Breast cancer treatment has come a long way. The five-year survival rate for stage 0 or stage I breast cancer is nearly 100 percent, while the average survival rates for stage II and stage III are roughly 93 percent and 72 percent, respectively.
While those numbers are encouraging, they don’t make a breast cancer diagnosis any easier to swallow. From diagnosis to remission, breast cancer takes a toll in a number of ways, which are best articulated by the people who have lived it. While the process looks different for everyone who’s survived and thrived in the face of the disease — one thing is clear: Nothing can adequately prepare you. Here’s what four survivors have to say about the things no one tells you about life after breast cancer.
1. Cancer will try to steal your self-worth.
“[I wish someone had told me] cancer has the potential to strip you of everything,” says Robin E. Devonish, publishing maven, speaker and author of The Gift of Cancer. “What I mean by that is literally everything — your finances, your relationships, your level of confidence, your looks. A lot of that happened to me. I actually had to give up my car… because I couldn’t work when I was sick. I hadn’t even been married for a year and was diagnosed with breast cancer, and of course that affected my marriage.”
The hit to her self-confidence was among the most unexpected of them all. “There are certain parts of our bodies that we’re proud of, and I just so happened to be proud of my breasts… It took a while for me to feel desirable again.” All of these effects add up: “Cancer can wipe you out,” she says.
2. You will discover an abundance of kindness.
“I didn’t realize how many people really loved me,” says Devonish. “That blew me away. When I lost my car, my friend gave me her car. Each and every one of [my friends] took turns to go with me to chemo so I wouldn’t be by myself.”
Jen Hayden, senior social media editor at Daily Kos, had a similar experience. “I did not expect the dreaded diagnosis would give me an opportunity to heal some relationships that had fractured over time,” she says. “In many ways, it was easy to hit the reset button and put aside differences to focus on the things that really matter. There is no time for pettiness or grudges; you put it all aside, leave it in the past and move on. Focus on all the kindness around you, acts large and small. Accept all the help, all the love and try to give it back when you are able and it is needed.”
3. Not everyone will “get it.”
“I continue to be amazed at people’s reaction when you tell them you have or had cancer,” says Hayden. “The most common reaction is to tell you a story about someone they know who had cancer. I could not believe it when I’d tell someone and they’d launch into a story about their cousin’s wife who….yada yada yada. Many times it would end with the person dying, and I’d be standing there thinking, “Why did you tell me this story?” On one hand, I recognize that everyone has a cancer story and they want to share it because cancer affects nearly all families. And on the other hand, I’d be thinking, ‘OMG! Stop talking!’”
4. There will be more than one way to approach breast removal and reconstruction.
“I did not allow them to remove my breasts, because I didn’t believe that that was the best treatment plan for me,” says Devonish.
Hayden opted for a bilateral mastectomy and implants. “I had a bilateral mastectomy only seven weeks after my first ever mammogram… It was pretty much assumed I would get reconstruction; [it was] just a matter of which type of surgery I would opt for — silicone implants or flap tissue reconstructive surgery. The flap reconstruction is such an intensive surgery… and I simply couldn’t face another long recovery period. So I opted for the implants. The plastic surgeon was in the operating room with my breast cancer surgeon. As soon as she finished the mastectomy, he went to work inserting the tissue expanders. The expanders were in for nearly four months and I was really taken aback by how painful they were. I could not wait for them to be taken out of my body.”
“My plastic surgeon and his staff were great and they gave me a mountain of information,” says Hayden, “but it was all matter-of-fact… In retrospect, I wish I had spoken with women who’d been through the process so I would’ve had a better grasp of what was ahead. I’m pleased with how they look in the end, although I’ve yet to get used to how they feel. I would have more heavily weighed the idea of not getting them at all, something that never really crossed my mind before the surgery. Speaking of surprises, did you know they recommend having implants swapped out for new ones every eight to 10 years? I certainly had no idea until I was considering reconstruction options.”
Meanwhile, Terri Coutee, founder and director of DiepCFoundation.org, chose the reconstructive surgery. “There are those patients who have had very successful reconstruction because they [did their research and] aligned themselves with other patients, plastic surgeons and microsurgeons,” she says. “There are good and bad experiences, as with everything in life… It’s not always easy. I had to travel to have my reconstruction [with] the right doctor. I never tell anyone to have reconstruction. But what I want them to do is to get the right information so that they have successful conversations with their breast surgeon and their plastic surgeon.”
5. Your body will go through changes that stick around long after recovery.
“The changes that your body goes through with cancer and recovering [can be surprising],” says Devonish. “Like right now, I can’t use my right arm for blood pressure [tests]. They can’t put needles in that arm. Some of the medicines can cause hot flashes and early menopause… There are [a lot of] physical things that you have to be mindful of.”
6. Exercise will keep you sane — and make you stronger.
“One of the things that I wish would have been encouraged more…was signing up for physical and health-related activities that could enhance…treatment and survivorship,” says Coutee. After her second diagnosis, one of her oncologists encouraged she to sign up for a fitness program at the local YMCA. Coutee did, and started blogging about her experiences. She often hears from survivors who say she inspired them to start exercising again, and how it’s helped their recovery process.
7. You can’t go it alone. And you shouldn’t.
“There is a sense of isolation [during the recovery process],” says Coutee. “When you can get out and join a community…the encouragement is very empowering and helps with the mental and emotional aspect. I think a sense of community and comradeship kind of takes a cancer patient away from that daily grind and puts them in a position where they can [find] success.”
8. The silver linings are there — if you seek them out.
There’s no way around it: A cancer diagnosis sucks. And while reminders to “think positive!” aren’t all that helpful, some survivors find that looking for the silver linings can help them cope with the emotional fallout of their diagnosis.
For Coutee, who was in the middle of a master’s program when she was diagnosed for a second time, her diagnosis inspired a dramatic career shift. She completed an intensive Project LEAD® Institute training with the National Breast Cancer Coalition, and she’s now a patient advocate for other survivors. “I [turned] a second diagnosis into something that is so valuable to other patients,” says Coutee. “I think it was placed before me in a really unique way, and I ran with it.”
For Devonish, “Going through cancer made me realize what a gift my life is. A lot of times when people are diagnosed, the first thing they think of are the worst things. I think… that God took me through a journey of realizing the gift of my life. The gift of love, the gift of giving, the gift of support, the gift of healing, the gift of letting people go.”
9. Even as a cancer patient, your life is your own.
“Yes, listen to doctors. But then go further than that,” says Warrior Life coach, motivational speaker and author Bershan Shaw. “It’s your life. You’re putting your life in a doctor’s hands. But you can’t put everything [there]. You have to [take charge] of your eating, exercising and your mindset. You’ve got to get past the fear of it. You’re diagnosed; you can’t change it.
“This is your reality…If you want to live, you take control of your life and you do everything [you can to survive]. I never want to say ‘Oh, I listened to my doctors, and that’s it.’ It was my life. And the only person who’s responsible for it is me. I had to say to myself, ‘You either get busy living, or you get busy dying.’”