2016 July 18

An Unwelcome Guest

Topics

Microscopic image of pancreatic cancer cells.

Source: Dr. Lance Liotta Laboratory, NCI

Most visitors to this site will likely have heard the news already, but I have pancreatic cancer that has spread to my liver.

I don't smoke, I don't drink, and there's not really a history of pancreatic or liver cancer in my family—so this was completely unexpected. Since two great-grandmothers reached their 100th year and all grandparents died in their nineties, I actually thought I'd attend at least the 2060 World's Fair. (If they still have them then.)

We also now know why PC is called the “silent disease,” because I basically had no indication this was taking hold of my insides. It started little less than a month ago with an itch.

An itch that wouldn't stop. That eventually spread all over my body. It wasn't awful itching—I could usually ignore it during the day. But there didn't seem to be a cause. I've had dry skin, and bad cases of poison ivy, but this didn't seem to be either. I tried various lotions and an antihistamine and waited for it to go away.

After a week, though, the itching was affecting my sleep. I found a highly rated dermatologist on Yelp and got their earliest appointment—a week away.

By the end of this second week of itching, I was getting a number of tiny sores. But the dermatologist agreed with me that they were the result, not the cause, of the itch. He also did not see any immediate cause for the itch and prescribed an antihistamine.

But he did notice that the whites of my eyes looked a reddish-yellow. Partly out of concern for that, and partly because hepatitis can cause itching, he recommended some blood tests. I promptly went across the street and had blood drawn.

The next day was Friday, and just as I was leaving the office I got a call from the dermatologist. He wanted me to check in to a hospital, as my bilirubin and glucose numbers were off the chart.

Sometime after midnight in the ER, a sonogram followed by a CAT scan finally pinpointed the cause of the itch: buildup of bile in the bloodstream and skin, caused by a growth on the pancreas blocking the bile duct. There also seemed to be some suspicious liver spots.

Things got very serious, very fast. Except that in hospitals, as in all large organizations, “very fast” had to wait on procedure. My gastroenterologist wanted to perform an ultrasound endoscopy, which would be able to get a biopsy of the growth—but over the weekend only regular endoscopies were performed. Nonetheless, I had the regular endoscopy Saturday morning to take a closer look and open up the bile duct with a stent.

Turns out, the difference in endoscopy had no practical effect—the ultrasound endoscopy on Monday grabbed a sample from the growth, but oncologists were unable to declare it cancerous with certainty. Meanwhile, the bile was still not draining, so the jaundice and itchiness (remember the itching?) continued.

Tuesday I had an MRI, which teased some hope by suggesting that the liver spots were merely enlarged blood vessels and the growth was smaller than originally thought (1.2cm instead of 3cm).

Even with the MRI, however, the radiologists still could not determine with certainty that the growth was cancerous. My gastroenterologist wrestled with how to continue—he wanted to perform a biopsy to get that certainty, but I still had no itch relief and scheduling the biopsy would be at least another day. He consulted with colleagues, and everyone's gut instinct (so to speak) was that the growth was indeed cancer.

So instead of taking another day for a biopsy, he instead suggested immediate surgery to remove both the growth and the gall bladder (to clear up the bile issue). After nearly a week of sitting around the hospital, this sounded like a much more preferable course of action. Aggressive cancer requires aggressive treatment, and cancers of the pancreas and liver are apparently among the most aggressive.

Not that we understood how much this surgery entailed. The “Whipple procedure” or pancreaticoduodenectomy (and doesn't the length of the name say something about the complexity of the procedure?) is known as the most complicated abdominal surgery around. It consists of

the removal of the head of the pancreas, the duodenum including the duodenal papilla or ampulla of Vater, the proximal jejunum, gallbladder, and often the distal stomach.

Wikipedia

Wikipedia also specifically states that it “is performed to treat cancerous tumours of the head of the pancreas,” so you can see why it was of interest. To save time, my gastroenterologist recommended direct transfer to George Washington University Hospital, one of the top local institutions for this surgery.

Of course, it took two more days to actually accomplish that speedy transfer. And the GWUH radiologists wanted to examine all my scans themselves before signing off on this huge procedure.

Meanwhile, we learned that the success rate (no return of the cancer within 5 years) was only about 50%. There was also still some suspicion of those liver spots—although the GWUH radiologists concurred that they didn't seem to be cancerous, there was no certainty. And there could be smaller spots the MRI missed. This was important because if the growth was cancerous AND had spread to the liver, there was no point in removing all those pieces of organs.

I was wheeled into the OR early Saturday morning, nine days after meeting the dermatologist, for what was expected to be an 8-hour surgery. I was wheeled out after 3 hours because the cancer had in fact spread to my liver.

This was an extremely hard day for my wife and parents. (I was still out of things on the remnants of general anesthesia.) Up to that moment, there was an astronomically small chance the growth on the pancreas wasn't even cancer! Instead, it was too late to cut out the tumor.

In case you're wondering why it took three hours, it's because they still removed the gall bladder in an effort to quell my jaundice and itching. (Remember the itching?)

It's very late Sunday night as I write this, and it's just been a day of breath-catching. Of supporting one another, spreading the word to family and friends, and of hearing in turn all their wishes of care and support. Thank you all.

As long as this post was, it's only covered the basic facts. I'll follow up at some point with a more introspective commentary.