22 Things Breast Cancer Survivors Wish More People Understood About Their Risks, Red Flag Symptoms, And How To Support Us
When I was diagnosed with breast cancer last year at age 37, I was “aware” of the disease, but I didn’t actually know very much about it. I just didn’t think about it as something that could happen to me. In fact, even the first doctor that I saw after noticing a change in my breast told me I was too young to worry about it. Going through all the scans, consultations, surgery, radiation, and hormone therapy has taught me so much that I could seriously write a book, and it opened my eyes to how little most people know about breast cancer.
If you’re curious about my experience, last summer I wrote about how I detected my cancer (spoiler alert: it wasn’t a lump) and what treatment was like for me.
Since October is Breast Cancer Awareness month, I asked fellow breast cancer survivors in the BuzzFeed Community to share their experiences and talk about things they wish more people knew about this disease that affects one in eight American women. Our stories are the best kind of breast cancer awareness, and I’m so grateful to each person who responded to my call (and I’m so glad we’re all still here). Here’s what they had to say:
1.”I was diagnosed with stage 3 at 19 after two years of being told, ‘It’s just a cyst; women your age don’t get cancer this fast’ when a tumor appeared in my milk duct quickly. I had to push a lot of people to get the tests I needed, and by the time they confirmed it was cancerous, it had spread through my lymphatic system. If something feels wrong, fight.”
“Also, chemo isn’t all My Sister’s Keeper. The hormones in my treatment made me gain 75 lbs in three months — weight which has never gone away, and I cannot count the amount of skeptical looks I’ve gotten when people find out the source of it. Fatphobia in the medical field is alive and well.”
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2.”I wish people knew more about stage IV breast cancer or metastatic breast cancer (MBC). It isn’t just found in older women or men. I was 37 when I was diagnosed. We didn’t cause it to be stage IV or do anything wrong for it to be diagnosed that way. Our treatment is ongoing, aka forever, and doesn’t always involve surgery or hardcore chemotherapy right away. Some people with MBC look just like anyone else walking down the street.”
“MBC gets the least amount of funding out of breast cancer funding and research; only about 4% of the funding raised overall goes to MBC, even though it is the only breast cancer that kills. Research for MBC benefits all stages of breast cancer.”
3.”I was 38 years old when I found a lump. I was convinced it was just a cyst, but since it was 2020 and that whole year was just awful, I decided to get it checked out just to be safe. Turns out I had stage 2B cancer. Luckily, I caught it early before it spread to my lymph nodes, so I decided on a bilateral mastectomy. After surgery, they tested my tumor using the Oncotype testing and determined I didn’t need chemo.”
“Although the mastectomy and subsequent reconstructive surgeries were really tough, I was lucky to have caught it early before it spread, so I had better treatment options. I’ll be on an estrogen blocker for 10 years, which has it’s own issues/side effects, but overall I feel good! This entire experience has changed my outlook on life, and I have a newfound appreciation and gratitude for life.”
4.”I just finished radiation treatments for my second breast cancer in two years — not a recurrence, different breasts, different types of tumors. Both cancers were found in early stages by mammograms. I can’t emphasize enough how important it is to get mammograms. I didn’t have any risk factors (other than being female).”
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5.”I was diagnosed with stage 2 breast cancer in 2020. I had no lump or outward signs. The tumor was back against my chest wall. I was only diagnosed by a routine mammogram. Please don’t put it off!”
6.”I suddenly felt a rock-hard lump at 39 yearsold, which is one year before the recommended age to start getting mammograms. So, the first and only one I had was when I was diagnosed with stage 2 breast cancer.”
“My recommendation is to familiarize yourself with breast self-exams and start practicing them. During a bath, when the skin is slippery is good, and the earlier you start, the better. I’ve always had ‘lumpy’ breasts, so I never really did self-exams, but by knowing what didn’t feel familiar — and acting quickly — I caught it before it got worse and was able to quickly do surgery and start treatment.”
7.”Breast reconstruction is not the same as a boob job. They are vastly different surgeries with very different levels of difficulty and recovery time. On that point, if I hug you and my boobs feel hard, please do not comment on it. I’m aware they are hard; you don’t need to tell me.”
“Also, if you have to get breast reconstruction, please research your surgeons thoroughly. I’ve had three extra major surgeries and life-long lymphedema in my arm as a result of a poor surgeon. Lastly, if you are breastfeeding and feel a lump, don’t assume it’s a clogged milk duct. Get it checked out.”
—Jenny, 63
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8.”Never say, ‘So, did you lose one or both of ’em?'”
—Janet, 68
9.”I’m not quite a survivor yet. I’m in the middle of the nightmare but still want to share. Friends will ask, ‘What can I do?’ They need to stop asking and just do. I felt uncomfortable listing things. Just go on a Target run and drop off basics. TP, paper towels, laundry detergent. Everything is appreciated. Cancer is exhausting.”
—Sandy, 55
Psst, Sandy, if you’re reading this, you count as a survivor from the moment you get your diagnosis! I’m wishing you the best of luck with treatment.
10.”The diagnosis changes how you look at your body as a woman. The meds available to reduce risks are a nightmare, from pushing you into menopause to not being able to get out of bed due to joint pain and weight fluctuations. Radiation treatment also comes with prison-like tattoos that take five to eight sessions to remove. There is no glamour to this diagnosis.”
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11.”Cancer treatment is awful. The effects are often lifelong. They tell you the immediate side effects, of course, but I was not prepared for the years of anxiety, fatigue, and chronic pain that I still deal with ten years later. Also, statistics are just numbers. I was diagnosed at 34. In a support group, I met a woman much younger than me, as well as a man with breast cancer. Even though you think it’s unlikely, cancer doesn’t discriminate and can hit anyone at any time.”
—Nicole, 43
12.”I was diagnosed when I was 26 years old. Back then, I was so positive that I could get through everything and face anything that went with it. Now that I’m 37 and have gone through three metastases, it’s different. I am full of fear for myself and my loved ones. The diagnosis is not a one-time thing; it is a sort of lifestyle. I always doubt my strength and faith, but with family and friends, I am able to live one day at a time.”
—Lourice, 37
13.”Everyone’s reactions to your diagnosis will widely vary. It may seem like some people pull back when you are going through treatments/surgeries, but not everyone has the capacity to deal with someone they care about going through life-altering changes. Find a therapist that focuses on cancer patients. Your brain chemistry changes if you go through chemo/radiation, so it’s a huge help. You are more than a slogan, more than a ribbon, more than a survivor.”
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14.”As a ten-year survivor of stage 3 breast cancer, yes! So many things you go in not realizing, but I’ll touch on a couple. Our bodies are crazy. It’s nothing to barely bump a foot, and a whole toenail comes flying off. Itchy, burning yeast infections in armpits, butt crack, and any moist fold of your body. People can accidentally be so offensive. The people who have never been through it claim, ‘Oh, I know it’s terrible.’ NO. YOU. DO. NOT. *KNOW* so please just stop. Meanwhile, I’m over here, mouth breathing, looking like Uncle Fester, and trying to talk myself into continuing to put poison in my body to hopefully live for my children. Cancer isn’t pink ribbons and girl power. It’s raw, ugly, and mean.”
—Brandi, 50
15.”I wish early testing for the BRCA gene were available. Growing up, I witnessed my two aunts battle breast cancer in their 30s and again in their 60s. One aunt suffered from breast cancer, as did her daughter. Unfortunately, my cousin passed away in her 40s. My mother faced ovarian cancer and went into remission for a year, but the cancer returned soon after her sister died from breast cancer. Three months later, I received my diagnosis at the age of 37: triple-negative breast cancer with the BRAC1 gene. I wish more people would get tested earlier for the gene, get yearly checksups, and not dismiss any changes in their breasts. Testing should be done earlier in life, not at 40 years old.”
—Carolina, 40
16.”Women need more information. When you turn 40, your doc will tell you, ‘Just go get your mammogram,’ but not why it’s so important. I believed all the myths about breast cancer. That most women who are diagnosed have the gene (false). That if you have it, you will feel a lump (false). That you’re too young when you’re in your 40’s (I was 46). I blew my mammograms off until I was 42. I had no physical signs when I was diagnosed. I shudder to think what would have happened if I hadn’t started getting yearly mammograms. Doctors need to do a better job explaining their importance and giving women accurate information!”
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17.”Survivorship is not easy. It is a daily battle managing long-term side effects due to surgery, chemo, and radiation. The side effects are many times debilitating. Life-changing diagnosis.”
—Ruthy, 47
18.”I was humbled and overwhelmed by the support that came to me from people I didn’t even know, as well as my loved ones. However, just because I had breast cancer, it doesn’t mean I want (or even like) pink-colored anything. If it reminds you of breast cancer, that’s great. Use that to be proactive in your own way. I have my personal daily reminders through scars, phantom limb syndrome, and the potential of recurrence. I have always hated the color pink, even more so post-diagnosis and treatment.”
—Jennifer, 42
19.”I had stage 2b breast cancer in 2018, had a mastectomy, but was lucky not to need radiotherapy or chemotherapy. I didn’t feel I could attend support groups because, within a few weeks, I was physically fine. Mentally, I was a mess and struggled to find support groups for people like me. I didn’t feel I deserved to be worried about anything since, physically, I was fine. I want people to know your mental health deserves the same support as your physical health. Go to those groups, speak out, and seek support. Do what you need to and accept you’ll feel guilty, but remember you survived!”
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20.”That it can literally happen to anyone. I am a healthy, active person with no real breast cancer history in my family. A regular mammogram changed my life. Happy to say I am 19 months in remission.”
—Kellie, 55
21.”I was diagnosed with two kinds of breast cancer in March 2020 at the age of 39. I noticed a dent in my left breast. The bottom was almost completely flat when I raised my arm. I chalked it up to weight loss. It only just so happened that I had my yearly gyno appointment, where I casually asked, ‘Hey, I’m turning 40 later this year. Should I start with the mammograms?’ Thank God he gave me the referral instead of waiting a year.”
“I had one tumor in my right breast and two tumors in the left — the biggest one being 2 cm. I don’t know how much bigger it would have had to get before I noticed it. Going through treatment was difficult, and I definitely don’t recommend doing it in the throes of a pandemic, but dammit, I’m still here and cancer free!”
22.And finally, “I’m a survivor as well. Diagnosed at 32 with stage 2 triple-negative breast cancer. No family history, no mutation. Nothing. I most likely had it while pregnant but did not know it at the time. I had 5 months of chemo and three surgeries, all while my daughter was under a year old. The Breasties are a great organization. They do great things for the community. Here’s to good health and standing up for your own body. Never let anyone downplay something you think is serious!”
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Are you a breast cancer survivor, too? Tell us about your experience and what you wish more people understood about it in the comments!
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