I will begin by explaining the difference between renal cell carcinoma and fat poor angiomyolipomas, so far as I understand it. The latter, also referred to as AMLs – not to be confused with Acute Myeloid Leukemia (that’s someone else’s nightmare) – are made up of blood, muscle and fat. Ours was spotted incidentally during an unrelated CT scan. It was a 4.1 cm. mass in the right kidney.
Did you know renal carcinomas can be diagnosed visually? So three weeks ago we got the bad news – kidney cancer. But wait a minute, the real target had been a 3.8 mass in the hip on the same side. Could be metastatic kidney cancer.
Honestly did not know I was capable of howling loud enough to alarm my neighbors.
But, stat, there was an MRI guided biopsy of the hip lump. Hip tumor not cancer. Rather a schwannoma, a tumor of the nerve sheath, in this case on the sciatic nerve and, in this case, benign.
Can there be kidney schwannomas ,we asked the Google gods. Possibly.
Let’s do another scan, stat of course, to see what is going on in adjacent organs – I imagine this one as High Def – and get a good look at the kidney interloper. Two days later, a voice mail message. Not cancer, but a fat-poor AML.
We had got used to the worst – every day terror, bleak future, all that good stuff. Hearing the no-cancer news, I had to put my head between my knees. One of us fell to cursing. The patient cried.
For three weeks, we had followed doctor’s instructions: prepare for the worst, maybe 17% survival in 5 years, gone in her early 60s. Then, when it was just kidney cancer, not metastatic we had a 96% chance. Now, we were back to 100%, or as close as you can be, given traffic on California freeways. We should have been happy, but we went around muttering, “It’s Tuesday, it must be cancer.” “It’s Thursday, it certainly isn’t.” “It’s Friday…”
We didn’t trust any doctor and certainly not a radiologist. The current one still wanted to call it cancer, despite a visible few fat cells. What we read, and we read everything, told us carcinomas had no fat. A radiologist in 2012 had reported that a tumor of 3.8 cm appeared on the left kidney. We ordered the CD record of it. Definitely, on the right. The radiologist had reverse-read the kidneys. If he had not, we would never have fallen for this funny little trick Nature sprang on us.
Lucky us. Lots of patients have discovered only after they’ve lost a kidney that they didn’t have cancer.
This morning, the urologist assured us that the offending growth will be biopsied when it is removed. When will that be? Well, first the main player, pain-wise, has to go. Simple to cut a schwannoma off a sciatic nerve, just don’t cut too close or -bingo- a different crisis here in Kern County. Recovery will take 2 days. When the patient feels better, she can call and get the kidney surgery date.
The issue of getting something to kill the pain is another whole drama. Governments make doctors’ lives hell when they prescribe opiate-type drugs. As far as I can see their draconian rules have not made a dint in the opioid crisis as yet. The neurosurgeon breezily suggested a pain clinic. Wait times for pain clinic appointments are at least 30 days. We live near an opioid addicted town, we might get lucky on a street corner. But, no, the urologist came through for the next 5 days. Not the same effective painkillers, not nearly as effective and rife with side effects. Weeping over the phone to the pain clinic got us an appointment in 5 days. And this is a temporary need, until surgery, for someone who can’t get up off the couch most days.
I am Canadian. We have the same struggles with diagnosis and waiting for surgery. I once waited for 7 weeks to have an intestinal carcinoid removed. I could eat only fluids or runny pureed veg. Great slimming diet. I was prescribed liquid morphine. But I absolutely never had to think about cost. Not true in California, even with Medicare.
This is a wonderful country, don’t get me wrong. Driving up the I-5 from the neurosurgeon’s, I remembered that, if California were a country, it would be the 5th largest economy in the world. But *#@! it, why doesn’t it take care of its people. My great nephew in Belgium had a 15 hour surgery on his brain, lived to tell the tale and got no bill.
Next up: insomnia of 10 months duration.
“All will be well and all will be well and all manner of things will be well”