Photo by Robert Hood / Fred Hutch News Service
I was diagnosed with breast cancer four years ago, in February 2011, and went through the full monty with regard to treatment: a double mastectomy, a few months of chemo and radiation, then daily doses of tamoxifen, a drug that blocks any lingering estrogen from hooking up with any lurking cancer like an overbearing chaperone at an eighth grade dance.
For the last two years, I’ve been living in a reconstruction zone, trying to put Humpty Dumpty back together again with the help of a rock star reconstructive surgeon. Rebuilding breasts is not easy — no matter how you do it, it’s sort of a boob job with a Bride of Frankenstein twist — but I’m finally done and have two breast-like objects on the front of my chest to show for all my trouble.
I call them “the strangers beside me.”
And they are strangers — spongy, cold mounds that feel neither pain nor pleasure, that refuse to budge an inch even when I’m running, that don’t quite look — or act — like normal breasts. Instead, they act a lot like the silicone sandbags I used to tuck inside my bra after the double mastectomy, except I can’t take these off at the end of the day when my chest starts to ache.
Welcome to my post-cancer body.
The fake boobs, or “foobs” — which, I might add, I’m thrilled to have — are just the beginning.
I also have scars and adhesions from the multiple surgeries. Chest pain and limited mobility from the radiation. Residual joint pain and fatigue from the chemo and tamoxifen, which has wreaked havoc with everything from my sleep to my sex drive and slammed me into menopause at about 60 mph.
Is it hot in here or is it just me? Yep, it’s me.
And there’s more. Thanks to “chemo brain” — a suite of cognitive symptoms brought on by cancer treatment — I now have trouble spelling, focusing, learning new things and remembering the conversations I’ve had with people.
And talk about trust issues. My body betrayed me on a cellular level. Who knows what it’s up to now?
Before breast cancer, I was a happy-go-lucky 52-year-old with all my bits and pieces, a fairly healthy body image and a normal libido. After breast cancer, things got very murky, very fast. Every time I looked in the mirror, somebody else was staring back: A board-flat 10-year-old girl. A bald space alien with a swath of blistering radiation burns. A hospital patient with a raging infection in her chest.
As a woman, hell, as a human being, it’s beyond jarring to see your strong, healthy body transform into something weak, wounded, battered and bruised. To look in the mirror and see 17 different kinds of wrong reflected back.
It’s taken four years, four surgeries and a couple of tattoos before I’ve been able to finally see myself in that mirror.
And it has not been easy.
Even as I write this, I feel like I’m having a sort of fight with my post-cancer body. Some days, I’ll feel proud of my strength, my tenacity, my survival. Others, I’ll hide in the corner of a gym locker room because I feel like a freak. And it’s not just about the way I look. It’s all of it: the pain in my joints, the uncomfortable tightness in my chest, the fear that the cancer’s going to come careening back into my life like that out-of-control bus people are always talking about. (“Don’t worry about the cancer. You could get hit by a bus tomorrow!”) Part of me even blames myself for all of this, as if breast cancer was some bad decision I’d made, like getting drunk at a company party.
Don’t get me wrong, I’m hugely grateful to be alive, to even have the luxury of venting about all of this. Things could be much, much worse, and I’ve lost enough friends and talked to enough survivors to know it.
This is just my reality.
Most people think you’re done with cancer when the treatment is over and your hair grows back. But the truth is, that’s just when things start to get interesting. That’s when you start processing everything you’ve been through, when your brain and your body start to play catch up and you’re left to grapple with grief, post-traumatic stress disorder, disconnectedness, fear of recurrence and more.
Some survivors are able to work through these profound changes without too much trouble. But it’s been a long, messy struggle for me.
And I’m not alone.
Fred Hutch file
Life after treatment
Leslie (Vietmeier) Heron, a nurse practitioner with the Fred Hutchinson Cancer Research Center Survivorship Program, told me that shame, anger, grief, fear, PTSD and feelings of “otherness” are common for many cancer survivors.
“I hear all of those things from patients and sometimes almost all at once,” she said, explaining how survivorship programs are trying to help people come to terms with all kinds of cancer-wrought changes, from the logistics of living with amputated body parts to treatment side effects such as hair loss, lymphedema and fatigue to emotional issues like depression, fear of recurrence and anxiety.
“In survivorship, we’re trying to normalize the experience of cancer survivors,” she said. “We’re saying you’re not alone feeling that your body isn’t your own any more or you’re having problems coping.”
According to Heron, many patients hesitate to bring up emotional issues with their oncologists. Their oncologists, in turn, may not know how to handle them so don’t always ask. As a result, appointments tend to be about scans and symptoms as opposed to murkier topics like sexual dysfunction or feelings of disassociation or betrayal.
“Oncology visits tend to be problem-focused,” she said. “Saying, ‘I feel kind of blue’ or ‘What about getting back to sex?’ may feel like trivial topics compared to ‘What does my lung scan look like?’ And I think patients are also so grateful that they’re alive that it almost seems disrespectful to say, ‘By the way, I’m really depressed.’”
Survivorship studies bear this out. According to a 2010 Livestrong report, 62 to 80 percent of cancer survivors have concerns about their personal appearance, grapple with grief and identity issues and worry about their cancer coming back. Only a quarter to a third get any kind of help for these issues.
But as both survivors and survivorship studies have found, concerns over body image, depression, anxiety and sexuality need to be addressed, if not with an oncologist then with a primary care physician or other health care provider.
That’s the aim of the Survivorship Program. Heron and colleagues meet with patients to create Survivorship Care Plans, referring them on to physical therapists, mental health counselors, social workers and others who can help sort out the emotional and physical aftermath of treatment.
And there is an aftermath.
Most people know about immediate side effects of chemo and radiation (think hair loss, nausea, mouth sores, burns and fatigue). But months or even years after the treatment dust has settled, many survivors also have to contend with late-term side effects such as bone-density loss, neuropathy, cognitive issues (aka “chemo brain”), heart and/or lung damage or even another cancer.
According to the American Cancer Society, one in four survivors — and keep in mind there are 14.5 million of us in the U.S. alone — has experienced decreased quality of life due to these physical problems— problems brought on not by the cancer, but by treatment. One in 10 has experienced decreased quality of life because of emotional issues such as anxiety, depression and fear of recurrence.
Parsing the new normal
What advice did Heron have for those of us trying to navigate this fraught “new normal”?
It depends on the individual, she said, but a good place to start is with healthy coping mechanisms that have worked in the past.
Writing and exercise definitely helped me get through my rough patches (trash-talking cancer was another favorite pastime). I started a blog shortly after I was diagnosed and joined a boxing gym six months after treatment. The reconstruction surgeries put a kibosh on the boxing — at least for the time being — but I still keep my hand in with a little lifting and running and a ton of walking. I feel better when I exercise. I feel stronger, both physically and emotionally.
Heron said many survivors do.
“Regular exercise helps you build strength, endurance and body confidence, and it’s a great way to overcome fatigue,” she said, pointing to survivorship programs like Exercise and Thrive/Livestrong at the YMCA and Team Survivor Northwest.
Humor is also a great way of coping, she told me, as is getting involved in support groups — although she emphasized they don’t have to be cancer groups.
“It might be a hiking group that you used to be part of or even volunteering at your kids’ school,” she said. “It’s just good to get back out into a community of people, even if it’s not specifically a cancer community. One of the things that happens around body image is self-isolation, and that can lead to more depression and less self-care.”
Reconstruction, she said, helps many breast cancer survivors feel more like themselves — as it has with me, at last. But others do just fine without it. Another helpful tactic: Seeking out stories of other survivors — whether in books, in person or online.
“It can offer a change of perspective,” she said. “And it also lets you see how others have coped and moved forward.”
‘Every scar tells a story’
Sweet and self-effacing, Maria Thacker is a 27-year-old nurse from Port Angeles, Washington. Since being diagnosed in 2010, she has undergone multiple wide-tissue excisions for her persistent malignant melanoma. She’s also a soon-to-be bride both proud of her cancer survivorship and self-conscious of the scars left in its wake.
Talking with Maria about her diagnosis, her surgeries and the difficulty she’s had finding a wedding dress that conceals the scars on her décolletage and upper back, I recognized the familiar emotional pendulum that comes with survivorship.
“I try to talk myself out of the fact that [my scars] are a big deal,” she said, her voice growing soft. “You know if someone else had a scar, I wouldn’t view it negatively at all. It’s kind of silly that it has that big of an effect on me. But it does.”
Maria told me she’d much rather have scars than cancer, but that she still had trouble accepting her post-cancer body — especially as her surgeon continues to whittle away at precancerous moles and patches of melanoma.
What’s helped her deal with the changes?
Supportive family and friends, including her fiancé, have done a lot for her confidence, she said. Ditto for letting others see her scars and braving their reactions.
“I guess you just assume that people will be grossed out, but they don’t feel that way,” she said. “It’s like they say, every scar tells a story.”
A 56-year-old Seattle writer with a big laugh and a love of history, Ann Wendell went through a single mastectomy and chemo for breast cancer in 2005. Like many survivors, she then had a hard time figuring out how to present herself to the world post-cancer, especially since she opted not to go through reconstruction.
“I didn’t have cleavage anymore and that was a huge loss,” she said. “And I sort of identified with cleavage. That was important to me.”
Wearing a prosthetic helped her feel more normal in clothes, she told me. And her humor, her writing and a supportive husband who assured her that her body was beautiful no matter what also helped with self-acceptance. But embracing her inner “steampunk” was what really helped her turn a corner.
“Dressing up and having a persona really helped me with my body image,” she said. “I could do anything I wanted. It was less focused on ‘You have to look exactly like what the public thinks a woman should look like.’ Steampunk is about creating new things out of old things, so I felt like I could create a new persona out of my old body. I could wear a corset over my clothes. I could wear bustiers, stockings, garter belts. Or I could be all buttoned up and still be considered sexy in a very Victorian way. I’ve had a lot of fun with that.”
I talked to many others: breast cancer survivors who covered up the mirrors in their homes so they wouldn’t accidentally catch a glimpse of their changed bodies and others who proudly rocked their flat and fabulous chests. Patients who came home from the hospital to see concentration camp survivors staring back at them in the mirror. Others who had so much fatigue they could no longer work. A colon cancer survivor told me she was thrilled that she didn’t have a lot of scars — or a colostomy bag — but was much less excited about her chemo-triggered arthritis and overall malaise. “I feel old in a way I did not pre-chemo,” she said. A prostate cancer buddy, several years out from surgery, described the penis injections he had to give himself every time he wanted to have sex.
How do you cope with that? I asked him.
“You just learn to live with it,” he said.
Photo courtesy of Eric Zytowski
An avid cyclist with a thoughtful demeanor, Eric Zytowski is another prostate cancer survivor who went through extensive surgery and treatment after being diagnosed three years ago. First, he had a prostatectomy. Then five weeks of radiation. Then he started androgen-deprivation therapy (ADT) — also known as chemical castration — a treatment that reduces the hormones that can feed the cancer. Soon after, the 51-year-old noticed his muscle tone and body hair were slowly being replaced with hot flashes and brain fog.
I met Eric in boxing class, shortly before he, too, hung up his gloves because of cancer- and treatment-related side effects. Now that he was almost done with the ADT, he was slowly working on getting his strength — and athleticism — back.
But like me, he was also still processing all the changes.
“Physically, I’m not the same,” he said. “I’ve had to go through surgery and recover from that. I’ve had to go through radiation and recover from that. And now I’m doing the estrogen therapy. It’s not that I don’t feel like a man. I just don’t feel like myself.”
Photo by Bo Jungmayer / Fred Hutch News Service
Will we ever feel like ourselves again? Will we ever accept what cancer and its treatment have done to our bodies?
“Acceptance can happen,” said Dr. Bonnie McGregor, a clinical psychologist and public health researcher at Fred Hutch. “It’s like any other process associated with cancer. There’s the diagnosis and getting all the information. There’s the treatment and the surgery. Then there’s the healing of the body and the image of the body.”
But that last part can take time, she said, explaining how our brains contain a sort of map of our bodies, a physical perception of how we look. When the body changes, the brain needs time to catch up.
“The brain — your brain’s representation of your body — has to change, like the body has,” she said. “There’s a disconnect. There’s grief that happens, too. The old picture of who you were is not there anymore. There’s a new picture, a new body. It’s amazing we can heal and we can grow into these new bodies. But part of the healing process is emotionally getting back into your body and dealing with the hurt and the feelings of betrayal.”
Am I there yet? Not quite. But after four years and a lot of self-talk, it feels like I’m getting closer.
Meeting with Heron and mapping out a survivorship plan has definitely helped. Ditto for reconstruction, writing, exercise, physical therapy, Netflix, new lingerie and hanging out with friends, family and, most of all, fellow survivors. It’s good to know you’re not alone. It’s also good to laugh about your fears and the endless indignities you have to deal with as a cancer survivor — transvaginal ultrasound, anyone? It takes away their power.
I’ll admit I’m still a work-in-progress. Who isn’t? Life is full of crazy surprises and cancer is just one of them. But I’m doing my best to navigate this strange land called survivorship, to process — and perhaps eventually embrace — the profound changes and forgive my body for being human, for being flawed.
I’ll let you know how it goes.
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Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.
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Solid tumors, such as those of the breast and prostate, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.