Empowered Patients
By Mark Lichty
Recently, I had a Transurethral Resection of the Prostate (TURP) at Fox Chase Cancer Center in Philadelphia.
It was precipitated by urination issues, including only partial emptying of the bladder, urinating several times at night, at times a toe-curling sense of urgency, and so on.
I should mention, too, that I have been on a campaign for safe nocturnal urination.
A few years ago while going to the bathroom, I fell down from a blood pressure change. I decided at that point to use a bedside urinal. Now I barely wake up. Since adopting this approach, I have been encouraging men to adopt this approach rather than risk falling.
The urination issue is now more troublesome than my active surveillance journey of 17 years. More troublesome because urination issues are visible, including embarrassing spots on my pants, hurriedly trying to dry off spots in the restroom etc.
I had some anxiety about the TURP. I don’t like overnight stays in the hospital. I had had two green laser procedures in the past to correct urination issues. Green laser therapy did not require an overnight stay. It seemed less invasive when I initially was trying to correct urination issues.
However, I still found myself with tremendous urgency and failure to empty my bladder. I had avoided a TURP as it seemed too invasive and required an overnight hospital stay.
My urologist, Dr. Andres Correa recommended a TURP because during cystoscopy he detected a bump in the bladder that may have affected voiding and, therefore, wanted tissue samples. My cystoscopy was far worse to imagine than to experience.
I saw the bump on my bladder when Dr. Correa shared the screen with me as he performed the cystoscopy. Seeing the bump made it easy for me to support his recommendation to get tissue samples. Also, while a CT scan didn’t reveal any cancer, my PSA was 7, a little high.
Tissue samples might disclose any remaining cancer. I had not had a biopsy in over 16 years despite urologists’ recommendations to do otherwise. I refused to have biopsies as I was only a Gleason 6 and any information I might get from a biopsy did not outweigh the risk of sepsis.
Being the CEO of your own health requires you to be willing to assess risks, and reject treatment if you are uncomfortable.
For the TURP I decided on Fox Chase Cancer Center as that is where I had my micro-ultrasound, and was very happy with Dr. Correa. Over the past 17 years, I have had a bunch of urologists.
All good people I think, but Correa and I had a special connection. He understood the notion that I sought collaboration, and recognized that I was the final decision maker. I have trust in him, and I believe that trust is a key component of a positive patient, provider relationship.
One of our messages at Active Surveillance Patients International (ASPI) is that we are in an era where patient empowerment is the new paradigm.
There were minor things I observed in the TURP process. The nurse took my blood pressure with my arm below my heart. The arm should be at the level of the heart. Blood pressure varies greatly depending on arm elevation. I am not sure I ever had a nurse take my blood pressure properly.
The nurse offered me about six medications after the procedure. I refused all but one, including Tylenol (I had no pain), antibiotics (I value greatly the health of my microbiome, and am concerned about antibiotic resistance). There was no pushback from the nurse.
The problem with meds is they mask what the body is trying to say to you. If I have a headache, I want to know what the root cause is. Is it poor hydration? Meds mask the voice of the body. Western medicine is oriented towards symptoms. I am oriented towards root causes.
I reflected too after the procedure on how Eastern medicine would deal with the issues I have.
ASPI scans the globe to find best practices, and in the future, we would hope to share more of the East’s practices.
I give much credence to the Eastern approach. One example is acupuncture. That has survived for over 2,500 years — even though mainstream orthodox medicine labels it as an experimental technique.
That longevity for me speaks volumes about its validity. A medical practice dies if it is of no use.
Looking at the West, for example, consider how long bloodletting lasted. Western medicine wants to treat symptoms, but seems not that interested in root causes. At the same time, I celebrate Western medicine and procedures like the TURP which can address serious issues.
The most memorable part of the hospital stay was the contrast between my experience, and my roommate’s experience. My roommate had chosen to give himself over to the medical system rather than being the CEO of his health.
One of the main messages of ASPI is that we are masters of our fate, that we must be CEOs of our medical care. My roommate had an enlarged prostate and could not pee well.
Some procedure that he had uindergone were not successful. This is what I heard incessantly every time a nurse, a resident, or a doctor walked in: “This is horrible. This should never have happened in a million years.” He was no longer master of his fate. I could see ASPI has much work to do to empower men like him.
It was sad. Meanwhile, contrast that with empowered patients. Empowered Patients choose to be the CEOs of their health. Blame does not serve us. I reflected on the mission of our nonprofit ASPI, which aims in part to empower patients.
How can we help men like my hospital roommate to avoid dwelling in a place of blame? Every urologist who I have dealt with over the past 17 yrs has listened to me. In fact, he has no choice. It is my body, not theirs. I have never felt ignored. However, if the patient is in a place of subservience, he risks dwelling in the quicksand of blame.
Patient empowerment is about deep collaboration, deep listening. There is a synergy that develops between you and your doctor. I recall years ago feeling timid and subservient around my doctor. After a number of decisions that suited my own intuition, and finding the doctors accepted the direction I wished to go, I lost any timidity. Empowerment is within your grasp.
My friend, Howard Wolinsky, editor of The Active Surveillor and co-founder of ASPI, when I asked him about getting the TURP, urged that I get a second opinion. I chose not to.
Prior to the operation, Howard said, the epitaph on my Tombstone would read: “I should have had a second opinion.” I now would say it would be is: “Find a urologist you trust”, or “You are powerful. Never give that power away.”
I am sure some of us at times have hoped that a fairy would wave a magic wand, and just tell us what to do. That fairy is not there. When you are tempted just to give your power away, remember my roommate at Fox Chase. Doctors in general have your best interest in mind. They want your input. They want to know you are on the team. Take back your power.
A final update re the TURP. I still am peeing four times/per night. Dr. Correa said that the tissue removed indicated no cancer but some inflammation. Could that be the source of the urination problem?
The absence of cancer was not surprising as I had had a micro-ultrasound a year ago, and there was no evidence of prostate lesions. This is remarkable as I have had multiple MRI’s that indicated the lesions were present.
I will meet with Dr. Correa soon to see if inflammation was the problem. While there is improvement , I am not satisfied, and the quest continues.
One final note. I had asked Dr. Correa about ejaculation prior to the TURP. At my age of 73, sex hasn’t the significance it once had when I was in my 20s. He explained that I might have retrograde ejaculation, that is, no external ejaculation.
I had already achieved that status with my green laser therapies so that was not an issue. I wasn’t concerned about the TURP and erectile dysfunction (ED) as it is clear of the nerves that might cause ED. I kind of like retrograde…no fuss, no mess. I took “Mr.Happy” out for a test run, and I am am happy to report he is in full working order.
ASPI always needs volunteers that understand the importance of empowerment. Please feel free to contact us at aspatients.org. You can read more of Mark’s journey there.
