This cannot be emphasized enough. I happened to have chosen to live in what I have found to be a semi-rural area where the health care system is completely broken. That is in no way a condemnation of the nurses and doctors most of whom are trying their best to serve and treat their patients. It is a condemnation of a governmental reality that prioritizes corporate and billionaire profits over the welfare of the ordinary citizen. My former GP was tasked with not only trying to care for his patients but also be in charge of the new interns studying to be doctors and things often fall through the cracks. In 2016 I was given a PSA test and although the results were perhaps not immediately alarming I have subsequently learned that the PSA reading definitely warranted follow up testing in the somewhat near future. The numbers meant nothing to me and I put my faith in the doctor and the system to protect me. 6 years later I experienced some symptoms that prompted my new GP to have another PSA test done. By that time I had full blown prostate cancer that had metastasized and spread to lymph nodes which precluded any kind of surgical or radiological intervention so I am now trying to live with it through hormonal deprivation therapy that leaves me weak, tired and unable to do many of the activities that were a major part of my life. Had I known more when that first PSA test was done and insisted on follow up testing I would most likely be in an entirely different place right now and much more thoroughly enjoying the brief time I have left. Do your homework. The current system can definitely not be trusted. I wish I had been aware of that back when I thought I was bullet proof.
I am so sorry you're having to go through this. My wife and I have learned to do the homework you suggested and be our own advocates.
I had a PSA test in Dec 2021 for an annual physical that was at 3, which MyChart, Google search results, and the Doc said is generally considered within the low-to-normal range.
6 months later I saw my internist PCP for a weak urine stream. He wanted another PSA done. It was at 11 and I got the results from MyChart the same day and double checked with Google to find out that was not good. The PCP called the next day saying he had referred me for a biopsy.
I got the results from the biopsy with a Gleason score of 6 and looked that up too. I knew I had cancer before hearing back from the Urologist. He advised
us that it was slow growing, there were some risks to the treatment, and I didn't need to do anything at that time. But I am the first and only one in my family to be diagnosed with cancer and
we couldn't stand the thought of having cancer in me. So I asked to be referred a Radiation Oncologist for a consult.
He said I was a good candidate for hdr brachytherapy. A month later I received 2 treatments a week apart. The recovery over the next 2 weeks was kind of "icky" and there has been some after effects that
we are OK living with. At one year my PSA was at 0.7, and my last PSA was 0.3. I will be seeing the Oncologist and Urologist every 6 months for 5 years before they can truly call me "cancer free", but the prognosis looks
very promising.
So far I am a poster child for regular checkups, testing, and advocating for myself if things bog down.
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