Be Your Own Advocate

How unusual is it for a 64 year old man not to have had a PSA test for 5 years? (A PSA test measures the prostate Specific Antigen in a man’s blood and is a common cancer screening test.)

If the man has voiding issues that escalate to a post-void residual level of 325 mL of urine, would that be the time to do a PSA test? That’s almost 11 ounces of urine that is maintained in the bladder after urination. Uncomfortable, yes! Concerning? One would think so.

In this individual, after 7 months of urinary issues, the next step was to do a Transurethral Microwave Therapy (TMT). This is essentially inserting a small microwave antenna through the tip of the penis to destroy prostate tissue that might be blocking urine flow. If unsuccessful, would this be the time to do a PSA test?

I will spare you all the painful details of ER visits, infections, Foley catheters, pubic catheter. The bottom line is that 11 months after initial symptoms, a TURP (Transurethral Resection) was done to “relieve the symptoms”. The patient understood that they would “shave the prostate” to relieve the pressure. A biopsy was done and finally the PSA with the biopsy. The PSA level was over 524. You read that right, 524! Stage IV Metastatic Cancer is the rest of the diagnosis.

This man underwent a year of hell with pain, infections & discomfort. He is an intelligent man; a personal injury attorney, in fact. He is polite and very respectful of the medical community. Despite his profession, he is not adversarial.

Why didn’t he ask about a PSA test from his primary doctor in the 5 years prior? Why didn’t he ask about this simple test during his treatment for urinary tract complications? I don’t know. Respect that his physician knew best?

Another friend has been dealing with the aftermath of a spinal cord injury. In the last year, he has complained of ever decreasing vision to the point of almost total blindness in one eye. His headaches were increasing to the point of being almost debilitating.

When he was at the National Institute of Health as a participant in an ongoing study of folks with his situation, the researchers suggested that the sight issues could be the result of reduced cerebrospinal fluid in his brain due to the shunt. They suggested, a valve to regulate that fluid would help with the vision and his headache.

It’s interesting to note that when you are in a clinical study they practitioners do not treat you, they simply study you.

He mentioned that to his physician and eventually was referred to a neuro-ophthalmologist and eventually was able to secure an appointment. Tests were done, more referrals made and the valve was finally installed-almost a year later. The change has been remarkable. He has increased energy, little if any headaches.

However, it is questionable if his sight will return. As I understand it, if your brain is dehydrated for extended periods it may lose its “sponginess” and ability to recover some of the function. I am sure it’s more complicated than that, but in layman’s terms, it’s probably as good as any explanation.

This gentlemen has become accepting of the long delays and the referrals between multiple specialists.

The point of this article is that I am a firm believer that you simply must be your own advocate. Better yet, team up with someone that really cares and is willing to spend the time to be your co-advocate. No one knows your body better than you do.

The fee for service system means that providers are paid per transaction. Most physician visits last 5-15 minutes. How much can really get accomplished in that space of time? How often do the multiple physicians that you are seeing actually spend time consulting on your case? There may be a letter back and forth and the occasional call. But absent your aggressive research and questioning, it’s unlikely that you will be in a situation where no stone is left unturned to solve your complicated problem.

I am not “blaming” the patients for the pathetic results of the care (or lack of care) they received. I am writing to encourage readers, particularly those with a serious illness, to be aggressively involved in their care. With all the resources available on the internet, one is able to collect enough information to ask intelligent questions and work in concert with their providers to find solutions to their problems. Many insurance company websites have fantastic tools to assist a client in managing their disease. These stories are heart-wrenching. Perhaps this advice will reduce the number of them that I hear.

Margaret R. Beck

Margaret Beck CLU, ChFC, CEBS started her insurance practice in Redding in 1978. She founded Affiliated Benefit Services.

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