Curve Ball

We're back at MD Anderson for the pre-op appointments in preparation for the surgery that WAS scheduled for tomorrow.

Yup. Was. As in, past tense. As in, no longer happening.

Here's what went down:

We met with Dr. M., the surgeon, for well over an hour. He was kind, and sensitive, and informative, and, well, totally contradictory.

Dr. M. had reviewed E.'s records and scans. He palpitated E.'s questionable lymph node in the neck/shoulder area. Only he couldn't feel anything at all. He indicated that because the lymph node has been "quiet" since the PET/CT scan in September of 2009 (that was NED) and because he couldn't feel any sort of enlargement, he was thinking surgery might not be the best option after all. Like any surgery, a lymph node dissection does not come without risks. Risks include 1. bleeding, 2. damage to the laryngeal nerve (which could effect E.'s voice), and 3. damage to the phrenic nerve (which has something to do with the diaphragm). It was the recommendation of the tumor board though to dissect the lymph node and send all removed lymph nodes to the pathologist. If positive for cancer, the area of the lymph node could be zapped with radiation, or there could be additional chemotherapy. If all the pathology reports came back negative, the esophagectomy could be offered then.

If E. was going to be put under general anesthesia, Dr. M. suggested that possibly he would want the entire esophagectomy done at the same time. Huh? The big surgery? The big surgery that we've wanted for a year? The big surgery that we planned on? The big surgery that was ripped out from under us? THAT big surgery?

You can imagine the looks E. and I gave each other.

Dr. M. repeatedly reiterated that right now, E. is "cancer free." It is "very unusual" for an "advanced staged cancer patient" to be cancer free a year later. The fact that E. as a Stage IV esophageal cancer patient is still N.E.D. almost a year out is amazing. Can I get a big AMEN? Or more like something I'd say, how about a big HELL YA?!?

Putting E. through such an intensive surgery as an esophagectomy is debatable. Dr. M. is hesitant to "disturb the body where things are going so well." Yet, there are enough arguments to go through with the surgery as well. There is no scientific data one way or the other with these particular sets of circumstances. Removing the area of the original tumor would obviously minimize (or eliminate) a recurrence in that area. The entire specimen, as well as any removed lymph nodes, could be biopsied. It would be hoped that there would be no cancer at all, but if there were still some microscopic viable cancer cells, more chemotherapy could be prescribed. With such a big surgery, there are also risks for complications (8-10% for major complications according to Dr. M.). In particular, there is one vessel to the stomach that can become damaged which would cause gangrene of the stomach, a complication more common among diabetics like E. Overall healing usually takes about six months, although that time can be extended depending on complications (like leakage). There can be some complications after a successful surgery as well. Dr. M. estimated that 90% of his patients tolerate the procedure very well once they've healed, but approximately 10% have on-going issues with reflux and "dumping" (light headedness, heart palpitations, dizziness, diarrhea).

What would Dr. M. do? It is a difficult situation with no easy answer. He hemmed and he hawed, and he went in a thousand circles, but eventually Dr. M. said, "I would wait." He would follow up with regular PET/CT scans and endoscopies every four to six months. If there is evidence of a recurrence, a "salvage esophagectomy" could be performed at that time. Dr. M. indicated that operating if the tumor recurs gives just as a good chance as operating now. He stated that the odds were that if there was a recurrence though, it would probably be distally rather than locally, in which case surgery wouldn't help anyways. If there is residual cancer in the body, we have the advantage of time already. The more time that goes by, the better the chances are that the cancer beast won't rear it's ugly head again.

Esophagectomies are standard treatment procedures for most Stage I, II and III EC patients. We questioned why such an intensive surgery was the standard when the "wait and see" approach might be more beneficial. Perhaps the surgery should not be performed immediately post chemotherapy and radiation, but rather only if there is a local recurrence? Dr. M. said that question is a common one and the research continues. Dr. M. said that statistically, if surgery is performed immediately after chemotherapy and radiation, the odds are 70% that there is still viable cancer. He indicated that after over a year of being N.E.D., those odds improve to 30%. How accurate that is, we don't know, but it sure sounded good.

After our lengthy discussion, Dr. M. left the ball in our court. The three options presented to us were:

1. "wait and see" - do follow up PET/CT scans and endoscopies every four to six months and watch for a recurrence

2. "lymph node dissection" - remove the questionable supraclavicular lymph node and biopsy it

3. "the whole thing" - perform the esophagectomy as well as the lymph node dissection

In the end, we picked Door #1. With bated breath, we will wait and see. And treasure every moment we do have ... something we should do all along anyways. Dr. M. reassured us and told us he thought it was a "wise decision." He tried to put our minds at ease and told us that if E. does not have the surgery and the cancer spreads, it would NOT be because he didn't have surgery. If the cancer has spread, it has probably spread already. Those microscopic cancer cells were probably hiding and lying in wait all along.

The other part of facing an esophagectomy that is not often discussed is the psychological part. Many people are convinced that having the surgery is their only chance for longevity. Without the surgery, they're continually anxious and worried. Is the cancer still there? What if it comes back? What if I didn't do everything I could when I had the chance? As Dr. M. put it, if you can't sleep at night without the surgery, then we need to seriously consider that aspect too. (On the flip side, having an esophagectomy is not without psychological effects either.) So, while the decision has been made to not have the surgery at this point, a variety of factors could change that. Dr. M. is willing to go ahead with the surgery if E. changes his mind too. Dr. M. also offered the option of a second opinion with one of the seven thoracic surgeons at MD Anderson, which we declined. We are very comfortable with Dr. M. and have great respect for his knowledge and experience.

Both Dr. M. and his physician's assistant reiterated what a difficult decision we were all faced with. They remembered us from our first meeting, when we had a three-month old Peanut with us and I broke down in tears. How far we have come since then. As E. and I discussed the most recent crazy turn of events, we reminded ourselves that there were hundreds of people right here in the hospital today that were wishing and praying they were in our position. We are so thankful to be counting our blessings, craziness and all.

S.