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PROSTATE CANCER SUPPORT SITE

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Kent Williams and Kay live in United States. He was 51 when he was diagnosed on May 26, 2009. His initial PSA was 5.8 ng/ml, his Gleason Score was 6 and although he says he was staged T2a, it seems this may be a pathological staging and his clinical staging would have been T1c. He is undecided as to his choice of treatment. Here is his story.


Like anyone who hears the words "You have cancer" it caught me by surprise. My first PSA score I received as part of a routine physical was 5.2 in February of '09. My primary care physician said it was possibly due to an inflammation so I started on a round of antibiotics. A month later it had risen to 5.8 and he strongly recommended I have a biopsy (not exactly an enjoyable experience). He said not to worry "There is an 80-85% chance my prostate isn't cancerous and even if it was it is very treatable."

Urologist said if it wasn't cancerous I could do the follow up by phone - if it was my wife and I would have to come in. So I guess I should have been expecting it when we went in that afternoon but it still hits like a ton of bricks.

I had pretty well settled on brachytherapy (scheduled for the end of August - volume study August 11) but am having second thoughts. I would really prefer proton beam therapy but my insurance doesn't pay for it (Kaiser Permanente) which makes no sense considering Medicare does?! PBT wasn't presented as an option by my Primary Care Doc, Urologist, Surgeon or Radiation Oncologist...hmmmm I wonder why?

I am conflicted, do I have the PBT and risk having to pay for it out of pocket if KP refuses? Stay tuned!

 

UPDATED

July 2009

 

 

I feel like a dog chasing his tail! Kaiser Permanente told me I can't appeal having proton therapy until I have been denied - so I had to go back to my urologist so I can be denied!!!!?????

I began the conversation with him by saying, "Doc, I've been doing a lot of research..." and before I could finish my sentence he said "I'm sorry to hear that." When I asked what he meant by that he said "There's a lot of bad information out there." Translated "You're not smart enough to figure out what's best for you." He then used words like "snake oil" in reference to Proton Beam therapy. I think I'll make a bumper sticker "I'm P.O.'ed at my urologist"! Maybe I can sell enough to pay for proton therapy!!!!!!

Trying to change insurance and definitely going to change urologists!!

 

UPDATED

September 2009

 

 

In spite of the fact my insurance (Kaiser Permanente) won't cover the treatment I have decided to pursue Proton Therapy at Loma Linda University Medical Center. I have read almost every story on this website and talked to dozens of people and I believe that PBT will treat the cancer but minimize the side-effects.

I have a real peace about this and am scheduled for a consultation in mid-October. There are a lot of things I have felt powerless over through this ordeal but the two things I have taken into my own hands:

1. Eating healthier (fresh fruits, vegetables and whole grains) and exercising routinely. I feel GREAT!

2. Going to battle with my insurance company. I feel like David going against Goliath - but we know who won that one! Either way it turns out, I feel better putting up a fight.

One thing I would do differently...I would not have allowed my doctors to give me a Lupron shot (It is basically chemical castration)! They decided to do it in preparation for brachytherapy to shrink the prostate. Loma Linda said that was highly unusual and didn't think it was necessary. Stay tuned.

 

UPDATED

December 2009

 

 

I am nine treatments away from being done at Loma Linda and it has exceeded my expectations in every way!

The staff, fellow patients, attractions and treatment itself are awesome. I think the fellowship with other patients is what makes LLUMC unique and their desire to "Make Man Whole". They encourage you to work out - stay connected to one another and eat right. I chose LLUMC over the other facilities that offer proton beam because it was the only place I could afford to pay out of pocket (Substantially less because there are donors who underwrite the costs) but I am most glad I chose it for the atmosphere.

I have a peace here - perhaps because it is a faith based hospital. I'd love to tell you more if you contact me!

 

UPDATED

October 2010

 

 

It has now been one year since I began my treatment at Loma Linda and it will seem strange to someone who hasn't been there but I miss it. I have such great memories of my 9 or 10 weeks there.

Six months after my treatment ended my PSA was 0.66 and now one year later is 1.22. I was a little concerned about that until I read about "the bounce". Articles indicate this is very normal and in fact those who experience it are as likely or more likely to never have a reoccurence.

Thankfully, I cannot say I am experiencing ANY side effects! Blessings and low PSA's to all!!!!

Kent's e-mail address is: kent@cfellowshipc.org