[Mark makes some strong statements regarding various treatment options. No doubt they reflect his personal views, but there is little evidence to support some of them].
It couldn't possibly happen to me - that's what I thought. Then I got the diagnosis of prostate cancer, and I felt like I had been kicked in the gut. After all, 54 is way too young to have prostate cancer. Boy, was I ever wrong.
I had been getting annual physical exams since around age 40, and that included the PSA blood test and the Digital Rectal Exam. My PSA levels had been slowly but steadily climbing over the past seven years, but there was nothing to be concerned about until May of 2009:
3/10/2003 -- 1.50
4/03/2004 -- 2.20
5/21/2005 -- 2.80
5/24/2006 -- 3.30
5/15/2007 -- 3.70
5/12/2008 -- 3.25
5/30/2009 -- 5.35 << big increase here
2/15/2010 -- 5.80
After the even bigger increase in February of 2010, my family doctor referred me to a urologist, who immediately scheduled me for a biopsy on March 15, 2010. I received the results on March 24, 2010, and of the 12 samples that were taken, three of them came back positive, and the other nine were "probable". I tried to listen as carefully as possible as the urologist described the possible treatment alternatives. Because of my relatively young age and the degree of progression of the cancer, he recommended that I have the surgery. He also described the possible side-effects of the various treatment methods. He gave me a handful of pamphlets to read and sent me on my way to begin digesting everything that he told me. We agreed that the "watchful waiting" wasn't an option, since the results of that were painfully predictable -- the cancer wasn't going away and would only continue to spread. The doctor gave me the names of other specialists for the surgical and radiation treatment alternatives, and encouraged me to speak with them to help me decide which treatment method was for me. Of course, nobody could tell me how to make that decision.
Having prostate cancer sucks, but dying from prostate cancer sucks worse. I only knew that my priorities were:
1. Eliminate the cancer from my body
2. Regain urinary control
3. Regain sexual function
It was clear that no matter which method I chose, I was going to experience some degree of temporary or long-term side effects, including incontinence (loss of bladder control) and impotence (loss of erectile function). I wasn't as concerned about losing the ability to ejaculate; at age 54, I figured I was pretty much done with making any babies. Nevertheless, it was still another thing that made this whole situation really bad.
I then embarked on a quest to learn as much about the treatment alternatives. There is an overwhelming amount of information available about various treatment alternatives, although there isn't much information about the cause. I wanted to know what I had done to deserve this, but I finally decided that it didn't really matter -- I had prostate cancer and I knew I had to eliminate it from my body. I could spend all my time being depressed about it, or I could tackle it head-on. I choose the latter.
I met first with a Radiation Oncologist that used the "brachytherapy" treatment method, which consists of permanently implanting between 40 and 60 radio-active "seeds" inside the prostate. The radio-active material inside the seeds essentially cooks the entire prostate and kills the cancer. [This is a somewhat emotional way of describing what radiation therapies do. They actually disrupt the genetic constructions of radiated cells causing them to 'die'. HIFU (High Intensity Focused Ultrasound) therapy on the other hand heats cells to destroy them] It also substantially cooks the rest of the prostate, and to a lesser degree, the surrounding tissue. That doctor told me that I would need to stay at least 6-feet away from any pregnant women for the first few months, and that I could not have any small children sit on my lap for a while, all because of the radiation. [This is not supported by studies, which show that any 'dose' escaping from an implanted prostate would not cause problems.] I also learned that the radiation could also affect other important surrounding tissues, including the bladder and the rectum, and that there is no way of predicting the extent or duration of the damage to those surrounding areas. [Whilst there are no iron clad guarantees for any therapy, an experienced radiologist can calculate the required dosages and placement of seeds with a degree of accuracy that limits collateral damage.] Although the radioactive material has a half-life of about 60 days, it just keeps cooking inside your body. [The half life of the seeds varies with the type of material used, but whatever material is used, it stops working in the fullness of time.] After hearing all of that, I pretty well decided that this specific radiation treatment was not for me.
I also investigated a "proton treatment" that is available at Loma Linda University Medical Center, which is only about 45 miles from my home in Irvine, California. That treatment method delivers a concentrated beam of high-energy protons to the entire prostate, along with a 1/2-inch margin around the prostate (which includes the bladder neck, rectum and other really important stuff). The proton treatment would require 5 days per week for 9 weeks. Many men who come to that facility from all over the country choose to live in temporary housing during the 9-week treatment process, while men who are local simply commute each day before or after going to their regular jobs during the day. In my case, it would require about 4,000 miles in round-trip driving to and from Mira Loma, and countless hours sitting in Southern California freeway traffic. Still, the proton treatment is radiation like the brachytherapy, so I dismissed that option. [While proton beam therapy is indeed a form of external beam radiation therapy, there are signficant differences in the delivery of the dose. From all reports the outcomes are better for proton beam than photon beam - and both are similar to surgery.]
I then met with Dr. Thomas Ahlering, a Urologic Oncologist at the University of California-Irvine Medical Center in Orange, California (just 6 miles from my home). Dr. Alhering specializes in a robotically-assisted laparoscopic procedure, which is minimally invasive compared to the traditional prostatectomy surgical procedures. He has also pioneered the use of a special cooling apparatus to minimize the trauma and inflammation to the pelvic tissues during the surgical procedure, as well as several hours after the procedure. [For more information about this cooling apparatus, please see: http://www.urology.uci.edu/prostate/pdfs/Dr-Ahlering-WCE-Hypo-Article.pdf]. He took the time to listen to all of my concerns and answer all of my questions. Dr. Ahlering is very specialized and highly in-demand, so he doesn't accept any medical insurance -- it's cash (or check or credit card) up front -- $500 for the initial consultation and $6,500 for the surgery. I'm fortunate that I was able to afford to pay that. As a courtesy, the UCI Medical Center does bill my medical insurance company, and they may reimburse me for some small amount.
I also spoke with a number of men who had been diagnosed with prostate cancer, and they were all very open and candid about their experiences. Almost every one of the men who chose the radiation wished that they chose something else. [This does not seem to be the case with the men who have shared their experiences on this site]. One man told me that after coming from one of the radiation sessions, he was so fatigued that he fell asleep at the wheel of his car while driving home, and got into a serious accident, and he needed surgery to repair the injuries from that accident. Unfortunately, the radiation treatment turns most of his lower abdominal tissues into a combination of "scar tissue and Jell-O", which made the surgery impossible to perform. Other men who chose the radiation treatment methods told me of on-going burning while urination, and a significantly decreased sex drive. I only spoke with one man who chose the proton treatment at Loma Linda, but he also had some on-going side effects. [There is more than one story on the site]
Most of the men who selected the surgery made that choice before the robotic methods were widely available, and most of them had reasonably good results. [Studies have shown no signficant differences in outcome between the results of so called 'open' RP (Radical Prostatectomy) and RALP (Robotic Assisted Laparoscopic Surgery) when these are carried out by equally experienced surgeons] One other man was completely impotent, but he said that his cancer was very advanced and had spread outside the prostate to the surrounding nerve bundles.
I also spoke with one man had the robotic procedure about 3 years ago, and he was very happy with the results. [There are more than 500 men's experiences of RALP on the site - most have had a good outcome. Some have not.] I concluded that with the surgery, it starts out bad and gets better. With the radiation, it starts out not-so-bad, but it continues getting worse.
The bottom line is that I underwent the robotic surgery with Dr. Ahlering on May 17, 2010, including the additional cooling techniques during the procedure and for the next 6 hours after the procedure. I stayed in the hospital overnight and I was released the next day.
I had a catheter in place for the first week while everything was healing. The catheter was uncomfortable, but tolerable. The catheter was removed one week later, and I was able to return to work that day (although I had to take it easy, with no heavy lifting). I also had to wear absorbent pads to protect my clothing, but I was able to sleep through the first night without any leakage. One week after the catheter was removed, I had regained about 90% bladder control, with only minor leakage that happened after coughing, sneezing, laughing or standing quickly (without first contracting the pelvic muscles). Doing several hundred Kegel exercises each day certainly helped with regaining urinary control.
The pathology report indicated that the mass of the prostate was 46 grams, and that malignant tumor was approximately 10% of the prostate. The Gleason score for the actual tumor was 4+5=9, along with a staging of T2C, both of which were higher than the original biopsy findings. But the tumor was completely contained within the prostate, with excellent margins (nowhere near the outside edges). I still need to wait for the follow-up blood tests after 3 months to ensure that the PSA levels have dropped to near zero, which will confirm that we got it all.
At the time I'm writing this, it is exactly three weeks after my surgery, and I have regained substantially all urinary control and I do not need any pads. I still need to contract the pelvic muscles before I stand up, but I'm told that will continue to improve. Dr. Ahlering is very pleased with my progress, and we expect that substantially all sexual function will return at some point, although there's no way to know exactly when that will happen. It could be weeks or months, maybe even up to one year. In the meantime, I am taking 25mg of Viagra each day to help maintain good blood flow and help with the recovery. [See Use It Or Lose It for more information on this approach]
The past three months have been the most challenging time of my life - physically and emotionally -- but I am a cancer survivor. I've also learned more about the importance of taking good care of yourself. I'm eating better and spending some quality time on the treadmill.
I would be happy to talk with any men who are facing this most difficult time.
It has been just over 3 months since my surgery, and I feel great. The recent blood test showed my PSA level to be undetectable (less than 0.10 ng/ml). Bladder control is essentially back to normal, although a drop or two may still leak when I cough, laugh or reach for something heavy, unless I tighten my lower pelvic muscles first.
Sexual function is also returning slowly but steadily; about 50% without any Viagra, and about 75-80% with a full dose (100mg) of Viagra. My doctor is very pleased with my progress so far, and he expects me to have a full recovery.
Overall, I'm confident that I made the right treatment choice for me.
It has been one year since the surgery, and the results are extremely good. PSA is undetectable, and all bladder control returned to normal several months ago with no leakage at all.
Erectile function has also substantially improved: 100% with 100mg of Viagra, and better than 80% without any drugs (and continuing to improve). I do miss the ability to ejaculate, but I'm sure I'll learn to accept that.
The emotional impact of this treatment has been worse than the physical impact, especially the temporary loss of sexual function. However, I still believe that completely eliminating the cancer from my body was the correct treatment for me. I'm also extremely fortunate to have found one of the best surgeons in the world (along with the advanced surgical techniques such as the cooling device) so close to my home, which I'm sure made a real difference in the results I've achieved.
It's been two years since my surgery, and my PSA is still undetectable. Bladder controller is completely back to normal, and sexual function is 100% with the assistance of Viagra or Levitra, or about 90% without any drugs. For me, knowing that the cancer is completely removed from my body far outweighs the impact of the side effects. The emotional burden of dealing with on-going treatments and their side-effects would have been far more difficult for me to handle.
As part of designing and implementing the new database structure for this website, I've had the opportunity to read every one of the more than 1100 stories that have been posted here, and I am so impressed with how many men have been willing to share their experiences so openly. I'm also honored and humbled by Terry's expression of appreciation for the new design. I'm glad that I was able to help Terry keep this site running. [Without the help of the all the folk who put up their hands when the call for help went out - see ABOUT US - the site would have been mothballed. They enabled the site to keep running, but Mark made it work so much better and all the 1,000+ visitors who come to the site each day should be grateful for that.]
Within the last 6 months, two of my friends have been diagnosed with Prostate Cancer, and they came to me asking for my advice. I referred both of them to the same doctor that did my surgery two years ago, and they underwent the robotic laparascopic procedure. In both cases, the progression of their cancer was more advanced than mine, and in one case, additional chemo and radiation has been necessary. Another friend who had an open prostatectomy more than a dozen years (but with positive margins) is now dealing with the effects of metastasis into his bones and surrounding pelvic tissues, and his prognosis is extremely dim.
I am hopeful that someday soon an actual "cure" can be found to reverse and eliminate this disease, rather than just applying "treatments" that carry with them a variety of side-effects (both physically and emotionally).
It's been exactly three years since my surgery. Urinary bladder control has been normal for almost two years, and erectile function is about 95% without any pills, which is pretty good. It's not the way it was prior to the surgery (and it never will be), but it's an acceptable trade-off for eliminating the cancer from my body.
The next step is to address the low Testosterone level. Because of the Gleason 9 score, my doctor had been reluctant to take any action over the past three years, but now he thinks it's safe to do so. I'm looking forward to seeing if that helps. Otherwise, all is well.
I'm also very pleased with the new database system that we launched in early 2012. There have been only a few minor problems, all of which were easily fixed. The processing of new or updated stories has now been fully automated, and that has eliminated more than 98% of the time that Terry had been spending to process those stories. Now, we simply download a daily backup of the database, which only takes a few moments and a few mouse clicks.
We also anticipate changing to a more powerful and more reliable web-hosting service in the near future to keep up with the ever-increasing traffic load from visitors to the YANA website. [This was accomplished in mid-June of 2013 without any down-time] At Terry's request, I have also taken over the responsibility for sending out the hardcopy printed versions of the "Strange Place" booklet to anyone in North America who requests one. That saves a significant amount of postage expense from Australia, which allows us to more efficiently utilize the donations that we receive on this site.
Best wishes to all YANA members.
It's been just over 4 years since my surgery. The latest PSA test results are 0.03 ng/ml -- essentially undetectable. Everything else is good. Best wishes to all YANA members.
I was just informed of the passing of Terry Herbert, who was diagnosed with Prostate Cancer almost 19 years ago and fought a good fight. Terry founded this site in 1999 to provide information and comfort to men (and their partners) that have been diagnosed with Prostate Cancer. Terry signed every e-mail with the tagline: "Prostate men need enlightening, not frightening".
I got to know Terry shortly after my diagnosis in 2010, and although we never met face-to-face, we developed a very close friendship through Skype and e-mail. I worked closely with Terry and a few other men to implement an automated system for processing new and updated Survivor Stories, thereby cutting Terry's daily workload from many hours to just a few minutes. The new automated system continues to work smoothly.
As one of his final wishes, Terry asked me to take over the ownership and day-to-day management of this site, and I am honored to accept that responsibility. I am overwhelmed with the outpouring of accolades for the work that Terry did, and the number of very generous donations in Terry's memory to help keep this site running. There are on-going costs, including the web-hosting service, the Discussion Forum, and printing and mailing costs for the Strange Place booklet, which I will continue to send out at no charge to anyone who requests it.
Five years after surgery, my current PSA is 0.02 -- essentially undetectable. All is well.
I started a new personal endeavor earlier this year -- I am studying for my Private Pilot's license. I had my first Solo Flight on May 24, 2015 -- it was incredible!!! I still have many more months to go before I get my full license, and then several additional months until I get my Instrument Rating.
There is life after PCa.
PSA continues to be undetectable. All is good. I still need annual PSA tests, but I only need to visit Dr. Ahlering once every two years.
Completely unrelated to PCa -- I passed my Private Pilot license exam.
Mark's telephone number is: +1 (714) 357-1187
Mark's e-mail address is: firstname.lastname@example.org