Diagnosis: Breast Cancer
NJ Savvy Living, June 2010
Author: Patricia Herold
Diagnosis: Breast Cancer
Treatment: Connect, Connect, Connect
Odds are it won't be your doctor who consoles you at 2 a.m. the day after your breast cancer diagnosis.
Or who lines up a maid service - for free - when you barely have the energy to turn on a faucet, much less clean your home.
Because hand holding and housekeeping aren't medicine in the strictest sense. But as it turns out, there's more to surviving breast cancer than medicine.
Today's patients rely on all sorts of social media and other networks for assistance. So much so that doctors and hospitals themselves are blogging and tweeting in their efforts to make a supportive attitude a mainstay of treatment.
No wonder. Emotional well-being and stress relief - fostered through non-medical means - can play an important role in recovery.
"The more support patients have, (the more they) tend to have better outcomes," says Dr. Dana Holwitt, breast cancer surgeon at the Montclair Breast Center, where blogs, Twitter and Facebook icons now appear on the Web site.
"It's a physical disease, but the emotional stress is quite traumatic," notes Dr. Norman San
Agustin of the Breast and General Surgery Associates of North Jersey in Morristown, who agrees the "psychological effect" deserves attention.
In New Jersey and nationwide, there are great ways to connect for support:
Social Media:
Blogs, Facebook, Twitter, Chat Rooms
TMI (too much information)? No such thing. When Amanda Schroeder, now 33, was diagnosed in 2008, she sensed she'd need more than information about the next bone scan. "It's so overwhelming," she remembers. "I thought, 'what do people do?' I did send out an e-mail right away to my girlfriends; they came over, and a bunch of them slept over."
Now Schroeder updates friends via Facebook and turns to sites like i2Y ("I'm Too Young") and Planet Cancer. "I think they're helpful," she explains, "because even though I have a strong family and friends, I don't think anyone really knows what you're going through unless they've done it themselves."
Dr. Sarah S. Schaefer of the Breast Care & Treatment Center in Livingston says one of her patients had triple negative breast cancer and found an online group specifically for that type of cancer. "Although it has a worse prognosis, she was able to talk with women who have it and have been cancer free; it was extremely helpful." An attending surgeon at St. Barnabas Hospital, Schaefer routinely recommends Web sites to patients upon diagnosis, including the Susan G. Komen site and the National Comprehensive Cancer Network.
New Jersey women will find a comforting and trustworthy voice in long-time Star Ledger columnist Kathleen O'Brien, who entered the fray after her diagnosis, which was followed by a mastectomy and chemotherapy. O'Brien riffs on life after breast cancer with her customary humor and insight, blogging under the title: "We'll Know More on Monday" and musing on losing her hair, looking like Lance Armstrong when it starts to grow in, and her chemotherapy port.
Blogging about breast cancer is a crowded field, and typical online cautions apply: Holwitt recommends that patients look for Web sites or blogs with a long track record ... or ones supported by a local hospital.
Organizations such as Cancer Care (in partnership with Komen for the Cure), Cancer Hope Network and The Wellness Community also connect patients with other patients and survivors for online, telephone or face-to-face support.
Navigators
Breast cancer "navigators" (new at Morristown Memorial Hospital since Schroeder's diagnosis) connect patients with support services. Affiliated with hospitals and doctors' practices, navigators are a friendly port in the storm
of anguish and uncertainty. Cheryl Kott of Morristown, a breast cancer survivor and volunteer resource navigator at the Carol G. Simon Cancer Center at Morristown Memorial Hospital, knows firsthand how reassuring even a little help can be.
"When I lost my eyebrows and eye-lashes," she recalls, "my friend, who was my unofficial navigator and had been through it eight years before, would drop off eyeliner." Now she works with professional breast nurse navigator, Miladys Diaz, at the Simon Center to link patients with all sorts of services, from the Young Survival Coalition to in-house music, writing and art therapy (one option: a "vibro-acoustic musical massage" that can ease mental and muscle tension and nausea).
Navigators can sometimes provide American Cancer Society gas cards, worth up to $100, to offset the cost of transportation. They can also arrange rides for women who live alone and can't drive themselves.
Breaks and Pick-Me-Ups
A breast cancer patient not only deserves a break; her traumatized body's recovery depends on it.
Cleaning For A Reason, a Texas-based foundation, comes to the rescue with monthly cleaning services at no charge to women with breast (and other) cancers, through partnerships with cleaning companies in New Jersey. cleaningforareason.com
Lotsahelpinghands.com, an online service, connects friends or family members wanting to coordinate meals and other care for the patient by facilitating, scheduling and communicating online.
Operation Bling, a non-profit based in New Providence, cheers up cancer patients by encouraging them to choose a "Bling Gift," a glimmering ring, necklace, or earrings (O'Brien chose a necklace). Bling can console or celebrate. "We present them when a patient has completed treatment or has reached a milestone," notes Diaz, of the Simon Center. operationbling.com
The American Cancer Society sponsors "Look Good...Feel Better" at hospitals in Morris, Hunterdon, Warren, Sussex and Somerset counties, offering individual professional cosmetic consultations on make-up, wigs and scarves for breast cancer patients. cancer.org
LympheDivas, founded by a breast cancer patient plagued with lymphedema, a side effect that causes limb swelling, markets fashionable "compression sleeves" which provide relief from the dreary sleeves women used to wear. lymphedivas.com
Smart Medical Consumer, developed by Banu Ozden, a former Bell Labs computer scientist and breast cancer survivor, provides free online tools for managing medical documents and expenses; also offers expert answers to billing questions and software that detects billing errors. smartmedicalconsumer.com.