Survivor Stories

If you are a survivor or a family member or friend of a survivor or someone who has passed away from prostate cancer, please take a moment to tell your story.  We are very interested documents how men are diagnosed, at what stage, and the basic facts about their course of treatment.  Gathering this information, which does not seem to be available anywhere, will be of great use to men who should be testing but are not.

We plan to integrate these stories with the interviews we do over the course of this summer’s Tour de USA.  Thanks in advance for sharing, and I invite you to listen to a brief summary of my personal story.

12 Responses to Survivor Stories

  1. Kenneth A. Maxey says:

    I am a cancer survivor of thirteen years and I have been exposed to many different carcinogens through my work, starting in 1962 with 2-4-5 T, a defoliant also called Agent Orange by the military, when I worked for the U.S. Forest killing unwanted trees, called TSI or timber stand improvment. I was on a crew of eight men that used the chemical, of which all of them but me has died from cancer complications. Since then I have worked around other chemicals in diesel smoke and asbestos and was infiltrated with contaminants from a silicate plastic mandible when I was having reconstruction surgery on a gunshot wound to the face. I was diagnosed with kidney cancer in 1997 and my one symptom at the time was blood in my urine. X-rays showed my left kidney was fully enveloped with cancer. I went to a urologist in Texarkana and he said it had to be removed as soon as possible. So it was taken out. Every since then I’ve had bladder exams and a PSA test every three to six months and they have paid off. I’ve had three bladder tumors and prostate cancer was detected by PSA, which was confirmed by a biopsy. The entire prostate was removed in December 2006. I lost ninety percent of my sexual function, but at least I’m alive so I am enjoying my Golden Years. My bucket list is getting shorter and I wish I had the strength to handle a bike because I am going to see all the continental United States.

  2. Dear Kenneth: Thanks for sharing your story. Based on your personal experience, what one piece of advice would you give to men who have not yet begun annual PSA testing? Best, Robert

  3. Kenneth A. Maxey says:

    My best advice is that every man start getting the PSA at least every 2 years at age 35 and every year after his 40th birthday. I was extremely lucky to catch my prostate cancer in time to isolate it from spreading and getting it removed without any chemotherapy, after all one in four men get prostate cancer and most don’t know it ’til it’s too late. You could be the one in four that gets it and there are no warning signals. Please get the PSA test and be conifident in knowing you don’t have it. K.A.M

  4. By Permission of Jack, in Placerville, CA

    Begin Jack’s Letter

    I saw the article on you and the PCAP in Ultimatemotorcycling.com website.

    Like you, I am a motorcyclist and survivor (so far) of Prostate Cancer. I was diagnosed in November 2008, at the age of 45. The doctor said I was the 2nd youngest man she had ever seen with it.

    At first, the news was all bad; PSA was 41, Gleason score was 8, and the gland was 80% saturated. Add to that, they initially diagnosed that it had metastasized to the bone. A biopsy eventually ruled that out, but I went through Christmas and New Year’s 2008/9 believing that I would only have a couple years to live.

    First trouble sign came in October 2007. I was running the Marine Corps Marathon in Washington DC and had to stop 3 times to relieve myself during the race. It was my 4th marathon and I had never before had to stop during a race. But I tolerated the symptoms until the following October, when I finally got checked.

    The “digital” exam alone was enough to convince the doc it was cancerous. Blood test confirmed PSA at 41 (normal is less than 4) and a Gleason score (aggression level) of 8, with 10 being worst. I had a prostate biopsy done. That test revealed an 80% saturated gland.

    Additionally, the bone scan falsely returned a diagnosis that it [the cancer] had metastasized into the bone, but it was in a tricky area of my upper hip so they did a bone biopsy. Thankfully the scan revealed that the spot they saw was only a pre-arthritic growth. So they started me immediately on Lupron (a synthesized form of estrogen) and then set me up on 8 weeks of radiation therapy. The Lupron injections are every 3 months, but my last one will be in December 2010. So far my last 3 blood panels have been all clear, good to go, but with my Gleason score as high as it was, they are keeping a close eye on me.

    I’ve been married 22 years and we have 5 children. One of the few times in my life that I have cried was when I had to call the kids (aged 5 to 18 at the time) all together and give them the news. They didn’t know much specifically about Prostate Cancer, but they knew the “C”
    word and immediately assumed the worst. Still, they held it together pretty well and then we all breathed a huge sigh of relief when the bone biopsy was negative.

    My treatment program (spring, 2009) was 8 weeks of radiation, 5 days a week. Through careful attention to my diet, the side effects were minimal and I only lost about 4 pounds. In fact, I believe my exercise regimen is what helped me get through it. I did lots of running and bike riding. I told the doctor that if he had any patients in the future that were already fitness geeks, to keep it up during the treatment if possible. I believe it keeps the spirits up and stimulates the appetite.

    Now I receive quarterly injections of Lupron, a synthesized form of estrogen. Its purpose is to keep the testosterone levels low so that the cancer cells cannot link up and/or spread for a long time, giving my body’s own immune system the ability to kill off any rogue cells. I will receive the last shot in December, which will mark two years of the therapy. The Lupron gives me about a dozen hot flashes a day and also weakens my joints, but I figure these are small tradeoffs.

    Anyway, I live in Placerville, CA, near Sacramento, so if you guys get up near my way, I’d be happy to ride along with you for a bit. In any event, I wish you luck with the event.

    Jack
    Placerville, CA
    End Jack’s Email

    Robert:

    I’ll be connecting with Jack in Placerville on Monday, August 2nd, on my may to Carson
    Nevada. We’d love to have you join us; by motorcycle, bicycle, car, etc. You can follow
    my progress in real-time at http://bit.ly/tourdeusa2010 beginning July 30th.

    If you can spare a few dollars, please visit http://www.active.com/donate/tourdeusa and help
    us meet our fundraising goal. Any amount help. Thanks, and hope to see you along the road.

  5. Gypsy says:

    While it’s been a strugle, I’m now in the recovery and survival mode. You can read my blog about my 1 year journey at: http://oneprostatejourney.blogspot.com/

    Will your “Tour de USA” include a visit into Michigan? We live at the Can/US border accross from Port Huron.

  6. Hi. The closest we come to Michigan is Milwaukee and then skirting south of Chicago. Keep going on your blog. Visit http://www.29000men.org and download a PSA tracker and forward to your friends. Tracking the annual PSA test values is key. Thanks for the post. Best, Robert

  7. Dick Peterson says:

    Congratulations on the ride!!! I’ve often thought it was a needed event and hope to join you along the way.

    My own story begins in 1994 with my first PSA of 58 at age 49. Of course that was a shock and I had a lot to learn about prostate cancer. My urologist told me that he thought the cancer had spread … based upon the digital exam and the high PSA. I remember that is was a lonely time with much anxiety and wondering about the future. Fortunately I have a wonderful, supportive family.

    I had surgery in 1995 and the margins were clear so for a time I thought I was home free. However my PSA returned in a few years and continued to creep up. Radiation of the prostate bed didn’t seem to have much effect. I’ve also been on intermittent hormone therapy (triple androgen blockade) and that has helped. Currently I’m on my second round and hope that my PSA can continue to stay low.

    Motorcycling is a passion that I dearly love. Soon after my diagnosis in 1994 I bought an old ’79 Honda CB750F for $500. Of course it needed work … and that was a part of the fun. I’m proud to say that I was able to ride it from North Carolina to California and back. Recently I completed my quest to ride in all 49 states and will ride in Hawaii as soon as they build a bridge :^)

    Hope to be able to join your ride in Raleigh, NC and continue on with you to Leeds, AL. Just guessing that you will stop at Barber Motorsports … one of my favorite places.

    I’ll need information on hop to get up with you when you come through North Carolina. All the best on your ride and your efforts to create awareness about prostate cancer. Let me know if I can help in any way.

    • Dick. Thank you for the post and for telling your story. My best wishes are with you and I hope we can link up. You can follow me live on the Internet at http://bit.ly/tourdeusa2010. I’ll be posting my actual route schedule a day or so in advance along with lunch tops and mobile phone number, so we should be able to connect. Best regards, Robert

  8. James Bailey says:

    I was uninsured at the time. I went to Indiana Black Expo in July, 2006. They had a
    one-stick test that would yield several health checks. I was 60 years old. My PSA was
    522. Since the normal range is 0 through 4, I was an overachiever. I went to a urologist and he was not very encouraging. I changed immediately where I got treatment. By early October, 2006 I had a biopsy. Shortly after my 61st birthday,
    I was diagnosed with stage 4 prostate cancer. A bone scan showed that it had metasisized. And a later CT scan showed that I also have bladder cancer.

    In under 36 months, I have had 6 turb-t’s. Six surgical procedures to remove bladder
    tumors. I am on the cutting edge.

    Prostate cancer – I am on androgen deprivation therapy. We just added a second
    medication. My latest PSA is 4.31. In contrast to 522, I am delighted with that result.
    Prior to that it was 12.7. I am making progress but I have been told that I am treatable
    but not cureable.

    My advice to those reading this data. Get checked early, young and often. Only 11% of
    the prostate cancer survivors have advanced disease as I do. My advice to you is you
    can beat if it is caught early. Get checked soon and regularly. Hearing that you have cancer is not fun, hearing you have two different types of cancer is even more devistating. Don’t let this happen to you. Being a symptomless disease it can creep
    up on you without warning.

  9. Kent Leipold says:

    I had been following my PSA score each year since I turned 50. Every man in my family has died from prostate cancer. My doctor at the time said my PSA was ok as long as it was below 4.0 even though mine had uncreased each year.

    I got an annual check up from my heart doctor who said my PSA was increasing and felt I needed to be checked out by a urologist. He did the biopsy and confirm the cancer. I had a 3.2 psa and a gleason of 6 at age 54. The news sent shock and fear through me given my family history. Having watch my father a strong man deal with the fear of cancer left a lasting impression on me.

    Given my family history I was still shocked, as all the other men in my family were not diagnosed until they were in there 70’s. Before the surgery the doctor told me even with successful surgery there was a 25% chance of the cancer coming back given my family history. I had surgery in May 2008 and I have been checked every three months during my first two years of post op. My psa spiked once which caused great concern, but I am glad to be alive.

    I take things one day at a time, taking time to smell the roses and try do to something for someone else without expectations in return.

    Robert, I look forward to seeing you in Austin, Texas. Safe travels.

  10. This is an excellent survivor story by Jack Hudspeth. You can find more stories and very useful information at “You are Not Alone.” http://www.yananow.net/Links.html

  11. Hi,

    I’d like to share my recent experience with prostate cancer. I posted this story on my weekly blog, “On Dad’s Watch” http://www.ondw.com

    Michael

    A Dad and a Unicycle
    by Michael Malgeri

    Reader warning. This story has a happy ending but along the way, we’ll take a few ominous turns.

    “Dad, can I have a unicycle for Christmas?”

    “What are you a circus clown?! FORGET IT!”

    That exchange took place between my Dad and me about 44 years ago. I’d be dramatizing if I said it was traumatic, even if it did quash my then career aspirations.

    Nonetheless, on my 40th birthday my dream came true. Perhaps trying to encourage me to get a second job, my wife surprised me with a one wheeled toy. I was thrilled!

    It took a while to master clownsmanship, but soon the neighborhood kids were calling me “Mr. Unicycle.” Over the ensuing 14 years, the toy became a Saturday diversion and eventually was semi-retired to a hook on our garage wall. Like a loyal soldier, it stood by waiting for the right moment to intervene in my life. That moment came last month.

    “Mr. Malgeri the bad news is, you have prostate cancer. The good news is, my wife and I have front row seats at the L.A. Philharmonic tonight!”

    Obviously it didn’t happen quite that way. My doctor is the best, and I can’t thank him enough for what he’s done for my family and me. However, not long after I received the shocking news, I couldn’t help thinking of my unicycle.

    You may recall an “On Dad’s Watch” story not too long ago titled “Boxer Rebellion”. As it turned out, it was the uni and NOT tight under garments that was causing the inter leg discomfort described in that silly tale. Yes, it was the effects of the uni that FINALLY forced me to schedule my yearly medical exam, which at this point was 3.5 years late…Hey! I was busy!

    “You probably just bruised yourself ‘there’, but I want you to see a specialist about your prostate. It’s a bit large.” That was Doctor H, my family physician, to whom I owe much more than a co-payment.

    The next stop on this journey was four days in intensive care. Apparently my prostate didn’t get the memo about MINOR bleeding after a routine biopsy. Mr. “P” slowly discharged over a quart of my precious body fluid before my wife saved my life with a call to 911 shortly after catching me on a rapid decent to the kitchen floor.

    To my credit, I was released directly from the ICU to our home office where I started catching up on work email. But alas, no amount of machismo was going to stop the news, which came a few days later in the form of test results.

    “Huh! What do you mean? I’m Mike Malgeri. I do five push ups every day. This kinda thing doesn’t happen to me!” Those were the thoughts occupying my mind on November 10th, 2010, when I officially became a cancer patient.

    Even before my wife and I dove into the research surrounding my affliction, we were well aware that prostate cancer was not a death sentence. It’s one of the most curable cancers, particularly if caught early. AH! But what had I done!? Did my three and one half years of “appointment-challenged” negligence put me in an exclusive club…the tiny percent that doesn’t survive? A few days later it was looking like that might be the case.

    The treatment routine leading up to surgery includes both a CT and bone scan. Thanks to a well meaning but not well trained “bone scanner” (he musta been absent the day they taught patient relations), we were lead to believe my skeleton was completely invaded. I’ll always remember the ensuing 18 hours as a time which defined me, my wife and our marriage. We held hands on a walk through hell where my wife proved that “For better or worse…” are not idle words.

    The next day, the REAL results were learned…the CT and bone scans were good! That news came the day before Thanksgiving. To be honest, while surgery and the final pathology report still loomed, our lives have been oddly euphoric from that experience.

    Like I said, this story has a happy ending, so let’s get on with it. Here I sit, on December 17th, two days after a “radical prostatectomy”. The area below my belly button looks like an industrial strength zipper and I’ll be carrying around a catheter connected pee bag for about 10 days. But the pathology results are in (“may I have the envelope please”) and in my doctor’s own words, he “couldn’t be happier!” I wondered if perhaps he had tickets to the Lakers. Seriously, he said, “we’ll be seeing each other regularly for the next 30 years at which point I’ll retire and you’ll have to find a new urologist.” Ya gotta love this guy!

    I joke that I was saved by a unicycle, which got my tail in to see a doctor. I also dramatize, and exaggerate, about the extent of the personal danger. Those are the liberties and consequences I take as a part-time writer and self proclaimed ham.

    What’s not an illusion is the amazing collection of individuals I have the immense fortune to claim as my family and friends. If you’ll allow me one more theatrical indulgence, I’d like to repeat words I recently penned.

    “Some measure a man by the company he keeps. If that’s true I’ve succeeded by bounds and by leaps.”

    I’ll proudly stand by those words for the rest of my hopefully long life!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s