Yo Yo Jo

Here's the latest in the Yo Yo Life of Pastor Johanna:

Michael and I met again today with the surgical oncologist - first time since the surgery. She started off by telling us a lot of what we've already heard from two other oncologists, about what the Tumor Board talked about. Here's your options, here's the benefits and risks. She also would urge me toward surgery instead of radiation. Seems a no-brainer for everyone. This would diminish my risk so much, she said, I'd really be in good shape. She said all of these possibilities are to diminish my risk in the short term, so that I can use my breasts for what they're for - breast feeding. (I love that from the beginning she has been really understanding about this and my desire for this. I really, really feel that she is treating me, Johanna, not me-just-another-breast-cancer-patient. She has taken my particularities really to heart. What a blessing.) But, she said, sometime after I'm done using them, I should really consider a bi-lateral mastectomy. Since my cancer is caused primarily by radiation, not genetics, this will take my risk of this cancer returning down to essentially zero, since it wasn't invasive and hasn't had access to other organs.

Most of this I knew. Here was the surprising part that I'm trying to come to terms with... again. Dr. Skinner does not think Tamoxifen is so necessary for me. Furthermore, the tumor board, after discussing my case extensively, agreed. It may help, it probably won't hurt (except for the many side effects, like increased risk for other cancers, blood clots, cataracts, etc.), but there is no data to support that it would actually decrease the risk in a patient like me, whose breast cancer is secondary and most likely caused by radiation. Tamoxifen won't reduce the damage done by radiation. What it will do is prevent my being able to have children for 5 years, which then puts me into the high risk pregnancy category and will present a whole new batch of potential health issues, this time for our child. So Dr. Skinner's recommendation was, have kids and have them soon, and then take the breasts off when you're ready.

So whom do I trust? Dr. Skinner and the tumor board? Or Dr. Krebs, the medical oncologist? So I started asking Dr. Skinner about herself. The thing is, Dr. Krebs, my medical oncologist, is not a breast cancer specialist. She is a general oncologist. She was also not present for the tumor board conversation about me. So Dr. Krebs is recommending what is the standard treatment for a DCIS patient like myself - except that I am not a garden variety DCIS patient. I have all these other factors at play, and Tamoxifen wouldn't necessarily lower my risk by 50% like it does for others. Dr. Skinner, on the other hand, is a breast cancer specialist. She has studied all areas of breast care, and speaks regularly with specialists in other breast-related areas, and she's been doing this for 20 years. In conclusion, I'd like to get a second opinion, and Dr. Skinner says the places to go for that are Sloane-Kettering in NYC or Dana Farber in Boston, with a preference for Boston because they specialize in young women. (Road trip!)

But I had really come to some peace about Tamoxifen (emphasis on SOME) and waiting a little while for kids, and once again, I have to reframe my thinking. Gah! Will this never end??

Some other interesting facts we learned today:
Pregnancy is protective, but not really after age 30. (I'm getting married a week after my 30th birthday. Dang.) Related to that, the healthiest thing for breast tissue is to get pregnant as soon as your body is ready, and to stay pregnant or breast-feeding until menopause. But these days, women want to start careers and whatnot, and wait longer to have children. Hence, we've seen a rise in breast cancer occurrence. I would not have put that together! So interesting.

In other news, I'm considering adopting a Dachshund. I can't decide if this is a great idea or a terrible idea, but I'm leaning more on the side of great. He's 8 years old and his name is Claus (!) and his family is moving to Vermont and can't take him with them. If he doesn't find a home by Saturday, he has to go to a shelter. Cue heartstrings...