25 Things No One Tells You About Getting A Mastectomy

    "Losing my breasts gave me a strength I wasn't aware of. And the strangers on my chest now remind me daily how resilient I can be."

    Caroline Kee
    by Caroline Kee

    BuzzFeed News Reporter

    We recently asked members of the BuzzFeed Community to tell us what they wish people knew about mastectomies. Here are their responses.

    Mastectomies, or breast-removal surgeries, are typically done to treat breast cancer. But more people are now getting them to prevent breast cancer because they are at very high risk — most often because they carry a BRCA gene.

    There are several different types of mastectomies, depending on what kind of surgery is done and how much tissue is removed. Examples include a total mastectomy, partial mastectomy, radical mastectomy, nipple-sparing mastectomy, and more. Sometimes only the breast is removed, and other times the chest muscle and lymph nodes must be removed as well.

    Regardless of the type of mastectomy, there are many preconceived ideas and misconceptions about what exactly it entails. Here are some key facts people want you to know or wish they knew before getting one. (Warning: This article contains pictures of surgical scars and post-mastectomy breasts.)

    Some of the photos in this post were submitted by community members along with their stories, which is noted in the image credits.

    1. The entire process can take a long time and several different surgeries to complete.

    Instagram: @mrandreaestella / Via instagram.com

    It usually takes several surgeries, at least, to get everything taken care of. People seem to assume that it's like regular breast augmentation with one or two. No one realizes that there are many steps to mastectomies.

    —bree-nb

    2. A mastectomy with reconstruction surgery is not the same as as a typical breast augmentation.

    David Murray / Getty Images / Via gettyimages.com

    A mastectomy is NOT the same as a boob job. All the breast tissue they can get is taken out, and your nerves are cut. Most people never gain back full sensation. It is also an extremely painful surgery, and it is common to have drains coming from your chest for weeks afterward.

    —christieb4cf98f065

    3. The pain is both physical and emotional.

    Pradit_ph / Getty Images / Via gettyimages.com

    Having a double mastectomy at age 29 was really difficult. I was given nine days' notice to prepare for surgery and I was extremely overwhelmed. I ended up in the hospital for four days and three nights after because my pain level was out of control. The pain was both physical (all of my breast tissue was carved out, as well as 12 lymph nodes removed from one armpit) and very emotional.

    For the first week after the surgery, I would sob every night, and it took some time to readjust to my new body. I had plastic tissue expanders placed between my pec muscle and my chest wall, which caused indescribable pain and discomfort.

    My fake boobs look nothing like my natural ones did and they’re hard as rocks. The skin on and around my “breasts” is numb, so there’s no sensation there. Luckily, I’ve bounced back and have mostly full range of motion again, and besides my chemotherapy treatments, life is otherwise getting back to normal and I’m feeling good!

    —ericaw15

    4. Some people choose to have mastectomies preventatively.

    5. The waiting period before you get a mastectomy can be the most terrifying and isolating part.

    Jenny Chang / Via buzzfeed.com

    I am scheduled to have a bilateral next month — not due to cancer, but the higher risk of developing cancer. Although the doctor says my chances are small (I have a diagnosis of ADH), I feel this something I need to to do.

    Lately I’ve been having second thoughts, maybe because a few months have gone by since when I was first diagnosed. I could opt for a lumpectomy and see what the pathology reveals, but at the same time I just want to get it all over with and have both removed so I don’t have to worry about it in the future. I’m very scared and feel very alone in this.

    My husband doesn’t understand and just avoids the issue, and when I try to talk about it he keeps saying it’s my decision, and my children are too young to really get what I’m going through. I know this won’t be easy and I’m so afraid for what it will be like after because I know I’ll never be the same.

    —lpaigenyc

    6. Not everyone chooses to have reconstructive surgery after a mastectomy.

    7. There are a lot of options when it comes to nipples, including 3D tattoos.

    8. Mastectomy scars are more than skin-deep.

    mic.com / Via micdotcom.tumblr.com

    I had a bilateral mastectomy at 33 because I had breast cancer early due to a BRCA2 mutation. I learned about the BRCA at the same time as the cancer. I have to say, for me the mastectomy still wasn’t as bad as the hair loss from chemo. At least I could hide the scars from the surgery.

    While it’s an adjustment, I am happy to be rid of them. I have implants that don’t sag, won’t betray me by giving me cancer, and I don’t have to wear bras anymore. I couldn’t imagine keeping them after what they did to me, so I just feel like, okay, good riddance. The scars and severe pain from surgery are pretty commensurate with the emotional scars and pain you get from cancer, so they’re well earned and I’m proud of them. Obviously I’d choose none of it if I had the choice but hey, it’s better than the alternative.

    —rosemaryt41c5c20fd

    9. Just sleeping during recovery can be a struggle.

    Justin Paget / Getty Images / Via gettyimages.com

    You feel so much pressure on your chest after the surgery, and it took over a month or two for me to lay down to sleep. I had a bilateral mastectomy five years ago and I still get sore.

    —kimberleyb428486db6

    10. Surgical drains can be one of the most painful parts of the process.

    AnaOno Intimates / Via anaono.com

    I think individual experiences depend on so many factors, like age, diagnosis, and physical and mental health. I was 28 when I had a bilateral mastectomy with reconstruction due to having the BRCA2 mutation. The drains were the worst part about it. Your skin is SO sore around where the tube is coming out of your skin — it’s awful.

    Also, I had tissue expanders placed during my initial surgery. They go in between the muscle and chest wall. Then you go to the doctor every week or so and they inject more saline to slowly stretch your pec muscle out, creating a pocket for the implant to rest in. I think that overall it’s a crazy experience.

    —jmorposmo

    11. Complications and infections can happen.

    buzzfeed.com / Via Image courtesy of community member

    Sometimes complications happen. I developed an infection two weeks after my bilateral mastectomy with immediate reconstruction. I had to have a tissue expander removed for a couple weeks to get rid of the infection. It was very hard for me emotionally, more so than going through chemo.

    —kimberleyb428486db6

    12. It's pretty normal to lose all sensation in your breasts after a mastectomy.

    Jonathan Kirn / Getty Images / Via gettyimages.com

    I wish people understood that a mastectomy is not a boob job. They don't look like a breast augmentation and they don't feel like one either. My breasts are numb and although they look pretty good, they don't feel like they belong.

    —amj1016

    13. You may have to "relearn" how to have sex and feel pleasure after a mastectomy.

    buzzfeed.com / Via Image courtesy of community member

    Before I had my bilateral mastectomy, I hadn't realized how much my breasts and my sense of intimacy were inexorably linked. They were something I had sadly taken for granted, and the hardest thing for me was having to adjust to a new reality where I was removed (figuratively and literally) from something I hadn't even realized contributed so greatly to my sense of self.

    Everything changed. I now have to check myself daily for injury as I can no longer feel them. I still give myself regular self-exams, but have spent the better part of two years learning what my new breasts feel like, whereas I was so instantly attuned to the breasts I had lived with for 28 years. Sexually, I hadn't realized just how much my breasts contributed to my sense of pleasure. No longer being able to feel them, and not having them send those signals to the rest of my body, meant that I had to relearn how to feel good, and what else I liked. It was like having to learn how to be intimate with my husband for the very first time.

    One of the good things however, was learning how to feel in touch with my body, and feel strong and confident without those bits of myself I'd always linked so heavily with my identity as a woman. Losing my breasts gave me a strength I wasn't aware of. And the strangers on my chest now remind me daily how resilient I can be. If you're about to embark on this journey, please know that it's just that: a journey. It's hard and scary and exhausting but it's going to keep you alive, and turn you into a bonafide badass.

    —s4d821f090

    14. But adjusting to your new breasts or body can also be fun and interesting.

    buzzfeed.com / Via Image courtesy of community member

    Instead of being negative, I want to share something positive most people may not know. Breast implants glow bright orange if you put a light source up against them! I tested it out after my reconstruction and sure enough, they glow like pumpkins!

    —katd4a0a1ce77

    15. It can be difficult to ask for help with certain things — like lifting and carrying — that you used to do on your own.

    David Harrigan / Getty Images / Via gettyimages.com

    I'm fiercely independent, and had to learn how to ask for and accept help with lifting and other activities that we're cautioned about. It really helped when people around me saw that something needed moving and just helped because it can be hard to ask.

    I had my radical mastectomies one year apart, and the first doctor hadn't recommended physiotherapy. The second doctor did and I highly recommend it for getting more range of movement. I do feel like I'm entering a whole new world, though. Before, it was difficult for me to exercise, but now I'm feeling motivated to do things that I was hampered from doing before. My best friends have already committed to working out with me, and their support really means a lot.

    —nikkijamaica

    16. Finding the right bra can be a struggle, and sometimes the fancy prosthesis bras are uncomfortable.

    buzzfeed.com / Via Image courtesy of community member

    I had a bilateral nipple-sparing mastectomy with immediate reconstruction using tissue expander breast implants. Due to skin quality issues with one of my breast pockets, my implants were only filled with 120 cc of saline, which is pretty flat for someone my size. I thought the $100 surgical bra with falsies would come in handy, but I found it very uncomfortable and almost silly looking.

    I wore the bra once before ditching it for front-zip sports bras with breast forms from Walmart that cost a mere fraction of the price. They’re also machine washable, come in multiple colors and have given me some sense of normalcy during this otherwise abnormal time.

    —jodig4997bb99f

    17. It can be complicated to get an IV or have your blood pressure taken if you've had your lymph nodes removed.

    digitalskillet / Getty Images / Via gettyimages.com

    If you have lymph nodes removed, you cannot start IVs, take blood, or do a blood pressure test on your arm on that side of your body. No lymph node removal, no problem.

    —t4cfd42bf5

    18. Just because someone seems brave, it doesn't mean they aren't struggling on the inside.

    Jenny Chang / Via buzzfeed.com

    I feel like I’ll never feel sexy ever again. I’m the brave face of cancer for my family and friends, and I don’t feel like a woman. My husband unknowingly treats me differently during sex. We’ll never be the same intimately.

    —fawnstephensw

    19. Asking a ton of personal questions about someone's mastectomy can feel invasive, even if you're coming from a good place.

    20. Laughter and humor can be effective coping mechanisms for some people.

    buzzfeed.com / Via Image courtesy of community member

    I had my bilateral mastectomy at age 20 due to being a carrier of the BRCA1 gene. I chose to have my nipples removed and have reconstruction in the form of breast implants. Going into surgery, I wasn’t prepared for how different my body would feel with no breasts. I struggled with my self esteem until a few months after surgery, when the tissue expanders that were placed during my mastectomy were mostly filled. I was lucky to have my mother, who had a bilateral risk-reducing mastectomy before I was born, beside me every step of the way. I also found a Facebook group for women who have the same BRCA mutation as I do.

    Don’t be afraid to laugh at yourself during recovery. I sent weekly updates to my best friend that normally included a funny picture of my boobs that week. In the attached picture I was four weeks post-op and had gotten a spray tan to feel a little more normal. I had to wrap myself in an elastic bandage to keep my incisions from coming into contact with the spray-tan solution, so I rocked that awesome tan line for a week. I was not allowed to shower until all four drains placed during surgery had been removed. For 16 days after surgery I walked around with a canvas nail apron tied around my waist holding the bulbs of my drains. Your first shower after your mastectomy will be A LOT.

    —michaelam42a0fd10f

    21. Having a mastectomy doesn't mean you stop worrying that the cancer will come back.

    Prudkov / Getty Images / Via gettyimages.com

    As a breast cancer social worker, there are so many things women struggle with regarding this surgery. Everything from whether to have a single or double mastectomy; whether to have reconstruction; the fact that they have no sensation in their breasts; if they will have their nipple, have one tattooed, reconstructed or none at all.

    The entire process can take easily a year. The general public often says “just take them off” and I remind patients that these are body parts you’ve had your entire life — there is so much grief you no longer have them. There is also not a 100% cure if you remove both. Patients will always worry about recurrence.

    —kmc2

    22. Each person who gets a mastectomy will face unique challenges, so it's important not to compare yourself to others.

    23. Support systems — whether those are IRL or online — can make a huge difference.

    Rawpixel / Getty Images / Via gettyimages.com

    I highly recommend finding a support group, even if it’s online, so you can talk to others going through the same thing. I found the “Young Previvors” group on Facebook and it has been super supportive and helpful to be able to talk to other fellow mutants while going through the mastectomy process as well as the other screening you have to do when you have the BRCA mutation.

    —jmorposmo

    24. You may never feel "normal" again, but that's because you have a new normal.

    Anna Borges / Via buzzfeed.com

    I had bilateral mastectomies and sentinel node biopsy with immediate reconstruction last October. I remember when I was first diagnosed I asked a woman who had gone through the surgery how long it took for her to feel normal, and her answer was that she would never feel "normal" again. I thought this was such a sad response at the time, but now I understand that what she was feeling wasn't necessarily an overwhelming or lingering sadness or sense of loss (although those are real emotions every woman will feel at some point afterward).

    It's more that your normal has changed and that you are very aware of it ALL the time. There hasn't been a day that's gone by that I haven't thought about how I look different or that I can't feel my nipples, or that my boobs get REAL cold now that it's winter. You know that feeling when you sleep on your arm and you wake up feeling like someone else is touching you? It's very foreign. Not bad, just different.

    My medical team included an oncology psychologist and I still see her regularly. She's had a profound impact on my life and I would highly recommend anyone on this journey to find a professional in this field. I hope that every woman or man who finds themselves on this journey has as amazing of a medical team and support system as I did. And if you find yourself needing a person, I'll be your person.

    —nikkif4dfc45932

    25. Losing your breasts may change your body and your self-image, but it doesn't change who you are.

    Peathegee Inc / Getty Images / Via gettyimages.com

    A mastectomy is not the worst thing that can happen. Sometimes it’s the only option. A bilateral mastectomy was the only option I had because my tumor was so large, and I have a very strong family history of breast cancer. It does not make you less of a woman. You can live without your breasts. Not dying from cancer is much more important.

    Don’t treat the person any differently. It’s OK to laugh if they make jokes about their situation. Cancer humor is morbid, but sometimes it’s a great coping mechanism. Don’t try to tell the person what to do. If they tell you that they are choosing a mastectomy, don’t try to encourage them to have a lumpectomy instead just because you know someone who did that. It isn't your choice to make.

    —ruthiec824

    [Responses have been edited for length and clarity.]