Inching Forward

We went to two different doctors today in two different buildings (a cancer center and a breast care center) and now we have all the answers! Ha! Just kidding! Apparently, the motto for cancer treatment is "hurry up and wait." We were hoping to get some treatment scheduled but it looks like it will take three more appointments before we'll have a regular radiation schedule. We couldn't even make those appointments. "Don't call us, we'll call you."

We managed to make some major decisions. I hope they're the right ones.

We've chosen full breast radiation, mostly because partial breast radiation isn't available in the area. We'd have to go to Boston and while it's a shorter treatment (5-10 treatments rather than 30), it doesn't have the research on younger women to definitively prove its efficacy. There are clinical trials being planned for Springfield but it's not yet available.

The concerns with the radiation regiment we've chosen are:

• It's daily--5 days a week--for 6 weeks. While the radiation itself is brief (5 minutes) they say to allow an hour for everything.
• It requires two tattoos for placement of radiation equipment, but they're not fun designs, like skulls and crossbones or tasmanian devils or kokopeli. Just two dots.
• It's permanent, which means that if it doesn't work and cancer recurs in that breast there's no re-treating with radiation. Any recurrence will require a mastectomy.
• There are side effects, many of which are invisible to the public--just annoying and uncomfortable. We're meeting with the Boston experts next Friday to talk about complementary treatments to fight the fatigue everyone warns about.

The systemic treatment we've chosen is Tamoxifen, which is a hormonal treatment given by pill. Chemotherapy on top of radiation and Tamoxifen would only reduce my chances of recurrence by an additional 1% and comes with dangerous and potentially life-threatening side effects. Apparently, chemo works best on HER2 positive cancers (not my kind) and Tamoxifen works better on hormone positive cancers (what I have). The major concerns for Tamoxifen (that I'm willing to post on a blog my parishioners read):

• Hot flashes are the most common side effect and they can be so severe that they lead to sleeplessness, fatigue, and moodiness. Maybe the Boston experts can help us combat this or the maybe the fabulous community of survivors can help. Although, I've met several Tamoxifen patients that are suffering without relief.
  
  
• There are some severe side effects like blod clots and uterine cancer, but the risk for my age group are slight.

The doctor recommended genetic testing to help us decide what other treatments may be advisable. But that's another appointment with other folks. We'll get to work on that.

I agreed to be part of a medical research prodical studying the weight gain of breast cancer survivors. This requires just a little effort on my part: 4 appointments of blood work, physicals and surveys over the next two years. They emphasized that there may not be any direct medical benefits to me; I wanted to do what I could to help them answer the questions about breast cancer treatments. There will be 100 women in the study (I'm the 81st to sign-on). I hope women will benefit from these research efforts in the future.

The first step now is a post-operative mammogram (a "mammo" to the medical professionals) scheduled for next Thursday. They wouldn't let us move any faster than that due to the residual swelling from the infection. So depending on how quickly they can schedule the "simulation" and "treatment field" appointments for setting up radiation, it looks like I should start radiation by the end of May or beginning of June.

A side note: We received a great, comprehensive patient education binder with loads of information on surgery, breast cancer vocabulary, treatment options and support groups compliments of the Rays of Hope folks. It contains lots of the information we've been researching for the last month--too bad we didn't receive one at the time of diagnosis. Glad to have it now. It looks like they're doing good work.