Kenster's Journey with Prostate Cancer

Patient: Prostate Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 8 years ago, Male, Age: 71, Stage Recurrent, Progressing despite hormone therapy: Don't Know

  1. 1
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    Misdiagnosed

    Oh No

    In April of 2011 my primary care doctor found my PSA to be 9.5 and told me to see a urologist. The urologist told me that he was sure it was not cancer, but rather an infection and gave me antibiotics to take for 6 weeks. After 6 weeks my PSA had risen to 10.8 and the urologist set me up for a biopsy to take place 2 weeks later. Biopsy showed that I have gleason 9 prostate cancer. This is very aggressive cancer and was certainly misdiagnosed as a simple infection for 6 precious weeks.

    0 Comments
  2. 2
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    Robotic assisted laparoscopic prostatectomy

    Procedure or Surgery

    On June 27, 2011 my urologist referred me to Orlando, FL to have a prostatectomy by Dr. Patel. Surgery date was set for Sep-13, which was a long time away, but my urologist said not to worry because I had a good 6 months to take care of this. On Sep-13 I had the surgery and Dr. Patel found that the gleason 9 tumor was large enough to cover one third of my prostate and had escaped the capsule, invaded the seminal vesicles, and had began to enter into one lymph node. This was not good news.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  3. 3
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    Decision Point

    My urologist had me wrong at every turn from the start. But, after the surgery showed how much trouble I was in, I was anxious to return to him in hopes that he would have a good plan. The urologist reviewed my surgery report and said it was a bad report. But, he said not to worry because I wasn't going any where in 6 to 12 months. He said I may even still be here in 2 years. I'm not sure what he said after that as my head was kind of spinning. As I was driving home I told my wife that I was not going back to that urologist. I live 42 miles south of the Mayo Clinic in Jacksonville, FL and we made the decision to go to Mayo for help.

    0 Comments
  4. 4
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Seven weeks after surgery my PSA was 0.19. Doctors at Mayo were wanting it to be 0.1 or less. Because of this they determined that I should begin radiation treatments on Nov-28-2011, but no other treatments were necessary at this time. In the mean time, I had a followup visit with my surgeon in Orlando on Nov-9-2011. He said that because my prostate cancer was gleason 9, I should definitely be on the hormone therapy asap. I returned to Jacksonville and relayed that info to the Mayo doctors who disagreed, but said it was my decision. I elected to start the hormone therapy because I thought it would be better to do too much rather than too little. I received my first Lupron shot on Nov-21-2011. I will receive another in 3 months.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  5. 5
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    External radiation (Instensity modulated)

    Radiation

    I began radiation treatments at the Mayo Clinic in Jacksonville on Nov-28-2011. I was scheduled for 39 treatments, receiving one treatment per day, Monday thru Friday. Today is Jan-19-2012 and I just completed treatment number 36. Only 3 more to go. I will say that when I arrive at the scheduled time for my radiation treatment, the average wait time has been less than 5 minutes (usually just 2 or 3 minutes). Actually from the time that I enter the clinic to the time I'm on my way back home is less than 20 minutes. That makes it much easier to put up with.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  6. 6
    • Kenster
    • Experience with Prostate Cancer
    almost 8 years ago
    Kenster's Avatar

    Finished treatment

    Celebration

    Finished the last of 39 radiation treatments yesterday (Jan-24-2012).

    2 Comments
  7. 7
    • Kenster
    • Experience with Prostate Cancer
    about 2 years ago
    Kenster's Avatar

    Cancer is back/Recurred

    Oh No

    After more than 5 years of undetectable PSA it is back. PSA test in Jun-2017 showed .19. PSA test done 60 days later showed .53. Looks like it's on the move again. Received Lupron injection Aug-2017.

    1 Comment
  8. 8
    • Kenster
    • Experience with Prostate Cancer
    over 1 year ago
    Kenster's Avatar

    Cancer is back/Recurred

    Oh No

    Unfortunately the Lupron only worked for 6 months. Started Lupron in Aug-2017, another injection in Nov-2017 and the injection received in Feb-2018 did not work. PSA in May was .83. Checked it again 3 weeks later and it was 1.5. Almost doubled in 3 weeks. NOT GOOD! Doctor is starting me on a new drug that was just approved in Feb-2018 called Apalutamide (Erleada). Will see how it goes??

    2 Comments
  9. 9
    • Kenster
    • Experience with Prostate Cancer
    20 days ago
    Kenster's Avatar

    Cancer has spread/Metastasized

    Oh No

    Unfortunately the Apalutamide (Erleada) failed. I was on it for 3 months and it did nothing to slow my PSA down. I stopped taking it in Aug 2018. At this same time my scans showed the cancer had metastasized and there was a golf ball size tumor in my left pelvic area. I received 3-D radiation that targeted the tumor and my PSA slowly dropped to .14.

    1 Comment
  10. 10
    • Kenster
    • Experience with Prostate Cancer
    20 days ago
    Kenster's Avatar

    Cancer has spread/Metastasized

    Oh No

    PSA returned in April of 2019 and increasing rapidly. My PSA doubles every month. In July new scans show numerous tumors in my pelvic area and PSA is 3.8 at this time. I began taking Zytiga and in one month it showed very little help in slowing the PSA. I am now classified as Advanced Metatiastic Prostate Cancer Resistant to Hormone Therapy.

    1 Comment
  11. 11
    • Kenster
    • Experience with Prostate Cancer
    20 days ago
    Kenster's Avatar

    Breakthrough

    Celebration

    On August 26, 2019 my doctor said my tumors were rapidly increasing in size and number. He said, with the exception of Chemotherapy, we are out of options. I told him I didn't want chemotherapy so this was the end of the road of a long fought battle. The doc said as long as I'm feeling good, I should go home and enjoy my days and so I did. The next morning, Aug-27, my doctor calls me at home and says he has good news. He had just received a biopsy report from one of my tumors. He said my cancer gene mutation was a very rare match for a new immunotherapy called Keytruda. The treatments are given by IV and I received my first treatment on Sep-6-2019. Three weeks later on Sep-27 I received my second treatment and at this time my PSA was 16.4. On Oct-18-2019 I received my third treatment and at this time my PSA had dropped to 3.4. I will return on Nov-8 for another treatment and another PSA test. I'm feeling really good right now. God has blessed me.

    0 Comments