http://paloaltoonline.com/print/story/print/2013/05/31/on-deadline-facing-breast-cancer-8212-even-checking-for-it-8212-is-an-act-of-courage


Palo Alto Weekly

Spectrum - May 31, 2013

On Deadline: Facing breast cancer — even checking for it — is an act of courage

by Jay Thorwaldson

The recent revelations by superstar Angelina Jolie and locally famous Liz Kniss that they have had breast-cancer-related surgeries and treatment have opened up a topic that is notable for being avoided — either in conversation or internally.

Kniss, a former Palo Alto mayor, longtime City Council member and former member of the Santa Clara County Board of Supervisors, disclosed her breast cancer of a year ago at a recent meeting of the nonprofit Breast Cancer Connections organization, based in Palo Alto.

Jolie's disclosure of a preventative double mastectomy after she learned she carried the so-called "breast-cancer gene" (which vastly increases the odds of getting the potentially fatal disease) has opened up a national discussion and flurry of interest.

On the local level, the Weekly's story (www.paloaltoonline.com/news/show_story.php?id=29744) about Kniss' disclosure has generated a similar burst of interest on the part of many women, she reported Tuesday in a telephone interview while awaiting a flight to Kansas City for a conference on "Fiber to the Home," the longest-running topic in Palo Alto, I believe.

"I have had so many people talk to me, or want to talk to me," Kniss said of the past few days. She is more than happy to talk about it, but has noticed an odd pattern: Most "don't want to talk to me about their own breast cancer," just the topic itself.

Kniss said her decision to keep quiet about her diagnosis and treatment — confiding only in her husband, Rick, and four close friends — was among the hardest decisions she has ever made. It also was multi-faceted, both a personal desire for being able to deal with the situation herself in private and because she was then a candidate for City Council. She said she didn't desire either a sympathy vote or a concern about her being able to serve adequately due to her health.

There was an initial panic about whether she would be able to see her grandchildren grow up, then hope emerged.

Looking back, she acknowledges that simple embarrassment may have played a role in her decision to stay private.

"Isn't it a shame that in our culture cancer is embarrassing?" she observed — more a statement than a question.

She said the diagnosis came as a complete shock to her and her physician, following a routine mammogram. But she never felt that it threatened her life, even though her sister died of the disease a decade ago — without any mammography screening, Kniss believes.

She'd now like to make a difference to other women, and those close to them in families or relationships. She will help raise funds for Breast Cancer Connections and push for greater awareness of the lifesaving potential of self-exams and regular screenings.

Part of that awareness is about the vast improvements that have been made in the past three or four decades in detection and treatment, Kniss said.

Men also have a stronger role they could play in encouraging spouses or partners to get checkups, even though getting one can be scary enough to merit a medal of courage.

In my own case, breast cancer has hit my family hard. It claimed my mother, my oldest sister and my mother-in-law. Two nieces have fought it off, for now — one who contracted it at age 24 and has long been clear — except she recently found she carries the breast-cancer gene. One of her daughters contracted the disease and handled well some uncle-ish teasing about how good she looked bald, during treatment.

It's a topic that is hard to ignore when people you deeply love are stricken, or are vulnerable to the disease. But when not directly engaged it is a topic many simply wish to ignore.

I also had a personal experience that dates back about 30 years, when some profound changes were beginning to occur in the detection and treatment of breast cancer. After I left the Palo Alto Times, I was named director of community relations (later director of public affairs) at the Palo Alto Medical Foundation/Clinic (best known as PAMF).

One continuing story was how clinic physicians began carefully experimenting with, first, "outpatient medicine," and, second, with replacing the common mastectomy with removal of the cancer itself (lumpectomy) combined with radiation treatment and chemotherapy. The physicians in a widely publicized study found that the combination had survival rates as good as full mastectomies, without some of the emotional or other side effects.

Then one day in the early 1980s a representative of the League of Women Voters of Palo Alto asked if PAMF would co-sponsor a community conference on breast cancer. Sure, I replied. What aspect? They weren't sure, so we set up a meeting to brainstorm an approach.

Earlier, one physician had advised me to avoid at all cost sponsoring anything on breast cancer "because no one will come." They tried one the year before, he said, and there were more speakers than audience members.

"What was the title?" I asked. "Breast Cancer: A Legislative Update," he replied.

Hm, I thought, doing a mental diagnosis.

At the meeting except for another man who was a volunteer, I was the token male of a dozen well-educated, articulate League members. We discussed different ideas and I at one point asked if I could ask a personal question: "How many of you do regular self-exams?" Two or three raised their hands.

"For the others, why not?" I asked.

There was a long, uncomfortable moment, then a soft voice from the far end of the table: "It's scary."

Yes. The title we came up with was "Breast Cancer: Fear is the Enemy." For the conference, we produced a booklet with the same title, covering more of the emotional side effects of breast cancer that a literature search revealed was almost completely absent from informational materials.

The booklet was used for years by PAMF, and even by the Stanford Hospital surgery department for breast-cancer patients until other materials were developed.

I'm looking for a copy to share with Liz.

Former Weekly Editor Jay Thorwaldson can be emailed at jthorwaldson@paweekly.com with a copy to jaythor@well.com. He also writes regular blogs at www.PaloAltoOnline.com (below Town Square).

Comments

Posted by Carroll Harrington, a resident of another community
on May 31, 2013 at 12:21 am

First, kudos to Liz for sharing! I coordinated the "Breast Cancer: Fear is the Enemy" conference and may have the booklet in the numberous banker's boxes packed for my move to Capitola. Will look for it.

Jay, thanks for this column. Sandy Rensvold deserves the credit for writing the booklet. I know we will find one.