The funny thing was that I didn’t tell very many people about it unless they read the blog post. Basically, it was just my mom, my boss, the Laser Cat group chat, and my manicurist, who was mostly included to explain the giant bruise my hand that had resulted from a failed IV insertion when I went to get my nails done the day after surgery. It’s interesting because this time of year my Facebook memories are full of six-year-old updates on my pancreas drama posted for any “friend” who wanted to read them. I guess I’ve become less public in my sharing since then, but let’s face it, even minor breast surgery is a lot more “triggering” to people than major pancreas surgery, so I was not in a big hurry to draw attention to it. As I explained to my manicurist while laughing about her inclusion in the small group of people that I had told, “If you tell people, they’re like, ‘Oh my God, you have cancer’, and I totally don’t have cancer.”
Well, it turns out that I totally had cancer. Well, maybe I had cancer? Pre-cancer? Stage 0 cancer? My boob had a small number of cancer cells performing short time trials to see who would wear the leader’s jersey in the first real stage of the Tour de Cancer? (Worst charity ride name ever.)
Whatever you want to call it, a week after the surgery, the doctor called me to say that they had found DCIS in my pathology report. That stands for Ductal Carcinoma In Situ, so the “C” is, in fact, “The Big C” that we all fear. Luckily, the “IS” stands for a Latin term for “in its original place", meaning that it was just hanging out in my otherwise unused milk ducts not really hurting anything yet. It was already removed with a nice “clear margin” before I even knew it was there.
That hasn’t made the week since finding out any less stressful. DCIS was all I was told on the phone Friday night, with no details about my particular case. I would have to wait until my surgical follow-up on Wednesday for those. That made for a not-very-awesome weekend of worrying while still trying to muster the energy to go ride bikes in the cold. I did a pretty good job of holding myself together until the appointment on Wednesday, only crying a bit on Saturday night, mostly because I was frustrated at having important information withheld from me for several days longer than I thought it should have been. Obviously I spent a lot of time Googling from Saturday-Tuesday.
When Wednesday finally came, the news was better than I had feared. I was very afraid of having to have radiation, partly because it sounded awful and because of what it could potentially do to my TSE plans. The first order of business was the BRCA test, which is a genetic test for hereditary breast cancer risk for which a positive result pretty much means a double mastectomy in the near future. Luckily, positive results are also rare. I should get that test result in the next 1-2 weeks, and given a negative result, the decision will need to be made as to whether I will get radiation or not.
The surgeon handed me an article from Time magazine about over-treatment of minor breast cancers and what some researchers are doing to figure out how to responsibly treat patients with less intervention. He showed me a chart of the Van Nuys Prognostic Index which is one guide that can be used to determine the likelihood of DCIS coming back after surgery with no radiation. I was the best case scenario for all columns, except for my age, and he told me that basically any radiation oncologist would say that I needed radiation based on my age. In this case, younger is “worse”, because the longer you have left to live, the more time the cancer has to come back before you die of something else. Then he told me that the radiation wouldn’t be as bad as I was imagining, and that I would “feel normal for the first four weeks, and then get kind of sunburned and cranky and take it out on (Frank) for the last two weeks”.
The upshot is that the decision whether or not to have radiation is really up to me. By the current standard of care, I’m “supposed to” get it based on my age. The problem is that radiation will only cut my not-actually-that-high chance of recurrence in half, give or take depending the source of the information, and once it’s done I won’t be able to radiation in that breast again or have much of a chance at successful breast reconstruction if I get a new, worse cancer in the future. And the chance getting a new, worse cancer in the future is relatively small, but still real, whether I get the radiation now or not.
Rather than treating my age and its accompanying long window for recurrence as a reason to take the “kill it with fire” approach now, I’d rather take the approach that with current medical technology, I only have so many cards to play, and I’d rather save them in case I need them worse later. I’d prefer to just keep a close eye on the situation, and hope that treatment options improve before my long window for recurrence is up. Better yet, my real hope is that I side with the majority of women with my size and grade of DCIS who never have a recurrence and thus don’t have to worry about future treatment options. Plus, I’m already going to be tired and cranky enough this winter getting ready for the TSE.
It’s interesting because, as stressful as this week has been, my brush with “The Big C” doesn’t feel as huge as one might imagine. It’s tough making the decision about what I want to do when it goes against what I’m “supposed to” do. Luckily, my in-house rhetorician supports me, and has been helping me practice my talking points for defending my choice as well as practicing them himself on my behalf. I know that I’m going to have be vigilant for the rest of my life about this, but once a little time passes, I think it will feel normal and less stressful, and this little brush might have saved me from something worse in the future.