WebMD Health News

Voices of Breast Cancer Survivors: Looking Back, Offering Advice

photo of breast cancer survivors

Oct. 4 , 2021 -- Ashley Brown was sitting in the office of the doctor who would become her breast cancer surgeon, listening to his treatment plan as her mother tearfully took notes. After the explanation, including his opinion that a lumpectomy would be the right treatment, he asked if there were any questions.

Just one: Could she continue training for her upcoming half-marathon at Disney World, her first?

"He gave me a funny look and said, 'That is your biggest concern?'" recalls Brown, who was diagnosed 4 years ago at the age of 28.

Brown laughs now, admitting that it wasn't her only concern -- but it was a major one. She had trained and looked forward to this milestone. Looking back, she knows now that her gut reaction -- not letting cancer ruin her dream -- may have made all the difference on her road to recovery.

Currently in the U.S., there are more than 3.8 million breast cancer survivors, including those being treated and those who have finished their treatment. The vast majority are women, although breast cancer does affect men. (While a woman's chances of getting breast cancer are 1 in 8, a man's is 1 in 833.)

Each survivor's cancer, experts know, is unique, and so is their experience with it. WebMD asked several survivors what they wish they had known at the start of their cancer journey and what advice they would give to those newly diagnosed. Here, Ashley Brown and eight others share their wisdom.

Running After a Goal

Brown, a regulatory affairs specialist for a pharmaceutical company, had surgery in mid-January 2018, and the half-marathon was the end of February -- before she was to start on chemotherapy and radiation.

As she set out from her home in Camden, DE, to Florida, she had another request for her doctors: "Don't call me during this time unless it's an emergency." They agreed to that request. "I got a 5-day break," she says. "I think that stopped me from having breakdowns."

The half-marathon, which was preceded by a 5K and 10K "warmup," gave Brown "something to focus on and to be excited about." She suggests those newly diagnosed not cancel all their plans.

"If you have a trip planned, ask if you can still go,” she says.

On the financial side, ask about financial help when still in treatment, Brown says. She found out too late about some grants that could have eased her stress.

Older, but Not Risk-Free

Nancy Allen, 71, has spent the last 20 years supporting others facing cancer. She's executive director of We Spark, a cancer support center in the Los Angeles area she that she helped to found in 2001. Even so, she says she was "literally gobsmacked" when she found out in September 2020 that she had breast cancer.

"I went in for a mammogram and a bone density test," she says. "I was more worried about the bone density." She had the fleeting thought that breast cancer "is not going to happen at my age."

But it did. Her doctors found it early, so a lumpectomy was judged as enough surgery for her.

"In a way, I hit the jackpot," she says.

To others with a breast cancer diagnosis, she says: "Treat it like a project you are working on. Research your doctors: What is their education? Where did they do their residency? I created a little book and wrote stuff down."

She'd always talk to two or more doctors when there was a decision to be made, she says.

"Self-soothing" is crucial, she found.

"I believe in the mind-body connection," she says. "I believe in guided imagery and hypnotherapy where you can self-soothe."

She also got a "cancer mentor" who helped tremendously -- a neighbor who was 6 months ahead of her in treatment. Finding someone like that, she says, is especially helpful "when you feel out of control and crazy" -- because they can validate what you are experiencing and feeling.

Learn Not to Listen -- to Some

Soon after Ellen Brown, 63, of Los Angeles found out she had stage II breast cancer more than 10 years ago, a woman from her synagogue, who had recovered from breast cancer, invited her over for coffee. Brown, a retired human resources executive, was settled in for the visit when her friend brought out her medical file. Her huge medical file. And her friend wanted to go through all of it, review it all in detail, for her.

"She thought she was helping," Brown laughs now. But of course, she wasn't. For someone faced with a similar situation, she says it's OK, even preferable, to decline their advice and information. Not everyone agrees, but Brown believes friends who have had breast cancer "need to keep their mouths shut about their cancer" when talking to friends who have just been diagnosed.

After the coffee visit, she says, she concluded that "I just wanted answers from my doctor. I didn't want it from my friends." It’s important to have support. But she advises the newly diagnosed: "Seek out people who are just going to be good listeners. It's your journey."

Workaholics, Beware

Gayle Whittemore, 60, of Studio City, CA., is the chief financial officer for a nonprofit organization devoted to children. "I'm a workaholic," she admits. So, when she kept feeling an "itchiness" around her breast in 2011, she ignored it, despite pleas and nagging from her wife, Alexandra Glickman. The nagging ramped up when Glickman called Whittemore's mother, and they ganged up on her.

A couple of days after a biopsy in January 2012, Gayle got the cancer diagnosis. She had Paget's disease of the breast, a rare form that often starts at the nipple. After lumpectomy, chemotherapy and radiation, she is now at the 10-year cancer-free mark. Her best advice would be not to do what she did -- procrastinate.

Like Ellen Brown, she also suggests not listening to friends who have outrageous suggestions. One of her friends told her: "Just eat four cloves of garlic and you won't need the surgery." In response, Gayle says, "I basically said, 'Thanks so much.' I didn't bring it up again, and she didn't bring it up again."

Gayle also lauds her spouse for helping her get through. "She was with me the whole time," Gayle says, adding that it is important not to forget caregivers.

When it became apparent to both of them that caregivers need help, the two raised $200,000 to start a program, Couples Coping with Cancer Together at City of Hope Cancer Center, where Gayle received care, and continue to raise funds. To date, the program has helped 2,300 couples get though their cancer treatment.

Call in the Therapist

Deborah DeKoff, 60, an educator and professional photographer in Park City, UT, is an independent businesswoman who knows how to handle her life. Then, 5 years ago, she got her breast cancer diagnosis.

"You think you can handle everything, but you are being thrown so much," she says now. She wishes someone would have steered her to psychological counseling right after the diagnosis. In time, she did find a counselor, and it helped.

She also suggests: "Unless the person is a medical professional, do not listen to them. Everyone is Doctor Google: 'I read this on the internet.'"

Her treatment and recovery period were full of surprises, pleasant and not so. In the gym one day, another gym member grabbed the beanie off her bald head, saying she just wanted to look.

"You will find some people you have never met will come forward and be your best supporter,” she says. “Other people who you thought would be your best supporters will disappear forever."

Like many survivors, DeKoff now gives back. She's an advocate for Susan G. Komen, a nonprofit breast cancer advocacy organization. She aims to help other women not feel as overwhelmed as she once did.

"As an advocate, I have sat there with someone newly diagnosed," she says, and she offers help, whether taking notes at an office visit or suggesting they record the session.

Participate in Your Care

Soon after Maria McLeod, 58, of Bellingham, WA, found out she had stage 2 invasive ductal carcinoma, she knew one thing: "It was very important for me to empower myself and be participatory in my cancer treatment."

She did that by educating herself.

"I think it's important for people to understand their illness,” she says.

As a professor of journalism and an author, she was already good at researching. She also knew the wisdom of getting a second opinion.

"Through research and a second opinion, I didn't end up having chemo." When all the information was weighed, the lumpectomy and radiation were considered sufficient, she says.

"If you have a teaching hospital near you that you can go to, choose that," she suggests to those newly diagnosed, because these institutions are committed to research and may have a clinical trial that would be appropriate.

What she did not expect: Horrible suggestions from friends and hurt feelings from other friends. When McLeod told one friend about her diagnosis, "The first thing she said was, 'Why don't you just get both breasts cut off?’" And another friend, when he learned of her diagnosis secondhand, protested and whined: "I thought we were friends."

The bottom line, she says: "Even the most well-meaning people will say horrible things. Knock out the toxins in your life, and I mean two-legged toxins, too."

Fighting Fear, Staying Strong

Esmeralda Guzman, 48, of Beloit, WI, was way too busy for cancer. The mother of a 4-year-old (and two adult twins) owns an ice cream shop and a restaurant. When diagnosed with stage II cancer in June 2020, "I was shocked when they gave me the bad news," she says. "I cried."

She had helped her mom, who's now 83, get through her breast cancer 11 years ago. And she knew she had to be strong for her daughter.

She had a double mastectomy and reconstruction and just finished her last chemotherapy in mid-September. "Don't be afraid," she tells fellow patients. "Nowadays, the technology and medicine are advanced."

And take some time. "During treatment, I didn't work for a whole year," she says. She's back now and determined to grow her businesses.

Negotiate … and Prepare for Dark Days

Elizabeth Poston, 42, of Charlotte, NC, a book author and senior director of business development for a company, was 35 when she was diagnosed with breast cancer. "We went ahead and did a double mastectomy because it was growing quite aggressively."

She learned early to negotiate. "I drew a hard line on the nipple." They were not to take it, she told doctors, and they honored that demand.

"They wanted me to do chemo for six rounds; I negotiated down to four rounds." Her request, doctor-approved, was based on research from Europe and the U.S., she says, finding that less was OK for her diagnosis.

Timelines for treatment move fast, and "I wish I had taken a breath." The doctors' goal "was to save my life, and mine was to optimize the quality of my life."

All the pressure results in what she calls a "chemical flatline," which she experienced, and ultimately left her prone to anxiety and depression. Part of the difficulty, she says, was that "there's a period after [treatment] when the whole world looks away. Everyone, including you, gets tired of your narrative of cancer. I didn't want to continue the narrative of 'Elizabeth has cancer.'"

Expect a whole "relearning yourself phase," she suggests. "Allow yourself to feel, and try not to shut down." Surround yourself with a support system -- "whether one or 100 -- with whom you are sure you can be completely vulnerable with."

Cancer, and Difficult Fertility Issues

Robin Sprance, a creative freelance worker in Queens, NY, was just 36 when she was diagnosed with cancer in 2017. A month later, she had a lumpectomy.

Then, her oncologist brought up another decision she needed to make, ideally before she began the recommended radiation treatment: What about her future fertility? She had no children.

"That whole part was unexpected," she says of the need to decide whether to freeze her eggs. She did decide to do that, and insurance partially covered it.

"For women who are premenopausal, it's like a whole other animal" to figure out fertility issues, she says, when the focus is understandably getting the cancer under control.

She also had to get used to the reality of being the youngest one in the waiting room at her doctor's office. Then she found the Young Survival Coalition, a support organization founded in 1998 by a group of women all diagnosed with breast cancer before age 40.

"I made some friends there, and volunteered to run the Facebook page," she says. "It is helpful to know others in my situation."

WebMD Health News

Sources

American Cancer Society: “Breast Cancer Facts & Figures 2019-2020.”

Mayo Clinic: "Paget's Disease of the Breast."

Ashley Brown, 32, regulatory affairs specialist for a pharmaceutical company, Camden, DE. 

Nancy Allen, 71, executive director, We Spark Cancer Support Center, Sherman Oaks, CA. 

Ellen Brown, 63, retired human resources executive, Los Angeles. 

Gayle Whittemore, 60, CFO of a children's nonprofit, Studio City, CA. 

Deborah DeKoff, 60, professional photographer and educator, Park City, UT. 

Maria McLeod, 58, journalism professor and author, Bellingham, WA. 

Esmeralda Guzman, 48, business owner, Beloit, WI. 

Elizabeth Poston, 42, book author and senior director of business development, Charlotte, NC. 

Robin Sprance, 40, creative freelance worker, Queens, NY. 

[email protected], cell 610-202-2358 Phone interview.
 
Cell 818-667-2906, phone interview.
 
317-997-5415.
 

Phone conference call, via [email protected]

[email protected] phone interview.
 

[email protected], 360-595-2592

708-539-4848 cell, phone interview

Phone interview, cell, 708-539-4848, [email protected]

] [email protected], zoom interview.

[email protected], 917-648-8526 cell. Phone interview

© 2021 WebMD, LLC. All rights reserved.