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This member is a YANA Mentor This is his Country or State Flag

JollyRog H and Suz live in Florida, USA. He was 67 when he was diagnosed in January, 2013. His initial PSA was 3.20 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

Presently I am a 68 year old fellow having retired from the Marines, law enforcement and business ventures. I served in Vietnam in 1968 and 1969 and was exposed extensively to Agent Orange. Health issues began in my mid 30s with skin issues, then thyroid and adrenal problems. Diabetes came in 2008 and now Prostate Cancer. I take medicine for the thyroid and adrenal problem but control the diabetes with diet and exercise having lost over 50lbs after diagnosis. While maintaining a rather healthy life style to include regular exercise, my diet did include considerable animal products such as meat, milk, cheese, eggs and those by-products. I also drank more alcohol than average but had to back off that with the diabetes diagnosis.

My grandfather was diagnosed with prostate cancer late in his life, but the doctors said he would die of something else and did die from a stroke at age 86. I have sons that are entering their stage in life where prostate care must become a concern. Thusly, I hope my journey will benefit them and other YANA members.

In December of 2012 my endocrinologist recommended a visit to my urologist because my rising PSA scores. They had gone from about 1.9 to 3.2 in about two years after having remained low for a long time (see chart at end of narrative).

At my urologist visit in January, the doctor said my DRE was unremarkable and recommended that we wait four months for next PSA test result. I happen to have three older buddies of military and law enforcement backgrounds that have all been treated for PCa. All essentially said, "DO NOT WAIT!"

My research also took me to the Veterans Benefit Network which has a forum with a lot of data on Agent Orange and its affects which may cause cancers and other health issues for those exposed. It seemed to me that PCa was showing up earlier with lower but increasing PSA scores in vets so I presented the urologist with my past PSA records, and he quickly scheduled me for a biopsy in mid-January 2013.

I underwent the biopsy procedure with local anesthesia and no problems. Twelve core samples were taken. A week later my urologist officially advised me of the Prostate Adenocarcinoma with cancer in 4 of 12 cores, and a Gleason Score of 3+3=6. Three of the cancerous cores were 5% and one was 50%.

While the urologist is a surgery proponent, he did explain all options. At this meeting, I decided on no action except self-education. I guess you can call this the beginning of my treatment program, i.e. Active Surveillance.

I learned that it is important to get a second opinion and subsequently consulted the University of Florida Proton Therapy Institute and underwent Phase I of their program. Phase I includes a review of the biopsy slides taken by my urologist plus x-rays, PSA and CAT scans in preparation for Proton Beam treatment. Their review verified the Gleason Score of 3+3=6. They of course were prepared to go on to Phase II which is the next step before the 39 Proton Beam treatments over many weeks at their facility in Jacksonville. I do have to say that the folks at the Florida Proton Beam center are very professional and did not try to pressure me into the next phase for treatment. They left it entirely up to me. I have taken no further action at this time.

Also in my research I learned of many PCa men who have used a healthy diet, supplements, exercise, life style changes and meditation to fight this disease. My wife was on board and we immediately eliminated meat, dairy, animal fat, eggs and sugar from our diet. We included more fruits, vegetables and whole grains with much less meat except salmon and less processed and "preserved" foods. We are walking more and doing strength exercises as well.

We watched the video "Forks Over Knives" several times (available thru Netflix) and bought the companion cookbook. I refined my diet further to vegetable-based whole foods, organic grains, fruit, fish and a maximum of 5% animal protein (including milk products and oils). Now I am also avoiding added sweeteners except for stevia.

We began this diet and exercise program in earnest in February and hope it is responsible for the low PSA levels I have experienced since the pre-diagnosis test in October 2012.

I have found many books that have been beneficial in making decisions and will list them for the benefit of others.

TITLE

AUTHOR

Advanced Prostate Cancer and Me

Daniel J. Goldstone

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

Dr. Patrick Walsh

Dr. Peter Scardino's Prostate Book

Dr. Peter Scardino

Forks Over Knives the Cookbook

Del Sroufe

How to Avoid the Over-diagnosis and Over-treatment of Prostate Cancer

Anthony H. Horan, M.D.

McDougalls' All-You-Can-Eat Vegetarian Cookbook

John and Mary McDougall

Protons versus Prostate Cancer Exposed

Ron Nelson

The Definitive Guide to Prostate Cancer

Aaron E. Katz, M.D.

The Gerson Therapy

Charlotte Gerson and Morton Walker, D.P.M

The Natural Prostate Cure

Roger Mason

The Wisdom and Healing Power of Whole Foods

Patrick Quillin, PhD, RD, CNS

You Can Beat Prostate Cancer and You Don't Need Surgery to Do It

Robert J. Marckini

The book I found the most interesting and beneficial was Dr. Anthony H. Horan's book, How to Avoid the Over-Diagnosis and Over-Treatment of Prostate Cancer. I even called his office in California to see if he might recommend a like minded urologist in Florida. He actually called me back and I told him my story. His recommendation was to stick with AS for now. Since he is high on cryosurgery, should surgery become necessary, he gave me a couple names to pursue here in Florida. I have not made contact with any as of yet.

At my urologist visit of May 2013, my "DRE is still good." Active Surveillance as the treatment of choice continues. My next PSA test will be in September.

DATE

PSA

04-11-2005

PSA 1.5

03-13-2008

PSA 1.9

06-10-2010

PSA 1.9

06-08-2011

PSA 2.3

09-14-2011

PSA 2.7

10-17-2012

PSA 3.2

04-03-2013
endocrinologist fasting @ 0745

PSA 2.7

04-03-2013
UFPTI non-fasting @ 1206

PSA 3.3

05-15-2013

PSA 2.7

It was interesting to see that two PSA tests on the same day, 04-03-2013, were a half a point different. One test was taken early and fasting and the other several hours later and non-fasting; with both tests processed at the same independent lab service. Then I learned that labs typically allow for a 20% error rate which might explain the difference.

Also I need to say that YANA has been an invaluable help in my research and decision process. Being able to search the database and "compare notes" with other PCa men really adds credence and strength to any decision one must make while fighting this disease and helps me to educate friends, family and even doctors about how others are doing it.

Thank you YANA brothers!!

UPDATED

September 2014

Hello YANA Brothers and supporters!! It has been a year since I reported and need to update my path and status.

First I want to say I am saddened by Terry's passing. He was a great source of strength and inspiration.

I continue on Active Surveillance and have followed the whole foods, mostly vegetarian diet with regular exercise consisting of walking briskly 2 miles 4-5 days a week plus some weight and strength and flexibility workouts. My supplements consist of daily doses of: 4 oz wheatgrass, pomegranate juice, vitamin C, flax seed meal, and the use of cinnamon, ginger, garlic and turmeric in cooking and snacking. Almost no meat except for salmon, tuna and swordfish when they can be found from pure and natural sources.

I believe that this diet and exercise regimen has contributed to lower PSA scores, a smaller prostate and easier bladder comfort and control. My last PSA was 2.5.

I have been making regular trips to my original urologist who has been pressing for another biopsy. We were scheduled for one in June, which I delayed to July then canceled in favor of finding a doctor who uses the advanced MRIs and focused biopsies.

I scheduled a consult with Dr. Ronald E. Wheeler, MD, of Sarasota, FL . He arranged for a multi-parametric MRI, referred to as 3T, or 3 Tesla. The reading of that indicated a PI-RADS 5 disease which translated, meant there was a tumor. Something we already knew but not how large. Dr. Wheeler's opinion was that this was a high Gleason Score tumor and needed treatment soon. He uses HIFU at a cost of $32K and must be done out of the country. My research led me to believe that there was no way for Dr. Wheeler to gauge the Gleason Score from the MRI. I have not been back to him.

My next consult was with Dr. Steven Scionti, MD, also of Sarasota, FL. He also uses the 3T MRI system coupled with a system to accurately see the tumor and direct the biopsy needles accurately. The biopsy procedure was completed on August 27th. Dr. Scionti took 19 samples. His technique was much better than the original biopsy and the pain and discomfort much less.

The results of the biopsy are that there is cancer in 7 of the 19 samples. The good news is that the Gleason Score in all 7 is still 3+3=6, as it was in January 2013. Dr. Scionti also ordered DNA testing and the highest cancer sample, at 80%, was given a PTEN/ERG molecular test to determine the aggressiveness of my cancer. The lab doing that testing is Metamark, of Augusta, GA. They have a web site that explains the testing process and what it means.

I do not understand all that the report contains but the overall summary given is that "This Patient is in the Low Risk Category". This refers to the aggressiveness of the cancer. So that is good news.

With the lower PSA, Gleason 6, low risk PTEN/ERG scores, my plan of action is continue on Active Surveillance until something changes for the worse.

Until the next chapter, all the best to you and your families who are in this battle as well.

UPDATED

November 2015

Hello YANA family!!

Well another year has passed and it is time to update my status.

I continue on Active Surveillance and have followed the whole foods, mostly vegetarian diet but had to curtail my walking because of arthritis in my right knee. Also, extensive travel from May through October has made it difficult to stick to my program. This may account for the rising PSA as seen here.

My PSA scores have run as follows:

10/14: 2.8
01/15: 3.2
04/15: 3.0
05/15: 3.5
07/21: 3.1
07/27: 2.6
08/15: 3.7
10/15: 3.96

I have been getting self directed PSAs about every 3 months and sometimes one of my doctors may order one, thus two in July.

In September 2015 I had my second go with Dr. Scionti. He scheduled a 3T MRI with the same provider as last year. Last year's 3T MRI report stated my tumor was a PIRADS 5. This time the radiologist stated: "The area of PIRADS 5 mentioned on the prior MRI report of 7/14 is less conspicuous than previously, etc, IMPRESSION: PIRADS 4." The definition of a PIRADS score has to do with the level of malignancy. A 5 is very high, most probably malignant, and a 4 is high, probably malignant. So maybe I have less cancer than before.

My visit with Dr. Scionti was interesting as he stressed that an MRI is not validated as a follow-up tool in monitoring cancer and did not want to say that my cancer was less than before. He wants to do another biopsy and I have agreed to one, perhaps in January 2016. No later than this because the MRI will not be as accurate for the focused biopsy process.

I will continue on Active Surveillance and probably get the biopsy in January 2016 just to see the status of my tumor. I will report back then.

All the best to you and your families.

UPDATED

December 2016

Hello YANA family!!

My, how time does fly when you are having fun. It has been an interesting year for medical events and developments.

I continue on Active Surveillance and combat my prostate cancer mainly with diet, exercise and supplements. In the past year I have had eight PSA tests. The scores range from a low of 1.8 up to 3.3.

In January 2016 I had my third biopsy from Dr. Scionti. He uses the 3T MRI with the Artemis system to ensure he can see and stick the tumors more accurately. His findings were that my cancer is still a Gleason 6 but is now found only in 3 of 12 areas, which seems to be less than before. He seemed stumped that he could not find more. His recommendation was to continue with PSA testing, annual MRIs and to return in two years for a biopsy.

One interesting thing I learned from another YANA Brother was that the MRIs with contrast like I have been getting, could cause toxic poisoning from the Gadolinium in the contrast fluid they inject during the MRI process. I underwent testing and sure enough I have Gadolinium toxicity way above the accepted level. This may explain some of my previous unexplained medical conditions that have plagued me for years. I am still not sure how this will play out.

I plan to continue on Active Surveillance, to get PSAs about every 2 or 3 months, and visit Dr. Scionti again in January 2018 unless something else makes it necessary for a sooner visit.

All the best to you and your families.

JollyRog's e-mail address is: seezel3 AT gmail.com (replace "AT" with "@")


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