Just Diagnosed.. What's next?

Welcome to the sorority nobody wants to pledge. Sorry you have to be here but glad you found us.

So far, your diagnosis (“dx"--you’re gonna be learning a lot of alphabet soup over the next few months) is similar to mine, except you have a smaller tumor. (Though mine at dx was guesstimated to be 7-9 mm, at surgery it was 1.3 cm).

As far as looking your diagnosis up, stay away from Dr. Google. He is an idiot, because he has no filter: no objective way to determine the valid info from the utter dreck. (Would say “bs,” but that’s alphabet-ese here for “breast surgeon”). Get your online medical info here, or from Komen or the American Cancer Society (but the mods here do a great job of curating the best and most reliable info and recent developments). Suggest getting a copy (physical or Kindle) of Dr. Susan Love’s Breast Book, as well as the one by surgeon Dr. Elisa Port. Both are updated annually.

When you meet with your care team, the surgeon will first discuss surgical options: lumpectomy (lx) + radiation (rads) vs. mastectomy (mx) vs. bilateral mastectomy (bmx). Many women choose mx or bmx for “peace of mind,” but unless you have bilateral tumors or a strong family history and genetic mutation, I don’t buy that. You usually can avoid radiation with mx or bmx, but not always. And recurrences can happen after mx or bmx, albeit rarely. “Peace of mind” is something for which you need to set your own parameters. You will definitely get anti-hormonal meds--which kind will depend on your age, menstrual status, and any comorbidities (pre-existing diseases) because they all work by different mechanisms; and though they share some common side effects, others differ considerably. They will be the last of your active treatments--with a tumor this small, surgery comes first; then chemo if necessary and if not, radiation; and the anti-hormonals (aka endocrine therapy) after chemo &/or rads.

Whether or not you get chemo will depend on how many nodes are involved, if any, and how aggressive your cancer is (the younger you are, the more likely you will be advised to “throw everything in the book at it). Right now, your tentative stage is IA--because of its small size. I say “tentative” because staging depends on whether you have lymph node involvement and if so, how many are involved. That being said, if you are stage IA (node-negative, tumor smaller than 1 cm, grade 1 or 2) chemo will almost certainly not be recommended. If your tumor is 2 cm or larger and/or you have 3 or more nodes involved, then they’ll usually recommend chemo. If between 1-2 cm and 0 to 3 nodes involved, it’s considered a “gray area” and a sample of your surgically-removed tumor will be sent for a test called OncotypeDX which assays 21 of the tumor’s genes to predict both how well it would respond to (or even need) chemo and how long most women with similar scores will be recurrence-free, so long as they agree to endocrine therapy. If your score comes back 17 or lower, you will be considered “low risk” and advised that any benefit (if any) of chemo would not be worth the risks. If 18-29, that’s “intermediate risk,” and it’s up to both you and your MO (medical oncologist) whether chemo is worth it. About half the women here scoring 18-22 opt for chemo; above that, most women do. If 30 or above, chemo is a given unless you want to roll the dice.

But don’t get ahead of yourself. You will see the surgeon first, and (s)he will lay out your options and the relative risks & benefits. You will pick a surgery date. You’ll get a list of things to do and other tests & immunizations your primary care doc needs to do before surgery, as well as a guide to what to expect on your surgery date and in the days and weeks following. You usually don’t see the RO (radiation oncologist) or MO until after surgery, usually right after your followup with the surgeon.