When I was diagnosed, my doctors and I were concerned about the possibility the cancer had spread beyond the prostate. That concern prompted us to design a very aggressive treatment plan for me. In other words, triple androgen blockade, external beam radiation and last but not least, permanent seed implants. My treatment was completed more than 7 years ago and my latest PSA (February 2007) showed <0.03 (undetectable). As my oncologist says, I appear to be in remission. That's good enough for me!
My medical provider was an HMO, Group Health of Puget Sound. Group Health policy was to provide a complete physical exam every two years until age 65 and then each year thereafter. The PSA was not included in the exam. In 1993, at age 59, I asked my primary care physician to include a PSA blood test as part of my physical.
My first ever PSA was 2.5 done in 1993. The DRE showed no palpable lesion.
My second PSA was 3.6 done in 1995. The DRE again showed no palpable lesion.
My third PSA was 4.4 done in 1997. My primary care physician found what MIGHT be a very small nodule on the left lobe of my prostate. He referred me to a urologist at the Tacoma Group Health Specialty Center. The urologist did a DRE and could feel no palpable lesion but went ahead with a biopsy. The lab report on the 6-needle biopsy showed 2 of the 6 samples positive for PCa with a Gleason 5+4=9.
The urologist suggested surgery and I was penciled in for RP the latter part of Jan 98.
I had two units of blood drawn prior to the surgery and had almost convinced myself that my "window of opportunity" was rapidly closing so it would be best to get that little hummer out of there as soon as possible.
Exactly one week before my scheduled surgery, I called a friend in Spokane who had surgery several months before. When I asked how things were going he said the operation was a piece of cake however his PSA began a rather dramatic rise within a month of the procedure. He had a Prostascint scan which showed lymph node involvement in two different locations. He is 10 years younger than I am, at least as healthy and had a Gleason 7. As soon as I finished talking to him, I called my urologist and put my surgery on indefinite hold.
I asked for a second opinion (within GH of course). The Urologist I saw at the Seattle GH facility eventually told me he would not do surgery on me because I had such a low probability of a cure. He suggested some form of radiation would better serve me.
Our fun really began shortly after my diagnosis. I joined PAACT, did a lot of reading and over the course of the next several months consulted with many doctors.
One of the consultations was with Dr. Paul Lange, chairman of the Urology Dept. at the UW. He suggested we consider cysto prostatectomy because of the chance that my cancer had already spread to my bladder.
In Feb 98, I told my new urologist (at the Seattle GH facility), I wanted to go on hormone blockade. He OKd a 6 day supply of bicalutimide(Casodex) before getting my first Zoladex injection.
During that 6-day period, we also consulted with Dr. Tim Mate at Swedish who does HDR seeds. When he told us that I was not a candidate for HDR, we actually breathed a sigh of relief because here was a protocol we could cross off the list. Dr. Mate uses a CT scan to place the seeds and I have a metal hip in each side. You can visualize what my CT scan looks like in the area of the prostate--kind of like looking at two headlights approaching at night. He also suggested I continue with both Casodex and Zoladex. I called GH immediately with his suggestion and got it approved. I did pay for several doctor's consultations but in this case it was worth it. GH paid for several months of both Zoladex and Casodex.
I became part of a PCa research program administered by Dr. Gerald Murphy. He set up an appointment for me to see Dr. Haakon Ragde at the Northwest Prostate Institute. Dr. Ragde is a board-certified urologist and had done more than 3,000 seed implants when I saw him. He also told me that I was not a candidate for surgery.
We also consulted with Dr. Israel Barken in San Diego about Cryo. By the time we saw him, I had already begun my CHT after reading a lot of PAACT and other sources claiming at least no serious drawbacks. What I was looking for initially was time to explore my options. However, the more I read and the more people like Mate and Barken I talked with, the more I like the idea of staying on CHT for a year or longer. At Barken's suggestion, I also added Finasteride in June 98. GH would not pay for the Finasteride but my GH urologist did write the prescription and, after checking prices, I bought it from the GH pharmacy.
We went to Loma Linda in Sept 98 to learn about Protons. I was very impressed and decided to get out of GH at the end of the year so I could have my new insurance company pay for my Proton beam therapy at LL. When I asked Cigna to approve LL, they said no because it was still experimental but that I could appeal. I asked LL for documentation I could use in my appeal with special emphasis on their results treating high Gleason guys. They sent me a two and a half page letter, which detailed their procedure but nothing about their success rate. When I talked with the LL Doc, he said his colleagues were not pleased with their data in treating the aggressive cancer guys. When I said if you are not pleased with it, why would I be pleased with it, his reply was something like, you have to be comfortable with your decision. I suggested that he get a copy of the 10 year (at that time) data from Northwest Prostate Institute (Dr. Haakon Ragde) and read it carefully. That data showed a slightly better cure rate for guys with high-grade tumors (treated with both seeds and external beam) than those treated only with seeds.
I had already consulted with Dr. Ragde in June 98 and he agreed to do my seeds if that is what I wanted. After talking with Dr. Korb (radiation oncologist working with Dr. Ragde), I decided to do my external beam radiation in Tacoma. I was willing to drive to Seattle each day to make sure it was done right, however Dr. Korb convinced me that it would be OK for local talent to take care of me.
I started external beam in Feb 99, did five weeks of that (for a total of 45Gy), took a two week break and was seeded with 75 Pd103 seeds on the 6th of April 99 by Dr. Ragde.
I had a PSA done in Feb 98, just prior to beginning CHT (and almost exactly 2 months after my biopsy) which showed a PSA of 6.6. Not surprising after what my prostate went through during the biopsy. Within 4 months, my PSA was undetectable and has stayed at undetectable except for the reading that was done two days after my seeding. That PSA was 0.005. Five days after the seeding, my PSA was again undetectable.
Alayne and I had a consultation with Dr. Charles Bagley of the Northwest Cancer Center in December 2000. Incidentally he is a good friend of Dr. Snuffy Myers who is a PCa survivor and oncologist specializing in PCa. Dr. Barken had suggested some time ago that I talk with him. He was mentioned during the 2000 PCRI conference as having worked with hormonal ablation and chemotherapy (you can read his report on the PCRI website ). I had intended to have a "how goes it" consultation with an oncologist soon and saw this as a good chance to follow through. We spent at least an hour with him (I have it all on tape) and he thinks we had a fine plan of attack. He also indicated that they put their patients on 9 months of CHT before beginning on site therapy.
Incidentally, I had at least 15 DREs done and the majority of the Docs felt no palpable lesion. My biopsy had two of the three cores from the left with PCa and benign tissue on the right. So does that mean I am a T1b or a T2c? Your guess is as good as the Docs.
In January 2001, I asked Dr. Tia Higano to follow my PCa progress. My wife and I consult with her once a year. I have a PSA and testosterone done each 6 months and a complete blood panel done just prior to our consultation with her.
My PSA remains at something less than 0.03.
My side effects during my PCa were pretty much what I had been warned about. While I was on hormonal ablation, my main concern were the hot flashes, weight gain, and breast tenderness. I coped with the hot flashes by wearing cool clothing and avoiding warm, stuffy environments. When my wife and I went to concerts or the ballet, I carried a moist wash cloth in a plastic baggie. When I felt a hot flash coming on, I could almost always ward it off completely or greatly minimize it by using the cool moist cloth on my face. If I were outside working, I would simply let the hot flash take its course and sweat profusely. I did gain about 10 pounds (mostly around the stomach) which has been difficult to loose. I had my body fat checked at the Swedish men's health fair and I am still in the excellent category for my age but I am not as trim as I was before hormonal ablation. I did experience some breast enlargement and tenderness because of the hormonal ablation. In fact, I was concerned enough about the tenderness that my Doctors and I decided to do a Mammogram. That test revealed nothing abnormal and my tenderness went away after a few months.
I have a regular exercise program which includes weights (3 times a week), and either walking or biking 6 times a week. We live on eight acres, which means a lot of physical work. I was able to do everything I wanted to and my wife indicated that I wasn't much harder to live with than I was before.
About mid way through my external beam radiation, I did have slight Diarrhea for a couple of days which I was able to control with one of the "over the counter" preparations. I have a long history of hemorrhoids (I am a retired pilot so I accept that as an occupational hazard). After the external beam radiation, I did notice some increased tenderness of my hemorrhoids. My Doctor suggested a stool softener (docusate sodium) and I have found it works very well to eliminate or greatly reduce any discomfort.
The only side effect I noticed after my seed implant was frequency and urgency to urinate for a month or so. I found, like Snuffy Myers, that I really needed to have a keen peripheral awareness of the nearest restroom for that first month or so. Within 3 or 4 months, my urinary habits had returned to normal. Today, more than 7 years after seeding, I typically get up once a night about 90% of the time. The other 10%, I sleep through the night. I consider that totally acceptable.
I do volunteer work for the American Cancer Society and often have the privilege of counseling men recently diagnosed with PCa. The most important bit of wisdom I can offer is to learn as much as they can about their disease and become an active and informed member of their health care team. If they are lucky enough to have a partner, I encourage them to work through this together. My wife goes with me to my consultations and has been an absolute rock of support. Another important part of my ongoing healing process has been my participation in PCa support groups. I have been a facilitator for the Tacoma Man to Man/UsTOO group for several years and often visit other groups as well.
Since my Feb 07 update: No prescription medication
August 07, PSA (<0.03) and consultation with my Medical Oncologist, Dr. Celestia Higano. Her input is that I appear to remain in remission. Works for me. I had a nice one on one chat with Snuffy Myers while I was at the PCRI conference. He believes he has micro metastatic disease even with an undetectable PSA. I think there is high likelihood that the same applies to my PCa.
Feb 08, PSA (<0.03) I had the privilege of leading the general prostate cancer support group meetings during the PCRI conference, Sept 7-9 at LAX. At each of the three meetings, I made sure the group knew about YANA.
I have my yearly consultation with my Oncologist on Sept 15 -- I'll forward an update then. My most recent PSA was <0.03 taken Feb 09.
I continue to have a twice yearly PSA and a consultation with my Medical Oncologist, Dr Celestia Higano yearly. My PSA remains <0.03.
As part of my blood work in 2008, Dr. Higano ordered a Vit D-3 evaluation. At that time, I was taking 1000 IU Vit D-3. My D-3 level was reported as 37.6. I began taking 5,000 IU Vit D-3 daily to bring my level up to or slightly above 50.0.
October 2009, my Vit D-3 was reported as 40.3. I reduced my Vit D-3 intake to 4,000 IU daily.
October 2010, my Vit D-3 was reported as 49.7. I reduced my daily intake of Vit D-3 to 2,000 IU.
January, 2010, I noticed occasional blood with my bowel movements. After consultation with my primary care physician, I scheduled a colonoscopy. The results were negative for colon cancer. The findings noted "Congested, erythematous, hemorrhagic and inflamed mucosa in the rectum suggestive of radiation proctitis". I consulted with a radiation oncologist. She suggested collecting patient observed data to determine the frequency and severity of the bleeding and then begin daily use of rectal suppositories, Anusol-HC. The suppositories provided incomplete benefit.
When I mentioned the bleeding to Dr. Higano during my annual consultation (October 2010), she suggested I schedule an appointment with an internal medicine physician. During my consultation with the internal medicine physician, he suggested I add fiber to my diet. His recommendation is the consistent use of Benefiber to achieve soft, small caliber stools. If the bleeding persists, he recommends flexible sigmoidoscopy with argon plasma coagulation in an effort to ablate the abnormal blood vessels in my rectum.
I added Benefiber to my diet November 2010. My stools are softer and smaller and I rarely see blood with my movements. My plan is to continue taking Benefiber. If frequent bleeding reoccurs and persists, I will consider argon plasma coagulation. The Benefiber results in the build up of additional gas. I am able to control the gas build up by taking simethicone.
I consider the radiation proctitis symptoms a minor and workable inconvenience. I am blessed to have a low and stable PSA after being diagnosed in 1997 with a Gleason 9. Every breath I breathe and every day I live is bonus time.
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Two daily rounded teaspoons of Benefiber continue to minimize my rectal bleeding. Once or twice monthly I see trace amounts of blood on the toilet tissue. My plan is to continue fiber supplementation, as long as I have minimal evidence of bleeding, prior to on site intervention. In Dr. Myers most recent Forum (Volume 13, Number 12) he states the greatest success in his clinic to control gastrointestinal bleeding has been the use of Leukine. As of this writing, I would probably opt for Leukine before Hyperbaric oxygen or Argon coagulation. My overall health remains good. Saturday, June 9, I plan on completing my 40th consecutive 12K event (Sound to Narrows) in Tacoma. Of the 311 who completed the first STN, I am one of 10 remaining who have completed the course each year since it's inception in 1973. Life is good! Jack
I have a yearly consultation with my Medical Oncologist and I plan on updating my story at that time. My next consultation will be October 14, 2013. I'll send an update shortly after.
I often refer patients to the YANA site. Many have reported back to me with positive comments for what you do.
Thanks for your hard work and dedication to our cause.
I had my yearly blood draw and consultation with Medical Oncologist, Dr. Celestia Higano. My PSA remains <0.03.
During the annual NW PCa conference, Saturday Sept 14, Dr. Mark Moyad spoke about supplements, vitamins etc. One of his topics was dietary fiber. He believes we should rely on a daily serving of wheat bran plus fruits and vegetables to achieve 20-30 grams of fiber per day. Since my bout with radiation proctitus several years ago, I have been using Benefiber to reduce the frequency of blood appearing with my bowel movements. This process reduced the frequency of blood in my stool to one or sometimes two times per week. This represented a major improvement but was inconvenient (2 teaspoons of Benefiber three times a day) and expensive.
On September 16, I started using (daily) one half cup of Fiber One (Kellog) (14 grams of non soluble dietary fiber) in my morning Smoothie. I have not seen evidence of blood in my BM for more than 4 weeks. I estimate my daily fiber intake at approximately 25 grams. This is an easy and relatively inexpensive way to get the fiber I need.
March 2014 I completed a Colonoscopy. During the exam, argon gas coagulation procedure was done to the inflamed area considered to be a result of radiation proctitus. After the coaguation procedure, I had two minor occurrences of rectal bleeding approximately a week apart. Since April, 2014, I have had no occurrences of rectal bleeding. I had my yearly consultation with my Medical Oncologist, Sept 2014. All parameters were noted as normal. My PSA remains <0.03 Jack
I have a PSA blood draw twice yearly PSA remains undetectable at <0.03.
I take 1000mg American Genseng daily to improve my energy level. I use the same product (www.ginsengherbco-op.com) used in the Mayo Clinic clinical trial. I have noted a significant improvement in my energy level.
Jack's e-mail address is: jack7474sr AT aol.com (replace "AT" with "@")