Bad news. What now?

First read this.

When the morning after my diagnosis rolled round, I called the office of the surgeon listed on my ER discharge papers. While the doctor was about to be out of the office for three weeks (how nice for him), he would be able to squeeze me in that afternoon. I got lucky--at least as lucky as someone with a 14x12x11 cm mass in her belly can get.

I met my surgeon - let's call him Dr. S - the day after my adrenal mass was found. Dr. S is the head honcho of surgery for a big NYC hospital but the only surgeries he does are on adrenal glands. I'm told specialization is a good thing.

As a patient, I quickly noticed that you get treated differently once you get a scary diagnosis. Impossible scheduling matters are overcome. Receptionists act less frosty (for the most part). and my endocrinologist (Dr. E), who has always been terrific, gave me her cell number and doesn't seem to mind when I text or call it. 

But the mundane parts don't change. Dr. S's office isn't any more high tech than that of my other doctors. And given that he treats people like me all day, every day, Dr. S didn't seem all that impressed or concerned with my condition or the impending surgery when he examined me. I suppose that is a good thing.

The appointment was relatively brief. He confirmed that the mass is large and has to come out surgically. He pointed out how the mass has physically displaced my left kidney, spleen and pancreas which explains my appetite extremes, periodic heartburn and nighttime bathroom trips, but not the abdominal pain that sent me to the ER in the first place. So that's weird.

Looking at my CT scan images with me, Dr. S said surgery could wait--until after his vacation and mine (although ultimately we opted to reschedule a long-planned trip to Italy). He said I could workout and essentially live normally. Interesting.

Dr. S also confirmed that doing a biopsy of the mass was a big no. The mass is "self contained" and, if cancerous, a biopsy could release malignant cells into my abdominal cavity. Got it. So while he did say the C word, he seemed, well, neutral or at least non-committal about the future diagnosis.

At this point, I made a point about being excited to have six-pack abs post-surgery. Alas, Dr. S was again non-committal.

Before surgery could be scheduled, Dr. S said, he would talk to Dr. E about the necessary pre-op tests. Most importantly, blood work to determine if the mass is functional would be done. Those results would not provide a diagnosis but would allow the doctors to prepare to replace hormones if needed.

My appointment with Dr. S was on a Friday. On the following Tuesday I went to Dr. E's office to start the blood work. She then called in a prescription for the one pill would take that night before returning for the second part of the blood work.

A key element of the blood work is comparing my hormone levels pre and post pill. The results, I was told, would take a full week. 

 

In the meantime, I had received a follow-up call from the ER. While most of the attention had been focused on my adrenal gland, nodules had been found on both lungs and the source of my abdominal pain was still unclear. As a result, more doctors appointments and more tests would be needed. That week, I spent part of Tuesday, Wednesday, Thursday and Friday in some sort of medical office.

Based on the hospital's location, getting there feels like a grind. But there's no use complaining. We are just getting started.