Sunday, January 3, 2010

What Does Aggressive Followup Look Like?

I started asking myself and my health care providers this question around the time chemo, radiation and Herceptin treatment were drawing to a close.

It's what everyone agreed I'd need, since I had grade three, multifocal and node and Her2 neu positive IDC (invasive ductal carcinoma).

Almost two years out from my 14 months of treatment, I've found it to mean bloodwork before my once every four month appointments with an onc. I feel it's more least we can do than aggressive.

Everyone has their own comfort level with scans, etc. after cancer treatment. I don't like them because of the cost, time and health risks involved, and I'd love a better way to know where one stands cancer-wise. But since there is no better way, and because job #1 for me is to stay healthy for my son, I prefer to use scans, checks and whatever else is out there to followup on an aggressive cancer.

I'm convinced that if my cancer comes back, it will be like a house afire. I don't want to catch something too late. That would suck so much.

Anyway, back to my point. I guess I've been slowly shaping my own aggressive followup plan. I know it's not right for everyone and some people might disagree with my style, but my concern is what works for me. I encourage all other cancer patients to find what works for them.

1. A mammogram couldn't detect my two 2.5 cm. tumors. Mammograms don't work as well on young women like me, because we often have dense breast tissue that a mammogram doesn't "read" well. So my annual check involves a mammogram (because my insurance makes me start there) and then an MRI on both breasts.

2. As part of my treatment, I'm taking tamoxifen for five years. Tamoxifen raises one's chances of developing uterine cancer. So I'm getting a yearly endometrial biopsy for at least the next couple years.

3. One of my chemo drugs is known to affect heart function. So is the Herceptin I took for a year. I'm getting yearly muga scans to keep tabs on my heart function that's dropped from the 60s to 48 after treatment and never gone back up.

4. I'm going to request the test to see if I'm an excellent, average or poor metabolizer of tamoxifen. This is said to be especially important for Her2 positive people because it can actually fuel a recurrence if you're a poor metabolizer. My insurance doesn't pay for this and my onc is only mildly supportive, but I think checking this out falls in the realm of aggressive followup.

5. I'm also going to ask that we do CA 27.29, the breast cancer tumor marker test, with my bloodwork from now on. My cancer didn't affect this marker, but there's no guarantee a recurrence or new cancer wouldn't act differently. I think aggressive means we follow the marker and then rule things out if it goes up dramatically.

6. That's it for now.

I'll keep you posted.

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