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

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

Gale R. Munson

Gale R Munson (TPCSG – Happy with radiation seeds)

My first PSA (0.4) and Digital Rectal Exam were done in October 1992 at age 63. From there my PSA rose gradually until May 2003 at 3.6; in May 2004 it was 5.0; in July 2004, 5.7. Due to the more rapid increase, my urologist suggested a biopsy, which was done on Aug. 19, ‘04. Six cores returned 4 positive, 1 negative, 1 uncertain, and a Gleason Score of 6, StageT2c.

A CT scan and a whole body bone scan indicated the cancer had not migrated to bone or other nearby tissue, giving me time to consider types of treatment and hope of being cured.
My urologist did a bladder probe which showed a small bulge on the median lobe of the prostate pressing against the bladder. He said the prostate needs to be removed soon to prevent possible damage to the bladder. Because of a previous heart attack, a treadmill stress test was done by my cardiologist, which indicated I should be o.k for surgery.
On 10/28/04, my wife and I met with the urologist; he wanted to set a date for a Radical Prostatectomy. I told him I would like to get a second opinion; this upset him considerably and I knew it was time to find a different urologist.
The next day, I called the Seattle Cancer Care Alliance, which had been recommended by a couple of men at a recent support group meeting. The lady I talked to at SCCA said she would set up an appointment for me.
A few days later (on a Sunday), I received an Email from Dr. Paul Lange, head of the University of Washington Urology Department. He offered to see me and, by copy of the Email, asked his nurse to get me in if I wished. On 12/07/04 I met with Dr. Lange. He examined me, did another bladder probe and said the “bulge” on the prostate was not large enough to require surgery. He said I looked like a viable candidate for radiation. (I had said I was “leaning toward seed implant” if practical.) Dr. Lange said “let’s get you in to see the radiation people”, and helped me set up an appointment.
On 12/28/04 I saw Dr. Kenneth Russell, Radiation Oncologist at SCCA and UW Med. Center. He thought that seed implant would be a good treatment method for me, and we proceeded to set it up.
On 3/08/05 (my 76th birthday), Dr. William Ellis, Dr. Russell, and their team, implanted 77 “seeds” of I-125 radioactive iodine. Using a “custom-designed” template as a guide, 26 needles were inserted, each containing a string of seeds. The needles were pushed to the “back wall” of the prostate and then withdrawn as seeds were ejected at intervals of about 1⁄4”. A catheter had been inserted in the urethra to clearly show its location and help avoid damage. The injection process took about twenty minutes. I was released after a brief recovery period and was back in my hotel room before noon. I took one of the prescribed pain pills to help get a good night’s sleep (which proved to be unnecessary).

The following morning, I returned to UW Med Center. The catheter was removed and a scan taken to assure proper positioning of the seeds. I was released and drove home to Olympia that afternoon.
Friday, 3/11, I passed 3 seeds while urinating. I had been told that this could happen, but it was still a little unsettling, as the seeds were still strung together. I called UWMC to see if this might indicate a problem. The nurse said not to be concerned; just put the seeds in the lead pouch they had provided and bring them in on my next visit. At Dr. Russell’s suggestion, another CT scan was done on 3/30 to determine if the missing seeds needed to be replaced. Dr. Russell called on 4/12 and said they should replace the missing seeds and maybe add “a couple more, for good measure”.
On 4/26, the same team implanted 12 more seeds. The next morning a scan was done to assure placement and that afternoon I again drove home to Olympia, feeling fine. Again, NO PAIN!!
On 5/4/05, I returned to UWMC for a follow-up scan. AOK!! I was told I could resume normal activities after a couple of weeks. 5/16 I went back to golf every Monday and on the 19th resumed weekly 4 to 5 mile backcountry hikes.
Minor incontinence lasted for about six months; I wore a “Light Days” pad only when away from home, and did not have any “soaking” episodes. Erections have not been suitable for penetration, but seem to be improving somewhat. Yes, the desire is still there.
My post-implant PSA readings have been as follows: Aug. 2005, 0.30; Nov. 2005, 0.17; May 2006, 0.09; Sept. 2006, 0.06.
I am feeling very well and plan to stay as active as possible. For me, radiation seeds by the team at UW Medical Center was an excellent choice. I will continue having PSA and DRE checks every six months for the next several years as part of a follow-up study.

Phone; 360-456-8173 email grmunson@yahoo.com

Jack Hudspeth

Jack Hudspeth – Us TOO Olympia Prostate Cancer Warriors

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 (August 2006) 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 www.prostate-cancer.org).  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 ayear.  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 alot 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.

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 (Oct 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.

Cheers,
Jack
Jack Hudspeth
5532 S. 384th St.
Auburn WA 98001
253 927 2217

Jim Kiefert

Jim Kiefert – Olympia Us TOO Prostate Cancer Warriors Support Group

Jim Kiefert’s journey in conquering advanced prostate cancer, the treatments he has tried, his successful participation in clinical trials and finally his conquest of the disease through self empowerment and indomitable will.

Watch my story: Jim Kiefert

 

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