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YANA - YOU ARE NOT ALONE NOW

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David H lives in Tennessee, USA. He was 59 when he was diagnosed in March, 2013. His initial PSA was 2.83 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was External Beam Radiation (Proton Beam) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

After having annual PSAs every Fall since 1998 through physicals at work, in 2009 my PSA began to rise over next four years (1.05, 1.44, 1.67, 2.04). I took lab reports to my primary physician in January 2013, at which time they measured my PSA at 2.83. He recommended appointment with urologist, who scheduled biopsy for late March.

The initial pathology report on 12-core biopsy yielded 4 positive cores, all on the left Base & Mid, three scored Gleason 6 at 35-40%, one (Left Lateral Mid) scored at Gleason 3+4=7 at 70%. This urologist suggested laparoscopic robotic surgery and handed me his surgical nurses card to make an appointment.

I took a tour of the new proton treatment center being built in Knoxville, which is supposed to begin treatment in January 2014. An impressive facility.

I had tissue samples sent to Johns Hopkins for a second pathology reading opinion. Readings were similar for the three cores with Gleason 6. However, they downscored the core with the Gleason 7 to a 6 "with extensive mucinous fibroplasia which can distort architecture" rather than a % involvement.

Meanwhile, I read Patrick Walsh's book and started doing research. Went to Dr. Edward Kim at UT, rated by U.S. News in top 1% of urologists nationwide, and who does nerve-sparing surgery and nerve grafting. He does open retropubic surgery, rather than robotic, because he likes to feel the tissue he's cutting. He looked at the pathology reports and said the tumor volume was too large and that "if I wanted Active Surveillance he wasn't my doctor."

I followed that with a visit to a highly rated local radiation oncologist associated with Provision, which is associated with the new proton treatment center. His recommendation, to my surprise given the $150,000,000 capital cost of the proton center, was that I have surgery. This was because of the prognostic stage and my age, the fact that I am experiencing moderate BPH urinary symptoms, and the additional options it gives me if salvage therapy becomes necessary later (i.e., many surgeons won't operate on patients who've already had radiation).

I started attending local support groups and talked to a range of guys who have had surgery, radiation, or both and some who are doing active surveillance (my 71 year old brother is doing AV). A couple of men in one group successful surgeries but later salvage radiation after their PSAs began to rise left one with long-term bowel issues and the other with long-term incontinence. One who had nerve sparing surgery with nerve grafting still has ED issues with hardness of erections.

A different group in particular had a number of men who've had proton treatment, all of whom seem very positive about the experience. At my brother's prompting I decided to get the Oncotype DX genetic text for determination of cancer agressiveness before making a decision. Results of that test should be back in mid-September 2013. My most recent PSA test in July was 2.7. At this point, and depending on results of the Oncotype test, I'm weighing surgery versus proton. My main potential concern about proton is whether radiation may make urinary issues that are merely at an aggravation level now become a real problem after treatment that might require transurethral resection prostatectomey (TURP) to relieve, which I understand you don't really want to have after having had radiation.

UPDATED

February 2014

Results from the Oncotype DX test were not very helpful for me in reaching a treatment decision in that they reported a 68% chance of favorable pathology for my clinical stage (T1C), as defined as odds of not having a higher Gleason Score than already found in biopsys taken and odds that cancer had not become extra-capsular. Of course, that ment my contrary odds were 32% of non-favorable.

In October I started experiencing issues with Prostatitus, PSA rose to 5.42 & I was having pains radiating to left abdomen and groin. This was likely not related to the biopsy, and they were taken in March. I went on a three-month course of Ciprofloxacin (500 mg), which over time seemed to reduce sensible effects, although not completely. My PSA by late December was reduced to 1.18.

During this period I decided due to cancer volume to proceed with treatment rather than further Active Surveillance, and selected Proton Beam therapy as my treatment of choice. This was in large part, or at least made possible, due to the opening of Provision Cetner for Proton Therapy in Knoxville in January, which made the option available without out-of-state travel. Treatment plan is 78 Gray via 39 sessions of 2 Gray Each (1 Gray = 100 RADs). I began therapy January 23 & have had 6 sessions so far. Am still experienceing some residual Prostatitus symptoms in left lower abdoment but so far things are going well.

David's e-mail address is: prestrat AT tds.net (replace "AT" with "@")

NOTE: David has not updated his story for more than 15 months, so you may not receive any response from him.


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