We recently asked the BuzzFeed Community to tell us what they wish people knew about having breast cancer. Here are some of their responses:
Editor's note: Everyone's experience with breast cancer is different. These stories are personal, and are meant only to shed light on some of the less-discussed aspects of the disease.
1. It affects people's lives long after it's out of their body.
"I wish more people were made aware that even if you survive, you may not be the same person you were before. That chemo can have a devastating effect on your cognitive ability and your personality. That being forced into menopause is a form of hell I wouldn’t wish on anyone. That having cancer can be incredibly expensive even with the best insurance. That you might not want to talk to friends from BC (before cancer) because you are not the same person you were before and that person may never exist again."
2. It can happen to anyone, and at any age.
"I was diagnosed at the age of 23 with no family history. Advocate for yourself! I was lucky I had a doctor who was vigilant when I told him I found a lump. Most doctors would've told me to wait six months and by then the lump would've only gotten bigger. Due to my doctor's intervention and recommendation of further testing I was diagnosed at Stage 1 rather than Stage 4."
3. No one wants to hear horror stories you know from friends who've had cancer.
"Being diagnosed with breast cancer at 25, there are so many things I wish people knew about breast cancer...or any cancer, for that matter. The big one is that everyone’s treatment is going to be different and, ergo, affect them differently. I can’t count the number of times someone told me, 'Oh this person that I knew that went through chemo had their bowels fall out,' or 'I had a friend who only got a lumpectomy and they ended up dying'. I’m not saying you shouldn’t share your experiences and stories, but that does not mean that’s what I’m going through or will go through. Quite frankly, all it did was scare me. It didn’t help at all."
4. "Save the tatas" is not the best slogan for breast cancer detection.
"I had a double mastectomy two weeks ago. I actually hate the 'save the tatas' phrase. In order to save my life, I had to sacrifice my breasts. Our society puts so much emphasis on sexualizing breasts that it can be hard for some women to make that decision."
5. It's not all about pink ribbons and fun runs.
"Not everyone wants to wear the pink ribbon and march in parades. Some like to keep their fight private."
6. Being "strong" all the time is really, really hard.
"Sometimes is exhausting to be so 'strong.' Cancer isn’t just a physical fight."
7. And definitely don't assume you know how they got breast cancer.
"Anyone who tells me that I got cancer because I drink can fuck off."
8. Fellow survivors can form an invaluable network of support.
"One of the hardest parts about going through breast cancer was the pain, loss, and rejection I felt by a lot of formerly close people in my life who, for whatever reason, were not there for me. But what I found tremendous solace in was eventually speaking to a fellow survivor. She empathized with my feelings and the fact that many people don’t realize that incredibly hard aspect of the process. But then she added that what you do find is so many people you might not have ever expected to come out of the woodwork and display incredible amounts of kindness and support.
Remembering every act of kindness during my experience helps make up for the hurt of the losses. And speaking to fellow survivors can be extremely helpful and therapeutic."
9. Chemo can really mess with your body for a long time after it's over.
"Just because chemotherapy is over and our hair has grown back doesn't mean the pain isn't. There are a lot of nasty side effects to chemo and other medications that breast cancer survivors have to take afterwards. Even here six years later, I still have a variety of health issues due to my experience."
10. Always get a second opinion.
"I had a mammogram at 35 and I was told nothing was wrong. The next day my nipple was bleeding. I went to the ER, and the doctor didn't even look at me, he said that it was fine. I went to get a second opinion from my OB/GYN. They saw my nipple bleeding and walked me over to a breast specialist. The breast specialist did an ultra sound. The lump was the size of a pin head. It turned out to be cancer. I was diagnosed with stage 1B ductal carcinoma. This happened a month before my 36th birthday. The cancer spread to my lymph nodes in a matter of weeks. I had 20 weeks of chemo and a mastectomy. I turned 40 this year. If I would have listened to doctor number one, I would not be here now."
11. It's OK to be sad, scared, and angry.
"Accept your emotions. I screamed, I cried and even now sometimes I get upset about having had cancer sometimes even six years later.
12. Terminal breast cancer can be invisible, like a lot of other chronic diseases.
"Breast cancer is not a single disease. There are several different types, each with different medications and methods for treating it. About 1/3 of people who get early stage breast cancer will have it return and metastasize, aka have the same kind of cancer show up elsewhere in the body (stage 4). Once that happens, you now have cancer for life. There is no cure or remission. On the other hand, this does not mean you're going to die tomorrow. There are a lot of different medications and targeted therapies beyond chemotherapy. Like many chronic diseases, you often look like anyone else. But it tends to always be there at the back of your mind, not knowing if you'll even be alive in five or 10 years. But you can't dwell on it too much, or life just gets too depressing."
—Ruth Baugh, Facebook
13. And the treatments are particularly draining.
"Treatments can wear you down emotionally and physically. You lose your strength and often wonder if it’s worth it. That doesn’t mean you quit you just may want to quit."
14. The fear of getting it again never fully goes away.
"The fear of the cancer returning never really goes away. My mom had breast cancer when I was 14 and 23. This last time they scraped her sternum to make sure they had gotten all of cancer cells because what little breast tissue she has left from the first time was eaten up with cancer cells. I live in terror that the next time she won't be so lucky to survive a third time."
15. Family members go through their own pain.
"I wish people understood that the family of those with breast cancer have their own battles too. We feel helpless, we feel fear, we feel defeated, just like the person with cancer. As much as we try to be strong for our loved ones, we are trying to keep our own battle at bay. After my mom’s battle with breast cancer, I had only a couple of friends actually reach out to me and see how I was doing. Those couple of people became my biggest support system because I knew they cared about me. Everyone needs a support system, so please reach out to the family members who are also affected by cancer."
16. It's not a curse.
"It's not a curse. My mom is a survivor. She lives happily, except she needs to always watch her food (no deep fried food and no MSG)."
17. And breast cancer is never a person's sole defining characteristic.
"We are more than our breast cancer diagnosis/experience. While I am a breast cancer survivor and that is a primary part of who I am, I also have a Ph.D. in psychology, I am a professor, I am a wife, I am all of these other things that make me who I am."
Responses have been lightly edited for length and clarity.