Town Hall



Fancy Hospital had its annual Town Hall meeting last week on breast cancer. Meaning, anyone could come and ask questions of a panel of experts: my erstwhile oncologist, my current oncologist, my erstwhile and very nice radiologist, a patient advocate (who lives in Des Moines) and a oncologist-plastic surgeon. I learned a few things, some of them unsettling. That estrogen-positive cancer (such as mine) is easier to treat than other kinds, but it also has a greater chance than other cancers of coming back after five years. How did I miss hearing that before? That triple-negative breast cancer is more common in African-American women than in women of other races, and that it's more aggressive and more likely to recur than many other other kinds of breast cancers. That according to one trial, five years of tamoxifen is better than 10 because breast cancer cells can learn to grow with the tamoxifen.

A man asked about Dr. Susan Love's new research effort. My old onco pooh-poohed Love, calling her an "entrepreneur," and said he was "not sure what she's doing." My current onco said that Love was encouraging patients to get in clinical trials to help the next generation. "What she's doing is great," she said. My onco also said that bone scans and CT scans and tumor markers aren't helpful in finding metastasis. It makes no difference, she said, whether you find out now or three to six months from now that the cancer has spread.

One woman was dressed in orange and spoke with an accent, maybe Eastern European. She had sleek short hair that may have been, now that I think about it, a wig. She asked about extra testing when a person is in remission. Her mammograms didn't show anything but "now I find out ... I don't have much time."

But the most shocking thing I heard was this, at the beginning: My former oncologist said that he'd gotten e-mails from some patients, asking him if there was going to be anything new at the Town Hall this year. What? He gave his e-mail address to patients? And he answered them? Unbelievable.

8 comments:

ruth pennebaker said...

The whole test or no test idea is very emotional for me. I've chosen not to test for anything, since my oncologist agrees it doesn't help. Why rush any bad news? I can wait.

Other people feel better after getting tested; I almost invariably feel worse -- knowing how little control I have.

Writer said...

Yeah, everyone asks me about tests. we all expect that tests can show everything, that we can track down all the the little aberrant cells.
--C. Bitch

Stephanie said...

You wrote: "My onco also said that bone scans and CT scans and tumor markers aren't helpful in finding metastasis. It makes no difference, she said, whether you find out now or three to six months from now that the cancer has spread."

Can you clarify this a bit? Does she mean that the tumor markers won't show that the cancer has come back? You are talking about recurrence, right? I've been cancer-free since June 2007 & have been on tamoxifen since Jan. 2008, when I finished chemo/herceptin. My tumor marker tests since then have been neg. Is that essentially meaningless -- according to what your onco says? how else does one find out whether the cancer has recurred?
--Steph

Writer said...

I'll look back over my notes and get back to you tomoro.
C. Bitch

Emma said...

My oncologist cited a talk just given by a researcher from Dana-Farber. (The Town Hall was the public part of a national several-day conference on breast cancer.) I just called Dana-Farber to get a copy of the talk e-mailed to me and will report on it when I get it.
From my notes: My oncologist said of CT and bone scans and tumor marker tests--we've "not found them to be helpful."

Emma said...

Note from "Emma"--The above comment is from Cancer Bitch, in one of many of her guises.
--C. Bitch

The Fifty Foot Blogger said...

(Our) old oncologist was, imo, criminally neglectful. Fuck him.

He prob. gives his email to patients who have husbands on the hospital board.

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