Saturday, May 24, 2014

While we were making other plans...

Things have changed a lot since the last time I posted here. I will still be going to Okinawa in about 3 weeks, but that's about all that's still the same.

Over the time I've had Perpetual Beginner it's been a personal blog, a karate blog and a writing blog, often all three at once. And for a while, about four years back, it was a cancer blog. Or at least a caretaker's blog, while my father-in-law was fighting (and losing) his battle with common bile duct cancer.

Now it gets to be a cancer/caretaker's blog again. My husband, Rob, had a CT in February as a routine follow up to suspected kidney stone. Instead they found a large mass on his left kidney, and smaller bilaterally symmetrical masses on his adrenal glands. The remainder of February and all of March was running around getting every scan known to man, trying to sort out if the adrenal masses were related to the kidney mass, or something separate, like congenital adenomas - which would be benign. Those tests, up to and including the biopsy on the right adrenal came back inconclusive - nobody could tell us if either adrenal was cancerous or not.

So on April 17, Rob had a radical nephrectomy, removing the left kidney and adrenal gland and sending both out to be sectioned. The verdict came back clear cell renal carcinoma (RCC) in both the kidney and the adrenal gland. Which means it is very likely that the right adrenal is also RCC, but again, we just don't know. Upshot - stage four metastatic kidney cancer.

So now we are trying to decide what to do. We have been to both our primary oncologist, and to two outside specialists to review our options and see if anyone had a clearer idea of what a good course of action would be. The only thing all three oncologists agree on is that RCC is a bugger - unpredictable and illogical, and that no one can give us any certain or even likely prognosis. (Our first RCC specialist consultant described it as "An angry teenager on a Friday night with car keys.") We could choose to do nothing, and have him live a decade or more anyway. We could treat with everything in the arsenal and still have only a few years (or less). The odds shift, but the odds don't tell you the outcome of any given case.

On Tuesday we go back to Dr. R - our primary oncologist, and decide on our actual course of action - well, most likely we get a whole new set of scans, and then a choice of actions. The major possibilities at the moment are: 1) Wait, with regular rescanning and see if the daughter tumor grows, shrinks, or stays the same. 2) Treat with a TKI (pazopanib or Sutent), with regular rescans. 3) Treat with IL2 (Interleukin 2)  or 4) surgically remove the right adrenal, follow with 1, 2, or 3.

Dr. R seems to lean toward 2, and we were agreeing with him until the second consult (Dr. Logan at Indiana University). His thought were that as the mother tumor was so much of the tumor load, it was worth going with 1, until we had a clear idea of how the daughter tumor was going to behave. If it does grow, or worse metastasize, then he recommended going to IL2 as a first line treatment. Apparently there's a recent study that suggests that it is safer to go from IL2 treatments to TKI's than to reverse that and go from TKI's to IL2. Also, there are some cases, not a lot, but some, where removing the mother tumor causes the daughters to cease growing or even shrink, and it's worth watching a while to see if Rob might be fortunate enough to fall into that category.

There are a lot of other considerations flying about as well, which I may talk about in other posts, but suffice to say it's a hard decision that by it's nature is being made on way too little knowledge. There's a lot of uncertainty and fear flying about, and no particular end in sight. This is going to be a long haul (unless we're very unlucky indeed). I'll be posting the extended updates here (short bits of info go on Facebook), for those of you who want the big, messy version of things.

Welcome to the new, more terrified blog of Cindy's life. I hope and trust it won't be all bad/sad news all the time, but it's probably going to be a bumpy ride.

1 comment:

Felicia said...


So sorry to hear of this news. I've been where you are (mom, two aunts) and where he is (10 year BC survivor) so I know it ain't an easy road by far. Hoping your get the answers you need to make informed decisions. Thinking of you and your hubby and sending gentle hugs...