Kidney cancer is generally a very silent disease. It is sneaky, hides out for years, and is often assumed to be something else. In my case, my doctor essentially decided I was just a menopausal women with the ever-popular “stress” as a an extra. The stress of carrying about a 10 cm tumor and wasting away was probably part of it.
That slow diagnosis, often delayed for years is far too typical. Only the greater use of CT scans has been significant in finding kidney cancer at an early stage. And just what is early or small? Looking for a cracked rib, or the dislocated shoulder has often revealed kidney cancer, and in the case of the shoulder, lung mets. And then the hunt is on! By the time this diagnosis is made, nearly 30-40% of kidney cancer is already metastatic.
The ‘classic triad’ of symptoms, are 1) blood in the urine, 2) flank pain, and 3) palpable mass in the abdomen. There are doctors who will consider kidney cancer only when the patient has these three symptoms, but that happens in fewer than 10% of patients. The cancer has to be pretty far along to be found this way. Meeting a pair of new doctors who were aware of my kidney cancer, they were obviously bewildered to hear that I had had none of the these symptoms. “But those are the usual symptoms,” one said. Maybe ‘classical’, but not ‘usual’. Unfortunately that expectation is a barrier to good diagnosis.
Beyond the diagnosis and the staging of the disease is the pretty obvious question of what to do next. (Staging: another of those words used one way in English, and quite another in medicine No wonder we are confused.) Getting treatment is derived from that ‘staging’. To be told your cancer is at Stage I seems the only bright spot of a cancer diagnosis, but not so reassuring with kidney cancer. The “SMALL” Stage I kidney tumor is one which is confined to the kidney (good news) and is 7 centimeters or less. Maybe Europeans react with the required, “Yipes!”, but few Americans would until they know that this is almost 3 inches in size!
Ain’t so small in my world, or in my kidney!, or anywhere else. In my previously-naive patient world, I thought a ‘small’ tumor was the size of a pea, or maybe a peanut. In any case, these so-called small tumor are Stage I, of four Stages. Don’t even ask about Stage V. Calling a near-three inch tumor small reflects the history of many very large tumors being found in the early days. Even in 1997 there was discussion about whether a 5cm (2 inch) tumor should be the ‘small’, and in the 1987 system, it had to be 2.5cm to be small, ie, about one inch a T1 stage. I do not understand why this basic staging was so dramatically changed, but it may well be that there were so few truly small tumors found in this early CT era.
In any case, we now have a system which lumps all tumors 7 cm or smaller into TI category, re-divided into T1a if under 4cm, and T1b, up to 7cms. This minimizes the sense of risk that comes with these larger Stage I tumors, despite clear evidence of much greater risk at about as they grow. That shift to a more aggressive tumor, capable of having metastatic potential, seems to start just over 1 inch, about 2.8cm. There is a measurable increase in risk of about 62% at this size, so waiting around for a mass to be palpable (ie, it can be felt) puts us all at risk. And of course, that metastatic potential has likely started even earlier, prepping the body to accept new cancer in new locations.
Thus, the absolute need to monitor patients who have had large ‘small’ tumors far more carefully and for a longer time. The reality is that even truly small tumors have the ability to start the metastatic process. Tiny and invisible even to a CT, they can grow unnoticed for several years. There is no magic ‘five years/safe at home’ for kidney cancer patients, sad to say.
So, if your doctor tells you not to worry, that he got it all, that it was small, that there is no need for further monitoring, you might just find another doctor who keeps up with the kidney cancer literature. If you got this far with this post, you may be ahead of your doctor.
Re the above risk stats, seehttp://www.cancertherapyadvisor.com/renal-cell-carcinoma/renal-cell-carcinoma-larger-tumors-high-grade-pathology/article/415189/