This feels like it's starting to work its way toward a plan. There is still too much unknown for my comfort level, but at least we know that by a month from now he SHOULD have one surgery completed, with one to come. At this point, it may work out exactly opposite the way they originally indicated they wanted to address the masses. Go figure....
I know that there have to be times when Terry thinks I have too much to say to the doctors, but I hope in the long run he realizes that I truly am only trying to keep them on task where he is concerned. Today was yet another example of feeling like it makes a difference that I'm there.
The adrenal gland mass is a source of concern as far as Terry and I are concerned. We both think based on the way he feels, and the symptoms they list as a consequence of having the pheochomocytoma, that he does. The oncologist has seen two labs, one showing an increase in hormone production, and one that was less conclusive. From his perspective, based on a 50/50 with the labs and the fact that Terry did not have high blood pressure that there really wasn't a pheo at work. He didn't dispute the mass, but didn't think it was functioning in the absence of high blood pressure.
Terry has an ejection fraction of 20%. The oncologist is not familiar with Terry's cardiac history, so I felt compelled to ask with an ejection fraction that low, was it even possible for Terry to HAVE high blood pressure. He agreed that was not a likelihood. I asked if he had seen labs that had been processed through our primary care physician's lab. He had not. So the report that the PCP, the local surgeon, and Terry and I have seen showing all hormones tested outside the normal range has not been seen by anyone from KU Med.
This continual dance of one step forward and two steps back is getting very wearisome. From my perspective, when the oncologist's office called to verify the thyroid cancer, I told the doctor's nurse that the surgeon had this concern and had attempted to contact him. Evidently they still had not communicated. I do know if the pheo exists that it would have been determined by the time surgery got scheduled. The day of his prostate biopsy they have a nuclear scan scheduled to check out the adrenal mass. By raising the issue of his ejection fraction and the other labs he has not seen, the oncologist had some blood drawn before we left KU Med today, and Terry was in possession of the infamous orange urine jug.
Now, if the results of the blood and urine work ups show the adrenal gland mass is functioning, he won't have to have the nuclear scan scheduled for May 24. He will have to take an alpha blocker to reduce adrenal production, and a beta blocker to protect his heart, for two weeks prior to his surgery. By determining this before the prostate biopsy, he should be able to have surgery sooner. I asked if the thyroid could be removed at the same time the oncologist removes the adrenal gland mass, and he believed that could be accomplished. The benefits of that are only two surgeries and recoveries rather than three. Right now it's looking like that first surgery can happen early in June.
The bad news, and there always seem to be some, is that based on the ultrasound done prior to the thyroid biopsy there are lymph nodes on both sides of the thyroid showing mass. The oncologist says there will be a pathologist in the ER to check tissue until all cells are clean, but I'm concerned this means there will be a need for chemo and or radiation now. I know he was hoping, and I was hoping I know, that he wouldn't have to go that route. Now we just need to find out for sure about the adrenal gland mass and the prostate. That's all... For now....that's all.
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