Many Doctor Visits

Yesterday was a long, hard day. It was so complicated I’m not sure I can recapture it all. I started at the hospital at 9:45 in the morning and I didn’t leave until 5:45 p.m. It started with the MRI, and ended with a geneticist. In between, I saw the surgical oncologist and medical oncologist (the one that coordinates chemo).

The good news – the body scan doesn’t show any other spots. So there are no positive metastases that we can see. Some of the other news was not so good. The path report shows that my cancer is classified as “triple negative.” This means it is not estrogen receptive, progesterone receptive and it is HER-2 negative. This tumor responds to chemo only and is not affected by the other medications that are given to prevent reoccurrence. So I will definitely have to have 4 months worth of chemo. This type of tumor occurs in about 10% of women, it is more aggressive, and has a greater tendency to reoccur. My prognosis is still really good; there are simply fewer tools in the tool box to fight this “brand.”

The other bad news is that the MRI indicated another suspicious spot in the same breast. Due to a scheduling error, my surgeon did not have this information when I saw him. I left his office at noon thinking I was having a lumpectomy. The call came about 20 minutes after I left. They want to do another biopsy on the affected area. I haven’t spoken to my surgeon yet – but I am now thinking, let’s skip that second biopsy and go for a mastectomy. I don’t want to be worrying about additional spots developing into cancer! The story goes on….

At 2:00 I went to see the medical oncologist, Dr. Laura Hutchins. She is the one that will oversee my chemo. She is the chair of the oncology dept. at UAMS and I liked her very much. We discussed some different options regarding chemo, including one study suggesting that women with triple negative tumors respond better when having chemo before surgery. We didn’t make any decisions, but she gave me several options to consider.

As we began to discuss my family history some more, she suggested I have the test that determines whether or not I have one of the two identified cancer genes. Knowing you have the gene means you have a 40% chance of developing cancer in the other breast! That’s huge! If I have the gene, I would probably want to have a bilateral mastectomy (meaning both breasts) to significantly lower my risk. Suddenly – I’ve gone from a simple lumpectomy on one breast to talking about a double mastectomy with reconstruction! The gene is also associated with a large increase in risk of ovarian cancer – and I still have my ovaries. This is a lot of information to process.

She sent us upstairs to talk with a genetics counselor. Loooong story short – the geneticist says I am at medium to high risk for having the gene but that he would like to see me have the test – not only for my own benefit, but for all the other women in my extended family. Because my sister and I were both young at diagnosis (her at 40, me at 45) there’s a possibility we have the gene. Here’s the kicker – the test is $3,100, it’s very iffy whether insurance will pay… and it takes 4-6 weeks to get results!

So here are the questions I face:

Can I wait 4-6 weeks for results? Is that risky with my agressive type of cancer? If I have the gene, I would much rather have one surgery to remove both breasts than to have one surgery now and one later. I'd like to wait on results.

Do I try to wait for a pre-certification from insurance for the test, or pay for it out of pocket and pray they will reimburse us? We are sure to have many expenses from my illness over this next year. We need to spend wisely. Is this test necessary now?

Do I forget the test for the moment and just move forward with a plan on the existing problem breast?

Do I bother with a biopsy on the second suspicious area or do I say forget the biopsy, forget the lumpectomy – take the whole breast?

And then there are all the reconstruction options that I haven’t even begun to consider. I need to see a plastic surgeon… or two.

We leave on vacation tomorrow. If I am going to have the gene test, I need to decide today and take advantage of this week when nothing else is happening. I will be trying to talk to both my surgeon and my oncologist today to get their opinions. I will also be exploring options to expedite the test. Two different friends, an oncologist and a pathologist that live in other states, both thought results came quicker in their state. They are going to check it out and let me know today.

Just when I thought I had a handle on things, it all got much more complicated. I am devestated at the idea of a bilateral mastectomy. My mind has not wrapped around that process yet. And the triple negative thing certainly adds worry. All in all, the prognosis is still great and I suppose it is good to have lots of options. This just wasn't the news I was hoping for.