"Gambling with Cancer?"
Living in Las Vegas I’m familiar with the odds but I certainly didn’t expect I’d want to consult a bookie to make decisions on my cancer treatments. For the very reason that math skills are required, I avoid playing Black Jack. Yet having been dealt a bad hand (cancer), I was in the position of being asked to calculate percentages to make choices about my life! Percentages are used in figuring statistical risk; statistical risk sounds like a gamble. I didn’t want other people to gamble with my life, but I did not have enough information to play my own hand. I began researching the risks of each procedure and treatment. I hoped then could I make an informed decision about the risks I was willing to take to reach a potential winning hand.
“Potential” is a tricky concept. It basically means there’s no guarantee that the benefit will occur. What I found myself faced with was a certain risk weighed against only a probable benefit. For example, multiple side effects will be caused by most chemotherapy drugs. Not all the possible side effects listed on the four-page, small-print handout will happen, of course. However, the more common ones of hair loss, fatigue, bowel changes, brain fog, and nausea are usually a given. Weighing negative side effects against only a possible gain made a decision difficult. Then, add to that equation the possibility of some of the rarer side effects occurring made choosing extra challenging. For instance, what if my heart would be weakened or my eyesight permanently affected? No doctor can predict for sure what line of treatment will work for each patient. The protocols are developed based on the statistically usual outcomes of success for a majority of patients. Even so, I often read about people in my online support group who have tried two or even three lines of treatment which have failed. The question before me was, do I want to risk becoming debilitated in order to attempt to destroy my cancer?
My answer was finally yes, but I did not arrive at that conclusion easily or quickly. If I could have known a chemo drug would for sure be effective, I would willingly submit to terrible side effects. It is not being able to know if I was wrecking my health without gain that was so troubling. I felt like making a choice was a complete crap shoot (minus the bright casino lights). When I met with my oncologist a second time, we discussed how I felt guilty for getting cancer. My doctor assured me cancer wasn’t my fault. He explained, “You are simply unlucky.” I didn’t expect to find that fickle Lady Luck in my oncologist’s office!
There is much that can be overwhelming to a newly diagnosed cancer patient, but for me, one of the toughest aspects was realizing I was responsible for life and death decisions based on the statistics of other people. My oncologist, of course, set out a treatment plan and advised me what was medically necessary in his professional opinion. However, as I was asked to sign papers attesting to the fact that I understood the chemo-drugs could cause multiple horrible things, including death, I knew the final decision really was up to me. I could refuse treatment or go elsewhere. I recognized the deck was stacked against me because I had aggressive triple negative, stage-4 breast cancer. Nevertheless, I remained hopeful of hitting the jackpot (becoming cancer-free) and signed on the dotted line.
Statistics contain a margin of error which is a concern when using small percentages. One acquaintance serves as an example. A local doctor (not one I knew) suggested to a lady that she needed chemotherapy and radiation after surgery though there was no cancer found in her lymph nodes or anywhere. He told her to do these “treatments” as a preventative. She told me he claimed it would improve her survival chances by 12%. Is there a margin of error of 3%? If so, her chances might be improved by only 9%. Even then, she could not be certain of a 9% greater rate of avoiding recurrence. It is only the number of a statistical probability of increasing her chances. Poker, anyone? The number seems trifling in comparison to 100% certainty of having detrimental side effects from chemotherapy.
Another problem with using statistics is that they are not completely reliable in the general population. A plan to weigh the risks and benefits sounds feasible, but the results in practice are not always the results obtained in a clinical trial. One can only conjecture why this is, but it happens, making the touted benefit even less certain. “The situation points out the difference between proving efficacy in a controlled clinical trial environment and translating that finding into the general population, beyond academic and major medical centers.” Even The Centers for Medicare & Medicaid Services panel recognize this fact. They convened to discuss lung cancer screening in the Medicare population. “Panel members expressed concerns …the balance of benefits and harms might differ with general usage.”* It remains up to you to balance your risks against the benefits.
Any decision is acceptable as long as it is the one you are comfortable with, not one you are pressured into by chilling statistics. Understand, also, that we can all make a wrong call. That is why it is critical for you to learn all that you can. You have to know when to hold ‘em and know when to fold ‘em. We won’t all win. However, in my way of thinking, we need to manage the hand we are dealt, not pass the responsibility to someone else to gamble with.
Reflection:
1. Do you ever think about the fact that you might be in the minority group statistically, no matter how bad the majority statistic is? (In my case of a TNBC, stage-4 diagnosis with a 90% recurrence rate, some people have to be in the 10% group having no recurrence of cancer.) Just because something is more likely to happen, does not mean it will happen to you.
2. Do statistics sound scientific and pressure you into making a decision you really don’t want?