Active Surveillance Gary Sanders Len Lindstrom
Alternative (Natural) Therapy Allen Titmus
Cryoablation - Freezing Paul Niblock
Hormone Therapy Arthur Case Duke Best Fred Thorngate Guy Waller Rick Lopez Rommie Overton
Radiation - Brachytherapy Denny Shields Wayne Miller
Radiation - External Beam Armand Chichmanian Jim Wilkinson Joe Henderson Lance Stoddard Rich Gordon Rick Dancer Rommie Overton Tom Wilson Warren Davidson
Radiation - HDRT Clint Sherburne
Surgery - Open Anonymous Part 1 Anonymous Part 2 Bob Hefty Bob Horney Bob Thorp Debbie Daugherty Jim Buch Joel Peterson Tim Daugherty
Surgery - Robotic Anonymous 2, Part 1 Anonymous 2 Bill Force Bob Peters Christopher (Christo) Schwartz Lowell Bublavi Ray Barba Roger Straus
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Ray Barba Us TOO FLORENCE
-OUR PROSTATE CANCER JOURNEY-
BY RAY BARBA - PROSTATE CANCER SURVIVOR - and - MARILYN BARBA
(Published November 11; December 9, 2015 and January 13, 2016, in the Siuslaw News)
We were looking forward to writing another chapter in our book of life together! Marilyn and I had been together for 52 years as man and wife, anticipating many more when the phone rang the afternoon of December 24, 2014...Christmas Eve!
Our home was decorated, gifts wrapped, sugar cookies ready and the aromas of dinner with the traditional favorites filling the air. Soon our daughter, Susan, and her children would arrive, along with "Sherman," their Boston Terrier! We answered the phone thinking it was family or friends calling.
It was Dr. Bryan Mehlhaff calling from the Oregon Urology Institute (OUI) in Springfield. He had promised to give us a call as soon as definitive results were available from the recent biopsy of my prostate. The results were not good. I did have prostate cancer.
I had been getting my PSA checked every year since I was 40, because my father and four uncles had prostate cancer. My grandfather died from the disease. In August, 2014, my PSA showed a sudden increase, going from 2.2 to 5.2 To be cautious, my doctor wanted to recheck my PSA in three months. Unfortunately, it was even higher, climbing to 6.6. Without hesitation I was referred to Dr. Bryan Mehlhaff at OUI.
After Christmas, Marilyn and I (we are in this journey together) scheduled a thorough consultation with Dr. Mehlhaff. We were his last appointment of the day. In great detail he explained the results from the biopsy and additional test results he had taken. My Gleason Score was 9, with 10 being the highest level of aggressiveness. That number 9 indicated the cancer was very aggressive, nearly as aggressive as it gets. Dr. Mehlhaff shared information about options we had for treatment going forward. We had quite a list of questions we needed answers for and he took his time answering them...with many of his answers resulting in more questions!
It was well past 6:00 p.m. when he walked us through the empty clinic to the front office door. We were overwhelmed, numb and confused about what to do next. Dr. Mehlhaff had given us contact information for the Florence Us TOO Prostate Cancer Education/Support Group led by Bob Horney and highly recommended we talk to him. It was a long, somber drive home.
Well, we didn't need to contact Bob because when we walked into our home at 8:20 p.m., the phone was ringing. Bob Horney introduced himself saying Dr. Mehlhaff thought we could use hearing from one who understood from experience what we were feeling and facing. It's difficult to put into words what his voice represented for us. Hope, encouragement, information and caring from Bob and new friends we made by attending the Us TOO Florence meetings have equipped us to be positive by doing all we can to fight and win our battle against prostate cancer.
Bob knew from experience that we were entering a frantic information gathering phase. Time was not on our side, but we needed to be informed before we made decisions. Answers to our questions just seemed to raise more questions - it was a tough time. Through it all, Dr. Mehlhaff, Bob and the Us TOO Florence support group stood ready to help in every way possible.
We also attended the Lunch Bunch Us TOO Florence group that meets with Dr. Doug Hoff at Kozy Kitchen so we could get Dr. Hoff's input. The resources in Florence are incredible - two Us TOO Florence meetings per month, each almost always having a urologist present to answer questions and then the support group available at our beck and call. Utilizing these resources helped us zero in on our choice of treatments with a minimum of wasted time and effort.
The 2014 Holidays were finally over, and knowing my prostate cancer was very aggressive with a Gleason score of 9 (10 being the highest risk level), it was time to make treatment decisions. The "wait and see" choice, also known as Active Surveillance, was off the table. That form of non-treatment is reserved mainly for men with a Gleason 6 score and under. With the advances made in Prostate Cancer research, there were a number of options to consider. Thankfully, my urologist, Dr. Bryan Mehlhaff, is totally up-to-date having made prostate cancer his medical specialty. We soon learned the more aggressive the disease, the fewer the number of viable options. Knowing that, it was extremely reassuring to have Dr. Mehlhaff with his caring expertise by our side.
Dr. Mehlhaff, with Oregon Urology Institute (OUI), was helpful as he gave us "just the facts." He reminded us of TV's Sergeant Joe Friday (Dragnet), except Dr. Mehlhaff smiled and had a good sense of humor! And he really got our attention when he said my case concerned him because, in addition to my high Gleason score, my dad and a number of uncles were diagnosed with prostate cancer. My paternal grandfather died from the disease.
After having a full discussion of my treatment options, I scheduled surgery on Friday, March 13, 2015 for a da Vinci Robotic Prostatectomy. It was my first choice for two important reasons. Once removed, the prostate would go to a pathologist who would do a microscopic examination of the gland and give finite specifics about the amount of cancer, where it was located in the gland, confirmation of my Gleason score, staging of the disease, and prostate margins - whether clear or not - among other reports. Having surgery first would allow me to follow up with radiation, in what the doctor called "the one, two punch." Had I chosen radiation as my first option, a prostatectomy would not be possible if/when the cancer returned, because radiation would damage the tissue to the point any surgery would be termed "salvage" surgery due to the high risk of severe side effects.
Marilyn asked Dr. Mehlhaff what we could do to prepare in advance for surgery...I know she must have felt helpless as did I. The doctor suggested I begin the Kegel exercises to minimize the post-op side effect of incontinence. He gave us important information on what to plan for and expect..."just the facts"...with a smile, on this part of our journey.
The surgery went as planned; I spent two nights at the McKenzie Willamette Hospital and was sent home with a catheter for a week, to recuperate. I'm happy to say the catheter was the worst part of it all. I'm even happier to report that in less than two weeks, incontinence was not a problem.
After surgery, we anxiously awaited the results of the pathologist's report. That was going to be our guide for the next step - if there needed to be one. The report arrived and was inconclusive as to whether any cancer had escaped the gland...it was too close to call. We were disappointed, but it was vital information we needed to know going forward, with Dr. Mehlhaff's guidance.
In the meantime, the good news is that three months post-op, another PSA showed my cancer was "undetectable."
Look for Part III in January, 2016...until then..."Men, remember - It is better to know (your PSA) than not to know - and Merry Christmas!"
Before I finish the third and latest chapter of our Prostate Cancer Journey, Marilyn and I want to wish everyone a Happy (Healthy) New Year.
After my Radical Robotic Prostatectomy on Friday, March 13, 2015, a detailed prostate biopsy report raised more concerns than clarity. The cancer on my prostate's lower margins was inconclusive enough to determine whether the cancer had been contained in the prostate gland. Additionally, the biopsy showed a cluster of cancer cells gathered around some of the gland's blood vessels...suggesting it was, at least, close to spreading outside the prostate.
One point from the report was clear. It was time to give it the "one, two, three punch!" The second punch is a series of hormone (testosterone) deprivation shots every six months for two years, which began three months after my surgery. Cancer cells feed on testosterone and the Lupron injections stop production of that hormone...in essence, stopping cancer cells from spreading by starving them.
We had booked a three week visit to the East Coast for a visit with Marilyn's family in September. It gave us comfort to know we could go without worrying if the cancer that may be undetectable would spread.
The third "punch" was radiation. Dr. Bryan Mehlhaff requested our permission for him to enroll me in a study called "Decipher," a prostate cancer classifier. He was concerned with me being the seventh male in my father's family diagnosed with Prostate Cancer. My paternal grandfather died from the disease. So the Decipher study would provide Dr. Mehlhaff clinical data for my genomic risk of developing metastasis within five years of a radical prostatectomy. The study showed I had a significantly higher than average risk of clinical recurrence within five years.
I consulted with Radiation Oncologist, Dr. Kevin Forsythe at Oregon Urology Institute, who designed my radiation treatment program using the pathologist's prostate reports as well as consultations with Dr. Mehlhaff. I began my 40 "designer" treatments of Radiation Therapy on October 13, 2015. That meant 40 trips to Springfield. What a lifesaver the community funded, Friends of Florence Van was! I was treated with genuine respect by every staff member at Oregon Urology Institute, the Van Fans Volunteers and our new friends at Us TOO Florence...which is the local Prostate Cancer Education and Support Group.
Bob Horney is dedicated as he leads the "Us TOO Florence" chapter. Their support has been a priceless, constant source of information, community and encouragement. We attend the two meetings each month, with a Urologist usually present. Talk about educating and encouraging a group of patients and their loved ones! We have the opportunity to get questions answered by the doctors without having to wait for our next appointment.
Drs. Mehlhaff and Hoff kept us up to date on the latest technology and treatment options. The rest of the group that was present got informed right along with us and we learned from one another. I wholeheartedly encourage anyone wanting more information on Prostate Cancer to attend an "Us TOO Florence" meeting. (Please call Bob Horney, 541-997-6626, for meeting times and locations).
Dr. Mehlhaff, Dr. Hoff and Dr. Forsythe are some of the best Urology specialists in the nation...more than that...they never forget that they are not just treating the cancer, but real men who, unfortunately, happen to have the disease. Men like me, our partners and families can never thank them enough.
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