Halfway through my high dose interleukin 2 (Proleukin) treatments, having completed weeks 1 and 2 and into the second rest period, I got the second most important scan of my life. The most important CT scan changed my life, with its image of a tumor larger than a baseball, and countless tiny specs of white death in my lungs.
This new scan in August of 2004 would let me return to the hospital for more of the immune stimulant, Proleukin, which revved up my internal immune system to the max. My system was then to recognize and fight off the residual kidney cancer that had settled visibly in my lungs and any other new sites, as yet unseen. The new vocabulary of cancer forces me to say that while hundreds of tiny lung mets/lesions/nodules–no wonder we patients get confused–were not just there, but ” visible”. Implicit was the message that many hundreds more were invisible, certainly alive and thriving, just not yet “imaged”.
The tools of imaging cancer are varied and unequal, some more effective for some cancers, and yet inadequate for others. First of all, the tumors are measured in centimeters and millimeters, and that language shift alone makes them even more inaccessible to Americans. Just how big is 9 millimeters anyway? And a centimeter seems a pretty vague measurement after years of holding thumb and forefinger together to how 1/2 inch with decent precision. Is a change from7mm to 9mm cause for alarm?
Plus the panic of hearing “cancer” drives any math computation out of one’s head. The only math question that can be asked and then not understood is, “How long have I got, doctor?”. And then there is the matter of what can be seen with which instrument. When doctors tell smokers that their x rays are clear, naive civilians translate that to mean their lungs are free of cancer. A rough interpretation might be more like, “Your tumors–if you have them–aren’t big enough to be captured by this 100 year old device. Come back when we can see something/you are pretty much past help.” Notice that I provide the translation here.
The x ray is more like using a child’s microscope to look at something; great for noticing crud on your pet’s hair, but not quite like those grownup electron microscopes which can see cells. Note to kidney cancer patients–don’t even bother.
Another imaging device is a PET scan, which measures the activity of cells, and which I understand a quick snap shot of liveliness of the cell, and it manifestation, the tumor. Is it chowing down on the body’s nutrients faster than the orderly cells? That activity will “light up” in a PET scan, so the lazier cancer cells might be overlooked. Not to effective in kidney cancer, whose tumors are often slow-growing. That is also possibly why kidney cancer can establish itself so thoroughly in so many patients, not noticed until a broken rib or vague back ache or a non-existent ulcer finally results in a CT scan. Note to lots of kidney cancer patients–don’t even bother with a PET scan.
So a CT scan, with contrast to enhance the vague and ghosty images is the way to go for most RCC patients. A blood test to see if the single kidney can handle the assault of the imaging fluid precedes the test, and then the patient settles onto a big padded tray which is drawn slowly into a large doughnut-shape machine that somehow can see into the patients insides. I’m not even trying to explain that.
That exam is not painful, not pleasant, and not anything you can study for; you simply submit, as patients are supposed to do, and then the impatience begins. Most patients must wait to get their results from the doctor, and this is the longest wait of one’s life. Am I dying more efficiently than before? Are the cells multiplying more quickly? How long have I got, doctor?
But I had learned the secret, which I now announce to all. You are ENTITLED to your own reports, and with a bit of research as to when they get read, you can go get them. Apparently for many imaging centers, this comes as a surprise, but we are all grownups and can explain that. Sometimes your doctor will need to hear that too. I have always just called ahead to the “Medical Records” department and asked for the report to be ready, as I have no patience…again.
But in August 2004, I had to be outside before I could read it. To read a report of impending death inside a hospital with its metal window frames and linoleum floors and sad, bent people waiting their turns is too harsh a setting. Immediately stepping outside, I could rip open the envelope, and read that my lung tumors were shrinking, even those big ones. The 13mm lesion was now 8x9mm, the 8x7mm lesion was just 4x4mm. And the countless other unmeasured one? They were likely shrinking, too. And 9mm is .354 inches, which I still can’t measure between my thumb and forefinger, but the CT scan could, and that was good enough for me.
Back to the hospital, a much easier trip than before, to get two more week-long sessions of HD IL2. The mets were shrinking and I was getting more ammo against them. The cloak of invisibility was pierced and my immune system was working again.