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Are Prostate Cancer Doctors Still Clueless? This is Team Cap's Journey...

Linda (Kaywood) Bilyeu is a self-published author. Her books are available on Amazon. She writes from the heart—there is no other way.

Florida Hospital East Orlando...Our Home Away From Home

Are Prostate Cancer Doctors Still Clueless? 1/15/15

Are Prostate Cancer Doctors Still Clueless? 1/15/15

Team Cap's journey with Prostate Cancer began in Jan. 2008 when Dave's PSA was found to be elevated during a routine blood test for his Life Insurance policy. It had been an emotional roller coaster ever since. I had no idea what a prostate was or what it's purpose was until my husband was diagnosed. That moment will forever be etched in our memory and had transformed our lives. We learned many lessons along the way, which I will share with you while you embark on our journey.

Needless to say, I now feel I am educated enough to write a book, such as this book, on the treatments associated with prostate cancer. That's what happens when we are forced to deal with the unknown. We research until our brain cells are exhausted and scream for a break. We cry and console. We walk around in shock and disbelief. We wonder how one tiny moment can change our lives so drastically. The one thing we never, ever do is give in....we fight back!

I have learned many basics that I feel I need to share. PCa is genetic even though my husbands first urologist who performed his biopsy said it wasn't, yes we dropped that doctor like a hot potato. Dave's father lost his battle to PCa in 1994, his older brother and younger brother are both in remission, as far as I know since the brothers don't communicate. A father and three sons battle with the prostate cancer beast tells me and anyone else with common sense that prostate cancer is genetic.

I've learned that all is takes is a simple blood test to check the PSA can save a man's life. Yes it's that simple. Every man should know his PSA baseline by age 40 not age 50. If that baseline number rises your doctor will know what to do next. A rise in PSA doesn't always mean cancer, there are other reasons, but a baseline is mandatory. A PSA baseline isn't 4.0 anymore, I've spoken with PCa patients who had cancer with a lesser PSA. Prostate cancer isn't just for old men, I've spoken with men in their thirties and forties with prostate cancer and some beat it while some died from it. A sad story which continues to tug at my heart is of a young dad whose wife had just given birth to twins when he was diagnosed. He died a short time later. Just not fair.

PCa (short for prostate cancer) can be caught early and cured with either surgery, radiation or hormone therapy just to name a few. The sooner it's caught the better. It has no early signs or symptoms, this is why the PSA test is SO imperative. A DRE (digital rectal exam) is just as crucial to have performed. Sure, men joke that there is no way they are going to bend over and cough...really? You could always put your legs up in cold stirrups and spread 'em! Or better yet, have your ta-ta's compressed between two plates until they are the size of a pancake! That's right...Man up! Get checked!

Dave and I together as a team have been through countless PSA tests during our journey of the past 7 years. We have been through numerous doctor visits, tests, xrays, radiation treatments and hormone therapy injections. My husband was truly my hero. He never complained or asked "Why me?" He handled every step of the way with his chin up saying "Bring it on!" He was a fighter who never had a pity party. Dave, Manned up!

My purpose here is to save a few lives by simply asking you to be your own advocate, have your doctor perform a DRE, get your PSA blood test and know your baseline number....don't allow Prostate Cancer to win!

We are often asked how the name, Team Cap, came about. My response...We are a Team. Dave is a fan of Captain America. He was a proud owner of many Captain America shirts in which he wore for his treatments. I would post the photos on social media, where we had a huge following of supporters. They would post, "Go Cap!" in which we became, Team Cap.

PSA sidenote...

Dave was very proactive with having his PSA checked yearly, beginning at age 50 and also a DRE for good measure. His PSA was always below 4.0. In 2007 his PSA was 3.4, higher than 2.0 in 2006. His family doctor suggested a repeat PSA at 6 months instead of a year, but since the PSA was still under 4.0 Dave opted out and waited the full year. It was during this time that Dave's older brother was diagnosed with prostate cancer, but considered the diagnosis personal and didn't notify his brothers. If Dave had known at this time, he would have went at 6 months for a PSA test. If wasn't until after he was diagnosed that he found out about his older brother and was then told by his mother, "Oh, your brother was diagnosed last year." Wow! That was a MIND BLOWN moment. I can not emphasize enough the importance of sharing medical history with your family. I think Dave's story is a perfect example of how you could help save a life.

Guidelines state PSA under 4.0 is normal, so I can understand why Dave didn't panic. But I sure wish he took the doctor's advice. In 2008 his PSA was 5.6. That jump between 2006 and 2007 is when the cancer began. So in reality his post-surgery PSA that was rising was not his "new normal" it was the cancer that had escaped in his bloodstream. I figured this out on my own and I am not even an "Ologist!" I am a wife who was determined to fix what was broken.

Urologists and oncologists who care for prostate cancer patients, listen up...

I write letters for therapeutic reasons. At times I share the letters, then again at times, I do not. A letter is a way of having your voice heard while getting your point across. I wrote this letter to the clueless Urologist/Surgeon who performed Dave's robotic surgery in 2008. While his surgery was well done, he was obviously in need of further education for his post operative care.

This letter is not intentionally directed at just one medical professional, it's directed at many. I feel compelled to share some misinformation that my husband, I and many other patients received while in your care for prostate cancer. The data I collected over the past few years might apply to just a handful of people or maybe a few thousand. At this time I don't know how many people are affected, but hopefully I'll find out. If someone is ever in the same situation as we are I hope this message offers some insight for their journey.

After completing a successful robotic surgery on May 30, 2008 you, Mr. Ologist, informed us that my husband's post surgery PSA of 0.1 was "Outstanding, that's exactly what we wanted." Biopsy results showed cancer was organ contained, margins were clean, negative lymph nodes, no extra capsular extension and the seminal vesicles were clear. In your words, "Perfect results." We were ecstatic with the news. We made the correct decision to get 'er done and have the prostate removed. We can stop worrying and finally have a life again. Dave beat the beast. Since we were told countless times that "most men die WITH Prostate Cancer not OF" we assumed we were good to go.