Gary Vance

Gary Vance – TPCSG (Tacoma Prostate Cancer Support Group)

For the last few years, I had been going to the doctor regularly for a yearly checkup and blood work. I also go every three months to get my blood pressure medication refilled and a quick once-over. I’m 47 years old, white, and in good health. High blood pressure was enough of a shock to someone my age, not to mention what happened next. In January ’09, I had a blood test that included a PSA test. My doctor decided that being I was adopted and getting close to 50, we should start including this test. It came back at 2.5. Hey, no problem, IÕm right at the top level for normal. All my other blood levels were within normal levels, so I didn’t give it a second thought. 6 months passed and another routine blood panel, PSA was at 2.63. Hmmm….we decided to check specifically on this in 3 months during my next quick check for BP medicine. Uh oh, my PSA was 3.15 and I was given a referral to an urologist. The urologist and I talked and I decided to have a biopsy instead of watchful waiting. It was my call, and the urologist was fine either way. Late December, I had a 12 core biopsy that was slightly painful to say the least. This was my first ever enema by the way.
I got a call from the doctor to come in and discuss my results. On January 19, 2010, I had no reason to think anything was amiss. I sat down, he opened his folder and I saw the word ‘adenocarcinoma’. My dad died of pancreatic cancer, also labeled adenocarcinoma. I was stunned. He went on to explain the results: 3 cores out of 12 positive, 2 in the left lobe 95%, and one in the right at 5%. I had a gleason score of 3+3=6. He explained that I had a low-aggressive cancer, and that I should do something, fairly soon but I had lots of time, it was slow growing. He was very calm and informative, and explained all the traditional options: Surgery (both types), radiation, cryo, watchful waiting…….
I left fully informed with brochures and a book on prostate cancer, and made my first referral to the radiation oncologist. I immediately went on the offensive. IÕm a computer guy by trade, so I absorbed all the internet info I could find and quickly went into information overload. During the next few months I met with the radiation oncologist and a DaVinci surgeon. I also discovered the Tacoma Prostate Support Group, and other treatments. I discovered Proton Therapy, HIFU (high intensity focused ultrasound), CyberKnife, Calypso 3-D, radioactive seeds, GreenLight TURP, clinical trials, and so much more.
Holy Cow, what was I going to do? I soon realized there are lots of men like me. I talked to a guy at work who had the Cyber-Knife. At the support group, at least one person there had one form or another of each of the othertreatments After talking to the support group and others and absorbing all I could, I came to a few conclusions:
1) I will survive. Gleason 6 is not a death sentence. Sure, I could die in 15-20 years if I chose to ignore it, but I could die on the way home in the car by someone talking on their cell phone and not driving attentively.
2) All the treatments have about the same success rate, give-or-take.
3) The side effects vary, but are predictable and can be assumed. What can I live with?
4) I need a procedure that will allow me to repeat in 10-20 years if I had a re-occurrence.
5) Money and insurance coverage, is this an issue?
Wow! Now I have to decide what is best for me and my lifestyle and my young age. Using these 5 ideas, I came up with a treatment option: HIFU
After finding this, I researched it to death. Dr. Scionti called my personally from NYU. He told me I was a perfect candidate. So did the Surgeon and the Radiation Oncologist.
This time, he was describing things that I had already researched and liked. Non-invasive, short recovery, little, if any side effects…..just like the Radiation Doctor.
But, HIFU uses Ultrasound waves not radiation. There will be no radiation burns, or cancer caused by the treatment. And it will only take a few hours. Turns out he was right!
HIFU is not FDA approved in the USA, so I decided to go to Puerto Vallarta where Dr. Scionti does the procedure one weekend a month. He also travels to the Bahamas for folks on the east coast.
I had a pre-anesthesia physical and had all my recent medical records faxed to the HIFU center in N. Carolina. Once I decided on a treatment there was no second guessing. The men at the Tacoma Support Group told me whatever I decided on, to not look back!
I paid the $25,000 two weeks before my procedure. IÕm on Regence Blue Shield, and will get 60-80% reimbursed in the future.
Part of the preparation before I left was to get all my prescriptions. My primary care doctor gave me these at my pre-surgery physical: Cialis to restore blood flow starting a few weeks after. Vesicare for bladder spasms, Mobic an anti-inflammatory, Cipro to prevent infection, Flomax to relax the bladder. Not to mention my normal BP medicine. How was I going to get through Mexican Customs with more drugs than a dope dealer on the corner? USHIFU said to make sure you keep them in the bottles and if questioned, give them our name and number. But there has never been a problem.
I arrived in Puerto Vallarta 4 days before my procedure to relax and unwind. ItÕs been a long three months…Friday, April 16 is the day before my procedure. Liquid diet, lots of water. I had a few pieces of fruit for breakfast. Then lots of fruit juice and jello.
I met with the HIFU staff at 5pm that evening, she went over what to expect including the dreaded suprapubic (through the belly) catheter.
Dinner was at a fabulous restaurant. I had chicken soup and drank only the broth. Delicious! I also drank several Sol Ceros. That is Sol brand beer without alcohol. Wow, these were good on a warm evening. I was ready. Nothing to eat or drink after midnight.
Now the fun begins. The driver will pick me up at 7am. I have to administer 2 enemas, 2 hours prior. I could barely sleep, I didn’t want to over sleep. 5am, I administer 2 enemas and wonder what the heck IÕm going to do until 7……It dawned on me, it’s April 17th, almost 3 months to the day I was diagnosed.
I shower, make sure I have loose clothes on and have all my paperwork and drugs.
The driver picks us up at 7am and we are greeted at the private hospital by HIFU staff. I am taken upstairs and sign some papers. They give me the standard hospital gown and told me to get ready. I also put on my pre-purchased thigh-high, anti-embolism stockings. This helps increase blood flow and reduce the chance of blood clots. IÕm telling you, I looked ridiculous. But, I was paying for the privilege! I get to meet the local anesthesia doctor, as well as Dr. Scionti and his HIFU staff from the states. The nurse puts an IV in my hand so they can administer the anesthesia.
Hugs and kisses all around and I am walked to the procedure room. I lay down on my side and see 5 people. They will be giving me a spinal epidural so I don’t move. But first they put the twilight sleep anesthesia in my IV. We are chatting about the weather and that was it. I was out. I woke up in the recovery room about 3 hours later.
Apparently, everything went well. My nerves and prostate were clearly defined, and Dr. Scionti says it went as well as possible. I started to stir twice during the procedure and was gently put back under. The nurse explained again the catheter and walked me up and down the hallway. My family and I were discharged and the van driver took us back to our hotel. I had a leg bag attached to my catheter and was draining urine. It was hidden under my pants so no one could notice. It was 2:30 pm and I was done.
I rested for an hour or so and by 5pm I was up and ready to go. We took a long walk and had a beer and some food on the beach. All this 8 hours after having my prostate ablated via ultrasound. Pretty cool! That night I slept connected to a larger night bag sitting on the floor. It was nice sleeping all night without having to get up and go the bathroom.
The next day, I slept in and did more sightseeing. No problems or complaints. I slept with the anti-embolism stockings on. Monday April 19th, I flew home to Seattle and was glad I had the leg bag. I’m now drinking 8-10 glasses of water but didn’t have to get up once on the plane!
I went back to work the next day. I spent the whole day explaining to my friends co-workers how I could be working 4 days after prostate surgery. Having a supra-pubic catheter is a pain, and a blessing. I can open that baby up and pee quickly! However, it’s uncomfortable and the stitch sometimes pulls your skin. I change the dressing every morning and have had only minor bleeding and urine leakage. It is right at the belt line and you can feel it when you walk or move.
5 days after my procedure, I was told to remove the leg bag and clamp the catheter. Wait 2-4 hours and try to urinate normally. OUCH! Pain is normal, and will get better with time. The goal is to urinate 80% and only have 20% left when I release the clamp and finish through the catheter. Today is Wednesday, April 28th. 11 days post-procedure. I’m at the 80% mark. Last night I slept without the night bag and am expected to get up when I need to go. Every 2 hours, like clockwork. Once IÕm only getting up only twice a night, I’m ready for catheter removal. I have made an appointment with my local urologist to have it removed Monday.
In three months, I will have a PSA test and fill out a questionnaire on my experience. I will continue to have PSA tests every three months for a year. Then yearly. I may have just beaten the cancer beast.
If I had to do it again, I would do exactly the same thing. Being younger than the normal patient, HIFU is the way to go. I will have quality of life, no diapers or pads, and my manly function is slowly returning. I have no reason to think I will not be back to normal soon. E-mail me if you have any questions!
Gary Vance
rgvance@yahoo.com

Andy Parks

Andy Parks – TPCSG (Tacoma Prostate Cancer Support Group)

I wanted to share my experience with PCa and specifically the treatment method I choose which is called High Intensity Focused Ultrasound (HIFU).  I will also share my personal story which ranged from intense fear to elationxit has been quite the journey.
Background:
I am 45 years of age and African American.  I had been lax about going for physicals but began to get serious about it a year ago.  My PSA results were considered above average and fluctuated between 4.0 and 6.2.  I was given several rounds of antibiotics and in December, 2006 my PSA dropped to 2.0 and we thought all was okay.
April, 2007
I went to the doctor for a prescription for a sleep-aid because I had two international trips coming up for work.  Because I am over 40 and in a high-risk group (African American) my doctor wanted to do another PSA test even though the last one showed 2.0.  This test showed a PSA of 6.6 and I was referred back to the urologist.  A free PSA test was done and I had a score of 7 (above 20 is desired).  I then went in for a biopsy and received the news on a Friday afternoonxmy stage was T1c and a Gleason of 6 (3+3) and 7 (3+4).  I was devastated, while I was no model for health I ran marathons and stayed fairly active.  I was scheduled for a bone and CAT scan and a chest X-Ray which showed nothing of concern.
Finding a solutionx..
The urologist said that I should have treatment in 3 months or so.  Instead of grieving my wife and I began to do research.  My wife searched the internet in the day while I was working and found out about the HIFU procedure which is non-invasive. My first priority was removing the cancer cells and second was preserving the nerves and having no continence issues.  We did a lot of research and found that for the early stage cancer HIFU had remarkable results.  The downside is that it is not FDA approved here in the U.S.  We did find a Seattle area urologist who is trained on HIFU and was scheduled to do the procedure in May at a hospital in Puerto Vallarta, Mexico.  We scheduled the procedure and then began to figure out how to pay for it (the cost is relatively expensive but there is financing).
Getting readyx..
I have a very busy job and I found myself diving deeper into work to get everything done by the time of the HIFU procedure in mid-May.  I scheduled two-weeks off of work and told just a few close people in addition to my Manager.  I admit I was worried about being considered “damaged goods” or being sidelined at work.  I continued on with my life and even ran a marathon a week before the HIFU procedure.  I tried not to think about the upcoming procedure but found myself having small bouts of anxiety in the evening.   My wife and I went to Puerto Vallarta a few days in advance of the procedure with the intent of sightseeing.  We actually hung out at the pool and beach, enjoyed good Mexican food and talked a lot about our future.  We stayed at the Westin Hotel and enjoyed fireworks on the ocean every night.  While it was a great environment, I could not enjoy it because I was so worried about the PCa.
HIFU procedurex.
The night before the procedure, we met the urologist at the hospital.  Even though we were in Mexico the HIFU staff all came from the U.S.  We were given an orientation of what to expect and asked a load of questions.  The following morning a HIFU van driver picked us up at the hotel along with two other couples who were having HIFU done the same day.  We went to the hospital and our wives bonded in the waiting room.  The procedure itself was painlessxI was given a mild sedative and an epidural. I woke up two hours later in a recovery room with a superpubic catheter in (goes in though the stomach).  We left the hospital an hour later and went back to the hotel.  Because you are on a liquid diet the previous 24 hours, I ordered a filling dinner from room service and slept the rest of the evening.  The next day we relaxed and went to the pool even though I was very uneasy because I had a leg bag on due to the catheter.  We had planned to fly back home in two more days but all I wanted to do was get back to my own home and recover there.  We changed our flight and flew home the following day (two days after HIFU).
The real work beginsx.
I used a leg bag in the day and a larger night bag while sleeping.  I wore this for a week and then the second week began to train my bladder.  I would attempt to urinate normally and then use the catheter to remove any urine left in the bladder.  At first I could only get out a few drops and then within a week I was emptying about 75%.  I had the catheter removed about two weeks after HIFU.  Because HIFU is non-invasive the Prostate tissue is eliminated though your urethra.  This was somewhat painful and there was burning as the tissue came out.  This lasted about one month total.  I also had some mild urgency and this became better with time.  I also began taking Cialis to restore the “manly function”.  For the first six weeks after the Catheter came off, I had a mild case of leakage.  If I could not get to the bathroom quick enough, a small amount of leakage occurred.  All in all the first two months after HIFU were not too much fun but manageable.
Emotions set inx..
Because I was so focused on the task of taking care of the PCa, I did not have the time to digest what was going on from an emotional standpoint.  Once the physical trauma became less I then started to think about “why me”.  I became very depressed and felt like a victim in some ways.  What helped was speaking to men dealing with PCa issues; I realized that there is a fraternity out there and I was not going though this alone.  I also spoke with a therapist and began working on dealing with anxiety.  Things became better and I began running again.  The other benefit was that I began to appreciate the “real” things in my life.  I spent more time talking with family and spending true quality time with my wife.  I started to see that I was changing and my wife said that I seemed to be a “deeper” person.
Now whatx.
Well at this point, HIFU worked – at two and a half months I had a PSA test which came back as “undetectable”.  I have begun running again and have adopted a healthier diet.  I am looking at the PCa as a hill I have to cross in this marathon called life.  I know that this is a long-term issue and I will continue to have my PSA checked every three months for the next year and less frequent after that.
Recommendationx.
I recommend everyone who is dealing with PCa to get informed before making a decision.  Consider all options – it was a blessing my wife found HIFU on the internet. Talk to other men dealing with PCa use a support group like UsToo or a Therapist to help with the emotional side.  Enjoy the people in your life because each day is precious.  Participate in the things we say we don’t have time for, exercise/eat healthy and lastly spread the word on early detection.
Please feel free to contact me if you have any questions.
Andy P
andynparks@aol.com

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