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PROSTATE CANCER SUPPORT SITE

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Tim Barber lives in Arizona, United States. He was 40 when he was diagnosed on June 29, 2009. His initial PSA was 20.2 ng/ml, his Gleason Score was 10 and he was staged T4N2. His choice of treatment was Da Vinci Prostatectomy. Here is his story.

In January 2007, after getting some bloodwork done for my job, it was determined that my cholesterol level was elevated. I was put on medication and told to come back every six months to do another blood test to check my levels. In October of 2008 during my appointment with my General Practitioner to go over the blood test results he asked me if I had any other complaints about my body. I told him that I was urinating all the time, but that I rode my bike to work and back every day and wrote it off since I was constantly drinking water to stay saturated. He asked me if I was having any pain during urination, which I was not, and then told me not to worry about it.

In April 2009, I went back for my next appointment and again he asked me about any other complaints. I told him that I was still urinating all the time and once again he told me not to worry about it since there was no pain associated with it. He filled out my next form for October 2009 that I had to take to the lab for blood work and told me that he was going to add a PSA test on there since I was now 40 years old. I had just recently become aware of what PSA stood for because my fiancée, Autumn, worked with man who had just been diagnosed with Prostate Cancer at age 65, three weeks earlier, and his PSA was a 4.6.

Although I was not having any pain at the time of that April 2009 visit, within the next couple of days I suddenly was having constant, and sometimes sharp, pain in the right side of my groin area. At the time I was working out in the gym 2-3 times per week and also had been recently "bumped" off my bike on the way to work when a car hit me. I thought that the groin pain was probably the result of me straining a muscle so I dealt with the pain and just tried to take it easy. After two weeks the pain had grown to be unbearable to where I had trouble climbing my stairs. The final night, I woke up 13 times to urinate. I made the decision that I was going to the doctor to see what was wrong.

I went back to my regular doctor and told him that I started having pain a couple days after I last saw him. He had me drop my pants and immediately exclaimed, "Oh. You have a hernia right there" and pointed to where the pain was coming from. He told me that if I was having pain from the hernia, then I should have surgery "sooner than later." He said that he was convinced that the pain was coming from the hernia, but since I was there and I was 40, we should do a complete prostate exam (DRE and PSA blood test) as well as a testicular exam and pelvic exam to see if anything else was going on. After the exam, he told me that everything felt fine and I was referred to a surgeon for the hernia. I gave my blood for the PSA and was on my way.

Two days later, I was already seeing a surgeon for the hernia surgery when my doctor called me on my cell phone and left a message to call me as soon as I could. When I was done with the surgeon, I stepped outside and returned his call. The doctor told me that my PSA results came back elevated and that I needed to go see a urologist. I asked him how high the PSA was and he said, "17.5." My knees about gave out because I remembered that Autumn's co-worker had cancer with a 4.6. He told me not to worry and said that it was probably a bacterial infection of the prostate called Prostatitis and that it could be cured by taking some antibiotics.

A few days later, I went to see the urologist that my doctor had recommended. He again did a complete prostate exam on me and prescribed the antibiotics. I took the antibiotics for ten days, then waited 4-5 days before going back to give blood for another PSA test. Two days later, I got a phone call from one of the girls at the front desk at the urologist's office and she told me, "The doctor wants you to come in for a biopsy." I practically had to pry out of her that my new PSA level had come back at a 20.2! I was totally going in the wrong direction. She scheduled a time for me to come in for the biopsy the following week and we hung up.

The following week I got a call from another girl at the front desk at the urologist's office the day before my biopsy. She was calling to remind me of my appointment and when I confirmed that I was coming in, she was getting ready to hang up. I stopped her and asked, "Is there anything I need to do to prepare for the biopsy?" She said, "Well, you're taking the antibiotics right?" I told her, "No. I have no idea what you're talking about." She said, "Oh. Oh well, just come in and I'm sure they can just give you the antibiotic when you get here. There's something about getting an enema also, but don't worry about that either." Needless to say, I was getting frustrated with the non-professionalism of the office staff at this urologist's office.

Since this whole episode started, I had began doing a ton of research on Prostate Cancer and treatment options. I had told Autumn that I just wanted to know if I had cancer or not. If I was told that I had cancer, I just wanted to know what my options were so that I could beat it and move on with my life. I wasn't scared about having cancer, I just wanted to be prepared so I knew what all the numbers and big words were that I was sure to hear from the doctors.

The next day, Autumn and I went to get the biopsy. I told Autumn that if they screwed anything up with the biopsy, I was taking my file and going to see a urologist of my choosing, one that I'd already done research on and heard great things about. I was called back into a little room where an assistant quickly asked me, "OK, so you're not taking any aspirin or baby aspirin right?" I told him that I always took one 81 mg baby aspirin every night for the high cholesterol. I told him that I had never received any instructions to stop taking the aspirin prior to the biopsy. I also told him that some girl on the phone had mentioned taking an antibiotic too, but I had no clue what she was talking about. I was raving at this point and told him that she mentioned getting an enema before coming in, but to "not worry about it." He could tell I was pissed and quickly left to go get the urologist to explain the situation.

The urologist never came in to talk to me, but the assistant did, and he told me that unfortunately we were going to have to reschedule the biopsy because I could haemorrhage with the aspirin in my system. I asked him if I could at least get my $20.00 deductible back since they hadn't done anything to me and we walked up to the front desk. I told the office manager that I wanted my file because I was taking my case elsewhere. They all looked terrified because they could tell that a complaint was coming. They told me that I would have to fill out a couple of forms and that my file could be sent to me in a couple of weeks. I pointed to their copy machine right behind them and told them that I could copy my file in about two minutes. They began to explain their policy and I just stormed out of the office, forgetting to get my twenty bucks. I was hot....

Two minutes later, the Urologist's wife, who apparently runs the whole office, called me frantically apologizing for the whole situation. She told me that she was mortified that anybody at the front desk would ever give me medical advice over the phone and I could tell that she was sincerely trying to make amends. I told her, "You guys may deal with cancer all day long and maybe your staff is immune to it, but I'm not." I told her, "Cancer is a big, scary six letter word and your staff is making me feel like just a number." She really didn't have a response and said she had no excuse for the way that I was being treated. She begged me for one more chance for them to prove to me that they could get it right. I told her that I was going to call the other urologist that I had in mind and go with him if he could get me in quickly. She knew the other doctor and said that I would be in great hands. She told me that she was going to fire the employees responsible for screwing up my case. I told her that I was going to call her back after I spoke to the other office to make sure that they could get me in.

I immediately called the other urologist's office and told them my quick story and my dissatisfaction at the other office. They told me that I was not the first patient to come to them after a bad experience at that office and they got me on the schedule within a couple of days. I called back the first urologist's wife and told her to fax over my file to my new doctor. She again apologized and told me that she would send me a check for my twenty dollars. A week or so later I got a check in the mail with a little note from her stating that she had terminated an employee over my situation.

A few days later, I had my consultation with my new urologist. He did a prostate exam and said that my prostate felt hard, with a small lump on the left side. He told me that he could not imagine any doctor telling me that my prostate felt fine, as my original doctor had done a few weeks prior. We set up the biopsy and ultrasound for the following week and he gave me a little kit to take home which included an enema, a prescription for some antibiotics and information about the procedure. I immediately stopped taking my aspirin every night, took my antibiotics as directed and successfully gave myself my very first enema. My mom would be so proud!

During the ultrasound, my urologist exclaimed, "Whoa. You have a ton of calcification on your prostate." He explained that a lot of calcification was indication of chronic prostatitis and that the calcification could definitely be causing my PSA level to be so high. He said that a lot of time prostatitis comes and goes and your body just fights it off, a lot of time with you not even knowing that you have it. I asked him if there was any correlation between having chronic prostatitis and cancer and he said, "No. They're two separate things." I tried not to get my hopes up, but I sure was hoping that my PSA level was just elevated due to the chronic prostatitis rather than because I had cancer. He said the biopsy was the only true way to tell if I had cancer.

That biopsy occurred on a Thursday afternoon. I was at work the following Monday morning on June 29th 2009 when my urologist called me. He told me that the results of the biopsy had come in and it showed cancer. My heart dropped a little, but I had already done so much research about Prostate Cancer, that I felt like I had prepared myself pretty well. He told me that he needed me to come in and get some bloodwork done as well as do a bunch of staging tests to see how far advanced the cancer was. My boss has been great, so I explained the situation to him and immediately headed over to get the bloodwork done. After I gave my blood I pulled my nurse aside and asked her what my Gleason score was. She told me that the doctor would tell me that on Wednesday when we were going to discuss the results of all of the staging tests. I told her that I had already done a ton of research and understood the Gleason scoring system and asked her again nicely if she could please just tell me the number. I knew that the higher the number, the fewer treatment options I would have. She left me for a minute and came back pulling me aside. She whispered to me, "It's a nine." Once again, my heart fell a little knowing that was bad news.

The following day, Tuesday, I went to the outpatient oncology/radiation department at the hospital and got a whole body bone scan, a CT scan, and scans of my skull and pelvic region. I remember thinking that I thought that it was odd that I was being asked to do all of these tests when Autumn's co-worker never had to do any tests at all. He was told that he had cancer and then they informed him about his options before sending him home. He later chose to go to Loma Linda in California to get the Proton Beam Therapy and is currently doing fine.

On Wednesday morning, July 1st, Autumn and I were lead down a hallway and told to sit down in a couple of chairs opposite my urologist's desk in his personal office. He entered the office a few minutes later and sat down. He began by telling me that he lost sleep the night before knowing that he was going to have to talk to Autumn and me that day. He told me that in his 40 years in practice, that he had never diagnosed someone as young as me with as advanced of a cancer as I had. He said basically that I was "dealt a very bad hand" and that I would have to throw every option at this cancer to survive including surgery, hormone therapy, radiation and chemotherapy. Pretty sobering stuff coming from a guy who's been doing this for 40 years. Autumn was crying and the doctor actually choked up as he talked. It was a big pill to swallow.

The next couple of weeks were spent going down to Tucson to speak to one of the top Oncologists in the state and researching surgeons who specialized in the Da Vinci robotic method of radical Prostatectomies. The Tucson oncologist recommended an oncologist and a radiologist in the Scottsdale area and several highly qualified surgeons as well. We researched all surgeons that fit our qualifications and eventually narrowed it down to two. They both had done in excess of 400 surgeries and taught other surgeons on the procedure. We eventually chose my surgeon and he just so happened to be a partner of my urologist who had diagnosed me.

On July 14th 2009 I went in for surgery at noon. The doctor had said that a normal surgery was about two hours and that I may be able to get released the following day, but for sure the day after that. He told me that they could tell that the cancer had spread beyond my prostate so the surgery may take a little longer depending on what they found once inside of me. I had 25 friends and family that were waiting in the waiting room at the hospital and they apparently almost got kicked out for the "party" atmosphere.

Long story short, my surgery took six and a half hours and I was in the hospital for five days recovering. Autumn said the surgeon looked exhausted when he came out to talk to her after the surgery. He had removed my prostate, lymph nodes, seminal vesicles and cut away about 1/3 of my bladder. The surgeon told Autumn and I later that he had never cut that much out of anyone during surgery in his whole career. I was setting all sorts of records apparently! He told me later that he was "shocked" at the amount of cancer that was visible outside my prostate once he got inside of me. The cancer had totally attacked my bladder and he was forced to leave some cancer still inside of me when I was stitched back up because he just couldn't cut any more of my bladder. The pathology report came back with my Gleason score being upgraded to a 10. 50% of my lymph nodes had cancer but fortunately it had not attacked any of my other organs or gotten into my bones yet.

I came home to recover and was told that my catheter would be removed after a couple of weeks. Six weeks later, I finally got the catheter out because my bladder had a pesky leak in between a couple of the stitches. The catheter was almost the worst part of this whole ordeal for me because it's so irritating. Some guys told me that getting it removed would not hurt, but maybe they hadn't had their catheter in for six weeks, because getting mine out was definitely not a fun day at the park!!

I returned to work in a light duty capacity after being home for four weeks because I was tired of sitting on the couch. It was good to be back and kept my mind off of the upcoming battle that I was about to undertake.

I began the Hormone Therapy pills a couple of weeks ago and just had my first shot of Lupron a few days ago. I haven't had any big side effects yet. My first Chemotherapy treatment is next Thursday so I cut my hair really short today preparing for the eventual hair loss. I'll have six treatments, one every three weeks and then I'll immediately begin a month of radiation which entails a treatment everyday (Monday thru Friday) for about a half hour.

I've become a huge advocate for a local Prostate Awareness non-profit organization so that no one has to go through what I'm going through. Our goal is to get guys tested early and annually for PSA so that they can catch any cancer early. Although I have a rough road ahead of me, I'm confident that I'll beat this cancer and I hope to save lives of others as they learn from my experience.

I'll take any emails from anyone out there who wants to know more about my experience. Good luck to all.....

Later: Just a quick note to update all of you. I have my 2nd Chemo treatment tomorrow. All of my hair fell out over last weekend after really starting to thin out after two weeks of chemo. I've never seen my skull before. I actually have a pretty good looking dome!!!

I go in next week for my next shot of Lupron which will last me for four months. I have been having hot flashes and very little side effects with the Taxotere (chemo). I've been back at work running full speed and most coworkers comment on how healthy I look (besides being bald). My latest blood work showed my PSA down to 2.6 and I hope to continue to watch it fall.

I've gotten several emails from you guys and I appreciate every word. If any of you are newly diagnosed, I was writing another man on this website earlier expressing my sincere gratitude with my doctors for aggressively fighting this cancer from the start. They told me that it would take every option to survive this cancer (surgery, hormone therapy, chemotherapy first, then radiation to clean up what's left). Mentally, it seemed to help me to know that most of the cancer was removed during surgery. I read on here that some doctors say that surgery wouldn't matter if the cancer has spread and so they just put the patient on Hormone Therapy.

It's always good news for a while with a falling PSA, but often you read where the PSA starts rising, sometimes uncontrollably and things spiral downward from there. I've had success telling my doctor what treatments I've wanted and the order that I wanted them in instead of the other way around. Some doctors seemed to want to give up hope on my situation and just use me for statistics while I was alive rather than try to cure me and give me my life back. My advice, take charge of your treatments if you feel like you're just another number in the waiting room. Get 2nd opinions. Fight like hell!!!

 

UPDATED

January 2010

 

 

It's been a while since I wrote. I completed my sixth and last Chemo treatment back on December 17th. My PSA has been undetectable since just after my 2nd Chemo treatment. I had some scans done (CT and whole body bone scan)on December 14th and was told that the cancer is "undetectable." I try not to get my hopes up since my Gleason was a 10. I asked the nurse if she was saying that I was "cancer free" but she said, "No." She explained that the scans only pick up tumors that are a centimeter or larger in size. My chemo was Taxotere and a mixture of the steroids Prednisone and Deximethisone. I had lost about 20 pounds prior to starting my chemo by changing my eating habits, but during the chemo I actually gained it all back. Now I'm working on losing it again.....

I go see my radiologist on February 2nd to set up my scans and radiation treatment schedule. They say that I'll be going in for radiation Monday thru Friday for 6-7 weeks. I'm still on the hormone therapy (Lupron and Casodex)and having waves of hot flashes often. I find menopausal women giving me advice! Hilarious!!!

That's all for now. Keep up the fight guys. Write anytime.

Tim

 

UPDATED

August 2010

 

 

A couple of weeks ago I passed my one year anniversary of my surgery. Since I last wrote, I completed my 45 treatments of radiation and have continued to get my Lupron shots every four months. The hot flashes are still strong, but have subsided a little since I've discovered rubbing an herbal progesterone cream on the inside of my arms at night before bed.

My PSA is still undetectable and I'm scheduled to get a new set of bone scans in December to make sure that the cancer has not popped up anywhere else in my body.

I have been speaking in front of as many groups as I can trying to use my story to scare the crap out of as many guys as possible so that hopefully they'll get a prostate exam early and often. If you're going through your treatments, I can't stress the power of positive thinking enough. Never give up. Winston Churchill once said, "If you're going through hell...keep going."

Write to me anytime about anything and I'll respond.

Tim's e-mail address is: tjb12358@gmail.com