When you learn you’ve been diagnosed with early-stage breast cancer, your first thought might be to get the most aggressive form of treatment just so you can put the disease behind you. Or maybe you’re considering a more conservative route based on what your doctor has told you. There’s no single solution when you’re faced with a breast cancer diagnosis. But with the benefit of hindsight, some women say they might have taken a different course of action or wish they’d been more prepared for the recovery process—if they had only known more beforehand. Here, patient advocates share their hard-won lessons to help others on their treatment journey.
Make an Educated Plan
Although it’s understandable to want to take action ASAP, “you’re not in the best decision-making mode when you’re panicked,” cautions Jean Sachs, the chief executive officer of the nonprofit Living Beyond Breast Cancer (LBBC). Besides, “by the time you find a lump or it’s been detected, it’s been there for a long time.” That means that, unless your doctor advises you that your breast cancer is very aggressive, “you should have time to think through your options, get a second opinion if you want to, and do your research,” she notes. Start with the National Comprehensive Cancer Network’s latest treatment guidelines for breast cancer.
Weigh the Pros and Cons of Reconstruction
“I wish I had been more aware of my alternatives for reconstructive surgery,” says Carol Joseph, 36, a psychologist from Sunnyside, CA, who had a bilateral mastectomy with breast reconstruction and implants four years ago. “It’s critical to have frank discussions with your medical staff about your alternatives—and the potential advantages and disadvantages—while taking your general health, way of life, and personal preferences into account.” Joseph points out to consider, for instance, the potential long-term effects of surgery such as lymphedema and a lack of feeling in the chest area: “I didn’t fully comprehend how they would affect my day-to-day activities.”
Prepare Yourself for Post-Op
Before the first of three breast cancer surgeries, Cinde Dolphin, 69, of San Luis Obispo, CA, hadn’t realized that the drains removing fluids from the surgical area would become part of her recovery for weeks post-surgery. She found the hospital’s method of attaching them to her clothing with safety pins cumbersome. “I wish the doctor had better prepared me,” says Dolphin. So she improvised a drain holder out of a “dollar-store lingerie bag” and ultimately invented a mesh apron to do the job. “It helped me physically to manage these drains in an easier way,” she says. “It also helped emotionally, because I was giving back.”
Line Up a Support Squad
“It’s crucial to set up a strong support network and give yourself time to recuperate,” Joseph says. “I wasn’t fully ready for the mental and physical toll recovery would have on me because it can be a difficult and protracted process.” Indeed, breast cancer survivor Leslie Lehr, the author of A Boob’s Life, calls finding community and support with other patients “a lifeline.” “You can compare notes and remedies without feeling so alone,” says Lehr, 62, who was diagnosed in 2012.
Talk Options With a Doctor You Trust
“If you didn’t go to medical school and don’t keep up with the latest statistics, how can you compare treatment plans?” says Lehr. She stresses the importance of building a care team you trust: “Finding a great doctor is the number one priority. Get recommendations from other survivors—but remember there are different types of breast cancer and many new developments.” The American Cancer Society has tips on how to choose a doctor, and you can find locator directories at the American Medical Association and the American Society of Clinical Oncology.
Make Sure Your Concerns Are Heard
When she was diagnosed with early-stage breast cancer 10 years ago at age 39, Amy Russell-Parliman of Westbrookville, NY, wanted to go flat (that is, without breasts) after a bilateral mastectomy. However, her medical team contended, based on her age, that she would be better off with reconstruction and implants. After two failed surgeries and rejected expanders, “I wish I followed my gut, but I figured they’d been doing this a long time, so I didn’t press,” says Russell-Parliman. She now realizes, “the doctors know the science, but not the feeling, the experience, and what it’s really like to live it.”
Focus on Your Future
“Regret is a bad rabbit hole,” says Sachs of LBBC. Instead of questioning your past treatment choices, “think of what you can do now to change your path going forward,” she suggests. For example, as Russell-Parliman reminds other breast cancer patients who come to her for insights, you may be able to have corrective (or revision) surgery to fix things about your breast reconstruction if you’re not happy with the outcome, even years later. “Just find the right physician where you have a voice in your care,” she adds.
Empower Yourself and Others
“It can be very powerful helping the next person and sharing your story,” says Sachs. After her ordeal with reconstruction surgery, Russell-Parliman trained to use her personal account to support others through LBBC’s Helpline “so people don’t have the same experience I did.” The mentorship program matches the newly diagnosed—as well as those in treatment and beyond—with someone with a similar cancer, age, and family situation. “My message: What’s good for me is not necessarily good for the next patient, but you’re often going to get better tips, resources, and help from somebody who has lived the journey,” says Russell-Parliman.
Bottom Line
Getting diagnosed with early-stage breast cancer can feel like being dropped into the great unknown. Gathering wisdom from those who have been there, done that can help you feel confident in the decisions you make. For more perspective from both doctors and patients, listen in to our video series Collective Conversations About Early-Stage Breast Cancer and read these firsthand accounts from survivors on surgery, chemo, recovery, and more. Plus, check out our list of questions to ask your doctor about breast cancer treatment at your next appointment. The more you educate yourself about this highly treatable disease, the more prepared you’ll be for the road ahead.
