After coping with the initial shock of a cancer diagnosis, many women decide to take a proactive approach and seek sound information and advice so that they can make informed decisions about their healthcare. The Oncology Nurse recently spoke with two young women who found that support groups were a valuable resource for obtaining information and forming bonds with other patients and survivors. One went on to create her own group to help women with specific needs she felt were not being met based on her own experience.
Breast reconstruction an option for some
Sharishta Shourie was just 25 years old when she detected a lump in her right breast on self-examination. She consulted her primary care physician, who arranged re ferrals to a medical oncologist and surgical oncologist. Less than a month after she detected the lump in her breast, she was diagnosed with stage II breast cancer.
Sharishta was grateful that her doctor took her concerns seriously, took immediate action, and helped coordinate her treatment. But right from the start, she felt it was important to take a pro active role in her care. She researched the disease and the treatment options and interviewed oncologists and surgeons until she found ones who she felt were the right fit. “I had a gut feeling that I should see different doctors. I learned that getting multiple opinions is essential for making the correct treatment decision,” she says. “These were doctors that I was going to be working with very closely for quite a long time. I was able to find doctors that I knew I would be able to work with and would provide the information I needed.”
In addition to her own research and the information provided by her doctors, Sharishta learned a lot about the disease and the available treatment options from the women she met through the West Los Angeles affiliate of the Cancer Support Community (CSC). She joined a breast cancer support group and soon formed strong bonds with the patients and survivors she met there. “As much as family and friends are there for you, there is something unique about having a conversation with a woman who understands exactly what you’re going through, who understands the fears and the questions. There’s a unique bond that we all share,” she says.
Sharishta found that being diagnosed with breast cancer was “like having a second full-time job.” She explains, “You’re busy making ap pointments dealing with the insurance, doing research, and talking with the doctors. It’s very time-consuming and very draining. I was lucky to have the women in the support group who I could ask questions and go to for support.”
Sharishta’s surgeon referred her to a breast reconstruction surgeon, and she ultimately decided on a bilateral mastectomy followed by breast reconstruction. She’s learned from other women, however, that not everyone is given enough information about reconstruction options to make an informed decision, as was shown in a recent CSC survey. She thinks that Frankly Speaking about Cancer: Spotlight on Breast Re construction, a CSC educational program being launched in January with support from Mentor Worldwide, LLC, in 2011 will help to fill this gap (www.cancersupportcomunity.org). “Lots of factors go into deciding what options are right for any particular patient, and knowing up front what doctors are able to do is hugely important,” she says.
Sharishta is doing well 1 year after her diagnosis and she continues her involvement with the West Los Angeles affiliate of CSC, working to raise awareness of breast cancer and to empower women to take an active part in their treatment.
Pink-Link grows out of personal experience
Vicki Tashman was 44 years old when her breast cancer was detected on a routine mammogram 6 years ago. Like Sharishta, she consulted several surgeons until she found the one she felt most comfortable with. And also like Sharishta, she did not stop there. She set out to inform herself about the disease and the available treatments by reading about it and talking to friends and relatives.
She sought out several support groups but found that she was always one of the youngest people in the group and, unlike most of the others she met there, had had a lumpectomy instead of a mastectomy or double mastectomy. “I noticed there were some differences in what was being talked about, and how I was feeling versus how they were feeling and different questions that I wanted to have answered that the women in the support group couldn’t answer.” She came up with the idea for an online forum that would allow a woman to search a database and connect with a survivor who had a similar breast cancer profile or had had her specific type of treatment. “That’s how Pink-Link was born [www.pink-link.org]. The initial thought behind it was to be able to have survivors connect with each other, online, 24/7, on their own.” She points out that al though there are other supports that will match patients and survivors, with “Pink-Link it is the survivor herself that’s searching the database, viewing other members’ profiles, and then deciding who she wants to connect with.”
Pink-Link is a nonprofit membership- based organization and its services are free to members. Vicki explains that “a member can set up their personal journal and have it completely private so she can use it as a diary or it can be public to Pink-Link members. It can also be password protected so that she can give that password to family and friends and they can log on to Pink-Link and read her entries. So if she wants to keep them updated on a weekly basis, she can do that.”
In addition, five experts donate their time to run forums that answer members’ questions about nutrition, physical exercise, skin care, lymphedema, and holistic health.
Since the group was started 4 years ago, about 4000 members have signed up and more than 1000 connections have been made. Vicky hopes one day to have a Pink-Link conference so that members can meet in person and to set up similar sites for patients with other kinds of cancers.