Ask the Family: Dandelions and Cancer

Question: What if they say you have a cyst in your kidney? My doctor says they can turn into tumors and that the tumors are cancer, so the easiest thing to do is to remove both kidneys. How can I wait if it’s cancer?

– Pam S., Georgia

Answer: In VHL it is normal to have multiple cysts and tumors on both kidneys. If we operated for every little cyst and tumor, we would all run out of kidney in a very short period of time. So we had to come up with a better way of dealing with cysts and tumors in the kidney.

A cyst doesn’t “turn into” a tumor. But in the lining of the cyst there is often a seedling of a tumor. Picture a seed in a balloon. The cyst is the balloon, a sac filled with liquid. That balloon is not cancer, but it can be big. It may cause some compression problems, but in general, the cyst is a non-event. As the tumor grows to fill up the cyst, it used to seem to “turn into” a tumor.

With improvements in imaging, and greater experience with surgically removed cysts and tumors, we now understand that they don’t “turn into” tumors, but the tumor may grow to fill the cyst. This is why you may hear them talk about a “dense” cyst (looks darker), or a “multi-loculated cyst” (multiple cysts back-to-back, looking like it has two chambers). What is of interest to us in planning surgical strategies is the size of the hard tumor within the cyst, not the cyst itself.

Let’s say for example, that you have a 4 cm cyst with a 1/2 cm. tumor inside. All you need be concerned about is the 1/2 cm. tumor, which is too small to think about surgery. You work with your medical team to watch tumors and check on their growth rates. New techniques like Radio Frequency Ablation can be used to stunt their growth. But as they approach a size of 3 cm, then it’s time to talk about surgically removing the tumors.

Watching these tumors grow is a somewhat foreign concept for those of us who are used to dealing with questions of “cancer” versus “not cancer.” Perhaps dandelions will help you understand why we don’t worry so much about cancer cells in the lining of the cyst, but we do get quite concerned about cancer cells in a 3 cm. tumor. For anyone in a country that doesn’t have dandelions, picture some other small wild flower that spreads its seeds on the wind.

When dandelions sprout in the spring, they start out green — greener than my grass, so I rather appreciate them. Then they grow pleasant little yellow flowers that I rather like, so I enjoy them as a happy sign of spring. But then one day the yellow flowers turn white, and little seeds begin to blow in the wind and go off to seed my lawn and my neighbor’s lawn — not a very neighborly thing to do.

So the trick to enjoying dandelions is to pick them while they’re yellow.

These are all dandelions-what is the risk that each wil spread it's seeds to other places?

Similarly, the trick to managing kidney tumors is to “pick them while they’re yellow,” before the cells mature to the point where they know how to go off and plant themselves in other parts of your body (metastasize). We are working to avoid metastatic cancer. It’s not the young cancer cells that are the problem, it’s the spread — the metastasis — that’s the problem.

You can take a yellow dandelion and crumple it all up and spread it all over the lawn, and it won’t result in any new dandelions. The cells don’t know how to seed the lawn. And yet it’s still a dandelion. You can examine the DNA of a green dandelion, and it’s still a dandelion, but it doesn’t know how to seed the lawn. Think of your cyst as a green dandelion.

Those cells in the lining of that cyst are cancer cells, but they don’t yet know how to metastasize. We may develop a lot of cysts and tumors in both kidneys during our lifetimes. If we take out every cyst and tumor — or if we remove the entire kidney the first time we see a cyst or tumor — we will quickly run out of kidney. The Good Lord gave us some extra kidney to deal with (it only takes 25% of one kidney to do the job), but nonetheless there’s a limit.

So the goal of all these strategies of watching and maintaining the kidney is to stay on your own kidney power throughout your lifetime, and avoid metastatic cancer. That’s why we watch and manage them until the risk is high that they will turn white, and then we “pick them while they’re yellow” and essentially turn back the clock and give you another 8-10 years before you get to that point again.

You say that your doctor suggests that it is “easier” to remove the whole kidney and get rid of the threat of cancer. “Easier” for whom? Perhaps easier for the doctor, since a nephrectomy is a simpler surgery than a partial nephrectomy. But it is by no means easier for the patient, who now has to deal with dialysis and is a patient for the rest of his or her life. The better Quality of Life decision is to apply this strategy of watchful waiting and responsible management of VHL tumors, and stay on your own kidney power.

-- Joyce Graff, Executive Director, VHLFA