There are an increasing number of virtual supporting and mentoring programs for cancer patients and these expanded greatly during the Corona Virus pandemic. The Cancer Connect social network used by Dana Farber, Sloan Kettering and other leading cancer centers experienced 300% growth during 2021. One if 4 patients that joins Cancer Connect "pays it forward" through continued engagement.
- Connect with Support on Cancer Connect
There are several other peer support organizations that provide these services including the "myeloma crowd" and the pregnant with cancer network.
The Pregnant with Cancer Network
Jacqueline Agresta, 33, of Long Island, New York, was four months pregnant with her first child when she found lump in her right breast. Because she had cystic breasts and had had benign lumps removed in the past, Jacqueline wasn’t all that worried as she proceeded with the needle biopsy. When her doctor offered to look at the sample under a microscope right then in the office, Jacqueline said sure, confident that it wouldn’t be anything to worry about. But the news wasn’t good: her doctor told her that the cells were in fact malignant; Jacqueline had breast cancer.
“It’s so hard to explain what that moment feels like,” she says, remembering the transition from healthy expectant mom to cancer patient. “Fifteen minutes ago I was totally healthy; now I have a potentially deadly disease.”
The next few weeks were a blur as Jacqueline and her husband, Peter, saw surgeons, oncologists, and OB/GYNs, working to formulate a treatment plan that would optimize her treatment and the safety of their unborn child. It was during this period, as they sought information about their situation, that Peter found the Pregnant with Cancer Network during an online search. The contact came at the perfect time, and Jacqueline reached out to the organization.
“Pregnant with Cancer immediately connected me with a peer support person who had been through it,” Jacqueline says, “so that was the best because we spoke on the phone and through the Internet. It was someone who had been through it—just someone to say, ‘Yes, my baby is healthy.’” It was an enormous comfort, Jacqueline says, to connect with another woman who had experienced the same fears and who was now on the other side with a positive, healthy outcome. “She was three years out and doing great, and she mailed me pictures of the baby. I just wanted someone to tell me that my baby would be okay. There’s a lot of misinformation out there, a lot of doctors who tell you it can’t be done, when women do it all the time. It’s unbelievable, but it really can be done.”
Inspired by the connection with her peer support mentor and by the plan that she developed with her doctors, Jacqueline set out to take care of business. Her plan would include surgery to remove her right breast, followed by four weeks of chemotherapy (Adriamycin® [doxorubicin]/Cytoxan® [cyclophosphamide]) before her delivery date, and a course of chemotherapy (Taxol® [paclitaxel]) following the birth. She responded extremely well to her initial chemo, underwent successful surgery, and delivered her daughter, Scarlet, via cesarean section. Scarlet was perfectly healthy, and Jacqueline soon started her second round of chemo.
But the Taxol, Jacqueline says, combined with postpartum depression, put her in a dark place, and she really struggled emotionally until she again sought the help of a peer network. “I’m a social worker,” she says, “so I was, like, I run support groups—I don’t need a support group. By the time I was sobbing every night, my husband said, ‘Please join a support group and get some mental health help.’ When I finally did join a support group, it was the best thing I ever did.”
It was also during this dark period, Jacqueline says, that she first began thinking about giving back as a peer mentor herself. “My peer support person was so great that I always thought, I can’t wait to get to the other side of this when I can tell someone, ‘Don’t worry, my baby is fine, and I’m going to send you a picture of her.’ In my dark moments, I thought, If I get through this, I am going to be a support person.” It wasn’t long after she finished her second round of chemo that Jacqueline responded to a notice in the Pregnant with Cancer Network newsletter, asking for peer mentor volunteers. “As a social worker, I’m trained in talking to people and helping people through crises, so I thought I had a lot to offer in that regard,” she says.
Jacqueline now mentors other pregnant women with cancer through the Pregnant with Cancer Network. Since her initial surgery and two rounds of chemo, she has undergone subsequent prophylactic surgery to remove the other breast and reconstruction, which, together, took about a year. During that time she continued to mentor other women. “Every three or four months, I get a new person,” she says, “and I guide them up to delivery. Some people want to talk only once; some people want to talk once a week. I let them guide the interaction.” In each case, Jacqueline says, there are similar themes, allowing her to draw on her own experience and offer advice and support that only a survivor could provide. “There is fear for the baby, about loss of the breast,” she says, “and loss of hair is huge—in a lot of ways harder than even loss of a breast, I think. And always, there is the question: Am I going to be here to watch this baby grow up?”
As she fields women’s questions and provides them with the benefit of her own experience, Jacqueline is rewarded by knowing that she is offering perhaps the most precious of all gifts: hope. Hope remained central to her own story as she was determined to have another baby after her chemotherapy. Told by fertility specialists that she would never bear her own children because the chemo had put her into early menopause, she set out to learn as much as she could about natural healing; she ultimately opted to drastically change her diet and undergo acupuncture treatments as part of a regimen she discovered while researching on her own. Now, after delivering a second healthy baby—her son, Peter Jr.—and pregnant for a third time, she is determined to continue to pass along hope to all women in her situation. Though she knows each situation is unique, she feels that as a mentor she can offer women the insight of her experience and a glimpse beyond the despair that can sometimes be overwhelming.
“The thing that helped me most at my lowest point was reminding myself how many other women have done this and have come through it. Just being able to pass on that hope to someone else is the biggest reward.”
The mission of the Pregnant with Cancer Network is to offer hope and support to women who are diagnosed with cancer while pregnant. Through a network of women across the United States (and around the world), the group matches each new patient with a woman who once was given a similar diagnosis. This volunteer lends support, shares her experiences, and offers hope. The Pregnant with Cancer Network wants women to know that they are not alone in facing cancer while pregnant. For more information about the Pregnant with Cancer Network, visit www.pregnantwithcancer.org or call (800) 743-4471.
Bridgette Correale and Diane Harrington-Bowers-Voices of MammoSite
Breast cancer survivors Bridgette Correale and Diane Harrington-Bowers agree that unless you’ve been there, it’s hard to understand the impact that a cancer diagnosis will have, which is why both Bridgette and Diane jumped at the chance to be peer mentors in a program that would allow them to help newly diagnosed women who were facing treatment decisions.
“I knew that every time I went to the doctor’s office I was so uptight,” Bridgette says. “I knew I had to help people. I thought, As soon as I get myself feeling mentally and physically well, I have to do something.” Bridgette’s doctor provided her with the opportunity when she asked Bridgette if she would like to participate in the Voices of MammoSite program, which matches newly diagnosed women considering MammoSite targeted radiation therapy with a network of peer mentors. Because Bridgette had had such a positive experience with the five-day targeted treatment, which she underwent directly after the lumpectomy to remove a 0.9 cm tumor from her left breast, the 67-year-old restaurateur from Germantown, Tennessee, didn’t hesitate. “This is my way of thanking God for giving me the strength I had and that I have to move forward,” she says.
But Bridgette wasn’t quite prepared for the personal connection she would make with each woman she mentored. “The first couple of people I spoke with,” she says, “I was really feeling their pain and I thought, I don’t know if I can do this. I was going through all of their steps with them, even though they were in California and I was here; I knew what they were going through when they were going to the hospital.” Despite the emotional toll of those first couple of calls, Bridgette says, she knew she had to continue the work: “I knew I had to do it because I get a lot of reward from doing this—the goodness I feel inside. I get a lot of reward from helping other people, and my heart feels warm when I do it.”
And, she says, the community she has gained as a mentor has been an unanticipated reward. The volunteers who have come together as peer mentors for the MammoSite program have actually become a support group for one another, sharing stories, discussing side-effect information, and becoming friends along the way. The bonds they share, as survivors and as women committed to helping others, place them in a unique position to share valuable insights. Still, Bridgette says, at the end of the day the most rewarding aspect of her role as a peer mentor remains her ability to help other women. “I want to share what I know so that I can make a life better at that particular time. When you’re diagnosed you can feel like you’re singled out—you might ask yourself, What did I do wrong?—but you’re not alone.”
Diane, who was diagnosed three years ago at age 54, also feels that her greatest reward in mentoring other women comes from conveying that she truly does know what they’re going through. In her work as a clerical assistant in a medical clinic, Diane is often able to share her experience with women who open up to her, and she sees the relief on their faces when they realize that she is a survivor and that she is thriving. “I just feel like I’ve been blessed, and I’m happy if I can give back to others,” she says, “because everyone’s so scared, and it’s just rewarding to give them comfort.”
Diane is also happy to be able to guide women through some of the tough decision-making processes that women face after a diagnosis, as she remembers the period after her own diagnosis as a scary time. “I felt my whole world had crumbled underneath me,” she says. “You hear ‘cancer’ and you think you’re going to die. I thought I wasn’t going to see my grandchildren grow up.” Add to that the difficulty of making decisions about treatment, and the world seems like a blur: “I was baffled,” Diane says. “Everything had been thrown at me after I was diagnosed, and I had to make decisions.” She feels lucky, she says, to have had the help from her medical team, her husband, and her two sons, who together helped her choose to undergo a lumpectomy to remove her tumor followed by MammoSite’s five-day targeted radiation plan—which she would then follow with chemotherapy.
Having been through the process, Diane says, she is glad to be able to share her experiences with other women and be the one to tell them that there is light at the end of the tunnel. “I’ve been there and I know what it’s like to have someone to bounce things off of,” she says, referring to the support she received from her sister, also a survivor, who had been diagnosed three years earlier. And there was no question in her own mind that she would also be the one to help others when it came time. “I’m just the kind of person who’s always there for somebody. If I can help someone I will. I thought, If I can do this and I can give back, I will. It’s a rewarding feeling to give back.”
Ultimately, Diane says, her decision to become a mentor for other women was a choice she made because she valued the power she had to help: “It’s not a choice you have when you get cancer, but you have a choice to know where you’re going to go from here.”
Voices of MammoSite is devoted to connecting newly diagnosed breast cancer patients with a network of women who have confronted the challenges of the disease—specifically those who have been treated with MammoSite five-day targeted radiation therapy (a partial breast irradiation treatment available to patients with early-stage breast cancer that can be completed in less than a week.
Nancy Singleton -SHARE: Self-help for Women with Breast or Ovarian Cancer
Nancy Singleton was diagnosed with ductal carcinoma in situ (DCIS) in February 2005. “I clearly remember feeling the Charlie Brown ‘blah blah blah’ as the breast surgeon told me I had cancer,” Nancy says. “As I came out of the fog, I remember asking my surgeon where I could find support and education. She said, ‘Support groups do not help people; they scare them.’ She also did not think I should read Dr. Susan Love’s Breast Book. Needless to say I ran to the bookstore to get Dr. Love’s book and I found SHARE for a support group.”
Nancy’s proactive decision to seek support was transformative, she says, because speaking with other women who had been through a breast cancer diagnosis and treatment gave her the most precious gift: hope. “I was scared to death,” she says, “because I had to make so many major decisions about breast reconstruction, hormonal treatments, possible chemotherapy, and everything else. My knowledge of breast cancer was only that it happened to other women, not me.” But communicating her fears, and realizing that other women had similar worries and stories to share, was empowering. “I know that this sounds hokey,” Nancy says, “but when I sat in that room, for the first time I felt like I was going to live and that I was not alone. Sitting in a room full of women who were dealing with the same issues, who were also scared to death, gave me strength.” Likewise, Nancy says, her communication with a peer match counselor—a volunteer from the SHARE hotline who also had DCIS—was inspiring: “She shared her story with me, and it gave me hope.”
Nancy came back to SHARE, which offers peer support through hotlines, support groups, and educational seminars (all peer led), repeatedly as she progressed through treatment and decisions about reconstruction. “Before deciding on a breast reconstruction, I attended a reconstruction workshop at SHARE,” she says. “Again it was peer led. For some strange reason, it was easier to believe other survivors than the doctors, the nurses, and my family. By the end of the meeting, the women who had already had surgery were sharing their results with those of us who still were in the decision-making stage.” The sense of shared experience and support ultimately directed not only Nancy’s treatment and reconstruction ideas but also her career path, and it realigned her priorities.
Determined to give back by becoming a SHARE mentor herself before she was even a year out from her own diagnosis, Nancy knew that she wanted to help other women as she had been supported. “I asked to be trained on the hotline six months after my surgery,” Nancy says. “I was told I had to be a year out before I could be trained. I continued to attend support groups and learned everything I could about breast cancer. After eight months I asked (or pleaded) again to be trained to be on the hotline. I had a burning desire to help other women. I knew that what they had given to me, I could give back to others.”
Nancy soon realized that helping other women manage their cancer diagnosis and the upheaval that follows was her passion. “For me, helping others deal with breast cancer was a calling. I was 45 years old and finally knew what I wanted to be when I grew up,” Nancy says of the realization that she wanted to make a career and a life of supporting other survivors.?Nancy now works for Women at Risk as a patient navigator at Columbia Presbyterian Medical Center in New York and is grateful to be working in support of women in the breast cancer community—an opportunity, she says, which she owes to her SHARE training. “I will always be grateful for SHARE and the women I have met on my journey.” Nancy still volunteers for SHARE, working from home to staff the hotline on at least one day most weekends. “It is amazing to be able to hear the fear in someone’s voice and to be able to help,” she says. “Sometime it is information that you give them. Sometime you just listen.”
Nancy is also repeatedly reminded of the power of survivor support as she continues her own breast cancer journey. “A month ago I had a TRAM flap (reconstructive) surgery, and I had a special visitor. The woman who came in the door was the person I had my first hotline call with. She had a mastectomy a year and a half ago and I visited her, and now she was there to see me; this is how it works—full circle, woman to woman and survivor to survivor.”
SHARE (Self-help for Women with Breast or Ovarian Cancer) is a not-for-profit survivor-led organization for women with breast or ovarian cancer, providing support, resources, and information. SHARE offers three national hotlines staffed by trained volunteers who are survivors: a breast cancer hotline, an ovarian cancer hotline, and a Latina hotline (in Spanish).