My name is Pete and my wife/RN of 35 years Mary and I have decided to share our PCa Adventure with the good people at YANA in sincere hope that it will encourage those men struggling with the PCa decisions.
When the weather turned cool in the late fall of 2006, I seemed to struggle with taking the evening walk and sleeping through the night without a trip to the head (bathroom). I made an appointment for a physical the month of my 55th birthday. Got a call the next day because my PSA came back as 5.6. I was scheduled with an appointment the next month with a urologist our insurance approved. By the appointment my PSA went to 7.2. In March 2007 Dr. P scheduled and performed a 12 sample biopsy with indications of PIN only. The biopsy was very painful and I bled for two weeks.
The lab for the urologist reported a 7.4 at the next appointment in September 2007. Dr. P recommended another biopsy for January 2008. He shared very little information so Mary and I returned to our primary care MD for a referral for a second opinion. He recommended another urologist and we met Dr. S for the first time January 15, 2008. After the DRE, he said I had a tumor 3-5 years old that had a high probability to be prostate cancer. We were surprised! Dr. S scheduled me for a biopsy using color Doppler ultrasound directed biopsy.
After rescheduling, I had the biopsy in Hilton Head, SC on my 57th birthday on February 15. On 26 February, Dr. S. said that it was definitely cancer and Bostwick Lab confirmed: Gleason 4+4 with two positive cores, PSA 7.4, staged at T3a. Sent for a specialty MRI to confirm prostate cancer and rule out extra capsular penetration, a 'bulge' was found. A bone scan at our county hospital determined no suspicious focal abnormalities identified. Two weeks later Mary and I travelled to Walter Reed Army Medical Center (WRMAC) in DC for interviews with surgeons, medical oncologists, an ED expert to assist with our treatment decision and signed up for the PCRI Prostate Cancer Research Institute http://www.prostate-cancer.org/ Quality of Life study. I also signed a medical release of information and had Bostwick Labs send the pathology samples to WRAMC so they confirmed the 4+4 Gleason and T3a and I was able to get another PSA: 6.08 (no particular reason for the drop in PSA). After the WRAMC team consultation, I was not considered a surgery case and was referred to radiation oncology. This left no doubt to us that we had PCa requiring active treatment. Nomograms helped to verify our risks.
Mary and I do not drink alcohol or smoke. Our diet has always been moderate, high in vegetables and low in fat, with 2-4 walks a day with a minimum daily goal of 10K steps. Mary down loaded hundreds of PCa articles concerning making treatment choices, supplements and diet. Coffee was limited to one decaf in the morning, sugar nearly disappeared from our food groups, soy products replaced milk , tomato products, green tea were increased daily and fat virtually eliminated. We both lost weight, added a multivitamin, calcium with vitamin D, and for me vitamin E/selenium. We were prepared for the adventure by reading books and email articles and by speaking to the few other men that I knew with PCa. There was no PCa support group in our county.
The few people who would speak to me were much older and reluctant to be frank about what they experienced. Doctors P or S and their staffs could not take the clinic time to answer the many questions Mary and I had developed in just a few weeks. Our PCa Adventure had consumed us searching for answers to questions. We finding that we were getting answers and more information from some of the best in the PCa business on line. If the patient were not treated just a few years earlier they had a tendency to be out of touch with current treatments. Based on a article by Dr. Jimmy Holland from his book Living with Hope, I decided to keep a daily record of articles read, treatments quality of life issues and trivia. I started the record on March 31, 2008 (being used as the basis for this story).
After Mary and I returned from PCRI at Walter Reed, which by the way was funded by Senator Scoop Jackson to follow PCa in military personnel and is available to retired military like me. After 24 hours I called Dr.S and asked him to manage my case. We had a long conversation in which he reviewed my case and answered many questions. What I remember most were the statements; that with cryosurgery you
'do not burn your bridges because all treatment options are still open", "cryo is minimally invasive" and "at three months a post surgical PSA will indicate if PCa under control". We realize that all urologists have their personal preferences and with the Gleason of 8, I might have been better served by a medical oncologist. After Mary and I had two conversations with them, with our faith in God, we believed that Dr.S would treat my PCa best.
With a prostate estimated to be of a volume of 34cc, April 1, Dr.S started me on a six week course of hormone treatment, one implant of Eligard with six weeks of Casodex. Had to stop the Casodex after three weeks because of loss of sensation in my hands. More tired than in the past, but Mary and I were determined to continue our sexual activities as long as possible.
Along with the EKG (electrocardiogram) and lab work the pre op included the International Continence Society Survey. We were assured that Dr S had a better than 90% success rate for locally advanced PCa using nerve sparing cryotherapy. Within a year most of the patients had recovered from impotence to the point before cryo. Mary and I were determined to improve the odds and reduce the recovery time.
Before cryosurgery at Hilton Head Island Hospital I went 36 hours on a clear liquid diet and 12 hours fasting. Before the procedure Dr. S reviewed the treatment and recovery with Mary and me answering a lot of questions. Surgery under general anesthetic took about 2 hours. I was fitted with a Foley catheter with leg bag and started on Flomax, Leviquin, Colace, and Darvon - as needed. Sitting up in about two more hours. Mary keep a good account of my intake and output of fluids for 24 hours. There was a lot of swelling reduced by rest, ice, compression and slight elevation. Something that helped me was tub baths, not mentioned in discharge instructions.
Got back to light gardening and walks, but pushed too hard and was back on the couch to rest for three days. Calls from church and family members helped with recovery. Also found out and spoke to an old Boy Scout leader/friend with a Gleason of 9 who was a patient of Dr.S for years. He was a real comfort, but without a doubt Mary was my primary support groupie.
Eight days after surgery the catheter was removed. Small spots of blood continued for about three weeks with sudden urges that keep me on my toes and the toilet seat up. 18 days post surgery Mary and visited our daughter and grand daughter in Florida to see the space shuttle blast off as our first road trip. No problems to speak of. Mary and I continued to snuggle, but three weeks after surgery my vacuum pump arrived, something we had not spoken to Dr. S about, but like I have written, we did intend to reduce the chance of impotence with activity. We had read stimulation early and often was a key to recovery. What a better place for recovery that our beach cabana at Hatteras NC. Mary finished work for a few weeks and I was in between commitments so we decided to recover on the beach, a wise choice. After reading some of the stories at the YANA website, it is from Hatteras that we are writing this letter.
To use a common analogy, there are many tools in our toolbox for treatment of and recovery of PCa. Mary and I have chosen to use cryo because of the information and availability of Dr.S. We have learned to rely on each other as a husband wife team more than most couples might, but our family is not local and there is no PCa support group. Mary and I have been asked by social workers at our county hospital to start up a PCa support and we will consider that after our return next week to 'the world'. I thank God for the blessings of good health, Mary and the good fortune of having Dr. S manage my PCa.
God bless USA(LL),
Pete and Mary G
Sorry to have lost contact with my original YANA support group, Terry and other guys that were so helpful to me in 2008.
Since my Cryo in May 2008 my quarterly PSA have spiked twice in 2009 from 0.7 to 0.12. Then in June 2010 to current 6.04.
After pelvic MRI showed PCa not in prostate but one lymph node, urologist wants to start Casodex with Lupron. Started with oncologist who has ordered CT guided lymph node biopsy-positive for PCa.
Now undergoing Prostascint scan to rule out PCa in bone and to target lymph nodes for radiology.
Yes it has been quite some time since my last up date. I was one of the few Cryotherapy patients and suffered a recurrence, went on ADT for a one year but now on medication vacation.
I am being treated through Active Surveillance, yes that's a treatment; every three months a PSA and urology appointment. It's now been over two years without ADT or any medication. PSA actually decreased to a level (1.33) less than six months ago. No reason to believe Dr. John Adams will put me back on ADT or do a biopsy next week. Almost fully functional, I am volunteering caring for veterans at their homes and at the local VA clinic. Quality of life excellent and living large! (erection nearly every morning)
Greetings my brothers of the bonny-blue ribbon... Difficult to believe that it has been seven years since Dr. Scionti found tumors and diagnosed me with prostate cancer. When I answered the question concerning "current treatment" as "None" that is not correct for I now have been on Active Surveillance since 2012, for over three years. A couple of weeks ago my urologist Dr. John Adams shifted me from four PSA's and visits a year to three per year. He and I agree PSA's and the biannual MRI are sufficient to keep vigilant.
I continue to increase my walking past an average of six miles a day, strength exercise every other day and to eat a moderate diet. My work with Veterans and church community serve is always expanding it seems. Recently Dr. Onik wrote a very supportive article concerning one of the only the long term studies of cryosurgery, reassuring, but I have been a believer before my cryosurgery in 2008. It's just too bad so many of us get sold on using technology and invasive procedures. Cryo is a tool for so many of us boys of the bonny-blue ribbon.
My prayers always to you all and those who care for us...
Wow, it's been another year since my last update, noting really to report. My PSA (which never was above 10) has now doubled over the last two years to 3.97. MRI test in January showed nothing of concern, but I took Cipro for thirty days before my last PSA to rule out an infection. Still my PSA increased.
In three months if PSA continues to increase Dr. John Adams will order a bone scan before considering a return to ADT. Now 65 years old I have been treating PCa as a chronic medical condition for over 8 years. I consider myself fortunate! My health was good before cancer, cryosurgery worked for me, the recurrence handled well and active surveillance meet my lifestyle with minimal risk so far.
If there is a disappointment it is that the community blood bank who said I could give blood after minimally invasive cryosurgery does not allow me to donate after near 13 gallons of blood over 40 years.
Pete's e-mail address is: firstname.lastname@example.org