Currently, what we know

Hello. My name is Jennifer Stanhope and this Blog was created to keep family/friends updated on my boyfriend's current fight with cancer. I've provided a little timeline on what we know and when we learned it.

On Sept 2nd 2004; Jim L had an emergency appendectomy performed after being diagnosed with appendicitis by his regular physician. The surgeon was curious about how the appendix had ruptured and sent fragments to the Air Force Pathology Laboratory for analysis.

Sept 21, 2004; the surgeon requested that Jim L come into the office because he had "found something." We saw the surgeon who explained that the pathology report came back with the findings of mucinous adenocarcinoma (pseudomyxoma peritonei, PMP), a rare cancer. This cancer starts in the appendix, after the appendix bursts (in some people, they never feel the rupture) the cancer "seeds" itself throughout the abdominal cavity. Unlike typical cancers, PMP does not spread through the blood or lymph systems. This cancer causes accumulation of mucin (a mucus-like substance) to gather in the abdominal cavity until it smothers the organs, which causes eventual death.

Sept 24, 2004; Jim L had a CAT scan performed. Currently the best way to detect PMP is by a CAT scan, which shows the mucin as voids in the abdominal cavity.

Jan 10, 2005; we traveled to Washington, D.C. to the Washington Cancer Institute to meet with Dr Sugarbaker, a leading PMP surgeon about Jim's options and about what PMP was. The Air Force Pathology Lab had suggested seeing Dr Sugarbaker and since the PA surgeon hadn't seen PMP before and based on the standard treatment, knew that the hospitals in the Harrisburg area were not equiped to provide this treatment, he also said to see Dr. Sugarbaker. When diagnosed with or have the symptoms of PMP it is imperative to see a PMP specialist since most cases of PMP are misdiagnosed. Dr. Sugarbaker told Jim that he did have PMP and that he required surgery/chemotherapy or he would die from the PMP in the next few years. The surgery/chemo treatment was developed by Dr. Sugarbaker and it consists of cytoreductive surgery and heated intraperitoneal chemotherapy. Known as the "Mother of all Surgeries" (MOAS) by the PMP community. For Jim, that meant the removal of the greater and lesser omentum, gall bladder, belly button, and possibly more of his colon followed by the two rounds of heated chemotherapy, one while still in surgery and the other in ICU. The good news was that Dr. Sugarbaker expected that Jim had a 90% chance of not having PMP after the surgery/chemo. The down side is that Dr. Sugarbaker's office is not in-network with most insurances. Therefore, they requested a sizeable deposit (tens of thousands of dollars) before they performed the surgery/chemo (currently scheduled for April 19th), with the final cost upwards of $40,000 or more. Side note; the hospital is in-network and shouldn't cost Jim more than a $1,000 or so.

So we have an appointment with Dr Sardi with St Agnes Hospital in Baltimore, MD on March 30th 2005 to provide Jim with a second (less-costly) surgical option. Dr. Sardi is in-network with Jim's insurance, he learned the surgery/chemo treatment from Dr Sugarbaker, and I've heard only good things about Dr. Sardi. One positive aspect about this is that Jim will have a second opinion on whether he has PMP or not (he's getting a second CAT scan done plus blood work). Dr. Sugarbaker was unable to tell us definitely that Jim had PMP based on his CAT scan since it was done soon after his appendectomy (inflammation from the surgery could have been acting as "noise" in the CAT scan) and so Jim has had a quiet voice back in his head saying, "Do I really have this?" At least we will find out that much. Then after the appointment, Jim has to figure out what he wants to do next based on what Dr. Sardi says... As of now, we're keeping the surgery date with Dr. Sugarbaker and I'll update this Blog with Jim's decision....