Roger Cory

Roger Cory- TCPSG (Tacoma Prostate Cancer Support Group)

With my family history of prostate cancer (my dad, younger brother and uncle) and as an aviator in the USAF I was dedicated to getting an annual physical to include a PSA blood test and a DRE.

In 1997 my PSA showed a slight elevation. A resultant biopsy showed no sign of cancer.  There were only 6 samples taken. In my mind I am convinced I probably had cancer at that time, but it went undetected.

In 2001 my PSA reached 5.5.  A biopsy with 6 samples resulted in a diagnosis of PCa by Dr. Modarelli on October 4, 2001. The Gleason was 3+3 for a 6.  Adenocarcinoma was found in the right side in one core.  There was no evidence of perineural invasion.

I had been doing research since the original concern in 1997 and had read the Andy Grove article in Fortune magazine on his brachytherapy treatment, Dr. Patrick Walsh’s book “Guide to Surviving Prostate Cancer” and exchanged emails with author Joe Lintzenich who wrote “Oh No, Not Me”. He was a patient of Dr. Catalona in St. Louis. Dr. Catalona also performed the surgery on my brother and was a protégé of Dr. Walsh.

Dr. Modarelli recommended surgery, but suggested I meet with Dr. Haakon Ragde who had performed over 3000 brachtherapy procedures. He believed I was a good candidate.  I decided to have that procedure and it was performed on January 17, 2002 at Northwest Hospital in Seattle.

I had a 152 seeds implanted. I experienced some issues with urinary tract infection and subsequently had to have a TURP (Trans-Urethral Resection Procedure) in April 2002.  I continued to experience urinary issues including urgency for some time.  This was ultimately corrected with exercise and medication.

I continued to have quarterly PSA tests.  In October of 2007 the PSA was starting to slowly rise from a sub 1.0 reading to 1.63 in June of 05, 3.83 in July of 06, 4.4 in Feb of 07, to 6.92 in July of 07.  With this increase I had a biopsy in October of 2007, which showed no sign of PCa.

A prostascint scan in October 25 found a suspicious 9 mm in the right external iliac node.  Having been diagnosed with recurrent PCa by Dr. Finnerty and after meeting with Michael J. McDonough, Oncologist, radiation treatment was ruled out as a viable treatment. I was placed on an intermittent androgen deprivation (Lupron) program in November of 2007.

My treatments have effectively kept the PSA below 4 where it drops dramatically i.e. below 1.0 after each treatment.  I continue to be active, playing golf at least once a week (weather permitting) and an exercise routine of walking and light weight work.

I continue to be vulnerable to UTI (Urinary Tract Infections) and though not suffering from incontinence I cannot go longer than 1 1/2 hours between voiding and get up between 3-4 times per night.

I live with a positive attitude, belief in God and cherishing time with family and friends.

Robert Hammar

Robert Hammar – TPCSG (Tacoma Prostate Cancer Support Group)

My PSA went up a few points in early 2005 (at that time I was 72), so I had a biopsy done. After my samples were examined by three labs cancer was discovered in one sample. I chose to have my prostate removed via laparoscopic surgery at Virginia Mason.

For the next three years I dealt with incontinence. I am a motivated patient. I tried physical therapy (PT) first with only very modest results. After that I had “sling” surgery and had more improvement than with PT, but was still dealing with incontinence. Just over a year ago I had artificial sphincter surgery and I am dry at last!

Here are a few things that helped me and may help you:
* I maintained open communication with my wife and family.
* Being hard of hearing never helps. I asked my wife to attend appointments with me in case I missed something and so two sets of ears could hear all of the instructions and information.
* I attend support groups, which I continue to find tremendously helpful. Even if you think you are not a support group kind of guy you may want to give it a try. Or, find out when certain topics will be covered and attend when something is of interest.
* From time to time I called members of the support group. It helped to have someone listen and sometimes steer me in the right direction.
* I paid out of pocket for a one-time consult with a urologist at an academic medical center. She was able to give me helpful information and referrals to clinicians that felt like a match for me.
* I created a notebook where I keep information about my medications, medical history, surgeries (including those not related to prostate cancer), reports, test results and resources.
* I spent time researching incontinence products (from clamps to pads). I kept trying different products until I found what worked for me. I am happy to share my resource lists.
* I worked in partnership with my providers. At first I was frustrated that they did not know much about products that might be helpful. They were focused on diagnosis and treatment. The nurses were focused on post-surgical care. Nobody was focused on care issues after the post-surgical period. When I went for a checkup I shared my feedback with the providers and the results of my research. I hope they are doing a better job of providing care for the entire journey of each patient. Be proactive – ask questions and speak up – for the health of it!
To download my Tips and Products for Dealing with Incontinence Related to Prostate Cancer, click HERE.

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

Joseph

Joseph – TPCSG (Tacoma Prostate Cancer Support Group)

My story should be entitled, “Don’t let the low PSA score stop you!” I say men shouldn’t solely take just the PSA check without the Digital exam when looking at your prostate. I had a PSA of 2.9 when I was diagnosed with Prostate cancer last March 2009. In fact my primary doctor had a nice chart of my PSA scores last five years with hardly any peaks and usually around 2.0.. Seven years ago I did have a biopsy thru the VA when the symptoms were bad (going to bathroom a lot and erection problems) and the PSA was high. Two samples with no cancer found I went on meds and everything was fine. So fine I thought I stopped taking the digital exam after a couple of years and just relied on the PSA. Last year I had a new primary doctor thru MultiCare and in the initial visit he asked all the What’s going on with you questions?, and I mentioned starting to make more trips to the bathroom and not having the erection the way I want. (I actually thought I was just getting old and my high blood pressure pills were causing these symptoms since the good old PSA was low.. New Dr says no, the pills I’m taking shouldn’t be causing those symptoms, how about a digital exam? I didn’t want to but did anyway. Dr says it didn’t feel right and he referred me. The urologist he referred me found I had prostate cancer. Man was I shocked. With his biopsy of 12 samples there was some cancer in 10 samples. However, what was good for me was that my Gleason score was low I believe 7. The urologist performs the Robotic surgery and he told me about it. I also given information to digest. Also I made an appoint with radiology and chatted with that surgeon. In fact I went back to the VA spoke with the urologist there (who also had prostate cancer and successful surgery) and got appoints with two additional surgeons. One doctor was for total removal and one for seeds implants. Yeah I had received plenty of info, went on the web, and talked to plenty of doctors. One quick joke, one doctor thought I was coming in for surgery and was literally trying to check me in. I explained to him I here to meet him and talk about the procedure first. Didn’t use him. I went with the first urologist at Multi Care and the Robotic surgery because I did feel more comfortable with him. I also like what I researched on this procedure, I wanted my prostate totally removed since the biopsy showed cancer in 10 of the 12 samples. I was lucky as well to find a guy close to my age that had the procedure a year prior to me. He had nothing but good things to say. He was away from work for only a couple of weeks. I think this procedure should be examined if one is looking at which procedure to have because it went well for me, I went in in the morning for the operation and was walking around that evening. I went home the next day. I only had to wear Depends ( diaper) for less than a month. I was able to have sex in a month. The down time with this procedure was as advertised for me. But I understand that recovery is an individual thing and I have been truly Blessed. My urologist calls me his poster boy for recovery and he and my wife cautions me about letting folks know how well recovery went for me. I would say that because of my age of 55, my general health, both physical and spiritual, and my preparedness for the operation helped me. I believe in God and prayed often. I started jogging. And I started doing those Keg el exercises. These things helped me a lot prior to surgery and after. Now I’m cancer free with no PSA score and willing to pass on my story.

Joseph
jwill10122@aol.com

Don Muridan

Don Muridan – TPCSG (Tacoma Prostate Cancer Support Group)

In Febuary of 2009 at the age of 42 I was having a routine physical exam by my M.D. My PSA came back elevated at 8.66. My MD referred me to an Urologist where a biopsy was performed. Well, I received the phone call from my urologist about 3 days later. I’ll never forget this day. I was driving when I took the call. I remember joking with my doctor saying “so what’s the good news?”. He said, “Well, I am sorry but 4 out of 12 cores came back positive for prostate cancer, I need for you to come in asap so we can discuss treatment options”. I remember immediately pulling over and just thinking “how can this be happening”. It was sort of surreal.
I visited with him a couple days later and he recommended having surgery (Da Vinci). During this meeting I had a list of questions and just felt he was a young doctor, great guy but if I was going to have surgery I wanted someone with more experience. I asked him if he had to have the same surgery who he would choose. He immediately referred me to a prominent surgeon in Seattle. Well, I did my research and this surgeon was probably one of top surgeons in the country who specialized on Da Vinci Robotics.
I met with him and we scheduled a surgery date. However, before I even met him I was diligently doing research about PCa, treatment options and statistics. I came across proton therapy and after joining a group online and asking many questions plus research I decided to cancel my surgery date. It seemed to me that the 5 to 10 yrs disease free statistics were the same as surgery (for localized PCa). Plus proton therapy treats not only the entire prostate but the surrounding area. Also, quality of life issues were more favorable vs surgery. I am scheduled to start proton therapy at Loma Linda Mid May 2009.
I am anxious but also a little nervous all at the same time. I can’t explain my feelings. I have no symptoms, I’m completely healthy. I workout regularly, run, hike, ski and etc… I have led a fairly healthy life style. I was even a vegetarian for about 15 years. My life style is very active/athletic running multiple marathons etc.. I don’t feel like I have cancer never mind I am now technically a cancer patient. It’s absolutely mind numbing this is happening. What I have realized this disease doesn’t discriminate. It may sound like I am complaining here because I sorta am but in real life with family, friends and my employees I am upbeat and I downplay my situation. I don’t want my loved ones to worry and I really do think in an odd way if you’re going to have cancer this is a better one to have since it has a high cure rate. I am optimistic I will beat this. My link to PCa is probably genetic since my grandfather passed away from PCa years ago.
Well, this is my story to this point. I didn’t plan on taking this type of journey but since I’m here I pray and I mean really pray this journey turns out positive. Maybe I can turn this into a positive experience by helping other taking this journey. Feel free to contact me if you wish. I will do another update after my treatment starts. God bless.
Update Sept 2009 (story continued)
Well, its September 2, 2009. My last day of treatment was on August 7, 2009. I had 45 treatments (all protons, no photons, Gantry #3) at Loma Linda Medical University. My doctor was Dr. Bush. Before my treatment started I was a little concerned about being put on hormones because I took another PSA test at my Urologist office back home. My PSA came in at 11.8 (yikes!) from 8.66 psa. I think it was higher because my biopsy was only 8 weeks prior which probably affected the PSA test. When I arrived at Loma Linda for my treatments Dr. Bush had me take another PSA test. My new PSA test now came in at 9.8 (go figure??). I heard that if your PSA is over 10 and GS 7or higher you’re a candidate for hormones. I was very pleased when Dr. Bush told me “no” your not going on hormones. I have to say my treatments were fairly uneventful concerning side effects. Starting around treatment #15 I felt a slight burning sensation when I urinated but nothing that ibuprofen couldn’t help. I don’t have any ED or incontinence issues. My experience at Loma Linda was a very good one. The staff was very kind and caring. I attended some of the support groups on Wednesday nights which are awesome and entertaining. I was initially the youngest guy receiving treatments but around week 2 I loss that honor to a 37 year old from Spokane :). I spent a lot of time training at the Drayson Center, running and cycling. I met another guy from Germany (also a patient and runner) and we ran every day on the Santa Ana river trail (about 2 miles from the hospital). Since i’m originally from southern California it was truly a radiation vacation for me because I was able to visit old places, visit new places, see old friends, make new friends and seeing my father weekly was awesome.
Besides all the fun I had and you hear about (i.e, radiation vacation). I do realize the seriousness of having PCa and the bottom line is we all just want to be cured and nothing else really matters. My choice of proton treatment over other forms of treatment is a decision I cannot 2nd guess. I don’t have any regrets and I had to do it all over I would still choose this form of treatment. I didn’t I choose robotic surgery because I wanted not only my entire prostate treated but my margins and seminal vesicles as well. Surgery in my mind would only remove my prostate but what if it’s in the margins or seminal vesicles? Surgery per my GS and PSA statistics wasn’t enough. This was the reason why I chose proton radiation over surgery not because it’s invasive. Secondary decision factors were quality of life issues. Proton has a great record for having low ED and Incontinence challenges. Like all other treatments I will have to monitor my PSA for the rest of my life. My 1st PSA test (post treatment) is scheduled in December. I’m obviously hoping and praying its low. It can take up to 2 1/2 years to reach your nadir after this form of treatment.
I was thinking the other day about how to define myself having cancer when people ask questions. I’ve been feeling awkward when people ask “how are you feeling?” “how is your cancer situation?”. I didn’t know how to answer these questions. I would love to say “oh, i’m totally cured!!” It dawned on me…..I was a cancer survivor starting the last day of my treatment. Everyday for the rest of my life starting August 7th (my last day of treatment) I am a cancer survivor. So when people ask me about my cancer I tell them “I am a cancer survivor”. It feels good saying this.I will keep updating this site after my PSA test. Please feel free to contact me for any questions. I do wish everyone my best.
Livestrong,
Don Muridan
donm@netventure.com

Bob Bohlman

Bob Bohlman – TPCSG (Tacoma Prostate Cancer Support Group)

My name is Bob Bohlman and I was diagnosed with Prostate Cancer in July of 2008.
In December of 2007 my PSA was 4.8 up from 4.2 a year before. In January of 2008 it had gone up to 5.03 and in May of 08 it had risen to 5.03.
I was referred to an urologist in Tacoma who took a biopsy which showed a PSA of 6.33, my Gleason was 7 (4+3) and there was cancer in 30% of 2 cores. I also had an MRI and CAT scan or my spine and lumbar to see if the cancer had left the prostate. This was followed by a full bone scan of my entire body and a Lupron Shot good for 90 days of pure hell.
They recommended that I opt for 5 weeks of radiation and then two sessions of temporary seed implants with high doses of radiation. This did not appeal to me for several reasons, the length of time and also the side effects and risks of incontinence and ED.
My wife and I opted for a second opinion and went to see Dr. John Sylvester at the Seattle Prostate Institute. There I had and ultra sound of my prostate which basically confirmed the cancer. John recommended that I have permanent seed implants which we elected to do. Several reasons, it was a one shot deal and the side effects and results were more favorable in our opinion over the other options. We only considered these two, although we studied several others.
On November 25th 2008, I had 38 needles with 148 seeds of various levels of radiation implanted. I was in and out of Swedish in one day although due to lack of feeling in my butt would have liked to have spent the night. Went back the next day for an x-ray to locate all 148 seeds to make sure none had escaped the prostate. My PSA was .004.
The next 3 months had their moments of discomfort mainly with urination however over time they have improved substantially, although I try not to be too far away from the bathroom and still wear pads. The discomfort had basically disappeared but the leakage is still there but not serious.
As of this writing I am scheduled for my 6 month follow up at which time I will get another reading on my PSA.
I would highly recommend the permanent seed implants and the Seattle Prostate Cancer Institute and Swedish Hospital.

Bob Bohlman

Willie Stewart

Willie Stewart – TPCSG (Tacoma Prostate Cancer Support Group)

My Prostate Cancer Journey

My Prostate Cancer journey began in August of 1991. While I was doing my exercise program at the YMCA, I was approached by a fellow member. We were both regulars and he had not seen me for two weeks. When he asked me where I had been, I repliedmy absence was because of my brother’s death in Texas due to prostate cancer. He encouraged me to get a PSA as part of my next physical exam. After doing some reading on prostate cancer, I realized African American men have the highest prostate cancer death rate in the world. I encouraged 4 of my brothers and 5 first cousins to also complete prostate cancer screening.
During my next annual physical in 1992, I asked Dr. Weatherby, my primary care Physician, for a PSA blood test in addition to the digital rectal exam. My DRE results noted my prostate gland as without nodularity, induration or asymmetry. My PSAwas elevated at 25.
I was referred to Dr. William Dean for a biopsy. The biopsy results were positive. For prostate cancer with a Gleason score of 5. My prostate volume was 52.64cc. My bone scan was negative. If I had elected no on site therapy, my probability of progression was projected at 5-10 years.
At the time of diagnosis, Nov 16, 1992, my age was 56 years, 9 months. My IPS score 35, QOL index 6, SHIM score 29 and TPSAD 0.37.
Dr. Dean performed a radical prostatectomy Dec 9, 1992. Pathological findings revealed no prostate cancer in my lymph nodes or seminal vesicles and negative surgical margins. My tumor was found within my gland. There was extensive prostatic intra epithelial neoplasia found within non malignant glands. In the portions of the gland sampled, the overall percentage of gland which represents tumor estimated 30-50%.
It has been 16 years since my treatment. My most recent PSA was Jan 23, 2008 and was undetectable (less than 0.01). I take 2 mg of DETRO LA at bedtime to control leakage at nite only. I am impotent.
I believe the Tacoma Prostate Cancer Support Group is the best thing for assisting me in knowing that prostate cancer can be defeated.

Gaylord Mingo

Gaylord Mingo – TPCSG (Tacoma Prostate Cancer Support Group)

My Prostate Cancer Journey

My rising PSA became a concern in May 2005. A biopsy of 12 samples showed cancer in one sample, Gleason score 3+3 and PSA 5.9. My urologist recommended surgery. I decided to hold off until I could gather more information.

One of my better lifetime decisions was to join a local support group. I found a group on the internet. There were two organizations that had support groups at the time, “Man to Man” and “Us TOO”. The Tacoma group turned out to be a combination of both. I read stacks and stacks of materials sourced mainly from the group. But the personal experiences of the men in the group were even more valuable.

I elected to do a “Watchful Wait” while gathering more information and trying several other naturopathic approaches. I incorporated Dr “Snuffy” Meyers clinical testing based, diet and supplement regime. The diet follows the Mediterranean approach, lots of fruits, vegetables, whole grains, fish, poultry, olive oil, minimal fat, sugar, red meat and dairy. The supplements are; vitamins D, E, Selenium, Omega 3 and Soy Isoflavin. Based on clinical testing, I added a glass of pomegranate juice mixed with red grape juice daily. I also include a sort of meditative conscious healing visualization along with a naturopathic practitioner harmonic pressure point treatment.

Three years later, my PSA has not gone over the 5.9 at diagnosis. I have it checked at three month increments. It has been quite up and down with a range from 1.9 to 5.1. The average is about 4.0 and last check, April 2008, it was 3.1. I plan to continue this regimen as long as the PSA remains low.

I am happy to trade notes regarding this disease with anyone.

Please call or email.
Gaylord Mingo
253-759-5932
oicu812@harbornet.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

Jack Glatz

Jack Glatz – TPCSG (Tacoma Prostate Cancer Support Group)

CRYO-THERAPY
One Man’s Journey – My Battle with Prostate Cancer
By Jack A. Glatz
“Hello – Mr. Glatz?  This is Doctor Modarelli.  I’m sorry to have to tell you this, but your biopsy results came back positive.  You have Prostate Cancer.”  These are the words that no man ever wants to hear – but if you live long enough, you will hear them!  Doctors and other experts will tell you that eventually, virtually all men will potentially develop Prostate Cancer (PCa).  The only reason we don’t all die from it is that something else kills us first – or we get PCa and then cure the disease.
There is the “80/80” rule that experts tell us about.  By age 80 years, 80% of men alive have (or have had) PCa, and the other 20% will get it – if they just live long enough.  So as you can see, this is a very, very serious and pervasive disease that every man must at least gain some knowledge of, and become educated about, in order to successfully deal with PCa when and if his time comes.
Prostate Cancer is not only a potentially killer disease that can take you life; it is also a terrible disease that can drastically degrade your quality of life – if your treatment for the disease carries with it the dreaded side effects of incontinence and/or impotence.  There is also the danger of “collateral damage” to other internal organs or tissues (colon, bladder, sphincters, etc.) if external or seed radiation is the treatment method used.  Now, medical science has come a long, long way in minimizing these terrible side effects of radical surgery and radiation in the treatment of PCa, but the incidence of these side effects is still (in my opinion) way too high.
Let me stop right here and declare that – I am not a Medical Doctor, and the facts and opinions expressed here are mine alone.  I have gained knowledge and opinions about PCa and treatments for PCa from extensive personal research and personal experience.  Sox with that in mind, let us proceed.
Cryo Ablation (or cryo therapy) of the prostate (killing cancer by rapid freeze and thaw cycles) is not a brand new treatment.  It actually started back in the 1960’s.  Back then, Doctors used liquid nitrogen to do the freezing procedure, and the quality of the ultra-sound imaging used to place the cryo-probes wasn’t nearly what it is today.  Plus, the use of urethral and nerve “warming” probes to protect tissue to be “spared” was practically non-existent compared to today.  So in the 60’s, although cryo worked for killing the cancer, the side effects were too great for cryo to be widely accepted.
Now comes the 1990’s.  Even though the cryo tools and procedures of the 1960’s were largely abandoned, the cryo concept survived and thrived.  With the great strides forward in computer and ultra-sound technology in the late 80’s and early 90’s, cryo therapy was resurrected, improved and perfected.  Today, cryo therapy is performed using state-of-the-art computer controlled procedures.  Computers map the prostate and recommend pinpoint placement of the freezing probes to obtain maximum cancer-killing effectiveness.  Argon gas is used for the freezing process, and precise temperature sensors and warming probes are used to protect tissues and organs from being inadvertently damaged in the cryo therapy treatment process.  Warming probes are used to protect the urethra, and nerve-sparing procedures and warming probes can be used to protect erectile nerves and preserve potency. Cryo therapy has evolved into what I now consider to be the uncontested, premier treatment for PCa.  In the mid-90’s, Medicare fully approved cryo therapy for primary and “salvage” treatment for PCa.  (Salvage treatment is using cryo on patients who had undergone [and failed] other PCa treatments)
Now, first and foremost in every man’s mind when considering a decision on PCa treatment is: does the treatment work?  I can tell you that recent long-term statistical results show that cryo therapy’s success is equal to or better than radical surgery or external and seed radiation – especially for higher Gleason scores (7 or higher).
Next in decision priority is:
a. Low or no side effects (incontinence/impotence and collateral damage).
b. Ease and speed of recovery after treatment.
c. Flexibility – can the procedure be repeated or can I employ another treatment if the first attempt is unsuccessful.
If you will refer to the “summary considerations” sheet at the end of this article, these decision points are explained in greater detail.
My own personal experience with cryo treatment was simply outstanding.  You can see from my medical history (also at the end of this article), I did not make my treatment decision lightly or in any great hurry.  I followed my own advice and really did my research and homework before deciding on cryo – one of the best decisions of my life.
I had my cryo treatment on 3 February 2004 (Tuesday).  I was released from the hospital the next day (Wednesday).  I took Thursday and Friday off from work.  I went back to work (financial management) on Monday morning, February 8th.  I removed my own supra-pubic catheter about two weeks later.
On 21 April 04, I returned to Dr. Hedges’ clinic for my post treatment follow-up.  The results of the check-up showed my PSA (Prostate Specific Antigen) was “undetectable”.  Since then, after the effects of the Lupron drug I was taking wore off, and my testosterone production came back up, my PSA has stabilized at 0.5.  This is considered to be an acceptable PSA level after cryo, since the procedure does leave a little healthy prostate tissue in place due to the affect of the urethral warming catheter.  The results of the cystoscope exam (visual scope exam of the bladder, sphincters, urethra, etc.) were all completely normal – no collateral damage whatsoever.  So the procedure was a complete success.  I am cancer-free (as far as anybody knows), and there was no damage to any other organs or tissues.
If you are currently on your own PCa treatment decision journey, or if you just want to find out more about PCa treatment, there are many, many excellent Prostate Cancer web sites on the internet (just do a search for Prostate Cancer).  But if you are specifically researching cryo, I recommend you go to www.cryocarepca.org they also have a toll-free phone number: 1-877-722-2796.
In closing, I’d like you to know that testing and early diagnosis of PCa is absolutely essential no matter what treatment mode you eventually choose.  Please have your periodic PSA and digital exams faithfully.  As old Red Green likes to say, “I’m pullin’ for ya – we’re all in this together”.  My home phone number and e-mail address are listed below.  If I can help any of you on your journey from diagnosis through treatment to (hopefully) cure, please get in touch.
Good Health & Long Life
Cheers!
Jack Glatz (253)565-1450) jpglatz@comcast.net

Translate »