Your One-Step-Ahead Guide to Breast Cancer
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Breast cancer survivor. It’s not a label I’m comfortable with. But, silver lining: I’m still here to write about it. Just over a year ago, I found a small, movable lump on the upper outside quadrant of my left breast. After a quick succession of scans and biopsies (in which tiny titanium clips pierced and displaced suspect breast tissue with the force and swift thwack of a staple gun), my radiologist called with the news: “You have four malignancies in your left breast, one of them in a lymph node.”
I will never forget that moment. It was the middle of a workday, a Wednesday, and I was perched on my gray linen sofa at home, hazy sun streaming through my windows. A pipe had burst at my office and our close-knit team was remote for a few weeks, which, in hindsight, graciously allowed me to lose my shit in private.
I would soon learn that my cancer was hormone receptor positive (aka HR+; meaning the tumors feed on hormones, in my case both estrogen and progesterone) and that I carried the BRCA gene mutation, in which up to one in seven carriers go on to develop breast cancer in their lifetime, often in both breasts, as cited by the American Cancer Society. After reading up on the latest statistics summed up by the Breast Cancer Research Foundation, I decided to have a bilateral mastectomy.
But as I worked through the paces of the cancer treatment, things got dark. I was disappointed in my body. I felt numb, spiritless, inconsolable at times as I floated between countless doctor’s appointments and everyday life. The velocity and happy chaos of being a career-obsessed mother of two young kids, a wife, a friend, and a New Yorker were at odds with my limbo state. Navigating when and with whom I would share my diagnosis was overwhelming in itself. Early on, I blurted out the news to an acquaintance in our gym’s locker room. She was kind, but there I was in tears and Lululemon, utterly embarrassed. How was I going to keep it together and tell my parents, my sister, or my kids, ages 4 and 7 at the time? I had the burden of knowing that my daughter had a 50 percent chance of inheriting the BRCA gene, too. I could barely look her in the eyes without welling up.
But I did it. Somehow, I let logic push through my crippling emotions. Normally impatient and fiercely self-sufficient, I surrendered to the diagnosis; to a year out of the driver’s seat. I stopped googling and put my trust wholly into my (many) doctors and welcomed the bounty of support from family, friends, and my husband. In letting go, I learned a lot about resilience and healing along the way.
I also learned a lot about managing breast cancer treatment and how to put yourself first. And as a former journalist in women’s media, I sought out second (and third) opinions and took insane notes. I share this road map now—with annotated advice, vetted resources, and firsthand insights—in the hopes that anyone going through or supporting a cancer journey can use it to move forward with a little more ease and confidence.
You’ve been diagnosed. Now what?
Understand what’s ahead
From the time you receive the diagnosis, expect your world to be turned upside down for 10 to 12 months before any hint of normalcy comes back (less time with a lumpectomy and no adjuvant treatments). Everyone’s plan looks a little different, and the sequence of events can vary. Mine was: mastectomy plus reconstruction part one; chemotherapy; reconstruction part two plus salpingo-oophorectomy (an awful moniker for an equally awful event: the removal of your ovaries and fallopian tubes); hormone therapy. And now, more than a year out, I’m awaiting a revision surgery for the implants. Some patients need radiation or chemo to shrink the tumors before a mastectomy or lumpectomy; others may need no radiation or chemo at all. And each treatment is followed by a buffer for further testing and healing (physical and emotional), adding up to a long, disorienting year. But understanding the timelines allowed me to break the year into chapters and celebrate milestones along the way. Remember that it’s your body: Don’t forgo critical treatments, but if you need to take a pause and reschedule surgery or push out a chemo session because emotions are spinning, just do it.
Here are timelines for each component of your possible treatment:
Mastectomy: Six weeks from surgery back to full physical capacity. Memorial Sloan Kettering Cancer Center (MSK) in New York City (where I was treated) defines mastectomy as removal of the entire breast to treat cancer. Sometimes that removal includes nipples, sometimes they’re spared. Expect up to two weeks in bed, with surgical drains attached at your sides, with a total of six weeks of at-home physical therapy and limited activity.
Lumpectomy: One to three weeks. This smaller, localized outpatient surgery removes pre-cancers or early stage cancers and is much less taxing on the body than a mastectomy but can still be coupled with adjuvant therapies like chemotherapy, radiation, or hormone therapy.
Reconstruction surgery: Four to six weeks. These options include saline or silicone implants, fat transfers, or staying flat. Tissue expanders (deflated implants, placed in the chest cavity by a plastic surgeon immediately following the mastectomy) are a common part of the reconstruction protocol. Months later, after gradual fill sessions via saline injections meet your desired size, the shapeless expander mounds are swapped out with permanent implants in an exchange surgery. Some surgeons skip the expander step and place implants immediately following a mastectomy.
Oophorectomy: One to two weeks. With a BRCA mutation comes a heightened risk for ovarian cancer, for which there is no early detection. Your doctor may recommend surgically removing your ovaries (and possibly your fallopian tubes), a fairly minor laparoscopic procedure that can be performed at the same time as reconstruction, with little downtime. This removes the body’s main estrogen source (which in turn lowers recurrence risk for HR+ cancers) but kicks you into medical menopause, with all the side effects—hot flashes, achy joints, dry skin, rage. If you’re planning to have children, talk to your doctor about alternatives to this procedure.
Chemotherapy: Three to six months of treatment for early-stage breast cancer. Depending on the type and length of treatment, you may be able to return to some normal activities (i.e., work) between sessions. MD Anderson Cancer Center offers a comprehensive patient chemotherapy explainer (ignore the patient protocols if you’re not being treated there).
Radiation therapy: One to six weeks of treatment. Like chemotherapy, radiation works in tandem with surgery to destroy cancerous cells that can’t be seen with diagnostic testing, as described by MD Anderson.
Meet your medical team
After the initial screening with your diagnostic radiologist, most of the doctors overseeing your cancer care are oncologists. The most critical: your breast surgeon, a.k.a. the MVP, who steers further diagnostic tools including MRI, CT scans, and genetic counseling to inform your treatment plan. The surgeon then literally cuts the cancerous tissue from your body and choreographs your army of specialists. Make time to find the right match and get a second opinion. Look beyond their credentials. The right surgeon will make you feel at ease, taking the time to educate you about your tests and treatment options along with their recommendations, while ultimately leaving the decisions to you. (I spent so much time at the hospital doing tests, I also gleaned a lot about my beloved surgeon from the nurses and technicians who support her.)
Your other team members include medical oncologist (overseeing chemotherapy and/or immunotherapy and hormone therapy), therapeutic radiologist (if radiation is in your plan), reconstructive plastic surgeon (who picks up where the breast surgeon leaves off, if you choose any sort of reconstruction), and gynecological surgeon (if you remove any reproductive organs).
Find yourself a breast cancer friend
Mine is named Hallie, a colleague turned confidant who was my cancer mentor. She had a similar type of cancer and was about a year ahead of me in treatment. Although we lived on different coasts, she showed up—via text, DM, and cold calls—to guide me through every step, even when I didn’t ask for help. Your community will try to set you up with breast cancer survivors in their circles. I was hesitant at first, but the connections helped give color to my options and confidence in my exhaustive decisions. You may also find your Hallie through a support group, like these free online ones from MSK. This resource from Susan G. Komen concisely summarizes support by need and stage.
For private therapy, start with your hospital’s social work team, who can refer mental health professionals experienced in cancer care to help anticipate and manage twists and turns in your journey.
Figure out whom to tell, when
I kept my diagnosis extremely private at first, and, beyond telling my inner circle, I mostly shared the news via text so I could control the delivery. To this day, my favorite reply is from a former boss: “Oh shit.”
I found the Cancer and Careers guide to navigating professional conversations extremely helpful. One tip that stuck out is identifying a buddy at work to field questions about your health and communicate updates more widely (to your comfort level) to save you the emotional drain of repeating your story.
For speaking with children, this parent support guide from MSK outlines advice by age, including language to help young kids understand what their parent is going through without scaring them.
Ask for help
Everyone wants to help, but they don’t always know how. Due to physical restrictions around lifting and range of motion post-surgery, you won’t be able to prepare food or actively care for your family for at least a couple weeks, while ongoing treatments swallow up time and resources for months. Enlist a well organized partner/friend/sister-in-law to orchestrate around your needs, with help from a shared Google calendar and free basic SignUpGenius account.
Book visitors at home for company and simple household tasks, assign a few chemo companions to be by your side at these long, exhaustive sessions (mine were each about six hours all in with testing, every three weeks; in the waiting rooms, I met patients undergoing weekly or daily sessions to treat more aggressive cancers), hitch a ride to daily radiation sessions, meet plastic surgeons with a pal for a second set of ears and to lighten the mood as you pore over before-and-after photos, book babysitting windows for children or your pets.
Start a Meal Train page to allow loved ones to refuel you during recovery. Don’t forget to ask for lots of nutritious, vegetable and protein-packed foods, as well as snacks you love.
Stay organized
Keep your medical records, medication information, receipts, and notes in order as you’ll likely need to reference them throughout the year. A colleague sent me colored envelopes like these to sort all the paperwork, and I still swear by them.
Remember family planning
The Young Survival Coalition focuses on breast cancer patients under 40 and has well-mapped options for reproduction after a diagnosis.
Consider complementary therapies
Even well-resourced cancer hospitals may not offer holistic care like acupuncture and nutritional guidance, and there is a staggering amount of information online. I found these sources clear and digestible: acupuncture from breastcancer.org, qi gong from Susan G. Komen, Integrative Cancer Answers with Nalini Chilkov (the cost of her recommended nutritional supplements can add up fast, but her blog and book outline simple, easy-to-follow eating principles to “Outsmart Cancer”).
Tips to help you through treatment
Before surgery:
Stock up on physical comforts
Button-front pj’s, like these super soft Tencel ones from Eberjey, are essential, as you won’t be able to lift your arms over your head during recovery. (Also make sure to bring a shirt that buttons or zips in front to your surgery.)
Post-surgical bras, like these from Masthead, aren’t…fashion. But they are well-designed for function and fit (Velcro front closures make them adjustable), holding post-surgical drains and acting as a compression bra. Ask your surgeon’s office how many they’ll supply. You have to wear them 24/7 for six weeks, so you may want to order extras. After that, sports bras or snug tanks will replace traditional bras.
A wedge pillow like this one props you up in bed following surgery, so you can get up with more ease. You don’t need a specific style “designed for post-surgery,” just one that you can live with throughout multiple surgeries. If you have time, order a few and test them out before surgery.
A room-service tray or tall bedside table keeps everything that matters within reach: hydration, snacks, medication, books, devices, and remotes.
Build your strength
I did not have much of an appetite in the weeks leading up to surgery, but good nutrition is critical for healing. There is a lot of different advice out there, but the universal recommendation is bone broth (preferably beef as it’s rich with collagen and minerals): Drink at least one daily serving, before and after surgery. (A year later, I’m still at it.) Brodo offers home delivery and is also found at supermarkets; other quality brands include Kettle & Fire, Bare & Bones and Fond.
Go to the dentist
If your surgery is more than a month out, get your teeth cleaned. My breast surgeon reminded me of how much bacteria human mouths harbor and was adamant that I not do any dental work during the recovery process so my body could focus on repairing from the surgery itself.
After surgery:
Don’t overdo it
Like me, you may come home from surgery and feel fine at first. But overdo it and you risk ripping a stitch or getting an infection and living in regret. Bottom line: Take it easy. Your body will recover faster overall.
Simplify your skincare
Stick with gentle, fragrance-free formulas and steer clear of active skin treatments like vitamin C, alpha hydroxy acid, and retinol. As always, SPF is essential when venturing outside.
Get creative with hygiene
My plastic surgeon allowed me to shower only waist-down until my surgical drains were removed (about two weeks post-surgery), which meant I had to secure said drains around my neck with a lanyard to do so. And forget baths—they’re out of the picture for up to six weeks, once your surgical and drain sites are healed. In the meantime, unscented WaterWipes are good for an upper body cleanse (and your face in a pinch). A wet, warm wash cloth also does the trick.
Book a blowout—seriously. Instead of struggling to wash my hair at home in the weeks following surgery, I went to a neighborhood barber shop for a shampoo and blow-dry (and mental reset) every few days. It gave me a tiny sense of independence back. But also, staring at my recovering reflection during the blow-dry, I wept each time.
Stock up on stool softeners. If you’re taking serious pain medications, you’ll want to counter their effect sooner rather than later. Your surgeon’s office will recommend something over-the-counter (like Colace). Take it.
Prep for chemo
There’s no good way to avoid the fatigue and intense fog of chemo brain; all you can do is rest and rehydrate and, if needed, ask for supplementary drugs to help with nausea or severe reflux. I walked out of sessions feeling fine, energized by the steroids prescribed to offset inflammation caused by chemo. But three days later, I’d hit a wall for another two or three days before my energy rebounded before the next session. That gap period was when the waves of other side effects would appear.
Pamper. Small comforts like Egyptian cotton socks from Comme Si (gifts from my best girlfriends) and slip-on shoes make the uncomfortable treatment bearable.
Hang on to your hair. Cold cap scalp cooling is delivered by a contraption that looks like it belongs on the set of Dune and chills your scalp while the chemotherapy drugs course through your veins. It can help decrease hair loss but, unfortunately, is not covered by insurance. I still lost fistfuls of hair, but I do believe it worked—my hair stayed fullest in the areas that had the best cap contact. If you find yourself with a gap at the crown, try this hack I learned from a nurse: Sit on a resistance band, bring the ends around your sides and tie it at the top of your head to secure the cap. (Thank God for my dear friend Julia, who was by my side and scoured a 20-block radius by foot in search of resistance bands!)
Fortify your brows. A coworker’s sister-in-law in remission recommended Brian Joseph’s Lash & Brow Conditioning Gel, and I applied it religiously morning and night during and after chemotherapy, going through three tubes. In a small miracle, most of my lashes and brow hairs stayed intact. For better or worse, your hair will thin all over your body—legs, arms, face, pubic area. But it does grow back.
Call for backup. The minute I found out I was having chemo, I called my ever generous friend and hairstylist Serge, who snipped my waist-length hair into a long bob that I could still tie back. He also cut and styled a wig for me, which I wore on video calls but never got quite comfortable enough to wear out (I called her Sylvie in honor of Serge’s French roots). Just having her served as a security blanket. (And if I were to rewind, would I skip the cold cap, shave my head, and just wear Sylvie? Probably.) Go for a simple style, in a shade similar to yours. Real human hair is the most believable and can be found at one of these wig and hair piece providers.
Cover up. When my hair was sparse, a black baseball cap was my go-to head covering. When it started to grow back, I spot-covered patchy areas with L’Oréal Paris Magic Root Cover Up spray. Make sure your hair is dry when you apply it or risk the color running down your neck or face. Be warned: The color can also migrate in humid climates.
Hydrate. Coconut water or water with an electrolyte supplement will keep you hydrated if your throat, like mine was, feels like it’s on fire the days following chemo, and plain water isn’t appealing.
Lift your spirits. Chemo is long and monotonous, and if you’re wearing a cold cap, which covers your ears and straps around your chin, any kind of earphones will be difficult to navigate. Plus, if you’re getting your hands iced (to prevent peripheral neuropathy), reading and typing are off the table. So bring entertainment to your appointments—for me, a friend and an iPad loaded with binge-worthy shows (my lineup: The Summer I Turned Pretty, Sex Education, The White Lotus) made it possible to escape reality and help the time sail.
Keep (your skin) calm. On the long list of possible side effects, chemo rash is a common one. Mine cropped up in red, fiery patches on my torso, arms, and legs and required monitoring from a dermatologist. I found relief with over-the-counter Allegra in combination with a mild prescription steroid cream and fragrance- and steroid-free Aveeno Eczema Therapy Daily Moisturizing Cream.
Detox. Once the chemo drugs are in your system and run their course, you want to get them out to minimize side effects. Drink a ton of liquids, and try acupuncture and sessions in a salt room to help speed up the process. These appointments also forced me to take a quiet pause.
The reconstruction period
This was one of the more daunting decisions in my treatment plan, as it represented the “after” of my journey. Thankfully, my mastectomy and reconstruction surgeries and healing have gone well, but they were not without surprises—including a skin allergy to surgical bond that resulted in a raging rash, and slightly lopsided implants (even with the most meticulous surgeons, implants can heal slightly askew). For a deep dive into reconstruction options, read this primer from breastcancer.org.
Pick a plastic surgeon
Interview at least two, and make sure they collaborate with your hospital and breast cancer surgeon. Go prepared with a list of questions to ask, including types of reconstruction they offer (implants, fat grafting), placement of implants (beneath or above the pectoral muscles) and the use of tissue expanders (which help stretch out the skin before any permanent implant is placed). Know that reconstruction is not a one-and-done process, so make sure the person you choose is someone you can talk to and feel comfortable raising concerns with.
Manage expectations
If you know the type of mastectomy you’ll be having (nipple-sparing? single? bilateral?) and the size you want to be afterward, ask to see before-and-after photos from patient cases that are similar to yours. I had hoped for an “after” that resembled the pre-children version of my “before.” With a revision surgery scheduled for later this year and visible horizontal scars across each breast, I’d say I’m still only halfway there.
Help the healing
Have medical-grade adhesive tape remover at the ready to ease off surgical bond and lingering tape residue, which can irritate sensitive skin. Stock up on silicone scar sheets to help fade scars faster. I found a roll format easy to size for my various surgical sites. And, if your nipples were removed, consider trying temporary nipple tattoos to preview your desired results. (Some people forego nipple reconstruction or tattoos and opt for novelty tattoos—I’m told hearts and flowers are popular.)
Accept progress, not perfection
Reconstruction, I’ve learned, is a journey, too, with revisions a commonplace (and covered by insurance in most cases). After your permanent implants are placed, it’ll be about three months before they settle in, and from there, you and your surgeon can decide if revisions or additional steps—fat injections to soften the curves, nipple reconstruction, or 3D tattoos—are warranted, to get you that much closer to “normal.”
Looking back at the past year, I can confidently say that I’m close to accepting my new normal. Stronger in many ways. More empathetic. More fragile at times. But I am okay. And you will be, too.
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