To say we have part one of the diagnosis is a good thing, but to have been working as long as we have to get a diagnosis, and still not have a complete one is frustrating. Considering that the news we’re learning is not all we’d hoped for, the longer it drags out the more frustrating it becomes.
When Terry saw the local surgeon last week who believes the thyroid is connected to the functioning adrenal gland, we felt he was on track to something that would prove conclusive. At the appointment with him today, we found the thyroid biopsy results were not yet in. He told us he had attempted to contact the oncologist to speak with him directly, but could not get a call back.
Even more evidence of how convoluted and confusing this experience has become came when he told us he’d spoken to the primary care physician who had made the original referral to the KU Med system. Our PCP had no clue of any of what was happening, but as soon as the surgeon started giving him lab results, he realized what was going on immediately.
This is where it starts to get complicated, so bear with me….
The labs Terry had showed that all hormone levels were outside the normal range. They were all too high, and adrenalin in particular was very elevated. This proved to him that while the adrenal gland mass was non malignant, it was functional. Because of the continued increase in hormones, Terry had developed secretions called calcitonin or c cells. These c cells create a pheochromocytoma, or tumor in the thyroid the surgeon thinks is causing medullary thyroid cancer.
There are two reasons this matters. First, it compromises his ability to safely get through whatever surgeries come his way. There is already discussion about removing the thyroid and prostate, but before he can endure those two procedures he needs to have the adrenal gland mass removed so he is not bombarded with increased hormones when his body is stressed from surgery. The second reason it matters what kind of cancer this is is the medullary thyroid cancer is more aggressive than more commonly diagnosed thyroid cancers. This strain can spread early in the disease process, so it needs to be addressed before it does that kind of damage.
After his appointment, I did get a call from the oncologist’s office who confirmed the biopsy showed malignancy. I told her what the surgeon had to say and that he had tried calling the oncologist, but it turned out he’d been on vacation. (That’s two of the doctors Terry needs who are/were on vacation…I’m trying to be mindful of the fact these doctors deal with hardcore stressful situations, but it doesn’t make my situation any less stressful to be in a constant holding pattern trying to figure out what’s going on with Terry.) I called the surgeon’s office to inform them the biopsy was positive, but they weren’t saying it was medullary cancer. He was going to call the oncologist and confer with him because he is convinced the oncologist is not seeing the total picture. In the meantime, there is an appointment scheduled for Monday with the urologist who will do the biopsy, and what eventually may be the prostate removal. None of that starts until after the biopsy, which is at LEAST another week away.
Interestingly, Terry got a number from the national cancer website and called and talked to someone. He, like I, is concerned they are going to find more. He wanted to know how early it is that you can track these cells that either metastasize or create malignancies, but they couldn’t answer his question. Earlier we had discussed how confusing it is to think about what it is we want to be told is going on now that we have confirmed the presence of cancer in at least one of the two sites. We literally have no idea where we’re headed. Yet. We’re hopeful each new appointment will yield insight, but they mainly serve to let us know we don’t know much. Yet.
He also had an appointment yesterday with his cardiologist who reminded us his heart is still in tough shape. His ejection fraction is fairly consistent in the 20% range now. The cardiologist did not feel that would change much, but Terry did need to do what he needed to do to keep it from going down any more. He was a bit surprised, as I think we all are, that Terry is going through yet another life compromising health situation.
So, next week brings consultations with the urologist, the oncologist, and hopefully the scheduling of both his biopsy of his prostate, and removal of adrenal gland mass. That would certainly feel like movement in the right direction!
