age have hit. My bladder control is still good, but have started wearing a light pad (sometimes one lasting days) after two slight leakage events. I can still get erections and my wife and I share a wonderfully fulfilling sexual life, though erection maintenance is poor. We are both retired, have done some world traveling, and I still operate a small 34 acre farm in Southern New Jersey. Life is good.
The most importanct advice I can give any newly diagnosed PCa patient remains the same as always... Don't jump at making a treatment decision, find the best place you can to be treated, and try to make sure your doctor has treated many hundreds or thousands of patients with satisfactory results.
Jack Jennings, Sicklerville, NJ
Jack's e-mail address is: jejennings AT comcast.net (replace "AT" with "@")
