Monday, May 12, 2014

Next steps

It's been over five years since my breast cancer diagnosis. At this time five years ago, I was undergoing radiation therapy, and starting on tamoxifen, a drug that has been proven to decrease recurrence of breast cancer. I've been on tamoxifen for five years. Now it's time to plan out what to do next. 

With cancer, you always think it's over, and it's not.

The issue at hand is that breast cancer can be a very tricky cancer. Even if discovered early and treated appropriately, it has this nasty tendency to come back in a much worse form. As an article in puts it, "although women with early-stage hormone receptor-positive breast cancer have low recurrence rates initially, they have a constant and unrelenting risk of relapse that extends up to 15 years despite the use of adjuvant therapy." (italics mine)

The fact is, up to 30% of women have their breast cancer come back as Stage IV: metastatic disease. There is no cure for Stage IV. You can live with it for a while -- maybe even a long while -- and there are many treatments to try, but eventually, you will die from it.
Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at:
Estrogen receptor (ER)-positive breast cancer is unique among common solid tumors in that no patient can be considered cured, and recurrence rates remain almost constant for up to 20 years. - See more at:

Sorry to be so harsh, but it's the truth.

So I've had the surgery and the radiation and taken the hormone blocking medication (tamoxifen) for the required five years, but that still may not be enough to prevent it from coming back. So that's why I headed back to the hospital last week. To see what the plan should be for the NEXT five years.

Just going to BIDMC is always kind of strange. They use a particular antiseptic hand wash in the bathrooms, and the acrid smell pulls me right back to five years ago.

I made my way up to the ninth floor, to hem/onc, to meet my new oncologist Dr. Lowell Schnipper. This is my third oncologist in five years, and the first time I've had a male. He's an older gentleman, and he had a very kind, gentle way about him which I really appreciated. He didn't beat around the bush. He is concerned about the blood clot I had in my leg last year, and worried that if I continue on tamoxifen, this might be a problem in the future. Also, he talked about research that shows that using tamoxifen and a different medication called an aromatase inhibitor in sequence has better outcomes then tamoxifen alone. That means that to keep possible future cancers at bay, it's best for me to continue with a different drug, an aromatase inhibitor, possibly for the next five years.You can read more about aromatase inhibitors (know as AIs) here.

The issue now is whether I am pre-menopausal or post-menopausal. They want to switch me to the aromatase inhibitor, but I can only take if if I'm post-menopausal. So suddenly I'm hoping that I am post-menopausal (although I don't think that I am based in my family's history of late menopause). If I'm not, other options would be to have my ovaries removed which would make me postmenopausal, or to take a monthly shot of Lupron which would shut down my ovaries and then I could take the aromatase inhibitor. Either way it seems like tamoxifen and I are about to break up. (Not that it's been such a great relationship.)

So the current plan is that I go off tamoxifen for 6 weeks, then get a blood test to measure my hormones, and then we will have a better idea if I am pre- or post-menopausal. Then we will make a decision what to do next.

So I'm sitting with this doctor, and all of a sudden I find myself saying to him "I know that breast cancer can come back in a much worse form. I have a 14 year old. I need to stay alive for as long as I can."

All of a sudden I'm talking with this person I just met about life and death. It's really kind of freaky.

By the time I got home, I was emotionally exhausted. It really never ends.