The beginnings of a plan

I should have written this hours ago when it was all fresh in my mind, but we had lunch after my doctor appointment, then picked up things from my apartment, and by the time we got home I just conked out...exhausted.

It was a good day. I was a little confused and didn't realize I'll have more than one doctor. Today I met with the surgeon who will perform the lumpectomy or mastectomy, whichever is decided when we get there. She was fantastic--she has a philosophy of educating her patients to help them make the best decisions for them. She gave me a ton of information, which I couldn't begin to detail here, but it made me feel comfortable with what is going to happen and the decisions I need to make.

Before I go on, a caveat: Because of the program I'm on, I basically have two surgeons in the city I can see. The other one didn't call me, so while I could follow up with them for a second opinion, I decided that I'm comfortable with this one and the team's approach (they're at Sutter Health) to stick with it. I am also making my treatment decisions based on our discussions and my particular cancer and body, so please respect my decision and do not offer your opinion or beg me to change it.

It was the surgeon's suggestion to do chemo before surgery, because it buys us time to be able to really weigh the options as far as the surgery and reconstruction go. It also has a chance to shrink the tumor, and it may be small enough to do a lumpectomy instead of a mastectomy. But then, depending on other tests and factors, I could still end up having the mastectomy anyway. Anyway, about 8 weeks after surgery I'll have radiation therapy.

If we do a mastectomy, we will probably put in tissue extenders (I think that's the term!) to start reconstruction, then opt for the tummy tuck option where they use belly fat to reconstruct the breast(s) next year after I'm all done and cured of cancer. But that doesn't have to be decided right this minute and I have time to find the right plastic surgeon and everything.

I already deduced this from the initial pathology report and internet research, but the type of tumor I have is aggressive and fast growing, but highly responsive to chemotherapy. It is negative for all the hormone receptors, ruling out some drugs I can take, but that's OK because the chemo will get it. If I understand correctly, it's actually favorable that one of those is negative--HER-2.

The rate of survival is the same whichever you do first, and there aren't really any down sides to doing chemo first, and the up sides are pretty good. So, that's what we decided. She also ordered an EKG to make sure my heart is healthy enough for the anesthesia, a chest MRI, and a PET scan to see if there is cancer anywhere else. She'll also be installing a chemo port in my neck.

A Nurse Navigator sat down with me and gave me lots of information, a binder full of stuff to study, and answered more of my questions. She'll be available if I have more.

I'll meet with the medical oncologist next Thursday so he can decide how much chemo (surgeon said 4 months is pretty typical) and which drugs, etc. I should have all the other tests done by then so we'll have a pretty good picture of what's going on. They will call me if they can get me in earlier with a cancellation, but he is meeting me on an afternoon when he doesn't usually see patients so they are getting me in as soon as they can. I imagine chemo will start the following week. And that's when the hell begins.

The fatigue I'm experiencing is definitely from the cancer and will actually get worse as treatment progresses because of the side effects, although I should start seeing improvement in the pain/swelling/fluid production in my breast from the first treatment. Because it will attack my white blood cell count and lower my immunity, I have to be super careful to not expose myself to colds, flus, or any other disease/infection. I will have to be very careful about where I spend time in order to avoid complications. I will not be dancing or teaching until chemo is over, which bites. I will have to be selective about other activities as well.

So I got a lot of questions answered, and the manner of the surgeon and nurse navigator put me very much at ease. I feel more confident about my prognosis. I feel good that we are putting a plan in action, even though there are still details to work out. I had hope before, but I have more now. I know the next few months will suck, but I'm ready.