23 Truths About Breast Cancer That Survivors Want You to Know
October 9, 2015 7:01 AM
Each breast cancer patient’s experience is different, but there are some universal truths that seem to hold true. (Photo: iStock)
Since Susan G. Komen began handing out pink ribbons at a race in the fall of 1991 to benefit breast cancer survivors, the entire country knows what “pink” means. Every October, we see flyers for walks, armbands on football players, pins on T-shirts, drives to benefit new research — all in honor of a disease that’s highly recognizable, if not deeply familiar.
But what do the nearly 3 million breast cancer survivors see each October — people who have actually walked the path and know what it means to go through the journey of diagnosis and treatment — when all of us only see symbols of a disease? We asked a dozen of them to tell us. From the emotional wear-and-tear to the facts they wish they’d been informed of earlier, here are 23 lessons they’ve learned along the way that we should all know.
1. A cancer diagnosis will bring people who care about you out of the woodwork.
“My experience with breast cancer drew most people closer to me. I got to experience what few people do — find out just how many people care about you. It’s an amazing feeling,” says Erin Scheithe, a 35-year-old from Washington, D.C., who was diagnosed with stage 2 triple negative invasive breast cancer.
2. But a cancer diagnosis will also push some friends away — and that’s OK.
“On the flip side, my diagnosis also pushed a few of my friends away, which upset me a lot at the beginning,” Scheithe says. “Cancer is scary, and everyone’s experience is so different. I wish others knew that those friends aren’t bad people, and it’s not personal. It’s just too much for them, and it’s OK. Others will step up, often some you didn’t expect, and that will blow you away.”
3. Breast cancer is not ‘easy.’ There are no easy cancers.
“I was diagnosed at age 25, around two-and-a-half years after a sorority sister, who is the same age,” says 27-year-old Jacey Powers from New York, New York, who was diagnosed with stage 2 invasive ductal carcinoma. “Our diagnoses were almost identical. We both ‘caught it early.’ We both went through multiple rounds of chemotherapy, bi-lateral mastectomies, and had continued hormonal therapy. We both planned on never having cancer again — but last year, my friend had a recurrence of her cancer, with mets [metastases, or cancer spread] on two organs. What I learned in seeing her new diagnosis, so close to my own initial diagnosis, is that people don’t really understand cancer. There are no easy cancers, and every year more than 40,000 women in the U.S. are dying from breast cancer specifically.”
4. Cancer is just part of a person’s story.
“While I was undergoing treatment, I constantly felt people were treating me like I was dying,” says Powers. “I want to be treated like me, not like my diagnosis; empathy is lovely, but pity is unnecessary. Whether cancer is a bump in the road, or ultimately the end of it, it’s just part of the story. Women, and men, going through breast cancer are not just patients. We are not victims. We are daughters, and mothers, and teachers, and doctors. People who stand in line with you at the grocery store, still get mad about stupid things like missing the subway, and want to talk about mundane stuff like the new season of Scandal.”
5. Breast cancer is not just a women’s disease.
“I noticed a lump and ignored it. To me, it was more of an irritant, but my wife insisted I get it checked out,” says Leslie Wayne Mullins, a 56-year-old from Madison, Georgia, who was eventually diagnosed with breast cancer in 2011. “We researched and found that most men almost never get breast cancer, that it was more likely a cyst. I wish that I’d not listened so much to what I was reading on the Internet.”
Leslie Mullins with his son. (Photo courtesy of Leslie Mullins)
“I was originally diagnosed with breast cancer in 2011,” Mullins continues. “At that point, doctors said it was stage 2, but when I underwent surgery for the mastectomy, they found that it was actually at stage 3, possibly stage 4. In late 2012, almost two years from my original diagnosis, I started feeling some pain and discomfort in my hip. At first, doctors thought it was a sciatic nerve issue, but that I should undergo a biopsy just to rule out any other possibilities. During the biopsy, it was discovered that the cancer had progressed to my bones, which is stage 4.”
6. A treatment plan that is more than just short-term pain management can change your outlook on a diagnosis.
“At that time, my doctors told me that they would mostly just be able to manage the cancer and gave me a few years to live,” Mullins says. “My wife and I wanted to do something proactive, and my pastor recommended Cancer Treatment Centers of America, so we sought out a second opinion from them. Integrated coordinated care was a real difference maker for me. I lost weight, felt better, started to exercise, wanted to get out more and walk around, and I overall just felt more motivated. I think that if you start feeling better overall, your body reacts. Doing things that focus on nutrition and exercise, that just make you feel good, helped with my experience. It was important that I found something that wasn’t just a short-term treatment plan, it needed to be a whole lifestyle change.”
7. A cancer diagnosis can you put you into ‘warrior mode.’
“I was 33 years old and had just had a baby, who was seven months old. My mother had recently passed away from breast cancer. And something inside me told me to get genetic testing done before I had another child,” says Brianna Meade, a 35-year-old from Chicago, Illinois. “I found out I had the BRCA-2 mutation. I went to my doctor. I was breastfeeding at the time, and she felt what I thought was a clogged duct — but this lump was hard, and it didn’t go away, I couldn’t massage it out. I got a biopsy done right away, and found out it was stage-2 breast cancer.”
Brianna Meade with her family. (Photo courtesy of Brianna Meade)
“Some break down, but I was in warrior mode. I had a baby, my mother passed away from this same disease, and I was not going down with this. I said, ‘Get me on the table,’ and had a double mastectomy almost immediately. During treatment, it’s like you’re running on empty, but have all this energy — it’s a crazy feeling.”
8. But cancer also depletes you physically and emotionally.
“One night in the middle of my treatment, I was sitting with friends, a normal night, talking about parking tickets, and I just lost it,” says Meade. “After a while, you’re so depleted. You’re so tired. I found out I was suffering from PTSD. Cancer is a war within yourself; something inside you is trying it kill you. You don’t get to sleep well at night knowing that. So I sought the help of a therapist specializing in young breast cancer survivors. I was overcome with anger and grief, and I needed help. I also met with other survivors, which was hugely beneficial. I’m normally very independent, but this is something that cannot and should not be handled alone.”
9. You’ll realize that sometimes you’re your own best advocate.
“African-American women are at a higher risk for triple-negative breast cancer (TNBC), an aggressive form of breast cancer that, compared to other forms, is harder to treat and is more likely to come back after treatment,” explains Felicia Mahone, a 35-year-old from Union City, Georgia. “I was diagnosed with stage-2 triple-negative breast cancer at 27. My mother died of breast cancer at 29. Two of her sisters died of breast cancer, one of them in her early 30s and another when she was 50. I’ve had six maternal cousins have breast cancer. Two years before I was diagnosed, my first cousin — and best friend — died at 25 of breast cancer. And then I got cancer, and I had to be my own advocate.
10. But a network of support matters, too.
“I learned how important it is for families to be a part of the treatment experience,” Mahone says. “Support from friends and family matters. My family figured that I was strong and I would be OK, so they really weren’t there for me. At first I was angry, I felt like they should have been there, but going through it alone helped me become strong. I became a patient navigator for Avon because I didn’t want anyone to go through what I went through alone.”
11. Chemo will knock out your menstrual cycle.
“With all of the chaos, confusion, and questions that surround being diagnosed with breast cancer and the concern with saving your own life, fertility doesn’t come to the forefront of a diagnosed woman’s mind until much later,” says 36-year-old Kimberly Williams, a Los Angeles resident who was diagnosed with stage-2A breast cancer. “One of the biggest side effects of chemotherapy is that it knocks out your menstrual cycle; being a young, 29-year-old woman at the time of my first diagnosis, I had asked my doctor if my cycle would return post-chemo. He told me that he wasn’t sure, because there has not been a lot of research done on young women and breast cancer. I was so sad and confused, because when I was concerned about saving my life and starting chemotherapy as soon as possible, I did not have time to really research my options.
12. Have the fertility talk before starting chemo.
“Fortunately, one year post-chemotherapy, my menstrual cycle did return. So fast-forward to a second diagnosis,” says Williams. “I had my fertility doctor run some tests, and he shared with me that half my egg supply had been wiped out due to my first round of chemotherapy, and that my second round would probably wipe my egg supply out completely if I decided not to freeze them. Life after breast cancer continues, so preparation and spreading knowledge is so key.”
13. What’s ‘normal’ changes after treatment in ways you don’t expect.
“I was diagnosed in May 2014, at the age of 26. I never imagined the aftermath of my treatments would be so difficult, almost as hard as the treatments themselves but in other ways,” says Kimberly Santagata, a 27-year-old from Boston, Massachusetts, diagnosed with stage-2 triple-negative breast cancer. “For example, how difficult it is to find your new ‘normal.’ After I had my mastectomies, I was having a hard time with my body image and self-esteem. It is very difficult to say goodbye to a part of your body, and then see it change and feel different all the time during the reconstruction process. I am reminded every day of what I went through just by looking at myself in the mirror.
14. Not everyone’s post-treatment experience will be the same.
“But I have come a long way,” says Santagata. “I am able to accept my new body more and more. I still struggle with not having the energy of a typical 27-year-old, which has made it very difficult to do my job as a nurse as often as I would like. Everyone handles the treatments so differently, so it is hard for the doctors to tell you how you are going to feel. I do believe life after breast cancer is something that should be talked about with your doctor, so you have the right aftercare to be able to handle the new challenges that are ahead of you. I do a lot of self-care and make my health a priority — because I only have one life to live, and I am happy to be here and living it.”
15. Be prepared for crazy comments from others about breast cancer — even complete strangers.
“I’ve been in remission for 3.5 years now, and I’ve had both small and big realizations,” Stephanie Johnson, a 42-year-old from Dallas, Texas, diagnosed with stage-2B breast cancer. “When your hair falls out, all of it falls out — including places you don’t realize such as in your nose. Those mucus-holding nose hairs go away, too, and that means lots of tissues. Not everyone can handle seeing someone with cancer so be prepared for some friends to fall away. It’s not personal. It’s OK that not all people cope the same. Total strangers will say some of the craziest things to you. Some favorites for me were, ‘Cancer is a government conspiracy. They have a cure. They’re just not telling us what it is,” “Can’t you just take a lot of vitamin C?’ and “I’m so tired of pink ribbons.’”
“It’s OK that not all people cope the same,” Johnson says.” (Photo courtesy of Stephanie Johnson)
16. Cancer can strip your self-esteem — but also teach you to let go of others’ expectations.
“It both slayed and rebuilt my self-esteem,” Johnson says. “So I learned to let go of everyone else’s expectations and sticked with my own essential needs, which helped. When my hair first started coming out, that’s a big hit on the self-image. Mostly because now I looked like a cancer patient. After a good cry with one of my dearest girlfriends, I realized I couldn’t control how others reacted to me. I could only handle how I felt and marched forward.”
17. Breast cancer strikes even those with no commonly known risk factors (unhealthy lifestyle, family history, etc.).
“I was diagnosed with breast cancer on Black Friday of 2013. I was blindsided. I was young, 32 years old, with no family history of breast cancer, a healthy diet, and a regular exerciser,” says Julie Rosenberger, A 34-year old mother from Holland, Pennsylvania, diagnosed with stage-2 breast cancer. “So I was suddenly catapulted into taking immediate action, and underwent a double mastectomy and chemotherapy. When more action and a choice of treatment was required, I had to rise to this challenge. My tumor was in my left breast, right over my heart. Intuitively, I felt that radiation would pose health risks, and I had to find out for sure.”
18. Don’t just count on your doctors and care team to tell you about treatment options — do the research yourself.
“Along with my family, what kept me going was that I became an empowered patient — the best advocate for my own care,” Rosenberger says. “I immersed myself in research to identify the best option for the next phase of treatment. I ultimately chose proton therapy, which would avoid damaging surrounding tissue and critical organs, like my heart, and minimize side effects. This was an important choice for me because of my age. I felt I had a lot of life ahead. Throughout treatment, my mantra was, ‘I have to be healthy for my twin girls, I have to watch them grow up. I’m determined to celebrate more anniversaries with my husband.’ No matter where you are, no matter who you are, it is vital to be armed with complete information about treatment options and health impacts. This is crucial for young women, who may face health issues down the road that may stem from treatment. It is well worth the extra effort and time for research.”
19. You may experience symptoms from chemo long after the treatment ends.
“Do not play the blame game after diagnosis. How and why you have cancer is not as important as beating it,” says Melanie Young, 56, from New York City, New York, who was diagnosed with stage 2A breast cancer. “You can combat the effects of chemo and radiation with hydration, exercise, sleep, and smarter nutrition; pace yourself and stay ahead of your nausea by watching what you eat. ‘Chemo brain’ was unexpected, scary, and more common than I realized with lingering effects for women after treatment ends. Same with neuropathy. Now, six years later, I still have neuropathy that I alleviate with yoga, stretching, and walking. You will be more physically limited post-surgery than you expect and for quite some time, so have plenty of pillows to prop yourself up.”
20. Doctors know a lot — but most cannot actually tell you what it physically and emotionally feels like to go through cancer treatment.
“In the years after treatment, you may experience delayed reactions or post-traumatic stress,” Young says. “You may question everything in your life. Really, doctors can only tell you so much. They can’t tell you what it feels like to have chemotherapy enter your bloodstream. They cannot tell you what it feels like to lose your hair. They cannot tell you how long it will take to heal physically and emotionally. That is why peer support is so important, and there are many wonderful organizations that offer it.”
21. We’re caring about breast cancer too late. Even young women should be aware of the symptoms.
“What I have learned about breast cancer is that the conversation is starting too late for women, and that it’s not always linked to family history,” says Heather Almond, a 37-year-old from Newcastle, Washington, who was diagnosed with stage 2B triple-negative invasive ductal carcinoma. “There are many lifestyle choices and strategies women could be implementing in their daily lives to reduce their risk, but that’s hard to do if you are not aware of them. Early detection is critical, too, especially for young women. If you are not performing monthly self-exams or if you do not know the symptoms of breast cancer, waiting until an annual mammogram at 40 could prove deadly.”
“There are many lifestyle choices and strategies women could be implementing in their daily lives to reduce their risk, but that’s hard to do if you are not aware of them,” says Almond. (Photo courtesy of Heather Almond)
“I am incredibly thankful that I attended Bright Pink’s Brighten Up Workshop a few months prior to my diagnosis; signing up for the monthly Breast Health Reminders saved my life,” Almond says. “Now that I’ve completed my treatment, I’m focused on cherishing each day and opportunity. I want to be a strong role model for my very young daughter, and I believe increasing awareness about breast cancer is one way of doing that.”
22. It’s important to continue to love and respect your body for all it does for you.
"After being diagnosed, I started showing my body the love and respect it deserved, instead of feeling disappointed and letting me down with cancer,” Christine Egan, a 48-year-old from Long Island, New York, diagnosed with stage 2 breast cancer. “Instead of focusing on my dimpled legs, I would change my thought pattern to how strong my legs were for helping me run my half-marathons. I would receive massages weekly while undergoing treatments; I wanted my body to remember what positive touch felt like after being handled in such a medical way.”
“After being diagnosed, I started showing my body the love and respect it deserved,” Egan says. (Photo courtesy of Christine Egan)
"Instead of pretending my scars weren’t real, I started writing love letters to my body parts. By thanking my breasts for feeding three kids and for still being a part of me, I was able to send my body the love it desperately needed to get me through treatments and beyond.
23. Cancer drains you. Only say ‘yes’ to what makes you happy and what you consider important.
“While undergoing treatments it was impossible to keep doing every activity that I was doing before cancer,” Egan says. “So I only said ‘yes’ to the things that made me happy; I only participated in the things that were really important. Some of my kids’ activities were attended. I had to say ‘no’ to some business activities. The laundry piled up, and sometimes the dishes were left in the sink. I needed to be OK with that, because the important things always managed to get done.”
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