Your Mastectomy & What to Expect

Do You Sometimes Feel Defeminized By Cancer?

Does this sound like a loaded question or what? I think it’s a very interesting one, and it’s one I have been thinking about for a long time. Cancer changes things. It just does. One day I was trying to make a list of areas of my life that have not been impacted by cancer, and I couldn’t come up with much to put on my list. So again, cancer changes things. Does it change everything? Well, maybe not everything, but it comes pretty darn close, or at least it feels like it on some days, right?

Throughout my life, I have always felt pretty good about myself. I have always had, more or less, a positive self-image. Now body image, that’s another ballgame. So I was thinking, has this really changed since before cancer?

Yes, it has.

Before cancer, I used to feel pretty confident about how I looked too. I was far from totally pleased about my looks, of course, but I felt mostly okay about my appearance. These days this is not the case. And this is in large part due to cancer treatment, NOT normal aging. It bugs the heck out of me when I hear that this is all normal aging, by the way. That is BS.

These days when I am fully dressed, I look alright. No one would ever know by looking at me I had my real breasts amputated, and no, I don’t think that’s being dramatic. That’s how it feels to me even though technically amputations only refer to limbs, fingers and such. I don’t care. Again, this is what a mastectomy feels like to me, an amputation. When a “real” amputee wears a prosthetic leg or arm, I’m pretty sure they don’t look at their prosthetic body part in the same way they looked at their original part(s). Anyway, when full clothed, no one would ever know or even suspect I am not the real deal physically.

But I know.

I know what’s there and what isn’t. And yes, I miss my breasts. I do not consider my implants to be my breasts. They are not. They are stand ins for the real deal. They are fake. They are not part of me. They never will be.

And saying these things doesn’t mean I am not grateful. I am. But I still miss what I once was, physically speaking. And yes, I know breasts do not define us as women, but they are/were an important component nonetheless.

Some days I walk around feeling like a complete fraud, or more accurately, a complete fake, again, physically speaking of course.

A new online friend, Georgia Hurst, asked me the other day if I felt de-feminized by cancer and all the surgeries I’ve had. I said, yes I do. Not completely, of course, but I’ve been torn down a notch or two. Literally. I wrote about this a little bit in my memoir because I feel there’s this tendency to downplay everything about breast cancer (thank you, pink ribbon culture), including mastectomies, reconstruction (if a woman chooses it) and other surgeries some of us are “forced” to have. Georgia writes candidly about such things on her blog too, btw. She is dealing with Lynch Syndrome and has had some tough surgeries herself.

Removing body parts is no small deal. I have so much respect for women (like Georgia) who are choosing prophylactic-type surgeries. And it doesn’t matter if they are internal or external body parts being removed. In fact, in some ways removing (or shutting down with drugs, who’s nodding her head?) certain inner organs can impact a woman’s femininity even more than a mastectomy. Ovaries, uteri or whatever parts you’re talking about, are there for a reason. They have jobs to do, even after menopause, and it’s not just being a place holder, but even that is a job too.

And it’s not just surgeries that take a toll by any means. There’s the hair (still going to do that rant post). And the lashes. And the brows. And the weight gain. And the achy joints. And the neuropathy. And the fatigue. And the chemo brain. And the diminished libido. And the fear. And the worry. And the damn brca thing. And so on and so on… Cancer treatment baggage is what it is, and there is lots of it to carry around. Some have more. Some have less. And talking about it does NOT mean I am being negative.

So yes, cancer treatment of any kind takes a toll on a woman’s femininity, at least it has on mine. To pretend otherwise would not be honest or helpful.

Still, I am lucky. Mostly because I am still NED (no evidence of disease). My issues are minuscule compared to my dear metster friends’ worries. Many of them would gladly give up whatever body part you might have in mind if it meant staying alive longer. But they understand where I’m coming from too. At least I hope they do.

I am also lucky because I have managed to keep my self-image pretty much in tact. I still feel good about myself as a person. This is probably because I don’t think body image and self-image are the same, though they are of course, intertwined.

Since my cancer diagnosis, I feel more vulnerable in a lot of ways. And I like my physical self a whole lot less. But I’m still okay with who I am as a person, though of course, I have lots of room for improvement. Who doesn’t? My self-image is still in tact. On most days anyway. My body image, not so much. But if I have to pick one over the other, I’ll pick a solid self-image.

After all, I’m still me on the inside. Well, except for those missing organs…

I’m still me in the ways that truly count. (Though I must remind myself of this daily).

And I am enough.

So are you.

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Do you sometimes feel de-feminized by cancer treatment (prophylactic stuff counts too).

Do you think self-esteem and body image are different?

How do you feel about yourself these days?

 

you are enough
Keep reminding yourself. Because it’s true.

30 thoughts on “Do You Sometimes Feel Defeminized By Cancer?

  1. Nancy, this is a great topic for discussion. And one that is often dismissed because of the “oh, be grateful you’re alive!” concept. We are disallowed to feel a certain way, as if we were machines with no sense of emotions or feelings. It’s like we aren’t allowed to be human after cancer. I agree this is BS.

    The truth is, I too feel defeminized. I had a lumpectomy with re-excision, and even though I still have my breasts, cancer treatments have impacted the way I feel about my physical appearance. It’s a combination of things for me, not just the surgery — it’s the fact that I get touched all the time by different doctors/nurses/residents (yea, yeah, I know it’s for my own good but still); the Tamoxifen drug makes me feel old with all its side effects; the fact that I can’t let my hair grow long, the way I had before dx, because I want to feel “ready”; the thought that I might not have my breasts for too long so I try not to look at them as often as I used to — other than doing self examinations, etc. There are times when I look at myself and I think, this isn’t me. I’ve also wondered if I am dramatizing my situation, because by nature, I am a worrier. I’ll have to think more about this because I want to find some level of balance.

    Like you, I still feel confident about my self image. And yes, I believe self-esteem and body image are different.

    If I lose any parts of my body, I would def. miss them. I already miss my breasts and I still have them.

    Thank you for opening up a door for discussion.

    1. Rebecca, I feel it’s a very important topic, and as you said it’s one that’s often dismissed. I have looked at myself in the mirror more than once and actually asked right out loud, who is that? I’m sorry you have so many worries and it’s totally understandable. It’s interesting, I don’t really worry about all the possible what ifs for the future. I am not a worrier by nature. At least you and I can say our self-images are basically in tact. That’s something! Thank you for sharing.

  2. Nancy & Rebecca, I too agree this is a great topic and it is so easy for people to dismiss what it does to us and as Rebecca said, they think ‘we should be grateful, to be alive’… Like we are not, seriously some comments leave me in utter amazement of the ignorance people have in relation to breast cancer!

    I had a lumpectomy and the surgeon did an amazing job, even where the lymph nodes were taken… I had chemo for 3 months, radiation 5 days a week for 6 weeks and intravenous Herceptin for a year and then the dreaded Femara, which nearly killed me with the depression, carpal tunnel, anxiety and joint pain (I only took for 5 months)…

    And l had a positive self image both physically & mentally; however these day even though physically I am back to my former weight and exercising like I use to… I don’t look the same, I have tight curls (like really tight) which I have never had before, prior to BC I had long straight hair, half way down my back and my skin has suffered and I look so much older than I use to… Prior to BC I looked 10 years younger than my age and now I look 10 years older (I am 52 now) and like Nancy said, it is not just normal aging!!! I don’t feel the same either, I no longer feel feminine, attractive (even though my wonderful man is just as attentive and understanding of my lack of libido), I only wish I could be as understanding of myself…

    I am NOT the same person I was before and I miss her, I miss the happy go lucky nature, the love of life and spontaneity that I use to have! Yes, I am grateful that so far all is good and I no longer think about it all the time but it is never far from my mind! I find myself thinking about doing loads of things now, just in case I can’t later in life!

    Thanks Nancy for bringing this topic it up, it always makes me feel a little better knowing that I am not the only one who thinks this way…

    1. Susan, I am definitely not the same person either and I miss my old self, too, sometimes. Of courses without cancer, I would still not be the same person I was, but… you know what I mean. And yes, of course, we are all grateful to be alive, but this doesn’t mean we should have our issues dismissed. I actually had a doctor say to me once something along those exact lines. Grrrr… Thank you for joining in on this discussion. Your candid sharing will help someone else. I just know it.

  3. Thank you again Nancy for opening up a frank conversation about the after effects of BC.
    I too have called my mastectomies an amputation and I don’t think that is over-stating it.
    I had phantom itching and pain for months, even years, after my breasts were removed. Not frequent, but enough to stop me short and remind myself “Oh yeah, my breasts are gone and that was a strange feeling I just had.”

    I am very grateful to be able-bodied and have no evidence of disease. I think of those with MBC often. I don’t take my health and my days for granted, but I also am not going to be silenced by the pink warrior mentality that has done more harm than good in my opinion.

    I do differ from some women, and maybe there are some like me who will read this and nod their heads in agreement. I lacked a positive self-image and body image for much of my life before my BC diagnosis at 42. Going through treatment and surgeries and facing the biggest fears I had ever faced, somehow allowed me to feel better about myself in the end. I tapped into a strength and resiliency I was only beginning to discover before my diagnosis.

    Having my breasts removed and opting to not have reconstruction was a difficult decision, but one I don’t regret. Unlike others who lost a positive body image when they lost body parts, I was different there too. Lacking a positive body image for much of my life, there was only one way for me to go and that was up. I miss my breasts, and I do sometimes feel the de-feminized aspects you write about, but I somehow ended up feeling more comfortable in my skin than I had before. I think it has something to do with self-acceptance, plenty to do with appreciating the opportunity to keep living, and a supportive and loving husband.

    That doesn’t make cancer a gift in my life, but it does make it a catalyst for change, some of which ended up being positive changes. Thanks for the open and honest discussion. Write on!

    I appreciate your words, as always, and am curious if any of your readers have had the sort of experience I have had regarding body image and self-image before and after cancer.

    1. Lisa, The way you look at your bc experience always amazes me. I agree, the experience forces us to tap into our inner selves and I also agree it proves just how resilient we are as human being. I shared a little about that in my book. It’s nice to hear someone else call her mastectomy an amputation. In all honesty, I admire women like you who opted out of reconstruction. I still don’t like my implants and I feel like I shouldn’t ‘complain’ about them. It’s interesting how you feel you have a more positive self-image and body image now. That is remarkable. But you also admit you still miss your breasts and do sometimes feel de-feminized. It’s all so complicated. I hope others who feel the same as you comment. As always, thank you for sharing your valuable insights and being part of this discussion, Lisa.

  4. I don’t know if I feel defeminized. I’m not sure that’s the right word to describe my experience. I feel desexualized. That’s first and foremost. My breasts (and I only lost one) were central to my sexuality and sexual experience with my partner. I think the other word to describe how I now feel about my body is, alien. Especially being only 2 weeks out from my DIEP flap, I’m scabbed and scarred all over again. I look at my body and it’s even less recognizable than before. I don’t think I’ll ever look at my body the same again. I’ll never feel sexy again. I can’t forsee a time when I’ll feel sexual (but I hope, for my husband’s sake, that changes). I’m not sure I’ll ever understand my body again. That is the big issue for me.

    1. Carrie, Yeah, I’m not sure it’s the right word either. It’s the word Georgia used when she asked me that question, so I went with it. And really, desexualized is pretty much the same thing isn’t it? I don’t know. And of course, I don’t feel totally defeminized, just knocked down a few notches. You have lots of recovery ahead of you, so your thoughts will evolve over time on this I’m sure. But I hear you about never looking at your body the same way. I sure don’t. How could we? Heal well and thank you for sharing. Be gentle with yourself.

  5. Nancy, it’s wonderful that you’ve openly and honestly tackled this topic. It’s a big one that effects lots of breast cancer patients. But I must comment on people saying our symptoms are just part of aging. I’ve had that said to me a couple of times when I’ve talked about the aftermath of chemo. I hate it when people say that. It’s so discounting of our experience. Not to mention that we’re talking about sudden onset of symptoms that, coincidentally, just happened to be brought on abruptly by treatment. Okay, enough of my ranting for one comment. Just glad to know I’m not the only one.

    1. Eileen, Oh that bugs me so much every time I hear that normal aging thing. I can pinpoint when all the shit hit the fan, so I know better. As do you. Once again, we are in agreement. Thank you for sharing. Rant any time.

  6. Hmm, good topic. I only had a good body image for a few minutes in my late 20s–mostly I dislike the way I look. And because I only had a lumpectomy–removal of the nipple–I don’t feel I have “the right” to bemoan it much. I opted out of recon for a variety of reasons–mostly I feel lopsided, but I like my tattoo, so I’m at peace with it.
    When I read the title of this, my first thought was that I felt de-humanized more than anything. It’s a lot of little things contributing to that. Physically, it was dehumanizing to remove my shirt everyday for radiation. Mentally/emotionally it was dehumanizing to be “lumped in” by others as “cancer patient”. I realize that gets into a whole area of “being defined by cancer” that I will someday write a post about–so I won’t ramble here. And I agree with Eileen, there is far too much dismissal of long-lasting effects as “aging”. Thanks for a thought-provoking post!

    1. CC, Your comment about having a good body image for a few minutes in your late 20s made me laugh. Sorry. I’m glad you are at peace with your tattoo now anyway. I think you’re right about that de-humanizing thing, but I think that’s a whole separate topic. I definitely felt de-humanized, too, at times…as do most patients of any sort I imagine. Thank you for reading and sharing some thoughts.

  7. Nancy,

    Oh boy, does this post resonate with me! As you know, I’ve written a number of posts on body image since cancer. Before cancer, I loved my body, and I thought my breasts were nice. I had three lumpectomies before I made the decision to get a prophylactic double amputation with reconstruction. In many ways, the lumpectomies were worse than the mastectomy because each lumpectomy deformed my breast more and more. Now, after the amputation — and yes I miss my original breasts — I can see I’m not as deformed. The surgeons did great work. But let’s face it, my breasts are fake. I don’t have implants, but skin that was on my lower belly forms the skin on my breasts. I’m grateful to my wonderful surgical team. But I will always know about what I went through and body image is a real tricky topic for me.

    When my daughter lays her head on my chest, sometimes she hits the part of my chest with a very thin layer of skin due to surgery, and I have to tell her that it hurts and she can move her head elsewhere on my chest. It angers me that even my daughter cuddling up to me reminds me of cancer.

    I want to love my body again. I’m hoping I can one day. But for now, I try not thinking about how much I dislike it. Great post, Nancy!! This is a very thought-provoking post.

    1. Beth, I remember that you’ve written about this topic too. I can’t say I loved my body before cancer, but I was comfortable in it. Now I’m not. Your experience with the lumpectomies must have been awful. It’s understandable that you feel some anger when even your cuddling time with Ari reminds you of cancer. I’m sorry. I hope one day you love your body again too. Thank you for reading and sharing about these personal things.

  8. I am forever changed by my cancer diagnosis and subsequent surgeries. I had a good body image and great hair.. When my hair fell out I always knew it would grow back hopefully the same as it was. It came in thinner and reddish not blonde. I was physically active now My body constantly aches in some part or joints hurt. The Neuropathy is painful .. In the past few months I have been diagnosed with Congestive Heart Failure, Pulmonary Hypertension which my Cardiologist believes there is a connection between Chemo and this issue. I have been hospitalized 6xs since June I currently am now taking 32 pills daily to control my hypertension and CHF. In a matter of days I can gain 20 pounds strictly by retaining fluid in my feet stomach legs. I’m not sure if defeminized is the right word, I feel broken…It has nothing to do with aging Cancer damaged me that sometimes I no longer recognize myself..
    Alli……….

    1. Alli, I am sorry you’ve had to go through all that and I’m sorry you feel broken. You’re not alone in your feelings. I hope you’re doing okay right now. Thank you for sharing. It’s good to hear from you. xx

  9. I guess in answer to your question I certainly do feel defeminized by cancer – but not by the loss of a breast. It is the loss of the ability to have a child in a society that seems to value women as mothers above all – that really makes me feel less of a woman.

    1. Marie, I would like to give you a big hug right now. Societal assumptions/expecations can be and feel quite cruel, even when we know intellecutally they aren’t true. xx

  10. After 30 my breasts grew out of proportion to the rest of me but I learned to live with it. I learned how to dress to minimize them, to look more balanced. My nipples were very sensitive and responsive during sex and led to wonderful orgasms every time we made love. Hubby and I were happy. My breasts fed my child throughout his infancy and toddler years. Then a lumpectomy changed the shape and reduced the sensitivity. But I still had the other one. Then a recurrence, second lumpectomy, and reduction killed all sensation in my nipple and left me with numbness and shooting electric shock feelings. Not very sexy. When this second round of radiation was found to be not needed, I moved ahead with a reduction for the unaffected breast. No feeling anymore in that nipple. More numbness, big scars, electric shocks, bilaterally now. No more orgasms although I keep getting told by other women that Hubby and I will figure it out. It’s been 2 months and I still haven’t had an orgasm. YES, I think cancer treatment has defeminised me, even though I still have both breasts!! …..but it’s my body and 20 years from now, I’ll have it figured out, I’m sure. Thanks for bringing up this topic; no one wants to talk about it.

    1. No one wants to say, “Cancer treatment will ruin your life, your sex life, change how you relate to the love of your life. You will never have that wonderful sexual feeling ever again. You will live, you will be disfigured, you will have reason to worry about another recurrence for the rest of your life.” They use the word “may” a lot. “Your nipple MAY become sensate”, “You MAY experience a third recurrence and it MAY be invasive or metastatic”, “You MAY develop hot flashes, joint pain that makes you feel 90 every day, dry skin, thinning vaginal walls, thinning breakable bones, blah, blah, blah…” Because of how I was talked to I had hope and expectations that turned out to be not realistic.

      1. Connie, Like I said, cancer changes things and pretty dramatically. Hopefully you can find ways to continue to build on a satisfying relationship with your partner. Be sure to bring this issue up with your doctor. There is help out there, but if you don’t bring it up, it’s likely no one else will. Sad but true.

  11. What a pertinent topic. I feel sad, angry, and proud on behalf of all of you. Yes, it’s the accelerated aging. People who don’t recognize the new me. Course, gray hair, wrinkled face with undereye shadows, weight gain, not so hip clothes to hide the changes, no bras because of pain and Truncal Lymphodema – yeah, defeminized. Thanks for addressing this. And, yeah, damn I looked great in my 20’s!! Linda

    1. Linda, It is a pertinent topic for sure. I realize I’m not getting any younger, but I know when all this stuff started. Thank you for chiming in on this topic.

  12. Nancy,

    THANK YOU for this honest post about the physical aftermath & loss of breast cancer surgery! This is an important topic that is not always addressed, and I really appreciate you openly sharing your story. Beautiful! xx

  13. Thank you for this post…..the post and some of the comments describe so much of how I am feeling. I miss everything about my old life, pre-cancer! I’m alive (and grateful for that), but so much else is gone. I was always self assured, confident and able to feel good about myself most days. Now, I feel so self-conscious, miss my sex life with my husband and not sure I will ever be the same! Thank you for putting words to my feelings and to know that I am not alone. I just had a second mastectomy for prophylactic reasons….and the fact that I could not stand the lopsidedness! Reconstruction is just not in the cards for me….I feel like I might get used to this new body, but its never going to be the same.

  14. Nancy, I really enjoy your website and reading the comments. My hair is growing back at a crazy rate, but super curly. Don’t get me wrong… I AM grateful it’s come back. Everyone says how cute it is, but I have been keeping it cropped super short because I hate it. The curls remind me of the chemo. My friends say I look great. Yeah, with make-up on and fully-clothed, not that bad. But when I look at myself in the mirror in the morning, I think “what happened to this chick who used to rock the tank tops and spiked heels?” Gotta keep one’s sense of humor as best I can. Keeping a journal has been helpful. I’m amazed at some of the stuff I wrote when I first got my diagnosis. Talk about a pity party! I’m trying to not be so hard on myself, but I sure as hell don’t feel the least bit sexy these days. I have a supportive long-term partner, but we have been basically housemates for quite awhile and the hopes that I can reverse that trend have been pretty much dashed because I have a terrible self image these days. Maybe some counseling is in order.

    1. Christine, I understand. Sometimes it seems like we walk such a fine line between gratitude and grief. Just a reminder, sharing your feelings isn’t throwing a pity party. It’s being honest. Do cut yourself some slack. I am always in favor of counseling if a person feels the need. Our emotional well-being is so important and mostly neglected during cancer chaos. Glad you have a supportive partner. Thank you for sharing. Wishing you all the best as you keep navigating through your personal cancer maze.

  15. Nancy, I really don’t miss my breasts. I am glad that the cancer is gone. And at 68 and quite overweight, my double D’s were very heavy and saggy and weighed me down. I am happy with my choice to have no reconstruction after my bilateral mastectomy. I go flat around the house and usually wear knitted knockers or other lightweight forms like microbead forms when I go out so I look normal in clothes. It is much more comfortable either way than it was before. My nipples had lost most of their sensitivity prior to the surgery anyway for some reason so clitoral stimulation has been the source of orgasms and love is a lot more than orgasms anyway. Now maybe I do miss the breasts I had at age 20 but I miss other things about being 20 too. You’re only young once. I am still going through chemo and will be glad when my hair grows back but, for now, I am rocking my turbans and scarves. I like to dress up in bright colors (LuLaRoe Perfect T’s are my current favorite way to dress because of the beautiful prints). I feel good about myself when I get dressed up. I have some dark circles under my eyes and I am sure when all my treatment is done( including 5 or more years or Arimidex) I will look older but hopefully I will still be NED, I love to do water aerobics three to five times a week here in Florida and that makes me feel strong. I enjoy my volunteer work with mothers and babies and that keep me feeling young at heart.

    1. Julia, Sounds like you are handling things your way and that is the best way, of course. I do miss my breasts. A lot. But I don’t miss my 20 year old body or self. Big difference. Good luck as you finish up chemo and beyond. Thank you for sharing.

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