New Study Offers Glimpse Into Future of DCIS Treatment

Thanks to researchers at the University of California-San Francisco, we have a brand new set of acronyms to add to the breast cancer lexicon. The one you may already be familiar with is BRCA. BRCA 1 and 2 are genes that, when mutated, are linked to hereditary breast and ovarian cancer.

Researchers at UC-SF identified three biomarkers specifically related to ductal carcinoma in situ, or DCIS, a very early stage breast cancer that is confined to the milk ducts. The new biomarkers are called p16, COX-2 and Ki67. (I’d love to know how they come up with these names.) When all three were positive, a woman’s risk of developing invasive cancer within eight years was 28 percent. When all three were negative, the risk was 4 percent. You can read the article at The Journal of the National Cancer Institute. There’s also a more user-friendly article at the New York Times Well blog.

The study is not comprehensive. It included only 1,162 women, the women were treated with lumpectomy only–lumpectomy plus radiation, or mastectomy, are the typical treatments–and it only studied their risk for developing invasive cancer and not recurrent DCIS. Still, it’s a great start.

I’m one of the thousands of women diagnosed with DCIS each year. I chose mastectomy after two attempts at breast-conserving surgery failed to get the desired clear surgical margins. I could have opted for radiation but I wanted a sure bet–DCIS is virtually curable with mastectomy.

Radiation can also be a very good choice but it will depend on your individual circumstance. In my case, I had an awful lot of DCIS. Because of that and some other red flags, one oncologist I talked to estimated my risk of developing invasive cancer within five years at 50 percent.

DCIS is sneaky. Doctors call it “multi-focal”–it could take up residence at one end of a milk duct, or at both ends, and in the middle too. When they biopsied my breast tissue after the mastectomy, some DCIS cells were still lurking in the tissue.

I have absolutely no regrets about the choice I made. But it’s nice to know that in the future, women will be able to make even more informed choices. Just as BRCA lets women make choices based on their genetic predisposition to breast cancer, p16, COX-2 and Ki67 will allow them to make choices based on their individual biomarkers. And that’s good news.

The Only Thing We Have to Fear

Last week I had one of those light-bulb moments that seem to come out of nowhere. It may have been more of a “discovering the blindingly obvious” moment but I’ll let you be the judge of that.

I’ve been soliciting review comments for a book I wrote about my experience with stage 0 DCIS. I contacted a blogger whose tastes in books is far-ranging and I thought she might be open to reading mine. She agreed to read an advance copy but told me she had to give it some thought because the topic scares her.

That’s when I realized that I’ve sort of gone native when it comes to breast cancer. And by that I mean I’ve gotten so used to dealing with the before, during and after of it that I’ve forgotten that other women are not used to it and are afraid of it.

It reminded me of when I was a mental health worker in a former life. Most of the people I worked with were schizophrenic; some had bipolar disorder. I was so comfortable working with them I forgot that the rest of the world might not share my point of view. Once when my parents were visiting I kept inviting them to come have lunch at our day services center. I’ll admit I was a little slow to catch on. My mom kept politely saying no and I kept pestering her until she finally said, “I don’t think I’d be comfortable.” Oh.

Breast cancer is the same way. I know how scary it is to wait for that phone call, and to wonder how you’ll know if you’re making the right treatment decision. I also know that it’s like so many other things in life, where dreading it is worse than being in it. I’m not saying it’s a fun experience, although you will find moments of humor and love. All I’m saying is you’re tougher than you think. I learned I was.

They say courage isn’t the absence of fear, but the triumph over it. Fear just goes with the territory when it comes to breast cancer. But if your fear is strong enough that it keeps you from going in for a mammogram, please fight it. More of us than ever have good outcomes because our breast cancer is caught early. Let’s say your mammogram does find cancer. What if you had postponed it for several years? All you’ve done is given cancer a head start.

President Franklin Delano Roosevelt once said, “The only thing we have to fear is fear itself.” He was addressing the country during a banking crisis, but he could have been talking to us. You can live with fear. But you may not be able to live with late-stage breast cancer.

The Warrior Princess Needs Your Vote

If you’ve read my previous blog posts, you may recall mentions of my friend Pam, who is in round 2 of a battle with the Stage 4 breast cancer monster and she’s not even 40 years old yet. She was an amazing mentor to me when I was diagnosed with ductal carcinoma in situ. One of my fondest memories is when she sent his and hers “F*ck cancer” stocking hats to my husband Bruce and me. My hat was a big hit at my second lumpectomy.

What can I tell you about Pam? She’s a life force. She lives each moment to the fullest, with zest and joy. She also induces whiplash in any men in the general vicinity. Pam has the face of a beauty queen and the heart of a lion. I wrote a poem for her called “Warrior Princess” and may post it here one day, but I’m trying to get it published and some venues won’t accept work previously posted, even in a blog.  

Pam is also a contestant in the Susan G. Komen for the Cure Honorary Bat Girl Contest, which is in its sixth year. Major league teams will have honorary bat girls for the home games taking place on or near Mother’s Day. Pam wants to be the bat girl for the Kansas City Royals, and could use your help.

If you want to vote for Pam, please click on the link in the previous paragraph, then click on Vote for A Story. The list will appear in alphabetical order, so click on the little search box and select “Nick Name Z to A” to bring up Pam’s nickname “Warrior Princess.” When you bring up her story, you’ll be able to vote for her, and you can vote as many times as you want. They don’t show a specific date when voting will close but the official rules say it will be on or around April 12th.

Disclosure: I have selfish reasons for asking for your vote, because if they pick Pam, Bruce and I will be in the stands yelling our heads off. Thanks.