Good News/Bad News: The Story of a Yo-Yo

I had told Dr. Skinner right before my surgery that part of me wanted her to find DCIS in another part of my breast so that I could say, "Boy, I'm glad I did that! That was the right decision!"

So when she came into my post-op today and the first thing she said was, "Well, you definitely made the right decision," I responded, "Oh good!" and to my parents, "I told her I wanted her to say that!" But then she went on.

The took out the DCIS they knew was there, and it was about a centimeter in diameter. (More than twice the size of what they took out last fall, which was 4mm.) It was everything they expected it to be - stage 0, low grade (grade indicates how aggressive it is), and easy out. Also, the two lymph nodes they took are clear of cancer.

But.

They also found a very small, 3mm bit of invasive breast cancer. It is also low grade (not aggressive) but moves me from stage 0 to stage 1, meaning it had broken through the wall of the milk duct and was no longer contained. It was near where they originally found the DCIS last fall, but was also an independent occurrence. So, three independent developments of breast cancer in the same breast within six months. And unlike the two instances of DCIS, this more threatening cancer did not present itself early with calcium deposits to be seen on a scan. Probably we would have seen it by my next MRI, but that's not for six more months. So it is very, very good that we got it out.

Of course this opens several conversations. One is that it brings into question the perceived health of my right breast. If my invasive cancer didn't present itself early on the left, maybe it wouldn't on the right either, even with close monitoring. So even though we know my right breast was less radiated, and is thus lower risk than my left, is there any wisdom left in keeping my right breast, knowing that I must be very susceptible to breast cancer? (I will say that I have been glad every day that I only did one side, because having the use of my right arm has made this recovery SO much easier. I would like to dwell on, "You definitely made the right decision," rather than beat myself up for not doing both right now.)

Another, more difficult conversation is how does this change my medical treatment plan? Dr. Skinner said because this is so small, and they do hope they got all of it, chemotherapy is not necessary. But the risk remains that some little cancer cells slipped out unnoticed. So the recommendation is Tamoxifen. This was a possibility last fall, too, and I opted out. This is a drug that reduces the risk of recurrence by some 50% - thus protecting both my right breast and anywhere else that this invasive cancer might have gone. It also increases some other risks - uterine cancer, blood clots, night sweats, cataracts... And most devastating for me, the protocol is to take it for five years, and while I'm on it, I can't get pregnant, because it is a major risk for a fetus.

So here I am: I agonized over the decision to have a single or double mastectomy, and deciding to save my right breast for breast-feeding, with the intention of having a couple kids as soon as possible and then possibly having the other side done. Now, I will likely have to take this drug that postpones having kids. So much for yet another carefully thought-out plan. Even if I opt out of Tamoxifen (so far my gambling with this thing has not gone my way), Dr. Skinner was concerned about getting pregnant soon because if I do have a fairly new, hormone receptive, invasive cancer cell floating around in my body, flooding my body with the hormones of pregnancy will not work in my favor. Some Tamoxifen is better than none, so I could take it for two years, go off to get pregnant, then go back on. Of course, I'll have to discuss this all of with my medical oncologist. Also, the tumor board will discuss my case a week from Monday, and determine whether Tamoxifen is the best choice, and also how this might change our feelings about the other breast.

How am I feeling?

At the time of the appointment, I was receptive to the information, taking it in like I have all along, storing it away to be processed later. I was disappointed but not altogether surprised, I suppose. This was why, after all, I decided to get rid of the whole breast, because I knew I was high risk. So of the myriad emotions I feel right now, shock is by no means one of them. Disappointment definitely makes the list. Discouragement and frustration, yes. Sadness, certainly. I'm getting fed up with every life plan I make getting messed up by this stupid thing. I'm upset and confused that the one thing I have consistently wanted for as long as I remember - children - is the dream that keeps getting threatened. Once again, I am challenged by the fact that I always thought motherhood was my primary call in life, and so why does it need to keep being put off? At this rate, we won't even be trying for kids until I'm at least 33 - I thought that I would have school-age kids by the time I was 33. I readjusted my life plan for having kids in my late 20s, then early 30s... I don't want to readjust anymore.

But now with that pesky word, "invasive," the stakes have jumped dramatically higher. In talking to Michael about it, we agreed that we have tried to be moderate but smart about my treatment decisions, and I honestly don't think I made wrong decisions along the way. They were the right decisions for the information we had, and the place I was emotionally at the time. But three cancer developments in six months, and one invasive, we don't want to mess around anymore. Enough already - let's be conservative about this and do what needs doing so that I can be around for the babies I so desperately want. There is nothing cool or impressive about racking up cancer diagnoses.

Thank you for all your prayers and light and love and energy and cards and meals and laughter. Once again, I ask for prayers for help with discernment. I'm not exactly sure what God is trying to prove with all this business, though I am confident this will someday become apparent. Hopefully sooner rather than later.

(At the very least, Michael and I noted, postponing children will allow us to go on a proper honeymoon sometime next year! Greece or Hawaii, here we come! We have already made a list of all the places we will try to go and things we will try to do to make the most of this post-cancer, pre-kids time.)