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Things We Aren’t Supposed to Say About Mastectomies, Reconstruction & Breasts

June 2nd marked three years since my bilateral mastectomy. The day came and went with no one really remembering other than me. Or at least I don’t think anyone else remembered. No one said anything.

As the day progressed this year, I finally mentioned to Dear Hubby that it had now been three years. I could tell the fact I had brought it up made him uneasy. I brought it up because not sharing would have made me feel even more uneasy. It’s not like I’ll ever forget that day. I know he has not and will not ever forget either (though he doesn’t remember the exact date) for reasons of his own.

I can’t forget because the mirror doesn’t allow for that. There are a whole host of reasons that don’t allow for either of us to forget. This post isn’t about those things. At some point, I will write about some of those personal things, too, but not yet.

No, this post is about making a simple statement that I think many of us who’ve had mastectomies, and to some extent maybe even those who’ve had disfiguring lumpectomies, hesitate to make. It’s this statement:

I miss my breasts.

Sometimes it seems I’m not supposed to say this. I’m not even supposed to think it. I am supposed to have put all that behind me. I am supposed to be grateful.

For the most part, I have and I am. There is even a certain amount of guilt involved in saying or thinking such a thing.

After all, I’m alive. Shouldn’t this be enough?

Well, yes, but…

There is a lot of talk these days about mastectomies, prophylactic and otherwise. Some even say there are too many being done. In a way, having a mastectomy of any sort has almost become some weird kind of normal.

It’s not.

Along with all the discussion about mastectomies, there is lot of reconstruction talk as well. Sometimes this process is made to sound too easy and almost normal-like as well.

Again, it’s not.

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Reconstructed breasts may or may not turn out ‘lovely’, but regardless of the outcome, they are still exactly that – reconstructed. They are stand-ins for the real deal. Any woman’s originals are irreplaceable.

And if a woman chooses not to do reconstruction for whatever reason, she might be looked upon with skepticism by some and perhaps even made to feel she must explain her reasons for making the ‘radical’ choice she made.

Why is this?

Two other things that really struck me as I was thinking about this post were:

First of all, after a breast cancer diagnosis things often get rolling really fast and there isn’t time allowed or time taken to grieve for sacrificed body parts.

We need and deserve time to grieve for things we lose to illness; things like hair, breasts, ovaries or whatever it might be. It’s important to acknowledge the losses and be allowed to grieve a bit. A partner might need to grieve as well.

Secondly, even though this very blog is about breast cancer and loss and undoubtedly, I have used the word ‘breasts’ a gazillion times, I don’t think I’ve ever come right out and said, I miss my breasts.

What a strange absurdity for a breast cancer and loss blog, don’t you agree?

For some reason, there seems to be a certain amount of guilt involved when a breast cancer patient, says she misses her breasts. (And think for a minute how our partners might perhaps be unfairly scrutinized/criticized if they were to openly admit they missed their loved one’s breasts).

I do miss mine. They were nothing special as breasts go, but they were mine. I don’t think of my reconstructed ones as mine. They are still foreigners in my body. This, too, is another interesting self-revelation.

So yes, I miss the breasts I gave up to this disease and I always will. There, I finally said it! I should not have to feel guilty for thinking or saying such a thing.

Neither should you.

Stained-glass artwork in my featured photo by Laurie Bieze.

If you have had a mastectomy with or without reconstruction, do you miss your breasts?

Why do you think we sometimes feel guilty about admitting such a thing?

If your partner has had a mastectomy, do you ever admit your true feelings about it to her or to anyone?

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For more information and tips about preparing for your mastectomy, read my ebook, Facing Your Mastectomy & Making Reconstruction Decisions.

Things we aren't supposed to say about #mastectomies, #reconstruction & #breasts #breastcancer

 

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A mix of emotions on a certain day in June
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A Mix of Emotions On A Certain Day In June

Ally C

Friday 25th of September 2020

I am 10 days from my 3rd reconstruction and 5 years since my mastectomy. Having my mastectomy right after my 31st birthday was a shock. I thought I did pretty well, with a year of surgeries, but the next year it was pretty clear that my coping wouldn’t work and therapy was necessary. This reconstruction has been almost as hard as the first surgery for reconstruction. I had my other surgery in May, textured implants had been recalled, when I had a capsule contraction at my 6 week check up. That surgery was a breeze. I am not bouncing back as quickly this time. My body is more everything, tired, nauseous, dizzy, pained, etc. I usually go back and read your submission once a year or so, just to remind myself that what I feel and think is normal, and in this group of women, average. It’s nice not to be the exception and instead the rule.

Nancy

Monday 28th of September 2020

Ally, I'm glad you were able to go to therapy - though, of course, I'm sorry your situation required it. What sort of reconstruction did you have this time? It's not surprising it's taking more time to "bounce back" this time. It's a lot to go through once, much less three times. Be patient with yourself. Remember the emotional healing takes time too. All this takes quite a toll. I'm glad reading and re-reading some things here is helpful. Rest and heal well. Thank you for sharing.

Lenita Huntley

Friday 25th of September 2020

My husband stated a couple of years ago that it looked like Edward Scissors had gotten a hold of me. Today he said my breasts were ugly. I'm tired of crying.

Nancy

Monday 28th of September 2020

Lenita, Well, that was a very insensitive, downright cruel remark. I'm sorry you had to hear that. I hope you told him how hurtful his words were.

LISA

Saturday 17th of August 2019

I am so thankful that I came upon this article... the timing could not be better. I am 4 weeks post double mastectomy, and I am struggling. Which has taken me by complete surprise. I miss the old me. The one that runs in 5ks. The one who loves being outside. I miss my breasts...even though I hate them for the disease. And when I struggle I shut down and retreat into myself. The reconstruction reminds me of this every single minute. The uncomfortable tightness of the expanders. The inability to sleep on my stomach... Then I feel guilty because, hey... I am alive! I shouldn't complain or feel like this. There are many who are worse off than me. Then the nasty cycle continues.

Nancy

Monday 19th of August 2019

Lisa, Believe me, I understand. Allow yourself to grieve for the old you and yes, for your breasts. You aren't alone in your feelings. You might want to read this piece: https://nancyspoint.com/breast-cancer-is-a-string-of-losses/ Remember, your mastectomy was very recent. It takes time to process all this stuff. Be kind, patient and gentle with yourself. Hopefully, you have one or two good support people. Glad you found the article meaningful. Thank you for reading and commenting too.

Melissa

Monday 29th of April 2019

I was diagnosed with right-sided breast cancer on August 4, 2008 and underwent bilateral mastectomies with immediate TRAM flap reconstruction on November 12, 2008. I chose to have bilateral mastectomies due to the fear of possibly hearing that dreaded "C" word again in the future (as far as breast cancer is concerned). I have such a strong family history of cancer that it really terrifies me, not that it doesn't terrify any other person the same. All of the tests that we must endure prior are terrifying enough. Anyway, if I had it to do over again I definitely would not choose the route that I chose. It was the most painful thing I have ever gone through, and not only that, but also left me looking like a freak. I underwent tattooing three times, none of which really took, my abdominal incision opened up, about the size of maybe a pencil eraser, and not healed properly. It has been about 10 1/2 years since my surgery and I have an indentation where the incision opened whicj can be visible through things like a swimsuit. My husband was great during that time and would pack the home every morning before I would go to work and every night. I told the plastic surgeon how I felt about the appearance of my incision, but it was really just minimized, as though it was really not that bad and it was just in my head. I also told him about my feelings on the appearance of my breasts. When I would go in for post-op visits he would always want me to look in the mirror and I made it very clear I do not like looking in the mirror but he didn't understand why I felt that way. This man is a wonderful surgeon and a great man but I just didn't care for minimizing my feelings. There are so many emotions that I have experienced throughout these years, some positive, some negative and some indifferent.

One thing I did forget to mention is I saw another doctor at one point (a neurologist because since having my surgery I have suffered from chronic pain which began in my scapula and has since radiated to different parts of my body, which no one has ever been able to figure out. I have gone through physical therapy, steroid injections, trigger point injections, chiropractor, deep tissue massages and more, to no avail). So this neurologist, in not so many words, said that I am an anxious type person because I made such a hasty decision to choose bilateral mastectomies when I only had right-sided breast cancer. I made the choice I felt was right for me, and I'm happy I did. I was told that I had multicentric cancer which was not detected on all of the tests I had undergone.

I could go on and on but I won't. I was just so happy to have found you. It is nice to be able to talk to others who have undergone similar situations and who can truly understand what someone else is going through. I have felt so ugly and so very disfigured for years now and just wish I looked like I did before my surgery, even though I was small busted. I would much rather have what I did then than what I do now! I miss my breasts and my belly, I miss a lot from before.

Nancy

Monday 29th of April 2019

Melissa, I'm glad you found me too. Lots of us around here understand. Grieving for things you've lost due to illness is real grief too. Maybe you haven't allowed yourself to grieve "properly". Give yourself permission to do that. Thank you for sharing. My best to you.

Virgo

Sunday 24th of December 2017

I am coming to this thread late, but I have been combing throught this site since I found it two days ago. All of you are exceptionally brave for getting through your cancer journeys and sharing your stories. I am a relative newbie (3 of 6 rounds of chemo completed) - 47 yrs old, clinical 2b ICD, and just starting to figure out what surgery is right for me. I have never loved my very large breasts...I’ve spent years trying to tie them down or downplay them. I want the diseased one off for peace of mind, and I am trying to decide what to do about the other: reduce to a B or remove as well. Reconstruction for me is not even an option in my mind. I won’t go into my reasons because it’s not a judgment on any women who choose reconstruction. However, what I am noticing through this site and a few others is that overall, women are grieving the loss of their breast and reconstructed ones are not satisfying them - which is completely understandable. In order to just get through this entire process, I am trying my best to not let my brain run rampant with negative thoughts, but it’s not easy. First, I am scared... (Nancy, loved your scared Post) scared of chemo not working, scared of surgery and pain, scared of radiation, scared of long lasting chemo effects, scared of losing my sex life, scared of being sick the rest of my life, scared of dying, but mostly, scared if I leave my 8 yr old with just her dad, and scared of their financial security if I do, and scared how my daughter now has family history (no BRCA). I want my life back, but that’s not going to happen. I have no choice but to do what I can to get through this. If it means I have no breasts, for me, it is better than my worst fear of leaving my 8 yr old. Feeling are never wrong, and I realize I didn’t have my surgery yet, but I am trying to mentally prepare, so I told my dear husband that if people can go to war or get in accidents and lose limbs, sight, etc, and they can move on, then they are going to be my inspiration. Nobody wants to lose anything. I am not special. I hate cancer, but I am grateful that it is in something I don’t need to live. I know it won’t be easy, and I hope I have the strength and courage to pull this off. Thank you all for sharing your stories. You are all inspirational.