Are YOU a Guinea Pig?

How many of you feel like a guinea pig? Are the cancer treatments you’re receiving, or received—6 months ago, 5 years ago—truly proven?

Danielle, a regular shareposter here, recently posted this comment in response to my post on MammoSite radiation:

“I'm sorry if I seem a little cynical sometimes or ‘debbie downer,’ it's just that I do feel like a guinea pig sometimes and the more women I hear from, the more pessimistic I get about the treatments for breast cancer. Maybe someday it won't be so trial and error. – Danielle”

Danielle’s comment has made me think about cancer, and guarantees.

MammoSite is a good example of a “new” breast cancer treatment that’s been in regular use for 5 or so years now. Available to women who’ve had a lumpectomy, it delivers radiation internally, right to the site of the excised tumor, via a catheter, balloon, and radioactive “seeds.”

Compared to the daily 6-week treatment protocol for standard radiation, women getting MammoSite therapy are treated twice daily for just 5 days. It’s a tremendous opportunity for women driving a long distance for treatment, or those whose jobs or child-care situation offer little flexibility.

But does it work as well as standard radiation? Yes it does, looking at the limited data thus far available. Will those results still hold true 10 years, 20, 30 years down the road? No one knows. MammoSite may not be as effective as standard radiation, long term.

Or it may prove better and displace what we currently undergo. And women 20 years from now will look back and wonder at the onerous 6-week schedule of treatments we put ourselves through back at the turn of the 21st century, much as we now shake our heads at the disfiguring radical mastectomies of the 1960s.

My son, Nik, has posted on this site, and is familiar with much of what I write. Speaking to him the other night, I brought up this question: Are we guinea pigs?

“By whose definition?” he asked. “The doctors who use MammoSite and like it, they think there’s enough data that it’s been proven. The doctors who don’t use it, for whatever reason, maybe they don’t think the data is complete. But the only opinion that matters is from the woman who’s getting the treatment,” he said. “If you’re getting MammoSite, and you believe that it’s proven—to your standards, whatever they are—then you’re not a guinea pig. You’ve made the decision to accept that it works.”

This 22-year-old opened my eyes to a new viewpoint. There’s data and studies and trials, but even the best data is incomplete, and always will be, since cancer treatment is constantly evolving.

Right now, we have 30-year data for women who received tamoxifen treatment in the 1970s. This data shows that tamoxifen is effective in preventing recurrence in postmenopausal, estrogen-receptive women with breast cancer. At the same time, we’re looking at about 8 years of data for aromatase inhibitors, data that shows it’s more effective than tamoxifen for that same group of women.