Going Public

Radley Balco's The Agitator is one of my daily internet reads, and today he had a post that was of particular interest to me. Late last month I, too, was diagnosed with pancreatic cancer.

I had been having some slight/mild abdominal pain during the summer and when I mentioned it to my doctor, Mark Perini, during my annual physical visit, he thought I should get it checked out further ("We never like to ignore abdominal pain."). I had abdominal x-rays the next day to rule out some obvious things (i.e. kidney stones), and when the x-rays showed nothing of note, he followed up with a CT scan and then an MRI. The CT scan showed an "ill-defined mass involving the body of the pancreas" and the MRI showed a pancreatic tail mass "most consistent with an adenocarcinoma" with "no definite hepatic metastasis".

Dr. Perini immediately followed up with the Comprehensive Cancer Center at Wake Forest Baptist Health Center (where he had gone to medical school) and got me an appointment with Dr. Perry Shen there. At our 9/30 appointment Dr. Shen reviewed the CT and MRI results and believed the tumor was very "operable" with a distal pancreatectomy and splenectomy, procedures to remove the tumor, part of the pancreas (leaving the pancreas head and some tissue to provide some continuing pancreas function), and the spleen (which isn't really necessary for adults. This is the least invasive pancreatic surgery, less severe than a total pancreas removal or a Whipple procedure, which removes part of the stomach, small intestine, and other affected organs as well.

Surgery was scheduled for Oct. 26, the earliest date Dr. Shen had available on his schedule. Since this type tumor is very slow-growing and Dr. Shen wanted an endoscopic ultrasound and biopsy procedure done to make sure of the diagnosis before surgery, it seemed like a reasonable date.

Dr. Shen never used the word "cure" in discussing the treatment, but he did say that surgery followed by chemotherapy or radiation if necessary was the best course of action.

After thinking about the situation over the weekend, I called Dr. Perini on Monday to discuss the schedule with him. I wanted to do the surgery sooner rather than later. He agreed to call Dr. Shen and see if the surgery could be moved up. The next day they called to say it had been rescheduled for 10/20 pending the completion of the endoscopic ultrasound and biopsy procedure. We scheduled that procedure for Tuesday 10/11 and it went off very well.

They gave me the ultrasound results that day as a stage T3NOMX tumor and confirmed a day or so later that the biopsy confirmed the mass was an adenocarcinoma. That day or the next they called to see if I would be interested in moving surgery up to 10/17 and I said I would be.

I haven't talked about long-term prognosis with Dr. Shen, but Dr. Perini tells me that five-year survivability of pancreatic cancer is in the 20% range, so this isn't a good diagnosis. However, if truth be told, I'm not sure I expected much more than five-year survivability when I had cardiac bypass surgery six years ago, so maybe I'm ahead of the game.

From my discussions with Dr. Shen, I expected to surgery to be somewhat like the bypass surgery, with perhaps less risk in the actual operation but a more difficult recovery period. He said I'd be in the hospital for a week or so and have a several-week recovery period afterwards.

I wanted to wait until I had a better feel about the long-term prognosis before I told the world about my situation, so I had only mentioned this to my sisters and my closest friends and asked them to use their discretion in telling others. By last Saturday, however, I realized it would be better for me to tell the story than others to hear by rumor, so I sent out an e-mail announcement to my extended family and some other friends explaining the situation.

On Monday, accompanied by my sister Peggy (and surprised there by my friends Roy and Patsy Johnston), I was at Baptist Hospital at my appointed 11:30am time, expecting to be there for a week of so and then home for recovery. We waited until about 2:00, when Dr. Shen's associate came out to tell us that their first procedure of the day (which they had started at 7:30 am) still had three to five hours to go. He said if I preferred, I could wait and have my surgery when they finished that case, or we could reschedule for a later time. After some discussion back and forth, I thought I'd rather have fresh surgeon than one who had been working 10+ hours already. Besides, I hadn't eaten since 10:30 the previous evening and couldn't have anything to drink before the surgery. So we decided to reschedule. It was quite a let-down, but I'm confident it was the right decision.

When I called yesterday to reschedule the surgery, they said the first time they had available for a first-surgery-of-the-day appointment was November 10. I said I'd take it, but I asked them to see if they couldn't do better since I knew the long wait wasn't going to make my situation better.

After discussing the situation with Dr. Perini, I called this morning re-pleading my case to see what other alternatives might be available to get the operation done sooner (different surgeon, etc.) and I'm awaiting their reply.