What’s Going On, Doctor?

I am currently 66 years old. Approximately 10 years ago I went for my yearly physical with my primary doctor. He has his patients go for blood tests after he performs general physicals. At the time he did perform DRE. I remember asking him how it felt. He told me it seemed fine. I had no urinary problems when I went for my physical.

Misdiagnosis

Approximately two days after the exam I began to have a burning sensation while urinating. I also had a continuous moderate discomfort long after urinating. I called my primary physician and he gave me antibiotics, figuring I had an infection. He told me on the phone that the antibiotics were going to last for 14 days, and to be sure I took them all. He also gave me a name of a urologist that I was too call if the problem continued after the pills were depleted.

He was also interested in what my PSA numbers were. He did call me back the same day to tell me my number was below 2 just as it was the previous year. Of course (as anal as I am) I called the urologist office immediately to make an appointment for as close to the end of the 14 days, just in case the antibiotics didn’t work.

Cystoscopy disaster

I went to see the urologist shortly after 14 days. My symptoms were not changing and maybe were a bit worse. He reviewed my PSA history and sent me for an upper urinary tract cat scan. He told me to make an appointment for the lower part of the unitary tract test that he would perform in his office. The procedure is called a Cystoscopy, and he performed it in his office, with no anesthesia!! This test was BARBARIC!!!

The equipment that he inserted through my penis with an array of gadgets including a camera and water hose felt like a 2 minute torture! When the procedure was completed I told him just that, the test was borderline barbaric. He apologized, and told me that only approximately only one of forty people react the way I did. The reason being that all my bladder, urethra, prostate, and any other areas were totally inflamed. He told me the good news was that the upper urinary test and the lower urinary test were both negative for any growths, polyps etc…

Rising PSA

From the time I had the DRE from my primary to the paper results of the blood test my PSA number increased by one number. From below 2 to below 3. Urologist said it was a bad case of prostatitis. He sent me home with 700 mg of antibiotics, which I was to take for 30 days.

I returned to the urologist after the 30 days with a new PSA number of 2. The doctor said that was a good indicator that it wasn’t cancer. For me the pain I was living with hadn’t changed at all! I went back to the urologist 6 months later with a new PSA number of 3.5! The pain was still there for all six months. Again he sent me home with 700 mg of antibiotics. After 30 days my number went down from 3.5 to 2.5. The doctor was pleased cause he said antibiotics wouldn’t react to cancer. Mind you I was living in pain daily. The only relief was that the pain did not keep me from sleeping. It would totally disappear while sleeping, but would return as soon as I would wake up.

Six years for a biopsy

This scenario played out for about six years! My PSA number increased slowly to 17. I was living in pain for all those years! The urologist suggested that he do a 12 needle biopsy. This was the first time he ever mentioned it! I agreed and insisted I be put under anesthesia. After the lower tract test I wasn’t going to take any chances. Biopsy came out positive!

I chose to have it robotically removed. I was told by the urologist, once it was out it would be the end of it. I went to Yale for the operation. The surgeon told me that it was possible that the burning sensation I was living with for so long may not go away. He did say he was leaning more towards it going away but he didn’t want to give me false hope.

Surgery and the future

The surgery went well, except the cancer had creeped up the bladder neck and the surgeon had to continue cutting pieces of the bladder neck off until it showed a negative cancer result. After recovery and a week at home with catheter inserted, was the first time in years I had no burning sensation ever! They removed the catheter and at some point in the near future my PSA number was 0.

Six months later my PSA number had risen slightly. It rose enough that the surgeon sent me to radiology. The radiologist is doctor suggested 40 some odd treatments of radiation. Months later after radiation my PSA number still existed and has been rising very slowly for the last couple years. I’m being told that if and when it gets high enough that they will start a treatment.

I was 62 years old when I had the prostatectomy. I turned 66 in July. My wife and I have started a vegan diet with the necessary juicing and all the necessary supplements to stay heathy. All this started due to a workshop we attended after reading the book called “radical remission” written by Dr. Kelly Turner. Thank God for my wife, I could never do this on my own. Hopefully it will reduce my small PSA number, but for sure it’s healthier life style. God bless all you guys!

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

View Comments (2)
  • Will Jones moderator
    3 days ago

    While you don’t mention your Gleason score, it sounds like your cancer was aggressive enough to go ahead with the surgery and then the radiation. I hope your PSA stabilizes and no more treatment is necessary. Like you, my wife has been a tremendous support since my diagnosis in 2017 and surgery in 2018. I just turned 70 in October, my PSA is below 1. Still dealing with side effects, but optimistic about continued healing. Thanks for sharing your story and good luck!

  • Richard Faust moderator
    2 weeks ago

    Thanks for sharing your story tome. Wow, what a ride. Sorry you had so many diagnostic issues. I’m sure you may have much of this information, but this article from our editorial team looks at the possibility of recurrence and steps one can take (including one you have already undertaken – a healthy lifestyle): https://prostatecancer.net/symptoms/recurrence/. Wishing you the best and know that there are people here who understand what you are going through. Richard (ProstateCancer.net Team)

  • Poll