More Questions Rather than Answers

Today we met with the local radiation oncologist. We had a list of questions for him, most of which he couldn't give us concrete answers to.

* Is the growth in the brain cancerous? It is hard to tell. It could be. It could be scar tissue. It could be necrosis. Because it is in the brain, it is not easy to figure out. You can't biopsy it as easy as you could if it were in other parts of the body.

* If it is determined that the cancer is growing back, is surgery a possibility again? Is cyberknife a possibility again? Yes, they are both possibilities. Of course, both are high dependent on various factors, such as the size of the growth and where the growth is exactly located.

* What about chemotherapy? Is that an option? There are very few drugs that penetrate that blood-brain barrier, but that is something we need to discuss with the oncologist.

* And what about whole brain radiation, which the "brain lady" in Texas implied would be the next step? Dr. T. said that whole brain radiation is really saved until it is absolutely needed because of the fact that it radiates the whole brain, healthy cells as well. The long-term impact of neurological and cognitive functioning is significant.

* If we know there is growth, why aren't we treating right now? Why are we waiting? A few weeks isn't going to make a difference. It is better to make sure we need to treat than to treat something we didn't have to (especially if we're talking whole brain radiation).

Dr. T. and his medical student then reviewed the CD of the MRI we brought with us from Texas. They agreed that there was "more fuzzy white stuff" that wasn't there before. "Fuzzy white stuff" is not good. But it is also not clear. The "enhancement" around the cavities (where the tumors once were) were previously a well-defined border, which is more indicative of treatment effect. When there is new cancer growth, they are looking for more "nodule" looking growth. "Fuzzy white stuff" is neither. It is not a well-defined border, but it is not clearly nodular either.

Of particular concern was the proximity of the "fuzziness" in the front of the brain to the left ventricle of the spinal cord. If this is in fact cancer coming back, there is serious worry about cerebral spinal access. Thankfully, right now there are no signs of this (physically or medically), but if any signs present themselves, an MRI of the spine as well as a lumbar puncture (or 3) would be required to determined if the cancer has "seeded" into the spine. If we come up against that, in Dr. T.'s words, "we're in big trouble."

Dr. T. commented what a unique case E. was. Most Stage IV Esophageal Cancer patients aren't around three years later cracking jokes in his office. Rarely does esophageal cancer spread to the brain. Other places, yes. The brain, no. And if Dr. T. were made to guess where E. would have a recurrence, he would have said anywhere in the brain BUT the two areas around the cavities. After the two tumors were surgically removed, they were treated with cyberknife and Dr. T. was confident that nothing would grow back in those areas ever again. But here we are. There is re-growth in those exact same two spots. As unique as E.'s case is, that uniqueness has served him well. He is defying the odds. He makes people stand in wonder and awe.

As it stands right now, we're sort of in a "watch and see" mode. E.'s case will be presented to the brain tumor review board on January 11th to receive more input. He'll meet with the local neurologist on January 10th and he's scheduled for that follow-up MRI on January 16th. He'll then meet with the oncologist on January 19th, and I'm assuming there will be a follow-up with the radiation oncologist as well.

As far as E.'s feeling, he's feeling pretty darn good. He's getting occasional headaches, especially when the weather changes or the fronts move in. His balance is a tad off, as is his short-term memory (that's his excuse anyways, although it still might be selective hearing ... haha). Speaking of hearing, his hearing has been effected, and unfortunately it is not just selectively. Once in awhile, he gets fatigued, but it's nothing an afternoon nap can't help. And hey, retired folk are supposed to nap, aren't they? :)

Good News and Not-So-Good News

Since our early morning appointment with Dr. A., the medical oncologist, was cancelled, we were wondering how we could most quickly get the results of yesterday's testing. We headed over to Medical Records to get a copy of the PET/CT as well as the MRI. The MRI had not been signed off yet, so we couldn't get a copy of that, but we got a copy of the PET/CT in our hot little hands. A quick skim of the report told us what we wanted to know ... good news! "No abnormal FDG accumulation is identified in the neck, chest, abdomen, or pelvis."

We then met with Dr. L., the neuro oncologist (or "the brain lady" as we call her), to review the results of the MRI. First though, E. had to undergo a thorough neurological exam. Dr. L. is concerned about E.'s seizures and believes they are increasing in frequency (his seizures are not what you'd typically think of a seizures, but rather, they are fleeting moments of missing time, feelings of strangeness or just being "off"). Because he is on the maximum dose of Keppra (anti-seizure medication), she is adding another medication called "Vimpat" in an attempt to minimize these seizures. Dr. L. then reviewed the results of the MRI with us and showed us the images on the computer screen. As soon as I saw the side-by-side comparisons (June's MRI and yesterday's MRI), my stomach dropped. There were changes. I could see it. And in case I wasn't sure about what I was seeing, Dr. L. clearly stated, "There are changes." She explained that there is "more enhancement" around the surgical cavities in both the front and the back of the skull (where the two tumors were removed). Things unfortunately aren't clear cut or black and white when it comes to matters of the brain. Questions remain. Is this "enhancement" a side effect from radiation? Or are the tumors growing? Big questions. No answers. Dr. L. recommended another MRI in four weeks to see if we can get a better idea of what we are dealing with.

We discussed coming back to Texas for the MRI or remaining local. At the end of the discussion, and at this point, I think we decided to remain local. If the tumors are in fact growing, treatment will occur locally and so it's important to get the local radiation oncologists back in the game. We will FedEx the MRI results to Dr. L., who will review them and confer with E.'s local team. In the end, we'll come up with the best game plan possible. Or, if a miracle happens, all that enhancement will disappear and no game plan will be necessary. That would be good. Really good.

Testing Day

Our day began bright and early at 7:00 a.m. when we showed up for E.'s first appointment, only to be immediately greeted by some confusion. E. couldn't even so much as check-in, as we were told his account had been "put on hold" because there had been no insurance approval for this latest round of tests. We were told to have a seat while they tried to work things out. After an hour, the apologetic front desk clerk informed us that he couldn't reach anyone at the business office and suggested we walk over ourselves. We made the long trek to the business office, where we were informed of exactly the same thing: we did not have insurance approval. Apparently, E.'s insurance was denying further testing in Texas, claiming that testing could be done locally instead. Even though it was now 8:30 a.m. in Texas, it was only 6:30 a.m. in Nevada, which meant that the insurance folks were probably still snoozing and most certainly not in the office yet. A variety of people left messages stating our claim to the insurance company; the business folks, the testing folks, the doctor's representatives and of course, E. himself.

Surprisingly, at 8:13 a.m. Nevada time, the helpful gentleman at the MD Anderson business office called us back ... we had insurance approval! We headed back over to Nuclear Medicine to begin the PET/CT process. Unfortunately, the entire schedule was thrown off due to the delay, but we were thankful they were still willing to squeeze us in where they could. We were at their mercy though and settled in for the long wait. It was 11:35 a.m. Texas time when E. began his first appointment of the day (originally scheduled for 7:00 a.m.). From here on out, it was surprisingly smooth sailing. The PET/CT, followed by labs, and then the MRI. Even with the unexpected morning delay, we were still done before 5:00 p.m. Woohoo!

We had one more kink thrown in our plans as well. Dr. A., the medical oncologist, was called out of the office and wanted to reschedule our appointment to next week. Since that's not really a feasible option for us, we'll have to settle for a phone consultation. When, we don't know. We're hopeful we can still get the PET/CT results from someone tomorrow, because I might just be a crazy (crazier?) lady if we have to wait indefinitely.

You'd think this scanning/testing/waiting for results process would get easier. Physically, it does. We have that part down to a science. Emotionally, it doesn't. It simply doesn't.