Tuesday, July 27, 2010

Surgery Off Again

Well, at least the surgery we were planning on is off again. It looks like there may be a different kind of surgery in E.'s future instead.

We just got off the phone with Dr. M, the surgeon at MD Anderson.

He staffed E.'s case with the Multi-Disciplinary Team this morning, which is essentially getting a consultation with 40 different practitioners in the cancer arena. All biopsies were "free of tumor," which is GREAT news. Rather than do the esophagectomy surgery though, the recommendation was to do a "dissection of the right supraclavicular node."

What that means is that they want to remove that once-positive lymph node in the right shoulder area and dissect it to make sure there is no more cancer. Even though that lymph node has decreased in size and was no longer "hot" on the PET/CT scan, there is still a chance that there could be microscopic cancer there.

The Team couldn't decide if surgery would be the best option in E.'s case. While they were impressed with E.'s amazing response to treatment, I'm assuming the fact remains that the scientific data is simply lacking. It was reiterated several times that right now, E. is cancer free. The question for the doctors remains, "How are we going to keep you cancer free?" The general consensus from the Team was to "WATCH" E. with regular PET/CT scans for any possible recurrence.

If that effin (yes, this lymph node is worthy of the f word with a capital F) lymph node tests negative, that would be the plan . . . regular PET/CT scans. If for some reason it tests positive, E. could receive radiation specifically targeted to that lymph node.

As it was explained to us previously, if there is a local recurrence in the future, an esophagectomy could be performed at that time. Likewise, if there is a distal recurrence, surgery would never be an option.

While a bit discouraged initially, we are shifting gears and look at these changes with a positive attitude. This surgery will be minor in compared to what we were expecting, with a much shorter stay in Texas and a MUCH SHORTER recovery. It's all good.

S.

Thursday, July 22, 2010

Texas recap

If you don't want to wade through all the nitty-gritty details, I won't make you. The end results are this: There is still NO EVIDENCE OF DISEASE. So, as it stands right now, E. continues to remain cancer free. Woohoo!

But if you want a recap of our trip, here you go . . .

We arrived Sunday evening and were greeted by the typical summer heat and sweltering humidity. Summers in Houston ... I don't know how people do it. It makes me all the more thankful for air conditioning.

E. had his anesthesia assessment appointment Monday morning. They review his medical history to make sure nothing has changed, check on his medications, take his vitals, and make sure he understand his pre-op instructions. Also, since he hadn't had an EKG in a year, they threw in one of those for good measure too.

When we reviewed the printout of E.'s scheduled appointments, we noticed that there was no lab work scheduled. That struck us as odd since E. has had blood drawn on every previous trip. While E. was getting assessed for his anesthesia, I ran up to the oncologist's office to find out about the lab work. Turns out, the lab work had been requested in the computer, but nobody had ever signed off on the order, so we got that all cleared up and got E. scheduled for a blood draw. While there, I was also informed that our appointment that afternoon with the oncologist had been cancelled since there was no point in meeting with him until after the results of the tests and scans were available. Funny, that's exactly what I called about months ago. The receptionist suggested rescheduling for Thursday (as the GI Clinic only has office visits on Mondays and Thursdays), but I explained that wouldn't work for us as we were leaving on Wednesday. In the end, we just kind of left it open, which didn't feel entirely comfortable. I supposed we could do a phone consultation if something needed to be discussed. Or I suppose we could catch him on another trip.

Since E. was scheduled for an endoscopy (a scope down the throat to check out the esophagus and stomach, as well as collect a few biopsies) early Tuesday morning, we knew from experience that he would have to switch to an all liquid diet for 24 hours prior to the surgery. Most patients simply can't eat for 6 or even 12 hours before, but E.'s slow digestion has proved that is not sufficient. If any liquid remains in the stomach, it can be suctioned out, but if any solid remain in the stomach, the surgery is terminated and rescheduled. Therefore, E.'s diet on Monday consisted of a cup of sugar free jello for breakfast and a bowl of beef broth for dinner. According to the schedule, the day would follow the same timeline as his previous endoscopy ... check-in at 7:00 a.m., have the procedure at 8:00 a.m. and be in recovery at 9:00 a.m. As you might recall from his last endoscopy in March (or I may have conveniently failed to mention it), E. went ahead by himself while Peanut and I stayed in the hotel room and slept in. I figured we'd be there in plenty of time to pick him up. Turns out, he was done by 8:00 and the nurses called me MANY times (my ringer was turned off) trying to track me down. Vowing not to make that same mistakes, Peanut and I accompanied E. to his endoscopy at 7:00 a.m. Then we waited. And waited. And waited. He didn't even go back for his procedure until after 9:00! I think the joke was on me. On a good note, the preliminary report from the endoscopy looked good. There wasn't any sign of cancer. The GI did biopsy a few of the previous cancer areas, as well as some newly formed polyps in the stomach (we were told it was not uncommon for polyps to develop while on the antacid medication). Everything looked normal, but we will have to wait for the results of the biopsies for confirmation.

E. was then scheduled for his PET/CT scan on Tuesday afternoon (and according to the instructions given to us, he could eat nothing for six hours prior to the procedure, so still no food for E.). On our way to the Mays Clinic for the PET/CT scan, we stopped at a computer kiosk to confirm the 2:00 p.m. appointment time. It was there that we noticed that tomorrow's 9:30 a.m. appointment with the surgeon was rescheduled to 1:30 p.m. So while E. was waiting for his scan, I ran over to the surgeon's office. To make a long story short, the doctor's schedule had to be changed and appointments had to be rearranged. We were supposed to have been called, but weren't. Oops. The front desk gals suggested we check in at noon and so we could be one of the first patients of the day for the surgeon.

No sooner than E. was done with his PET/CT scans were we in the hospital cafeteria. For his 48 hours of (almost) fasting, E. was craving some fried chicken. Lo and behold, the cafeteria had fried chicken! And mashed potatoes, and macaroni and cheese, and cornbread . . . yum.

The entire trip culminated with the visit to the surgeon on Wednesday. That's where we would know the results of all the tests, all the labs, all the scans. Everything but the biopsies. Talk about anxiety!

There are no sweeter words to a cancer patient or their loved ones than the words we heard . . . no evidence of disease. The surgeon then reviewed E.'s case with us again. Technically, E. is not operable because of that pesky supraclavicular lymph node (in the shoulder area) that tested positive. But, E. is an "unusual patient." Right now, he is "clear as a whistle" and there is a possibility that he is cured. Unfortunately, the chance of recurrence is high ... as high as 70%. The surgeon further stated that most recurrences (80%) occur within the first two years. (Two years from diagnosis? Two years from treatment? Two years from surgery? I'm not sure.) Because not many Stage IV esophageal cancer patients undergo surgery, there is no scientific data in regards to the surgery. Theoretically, according to the surgeon, surgery provides the advantage to minimize at least a localized recurrence. That makes sense. If the body parts are eliminated, the cancer can't come back ... at least not there. As far as a distal recurrence, who knows. The surgeon indicated it was a difficult decision to make. If E. opts not to have surgery, the medical professionals would adopt a "wait and see" approach. E. would return to MD Anderson every 3 months or so for further PET/CT scans. If anything were to show up, they would address it at that time. If E. were to have a local recurrence (meaning in the area of the original cancer), a "salvage esophagectomy" could still be performed. If E. were to have a distal recurrence (in any other area besides the area of the original cancer), surgery would be completely off the table.

As scary as it is, we are moving forward towards surgery. We want to do everything we can possibly do to to beat this beast called cancer.

S.




Saturday, July 3, 2010

Happy Summer

Summers are meant to be enjoyed.
That means backyard barbeques, drive-in movies,
and LOTS of time at the pool.