A roller coaster ride…

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RevDrJBDTDDPhD
RevDrJBDTDDPhD Member Posts: 3 Member
edited September 2023 in Prostate Cancer #1

I had a new Internist that was a Neurosurgeon in India. He was the only doctor taking new patients in my town (former doctor moved into a clinic with a Chiropractor to save funds on facility costs, but the DC would review the MD anytime he wrote a prescription for a Controlled Substance). My doctor left and decided to just handle a local nursing home and the local prison. Less headache.

I stayed at the clinic since no doctors were available in my town and saw Nurse Practitioners until THREE different ones quit (all had Doctorates in Nurse Practitioner degrees). So I had to find my new doctor.

The only one that was taking new patients, wanted me to come in every 3 months (he was close, no big deal). But he RAN ANNUAL BLOODWORK at each appointment (wonder how he got Medicare to cover it). I have had a PSA test done since age 40 with my previous doctor.

With this doctor, every 3 months I would ask him how my bloodwork was, he would always say “it’s fine, fine”. Then in June 2016 (I was 46) I came in and the first thing he asked me is if the Urologist called me. I asked “What Urologist?” and he said, “oh your PSA is 14.0 ng/ml” and he was upset the Urologist did not call me. It turns out this doctor’s office did not call the urologist.

I met with the Urologist ASAP in July after my 47th birthday, had an exam including the digital prostate exam. In October he did a biopsy and my Gleason was 3 + 4 = 7 (had time to do my homework, not “great” but not “death”). He referred me to the Cleveland Clinic Cancer Center office here in my town. He told me he would fax my records to them, but since they were always busy he gave me a copy “in case they lose them”. As my spouse put my wheelchair in the car, I read the records. In my 40’s my PSA while seeing the “joker” doctor were ALWAYS above 5, I did not just SUDDENLY jump to 14.0 Ng/ml.

At the Cleveland Clinic Cancer Center, I was given 3 choices. Radical Robot-Assisted Prostatectomy, external beam radiation, or Brachytherapy. I thought the surgery was too “radical” and I had a cardiac arrest at age 20 so 8 hours under anesthesia did not seem like a first-line option. As an incomplete paraplegic from Guillain-Barre Syndrome at age 5, external beam with the bowel and bladder issues would make my neurogenic bladder and neurogenic bowel much worse. The Brachytherapy would be 90 minutes under to insert the radioactive seeds. But I looked at all the options and asked the doctors “If you had prostate cancer what would you do?” the external beam MD was noncommittal, same with the Brachytherapy Surgical Oncologist. I was willing to drive 90 miles and meet with Dr. Eric Klein the head of Urology, and a surgeon who would be the one I would want to do the surgery. However it was felt that Brachytherapy was the best option.

I had my prostate scanned (ultrasound up the anus, and I have a small prostate only 15cc’s so they had to mark the boundaries very well). There were 7 people in the exam room. Computer nerd doing the marking, a doctor to make sure he did it right, my surgeon, another doctor, and some nurses. On 10-January-2017 I had the seeds implanted in my prostate and my PSA within 3 months was “back to normal” for someone without cancer. Today it is about 0.67 Ng/ml and 0.00 Ng/ml is “cancer free” and 5 years “cancer free” is considered cured.

Called the ACS as soon as I was diagnosed. Asked for assistance such as rides. Nothing was available. The surgeon had privileges at my urologist's hospital UH Samaritan Hospital about 30 minutes from here. I drove myself to the hospital for the outpatient procedure, and when I woke up I drove myself back (my late spouse who died in a house fire on 18-December-2020 was unable to drive due to their disability, could walk okay, just could not safely drive a car). So after being out for 90 minutes, up for an hour in recovery, I drove the 30 minutes back to this area.

Needless to say the next time I saw my Urologist, I asked him for referrals for Internists in his hospital, I had no problem driving 30 minutes to the next county over for a good doctor. He gave me a few names, the top doctor was a DO, first non-MD I had ever seen. But she impressed me and I have seen her ever since.

Comments

  • Old Salt
    Old Salt Member Posts: 1,399 Member
    edited September 2023 #2
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    Thanks for your 'interesting' story. It appears that notwithstanding all the trouble you encountered, the outcome has been good. Congratulations!

    One note, an irradiated prostate does produce PSA and as long as the value is below (about) 2 ng/ml, no treatment is necessary. The likely ups and downs can get on your nerves though...

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
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    Hi,

    Interesting story, My Internist at UH Hudson would always take the time to review all of the levels of my blood test including my PSA. I had my Prostate removed 9 years ago at the UH Seidman cancer center and was very happy with the team of doctors and the results. Very fortunate to have a hospital system like UH.

    Dave 3+4

  • eonore
    eonore Member Posts: 182 Member
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    A good practice is to make sure that you get a complete copy of your blood test results, and then use Dr. Internet to look up each test and what the normal values are. This way, if something seems out of whack, you can question the physician about it.

    The practice I use is not very conscientious about getting the results to me, so I usually have to make a specific request. I have heard too many horror stories (and have been the victim of some myself) to leave things to chance.

    Eric

  • Old Salt
    Old Salt Member Posts: 1,399 Member
    edited September 2023 #5
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    Fortunately, many practices (in the USA) and the testing labs do post the results (with the range) online. Sometimes the very next day.