Kevin Burns: There is nothing like a cancer diagnosis to remind you that it actually might be “later than you think”!
A few of you are aware that I have been having some serious health issues, as of late. Talking with our classmate Perry Lamy, it seems like an appropriate time to get my story out, albeit in an abbreviated manner. During a relatively routine Gall Bladder removal procedure in mid-January 2024, my surgeon saw something she didn’t recognize, aborted the procedure and ordered further testing. Four days later I was preliminarily diagnosed with a Peri Hilar Cholangiocarcinoma, Klatskins Tumor for short. It is a rare and often lethal mass that, in my situation, has encased all the pipes (artery, veins, biliary ducts) running into and out of the liver. Statistically, if I did nothing, longevity is 2-8 months from diagnosis; if I do chemo only (my current remedy), longevity is about a year from diagnosis; if I have a resection surgery (cutting out the tumor alone), I have a 40% chance of making it to 5 years past diagnosis; and if a liver transplant is included, I have about a 60% chance of making it 5 years past diagnosis. I have no family history of anything like this. Keep an eye on yourselves. There are a lot of studies going on about increased aviator susceptibility to cancers, in some cases way above that experienced by the normal population (e.g. prostate and breast cancers).
I am working with MD Anderson (MDA) Cancer Center in Houston (cancer assessment), Emerald Coast Cancer Center in Ft Walton Beach FL (chemo infusions), Houston Methodist (HM) Hospital (liver transplant), in addition to consulting with a biliary (bile duct) resection superstar surgeon in Tampa FL on determining a surgical way-ahead past chemo. I am officially on the national liver transplant list (which required a two-day evaluation in April that I wouldn’t wish on my worst enemy). Every three months I return to my Houston medical mothership for an MDA CT Scan for tumor status update, stent replacements in my two hepatic ducts (liver main biliary ducts), along with a visit to HM for a liver transplant consult. I just completed six months/15 infusions of chemo/immuno “poisoning” on 1 August. I get labs done almost every week as a “permission slip” for the pleasure of enduring chemo. All my lab numbers, including an important cancer marker, CA-19, and a biliary/liver health indicator called Amino Phosphatase are consistently back in the normal range as of late, a rudimentary diagnostic that the chemo is having the intended effect on the tumor. BL, liver function remains good. Until my August MDA visit, there was no evidence that the cancer had metastasized elsewhere.
Unfortunately, in my August CT imaging, a new lesion was found in my liver about an inch away from the main event. There is a lively disagreement between the radiologist and my docs about how serious this new anomaly is. If the radiologist is right, any surgery, including the liver transplant option, is off the table and I have a whole new cancer problem to contend with. For now, my docs have suspended chemo and prescribed antibiotics to cure what, hopefully, is just an infection. Although MDA’s position has consistently been that resection surgery is not viable, my Tampa resection surgeon sees it differently. Assuming my new lesion is benign, he has already offered to perform resection surgery. This resection surgery – which cuts out the tumor, pipes, and any cancer in the liver where the tumor tucks in – is very complex (for him) and very high risk (for me). A liver transplant surgery by MDA/HM would be equally complex and risky for completely different reasons, to include obtaining a healthy liver before I’m too sick for it to do any good. At some point, I expect to sign up for some surgery, but just not yet sure which kind or where. If you pray, please do. These will be life altering decisions (literally). My wife, Debi, and my two kids, Kathryn and Ryan, are holding up well. The fact that I refuse to treat this as anything but another problem to solve has helped us all, emotionally, I think. Debi has a great church support group. If you want to get in touch with me directly, my email address is burnskp@cox.net.
6 September 2024 Update:
Although I continue to have lots of body aches, pains, and general mild disfunction, Tuesday was a very good day, most likely attributable to all your support and prayers. God has been Faithful to us. The new liver lesion, which appeared on my August 5th imaging turned out to have convincingly benign characteristics on today's re-imaging scan. So we are back to where we were three weeks ago -- trying to make a surgery or transplant decision. I went back on chemo yesterday (Thursday) for the duration.
If you believe in God's Timing (and I think you should), I concluded yesterday that this recent hiatus was to give me time last week to research some specifics of surgical resection and to push Houston Methodist (transplants) to give me a better defined execution plan. I learned alot. Houston Methodist came through with a reasonable timeline for transplant schedule events, heavily caveated on a donor organ being made available, of course, and I also met with my Tampa surgeon via videotelecon and will meet with him again in-person in Tampa on Sep 16th for one final consult. I am being pulled between a surgery and a transplant decision. It is challenging when highly competent doctors disagree on the optimal solution. No matter what course I choose, it is unlikely that there will be a surgery before mid-November. More on my COA decision in late September. Please continue praying for me and my family. The next step in this journey will truly be life altering, no matter which surgical path is chosen.
Please contact Perry Lamy, Foster Bitton, or Bill Estelle for any additional information.
