IT IS WHAT IT IS (& HOW TO LIE WITH STATISTICS)

On Wed, we met with an oncologist. She had spiky blond hair and red leather boots, and an extremely dry (or possibly no) sense of humor. She kept looking at my dad like he was nuts whenever he tried to joke with her. We all liked her a lot. She also took time out to explain a lot of information to us, except now we have heard/read most of it before, so that was encouraging. I was still uncertain about the relative risk of a lumpectomy vs. mastectomy. Research shows that the success rate (note that I use “success” in lieu of “survival” because I prefer the semantics) for lumpectomy and radiation vs. mastectomy is equivalent. She confirmed this. This (proven) fact does not intuitively make a lot of sense to me, as it seems as if you remove the source then a recurrence would be less likely. I’ve heard the number 1% cumulative annual recurrence rate bandied about, and the oncologist said that this would indicate a 30% chance of recurrence in 30 years. I know this to be absolutely not true, as someone who has taken (and taught) a lot of statistics courses. (Warning, math alert, potentially skip the following) Basically, what she was saying that I would have 100% chance of having a recurrence in the next 100 years… but there’s rarely a 100% chance of anything. Another way to think about it: when you flip a coin, you have a 50% chance of getting a tails. That doesn’t mean that if you flip a coin twice, you have a 100% chance of getting a tails (you actually have a 75% chance). Plus, I would imagine (considering some of the statistics I’ve come across in the environmental field) that 1% number may have a heck of an associated variability. So, even if I try to break it down to relative risk, which I have the luxury of being able to understand, the following are still unclear:
- what is the true “risk” of recurrence for both options?
- is the recurrence rate (not the success rate) different for lump/rad vs. masectomy? We’ve heard different answers on this.
- If I go with the lumpectomy option, can I deal with getting checked all the time?
- If I get checked all the time, are we likely to discover any future issue at a very early stage?
As I start to list these, I realize that there are potentially countless uncertainties, several of which can’t be answered (or will be answered differently by different people). When I first entered this process, I thought that I would go the double mastectomy route because I am so young and I would hate to think there was something else I could’ve done if faced with this in the future. But farther down the path I have done a 180, if it truly is an equivalent option (or at least quite close) to opt for the much less severe alternative, why would I not go for it? I don’t believe I have a huge attachment to my breasts (I’m hardly a swimsuit model) but I also don’t want to unnecessarily go through major surgery that will keep me out of work for an extended period of time and much more importantly, not allow me to pick up my children for 6 weeks. But I worry, am I being short sighted? But then again, is it short sighted to think that I may not want to deal with the daily reminder of “having sandbags on my chest” (as Jewell, who has first hand experience, put it) for the rest of my life? I could drive myself insane considering the different pros and cons and potentially second guessing myself. Luckily, I won’t. Although I’ve hardly been faced with many challenges in my life, I have (like most people) had to make a number of life-altering decisions. In all of those cases, the answer eventually became very clear to me, and in every case, it turned out to be the right decision (because that’s the decision I made the best of).
However, one decision it turns out I won’t have to make it whether or not to have chemotherapy. The concept of chemotherapy originally scared me more than the idea of a double mastectomy, but in the short span of a week, I’ve completely switched. I assume that’s because I learned that the former was a distinct possibility and the latter could potentially be avoided, but still) The new information I learned from the oncologist is that I will need the “max” 8 rounds of chemotherapy. 6 months worth. Followed by 5 weeks of radiation. So much for being better by Jim’s birthday (Feb 23rd) which was my first oh-so-naive assertion, and my hypothetically more conservative hope to do the tri-for the cure triathlon this summer. But, it is what it is. And knowing the treatment path makes it more bearable, somehow. And like jim told me, “who ever thought you would be bald before I would?” At least my hair will grow back!