Jan 07, 2013 - 6:41 am
I am posting here, because you all will understand. On Dec 19, six months out of surgery to remove a 5.5-6 cm clear cell (Stage 1b, grade 4 from 15% sarcomoid features), I had my first followup scan. The scan was a full torso scan, including the lungs. I expected NED, instead, I have mass was found on the upper left lung ( 1.5 - 2 cm). Since then, I have had additional tests: a PET scan and Brain MRI. The workup is being done at NIH.
On Wed., I find out what is going on. I have read on line information, and while it does not look good, it is often dated. And the sample size is often small (e..g., the study contained 10 people with single sarcomoid mets, three of which survived). I have overthought the situation; since I have more unknowns than data points, it is non-unique and underdetermined (I a a computational scientist, sorry for that). This means that, for example, I am trying to figure out when someone will arrive at my house when I do not know when they left on the ride. I can only say if this, than that.
So, this week, the strugle is sanety. I want to know. What I hope for is that the mass does not appear to be active. However, after the radical nephrectomy, I developed a fever while in the hospital. There, they did multiple chest x-rays. I assume if the mass was there then, I would know about it, as they were looking for things like that (however, it is possible that it did not show up on the 2-D x-ray. So, I am slightly pessemistic.
Regardless, I am trying to muddle through until Wed. Then, I will find out 1) if it is active, and 2) a plan of action. (this is at NIH) On thursday, I go to my regular urologist for a second opinion. With a plan, I can move forward. I know I will not sit feeling sorry for myself -- that is what I did in May after the RCC was found. Instead, my wife, daughter and I will go on Vacation. (we will go either way). The thing that I do know is, if they have to do something, I will feel worse immediately after than I do now.
Sorry for the ramble.