Seeing through the white

Why do I always feel sad when I meet charming people in the infusion center?

I go in for my Herceptin infusion Tuesday, pick a chair at random. I end up next to a woman with a paisley scarf tied over her bald head. She has breast cancer.

I ask a nurse, “Why do I always sit next to someone with breast cancer, even when I’m no longer doing the cold cap trial which is aimed at breast cancer patients, even when I’m not TRYING to sit next to someone with breast cancer? Is it really that common?”

“Yes,” the infusion nurse says as she fiddles with my Herceptin IV. “It’s common, and also, everyone wants to come here, to UCSF.”

My new partner in disease appears to be in her late 60s. She and her husband, a retired professor of veterinary medicine at UC-Davis, seem to be interested in everything: biology, recent novels, the debt crisis, Mendocino wineries and restauranteurs.

They drive all the way from Hopland, about 100 miles north up Highway 101 to get to UCSF. This is saying something, because she is deep in the thick of treatment, the stage at which it feels like you’re living at UCSF-Mt. Zion Hospital. Her cancer is hormone receptor negative. That puts her disease in a category of being hard to treat.

So she’s doing what oncologists euphemistically call “dose dense chemo”: 12 cycles of Taxol (ick) and Adriamycin (double ick, patients call Adriamycin the “red devil,” because of its color and the torment that it inflicts). Then she’s doing yet more Taxol, and Herceptin once a week for 12 weeks, then Herceptin every three weeks for a year, as per normal. She’s expecting to have a mastectomy somewhere in there. She’s not sure about radiation yet.

Hearing this litany of scorched-earth chemo, I suddenly don’t want to ask her what stage she is. I’m gathering she’s not Stage IV, but that regimen sounds serious, very serious.

I ask how she managed to bear 12 cycles of chemo, when 6 cycles laid me flat. “You do what you have to do,” she says. Indeed.

Then she starts to tell her diagnosis story. “I had a mammogram just a couple of months before I felt the lumps. I actually found them on my birthday. Five. They did an ultrasound after that, and then a biopsy.

“The oncologist told me that I have very dense breasts. If you have dense breasts, it makes it harder to see things with mammogram only. If they had done an ultrasound with mammogram, they would have seen everything much earlier. It would have lit up those lumps likeThere’s a bill pending in the state legislature that would make it mandatory to inform women if they have dense breasts.”

It turns out that in women with dense breast tissue, 75 percent of breast cancers are missed when the only screening is mammography. The denseness of the tissue obscures abnormalities like cancer. Dense tissue shows white on a mammogram. So do the “microcalcifications” that tip off cancer, that tipped off my cancer. And, even worse, women with dense breast tissue seem to be five times more likely to develop cancer.

A legislator from Palo Alto has introduced a bill to inform women who fit this profile. SB173 passes the State Senate in June.

The Association of Women’s Health, Obstetric and Neonatal Nurses, the California Nurses Association, the Breast Cancer Fund, the California Association of Health Underwriters, and the California Communities United Institute support the bill. Connecticut has passed similar legislation. Congress and the states of New Hampshire, Massachusetts, New York, Florida and Texas all have related legislation pending.

For some reason, both the California Medical Association and the California Radiological Society are opposed to the California bill. They say that the science isn’t yet clear.

I don’t get it. All the bill asks is that women be informed of the status of their bodies—the density of their breast tissue—and the associated risks. I don’t see how this will cost anyone significantly more. Doesn’t it cost far more to treat late stage than early stage cancer? Would it really be a hassle, or rather, nothing more than a routine notification? All those nurses associations, and The Breast Cancer Fund are heavy hitters, not hysterics.

But one thing I do think SB173 might accomplish: It might mean fewer charming people in the infusion center, or at least, charming people in the infusion center for shorter courses of treatment. And that’s a good thing.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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2 Responses to Seeing through the white

  1. Another wonderful insightful, wise, thoughtful, achingly poignant post.

    Can you please find other ways to blog after your breast cancer blogs end?

  2. David Haas says:

    Hello,
    I have a question about your blog. Please email me!
    Thanks,
    David

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