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13 Years and Counting

In 2004 and ’05 I complained to doctors about always feeling like I have to pee and poop. Most of the time I couldn’t do anything. After many, many test they just said my prostate was enlarged but that was normal for my age (54). They sent me on my way and said I had IBS. I didn’t know anything at the time about prostate cancer.

Rising PSA

I got a new doctor and he did a physical on me. Everything looked ok. In the summer of 2005 he did a blood test on me and my PSA has gone from 1.98 to 3.48 in one year. It never made 4, but because of the 1.5 rise in one year he sent me to a Urologist. They did a biopsy and found cancer. They said 6 out 8 needles had cancer.

Still rising after treatment

9/30/05 I had my prostate removed and was told I had stage II prostate cancer and it hadn’t gone outside the prostate. My PSA dropped to .04 and stayed there for 8 months. Then it jumped up to .19. The Urologist I had at that time said. ” well it’s going to get you now if you don’t die from a heart attack or car wreck first”.

Getting involved in treatment

Not believing what he said I said I think I am going to get a second opinion. That’s when I went to see an Oncologist at the VA. I then started with 35 sessions salvage radiation to the prostate area. During that time my PSA rose to .56. We also started Zoladex Hormone Therapy. I started giving money and raising money for the VA’s research on prostate cancer. I was also speaking to groups of men about prostate cancer. At the VA, at a church breakfast, to VA researchers and others.

Aggressive treatments

I had 6 sessions of chemotherapy in 2007. In 2009 my PSA was 3.3. In 6/2009 I started Casodex, 12/2009 my PSA WAS 30.8. Then Flutamide. They found cancer in the lymph nodes between my kidneys and at the base of my neck. I had 25 sessions of radiation to both areas. PSA dropped two .01 and stayed there for 5 months. 10/13 PSA was 36.74. Casodex and Zoladex brought it down to 1.51 on 8/14. Next was three sessions Provenge, ketoconazole, and eligard.

Low PSA, with side effects

They found cancer in the right base of my skull. 2016 I started 10 sessions of radiation and Xtandi. 2017 I had 1 session of radiation with true beam to my skull. When I started Xtandi they put me on palliative care even though I haven’t used it yet. 6 years after my radiation between my kidneys I lost my right kidney due to radiation scaring. I still have pain in my skull and muscle spasms muscles in my neck. At this time my PSA has dropped to 0 for the last 9 months. My testosterone is only 16. I have very little energy. My PSA never has been real high.

Finding reasons to be happy

I have learned to love life and thank God for every day He gives me. My mission up to this time has been to encourage others that has cancer and let them know I love them. I used to sell some of my photos of the outdoors at a Starbucks in September for raising money for PC research. I used to hunt and fish but I just don’t have energy for that anymore. I made a decision that if I come to the place were I can only lay in bed and watch TV I would still be happy to be alive. I believe that we should live in the now and find things to be happy for now. If you always worry about what might happen tomorrow you will miss a lot. I was asked if I would ever consider suicide when it gets bad. I said that suicide just transfers the pain to your family and friends. Some of the best times in my life have been during this journey. If you look for the good you’ll find it. I pray that God will give everyone peace in their journeys. God bless.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • SteveMilizia
    3 weeks ago

    Hello Sam and many thanks for your post. I’ve found that staying positive and present helps to ease my mind while I’m on this journey. Meditation, exercise and good nutrition sure has helped before, during and after chemotherapy. Gaining strength and energy each day. Being appreciative and grateful helps to keep me better balanced. Sending good thoughts to all!

  • bonnie
    2 months ago

    Thank you for your support ! Wish u the best. God bless.

  • Sam Collins author
    2 months ago

    Hi Bonnie, I lost my right kidney 6 years after radiation due to scaring in the tube from my kidney to my bladder. They put stents in me too. They were hoping to drain it to get it to work again. They did that twice but the kidney was gone. It is possible that the tumor is in the area were they used radiation before. Once you have radiation in an area I have heard and read that they won’t do radiation again or do surgery in that area because of the scaring from the first radiation treatment. I would say if your not happy with that doctor and your husband is willing I would go get a second opinion. It’s always OK to get a second opinion. I did after my cancer came back 8 months after my surgery to remove my prostate. I’m glad I did it. It’s important that your happy with your doctor. I pray that you can have peace and get the answer to his problem.

  • bonnie
    2 months ago

    My husband had prostate removed 20 years ago. Radiation 2 years after. Was doing good until 3 months ago a kidney shutdown. Had to have drain. After cat scan they found out tumor on bladder. He had a stent that needs replacing every 3 months under a general anesthetic. They are treating him with lupron shots every 6 months. The PSA has come down. My concern is the tumor. Lupron won’t shrink tumor. Seems like they should address that? Problem is dr is not good at giving information . Office is too big, we feel like we’re a number. Curious what u think. Thanks!

  • Will Jones moderator
    3 months ago

    Hi @sam-collins, Thanks for sharing your powerful story. I had a PSA of 8.3 and a Gleason Score of 6 when I had my prostate removed in April 2018. So far my PSA has remained low, similar to yours post-surgery. I’m inspired by your strength and your ability to maintain a positive attitude and appreciate each day, regardless of the circumstances. Your journey, and your story, which you’ve so generously shared, makes a difference! Will Jones Author

  • Sam Collins author
    3 months ago

    Thank you Will.

  • coachdestep
    3 months ago

    I really love the way you feel and how you expressed it in the last paragraph. I am battling Advanced Prostate Cancer Stage 4, Dia. 2 with Extensive Bone Metastasis, I plan on battling as long as I can. My father, Floyd Elvis Estep 78 just passed from the exact same thing I have. I was diagnosed at the age of 53. My wife, Cristy 54 is my caregiver and she has not complained, not once and she is always there for me as are my children, Brittani, Hilary, Nick, and Shane. I will pray for you my brother!

  • Richard Faust moderator
    3 months ago

    Hi coachdestep. I just wanted to follow up on what Sam was saying about the importance of family members getting tested. I’m sure you are aware of much of this, but for everyone out there this article from our contributor Len looks at the increased risk for family members: https://prostatecancer.net/living/remember-sons-brothers/. Wishing you the best and know this community is right there with you in this fight. Please feel free to to keep us posted on how you are doing. Richard (ProstateCancer.net Team)

  • Sam Collins author
    3 months ago

    God bless brother. Many told me that I had been through a lot, but I chose to just keep fighting. It sounds like it runs in your family. Tell your children that it is important that the boys keep getting checked for prostate cancer. I’m so sorry that you have to go through this. There is always a chance that they will find a cure or a way to extend our lives. I have taken new drugs that have extended my life that wasn’t around when I started my journey. Talk to God…love, laugh and live today. Love you brother and God bless. Sam

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