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

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

Things we aren’t supposed to say…

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

As the day progressed, I finally mentioned it to Dear Hubby. I could tell that just the fact I brought it up made him uncomfortable.

I brought it up because not doing so would have made me even more uncomfortable.

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 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’m supposed to just be grateful now and move on.

For the most part, I have and I am.

There’s even a certain amount of guilt involved in saying that I miss the old me.

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.

You might want to read, Breast Cancer Is a String of Losses.

Secondly, even though this 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. A lot. They were nothing special as breasts go, but they were mine. I don’t think of my reconstructed ones as mine. 

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?

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

What is something specific about the old you that you miss?

Do you ever feel there are things you shouldn’t say or mention, regarding your cancer experience?

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For more information and tips about preparing for your mastectomy, read my eBook, Facing Your Mastectomy & Making Reconstruction Decisions. You can download and read it for FREE via my Resource Library.

You might want to read a poem I wrote called: I Miss Them.

How do you even start to emerge from a cancer diagnosis, loss, the pandemic, or any trauma? #cancer #grief #petloss #pandemic #trauma #womenshealth #familyrelationships

I wrote about mastectomies, lumpectomies, breast reconstruction, and other things that need to be said in my book, EMERGING, available on Amazon and most other online book sellers.

Sometimes, it seems like there are things we aren't supposed to say, or even think about. #breastcancer #mastectomy #womenshealth #breastreconstruction  #yourhardmatterstoo

Chantelle

Sunday 13th of August 2023

Thank you for saying all of this & sharing your experiences. I just went through ph. 1- dbl. masectomy, expanders, 2 drains still in place (surgery was on 7/28, I was diagnosed on 6/13). I have had several people discuss the “new boobs” already. I have to have my stomach (phase 2) in Dec., so many emotions. Lots to process. I’m upset, angry, and well… all of the above. My marriage has changed in ways I can’t explain. I feel helpless. I’m on an endless emotional journey. Thank you to all who are sharing theirs

Nancy

Monday 21st of August 2023

Chantelle, You've been through, and are still going through, a lot. Believe me, I get it. So many emotions to process, and there is a lot of loss and, therefore, grief to deal with. Your feelings are normal, and you are not alone. It's hard, but things will get better. Breast cancer is indeed a string of losses. You might want to read this post: https://nancyspoint.com/breast-cancer-is-a-string-of-losses/ Thank you for sharing. My best to you as you rest, heal, and continue to process what you're going through.

Marisa

Wednesday 10th of May 2023

I had a dmx with explanders then to implant in 2020 What a nightmare! As if 2020 wasn’t bad enough! So 3 years later I had to explant as those implants were causing me so many problems! I now am recovering from diep flap oh this is quite the recovery! But I think I’m glad I did it! I will know for sure after phase 2 as they aren’t the prettiest to look at now….

Stacey Schiff

Wednesday 15th of February 2023

I really feel validated by your blogs/articles and wanted to express my appreciation for your sharing your feelings and thoughts around these topics that are so often not addressed.

A few months ago I began physical therapy for a non-breast cancer related issue. And, during our intake I did mention to my new PT that I had a double mastectomy in 2016. I tend to disclose this fact whenever I am working with a health care practitioner for the first time, for various reasons. First and foremost because this is a major life / physical body changing surgery that impacts me physically in various ways- even seven years later. I also share this with a doctor before they are going to examine me or a massage therapist before a massage. I feel it is appropriate to offer the provider with this “heads up” as my chest has scars where there were once natural breasts and even though I have had some reconstruction I do not have nipples. I think about the individual/provider who is meeting me for the first time recognizing that I do not know their personal history with breast cancer. They may be a survivor or have a parent, sibling, partner etc who has had a double mastectomy. Perhaps seeing my chest without any warning that it doesn’t look like the chest of a woman who has not had a mastectomy but yet the opposite can be a useful information to have in advance. In my mind I have been offering this information out of respect for others knowing it might be triggering to see my scars without any warning. As well as it maybe offering me a sense of control. I am sharing this fact first rather then just undressing and allowing it to be silently be “there”. I guess it offers me a feeling like I am providing my consent to inform … maybe it makes me feel more comfortable… for multiple reasons some I am conscious of and perhaps some I am not even consciously aware of.

After the PT and I had been working together for a number of months we were discussing the fact that the implants used for my reconstruction are linked to BIA-ALCL. I will be explanting and not replacing with new implants but instead having a DIEP flap reconstruction surgery. Therefore, I will soon have both the scars on my chest as well as new scars on my newly reconstructed chest and one large scar across my abdomen. I am sharing this with my PT as I had some questions about the scar tissue and how the abdominal surgery / scar tissue might impact the work I am currently doing which requires that I strengthen my core/stomach muscles.

At the end of a session in the midst of these conversations one day the therapist asked me if I see my identity being strongly linked to my having had breast cancer? And, I honestly I had not see myself as putting breast cancer survivor at the very top of how I would identify myself / describe who I am. I am a great deal more than the breast cancer I had and treatment needed to survive the cancer. And I have often discussed many other aspects of my life and who I am and what I care about and what I do with this PT - my role as a mother of both a canine and human child, a wife, a clinical social worker/psychotherapist, etc. and, I am a breast cancer survivor and an individual who has had parts of her body amputated and will have to go on to have additional surgeries that will change my physical body and my life experience.

The PT was alluding to the idea that I over-identify with having had breast cancer. (And his comment was made with good intentions not meant to hurt or criticize me.) I wonder if the information I share / lead with … in specific situations when I am receiving therapy or medical attention that involves my chest and upper body is indicating that I am “stuck” on my having had breast cancer and it is more of my identity then I realize …

Nancy

Friday 17th of February 2023

Stacey, I appreciate your thought-provoking comment. There's a lot in there. I think the fact that you share about your scars when meeting a new doctor, therapist, or whomever, is you being mindful that others might be triggered or taken by surprise or whatever. I don't see it as being "stuck" or that breast cancer defines your identity. It also wouldn't be "wrong" if you did consider your bc experience to be strongly linked to your identity. I mean, it's a life-altering thing to go through and there is no over and done date. This doesn't mean you're stuck or that bc defines you. It's one piece of who are now are. I forewarned my dermatologist before my exam as my scars are numerous. She didn't say anything, but I'm sure she took notice. We all incorporate all our experiences into the continuum that is our lives. I address this a bit in my new book, Emerging. Good luck with your DIEP surgery. I had it not too long ago. Hoping all goes smoothly for you. It went better for me than I had anticipated. Thank you for sharing your thoughts.

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.