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A very strange and endlessly complicated organism

Robert Stanger

“If you suspect you might have extramammary Paget’s disease (EMPD), I encourage you to see a doctor. Don’t put it off and don’t be embarrassed!”

— Steve Schroeder (EMPD patient)

Up until the late spring of 2019, I figured that for a relatively old codger, I was in pretty good health.

I took no medications, my blood pressure and weight were fine, I very seldom had a cold and hadn’t had the flu in many years.

But as an example of how one’s health can take an unexpected turn, I developed a groin rash (the crude term is “jock itch”) that defied the prescription cream that my doctor, Joseph Zeno, seemed to believe would cure the problem.

After some months of using this cream during which I also experienced a general feeling of malaise, Dr. Zeno said, “We have to get to the bottom of this… I’m going to send you to a dermatologist.”

Thus not too long later, I was having my problem (with my shorts still on) examined by an attractive nurse practitioner and her assistant in the Boardman offices of Dr. Raymond Bernat. The dermatologist stopped by for a minute.

(In the interest of my health, and in keeping with the way medicine is apparently practiced today, I submitted to this situation without complaint.)

“You have had some tissue loss,” the nurse practitioner said.

After a couple of weeks, the pathology report from a laboratory in North Carolina came back based on tissue samples taken from my groin area.

I was seated in her office area when the comely nurse practitioner entered and sat on a stool across from me. Dr. Bernat was absent.

“You have a disease based on female breast cells invading your left groin area,” she said, adding, “We will refer you to the Cleveland Clinic and they will do a ‘workup’ on you.”

That concluded my association with that dermatologist.

When I told her of the diagnosis, my wife, Judith, said, “It sounds like your body is playing tricks on you.”

The brief lab report which I was given defined my condition as Extramammary Paget’s Disease (EMPD) and ominously added: “excision recommended.” This, of course, was advising the removal of the offending tissue.

I learned later that only one-fourth of EMPD victims are male, and that they are often older guys (like me).

When I asked my doctor if I could just live with the condition on the hope that it would fade away, he advised to the contrary. “This could kill you,” he said.

He added that he knew that the operation I would have to have was quite unpleasant, and he extended his sympathy but also noting that my general good health would be beneficial to my recovery.

My wife and I then waited for notification of what to do next from the Cleveland Clinic (a place we were unfortunately too familiar with as Judith had had a hysterectomy there a year or so before which required several round trips to Cleveland from our home in Youngstown).

But the clinic was slow in getting back to us. When we were finally contacted, we were advised that the specialist who handled cases such as mine wasn’t taking appointments until after the start of the new year.

This was unsatisfactory to me since it would have meant a delay of at least several months in any sort of treatment. Given my condition, I didn’t believe a wait that long was advisable.

I was briefly at a loss as to what to do next. I contacted the University of Pittsburgh Medical Center and was advised that dermatologists held “clinics” every Friday and that I could sign up for one of them.

I also contacted the Roswell Park Comprehensive Cancer Center in Buffalo, since my sister, who was then living in Erie, had been treated there for skin cancer.

My initial inquiry to Roswell was quickly followed up as they seemed to understand my condition, and I enrolled in their care. All future appointments and instructions were telephoned to us, a policy that impressed me for its efficiency.

There was a brief delay in our going to Roswell, however. Our local dermatologist had been advised by Roswell to forward my records to them.

One such record was the pathology report on the EMPD, which had said in effect that there was no underlying cancer present. But when the dermatologist’s office copied the report, the “no” was cut off. Of, course I had them correct the mistake once I noticed it … although I could easily have overlooked it.

We have now made three 400 mile round trips to Roswell. My wife and I drove up alone once, but my son, James, and daughter-in-, Harmony, drove us there twice. Each time we have stayed overnight at the Wyndham Garden hotel which adjoins Roswell. They are connected by an underground passage.

The first Roswell session was with a dermatologist from Hungary, Dr. Gyorgy Paragh, who with assistants thoroughly examined me. Tissue samples and photographs were taken.

The Hungarian doctor called me at home after we had returned to Youngstown to inform me that there were no barriers to my having surgery.

Next came the consultation with the surgeon, Dr. Joseph Skitzki and two of his young associates. I had been informed that EMPD surgery could involve skin grafts and was pleased when told that no such grafts would be necessary.

I received a CT scan and other pre-op tests during this second trip to Roswell.

The surgery was performed on December 10 under general anesthesia, which meant that I was totally out during the operation and recall only the gurney trips to and from the operating room. The surgery took over an hour.

There was little pain or loss of blood, and my care in the recovery room was excellent.

Harmony drove us home to Youngstown as snow off the lake shrouded I-90. As the surgeon had advised, I got out and walked at rest stops during the return trip to ward off blood clots.

My first meal in many hours consisted of tacos served at a rest stop cafeteria west of Buffalo.

I will return to Roswell the first week of the new year to have the numerous (very irritating) stitches snipped out, the final step in the removal of female mammary tissue from my left groin area. Had this condition been lurking in my body my whole life?

I am quite hopeful that my health will improve with the removal of this apparently offending tissue. This episode in my advanced years was further evidence to me that the human body is a very strange and endlessly complicated organism.

It gets the respect and attention it requires at Roswell.

Robert Stanger has lived seasonally for over 40 years along the Allegheny River and has the stories to tell about it.

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