By Kathy Day
After Carmel Valley resident Lynn Flanagan was diagnosed with breast cancer in 1996, she joined a support group. But when she figured out they didn’t want to talk about breast cancer and just wanted to socialize, she sought out other options.
“It was a foreign concept to me to go out on a week night and be away from my kids and my husband for a social gathering,” said the mother of three who recently celebrated her 37th anniversary.
The solution came at the suggestion of her oldest son, then a high school sophomore. “He told me to go set up my own group.”
And that was that. She still holds monthly meetings that focus on providing information about the disease to a “sisterhood” that includes women from ages 29 to 80.
Sure, said the energetic woman who was a member of the 1972 University of Notre Dame class that was the first to include women, they are friends and they do socialize, but the key is sharing information to help people deal with their situations. Her personal mission is to make sure the information is up to date. Each month before the meetings the voracious reader prepares folders full of articles and tidbits, sometimes even personalizing them with information about a member’s type of cancer.
She dove headlong into cancer education just five months after being diagnosed. When she went back to a special reunion of her graduating class – 325 of the 6,000 graduates were women – she put on a seminar about early detection that brought out a standing-room-only crowd of men and women of all ages.
And she’s still at it 15 years later. On Sept. 24, Linked by Lynn — her support group — and Agendia, a company that makes genomic-based breast cancer diagnostic tests and aims to help healthcare professionals find more personalized ways to treat patients, are hosting John Link, M.D., for a discussion and book signing. He is the author of “The Breast Cancer Survival Manual,” now in its fifth printing. A medical oncologist who specializes in breast cancer, he founded the Orange County-based Breastlink medical group in 1995.
Bringing Link to San Diego is no coincidence. He was one of the specialists Flanagan turned to when she was diagnosed with what she called a “very tricky” type of breast cancer – invasive intralobular carcinoma.
“It is very insidious and grows differently than other types,” Flanagan said in a recent interview.
She had a “very wonderful” team led by Scripps Clinic physicians Michael Kosty and Vincent Massullo, who practices in Northern California now, but said she sought out Link for another point of view after reading the first edition of his book. Together, the doctors — including her surgeon Michele Carpenter, who is now director of the breast cancer program at St. Joseph’s Hospital in Orange — developed a treatment plan that included a lumpectomy, radiation, axcillary dissection and five years of Tamoxifen.
When Flanagan developed her group, she chose to name it Linked by Lynn in honor of the physician she calls “a special individual.”
While Kosty is still her medical oncologist – and one she speaks highly of for his knowledge and compassion — she frequently refers members of her group and others to Link and sometimes accompanies them on their visits.
“I send him the rocky road cases,” said.
Her relationship with him was cemented when he consulted on her sister-in-law’s case even though she was in Michigan. After her death, the family asked that donations be made in her name to CancerCare, an organization that provides free support for those affected by cancer. After raising nearly $30,000, Flanagan worked with them to organize an hour-long teleconference featuring Link and four other healthcare professionals.
Link, speaking recently from his Orange County office, explained that he decided to specialize in breast cancer because he wanted “to do one disease really well and be kind of an expert. You can’t do 35 cancers well.”
A Chula Vista native who attended USC on a track scholarship, he decided to attend medical school – also at USC – after his 42-year-old track coach, Willie Wilson, died of cancer.
When he started practicing, medical oncology was in its infancy and wasn’t even considered a sub-specialty, he said, adding that things changed dramatically about 1980 with the new drugs like tamoxifen and advances in mammography.
Now, he said, “breast cancer is no longer a death sentence. The cure rate is 90 percent.”
In the late ‘70s when he started practicing, he said, that number was about 55 percent.
While at Memorial Medical Center in Long Beach, where he did his residency, he played a role in creating one of the first breast centers in a community hospital, became its director and decided to concentrate on the singular disease.
His book, first published in 1996, was an offshoot of that center, he said. “It was pretty good – it really helped women.”
The latest version has a lot of changes, he noted, because of new understanding about the genetic nature of the disease.
In it, he writes, “When I see a newly diagnosed patient, I tell her the chance of being cured (yes, cured!) is very high. You do have time to educate yourself, gather information, and even obtain a second opinion if desired. Just remember, take one step at a time.”
The book includes information on types of breast cancer, understanding pathology reports, treatments, side effects, clinical trials, genetic risks, nutrition and supplements and “Becoming a Survivor.”
Some women who have read it are ahead of their oncologists, he said. It’s also helpful for spouses, partners and children to read.
Some patients, like Flanagan, take their knowledge a step further. “She is a very strong advocate for women with breast cancer,” Link said.
Flanagan said some have called her their “angel bulldog. I’m extremely tenacious.”
She once got kicked out of one office for asking too many questions, but, she added proudly, her friend who was the patient got the questions answered.
Despite her seemingly eternal optimism, she is realistic, she said, showing photos in a scrapbook from gatherings that include some memorial services honoring their friends.
The key, though, is “focusing on the celebrations and joys of life, not just the sadness.”
Meet Lynn Flanagan and Dr. John Link at a free lecture, followed by book signing, on Monday, Sept. 24, at 7 p.m., at Hilton Garden Inn, 3939 Ocean Bluff Ave.
RSVP required by Sept. 19 by e-mail to email@example.com. Include in subject line “Linked By Lynn event.”
Books available at the event or at amazon.com
For more information, visit www.drjohnlink.com or www.breastlink.com