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“Why I Did Not Choose Reconstruction”- A Guest Post, Giveaway & Different Kind of Awareness

I know it’s October and you’re probably expecting a post about Pinktober or some other such thing.

I guess I’m feeling a bit rebellious as I decided to kick off October a bit differently.

There’s plenty of time for all that other stuff, right? Do stay tuned. Instead, I’m thrilled to share a post written by my wise new friend, Lois Tschetter Hjelmstad, in which she shares about her decision to not undergo reconstruction.

Sometimes it seems many of the awareness campaigns today are more about saving breasts than saving lives.

That’s why this post seems especially fitting right about now.

Lois writes candidly about her decision in her book, Fine Black Lines:  Reflections on Facing Cancer, Fear and Loneliness. She also shares openly and often with humor about her struggles with recovery, chronic fatigue syndrome, that whole positive attitude thing, intimacy and life in general post cancer diagnosis.

Lois doesn’t hold back and I admire her for that. She is also an amazing poet and her book contains some real gems.

So sit back and enjoy reading Lois’ words and then sign up to win a free copy of her inspiring book, Fine Black Lines:  Reflections on Facing Cancer, Fear and Loneliness

Why I Did Not Choose Reconstruction 

by Lois Tschetter Hjelmstad

I did not say “No” to reconstruction because I was happy about losing my breast. I did not say “No” because I felt sexier without it. I did not say “No” because my clothing fit so dang well after my first mastectomy.

A friend suggested that I start reconstruction during my surgery, but back in 1990 it was not commonly done and my particular doctors said I could decide later; I was only 59.

I missed my left breast mightily. I struggled for days, weeks, months to make my front look okay. I stuffed the empty side of my bra with crumpled paper; my bosom rustled. I stuffed it with socks; they lumped. I tried filling homemade bags with rice; they sagged more than my right breast.

It was a bit easier after my second mastectomy fourteen months later. Whatever I tried, at least the two sides matched. But by then, lymphedema had set into my left arm and torso—wearing a bra was not an option, although I did try. I bought a mastectomy bra and two heavy matching prostheses. I wore them once, but I was so miserable that I donated the whole contraption to another woman.

Besides, something within me rebelled at hanging an uncomfortable harness on my frame—so I could put something uncomfortable in it, so that those around me were not uncomfortable. God forbid they should be reminded of their mortality.

What to do?

Reconstruction could have been an answer. But:

  • I had had radiation therapy. My skin had become thin, tender, and glommed onto my chest. Could it stretch over an implant?
  • I had been diagnosed with chronic fatigue syndrome a year before my first mastectomy. Regaining my strength after any surgery was problematic. Was I ready to risk additional complications?
  • I had things to see, places to go, life to live. Was I willing to postpone doing so while I undertook reconstruction?

Beyond that, I knew that replacing my breasts would not reinstate their function.

New breasts would not restore an erogenous zone. They could not nourish a baby. They would only fill out my clothes and perhaps allow me to pretend that I had not had cancer. Of course, my husband could play with them, but I have other things with which he can amuse himself.

So I have not had reconstruction. (I certainly have no quarrel with any woman who has chosen differently. I deeply understand the longing.) But I simply bought stretchy camisoles, fashioned pockets from old underwear, sewed them onto the camisoles, and placed lightweight prostheses in them. It feels good to have a soft barrier between my bony chest and the world. And I can stand that small weight on my chest. I place them high and perky where they used to be, rather than resting on my belt as some of my friends’ breasts do. And I take them off at night.

Of course I miss having breasts. Even yet, when I catch a glimpse of myself in the mirror, I gasp, What the h— happened there?

My husband took a picture of my breasts before my first mastectomy.

Every so often I look at that photo and cry.

But I am not sorry that I have not had reconstruction. I have had too many surgeries as it is. My beloved husband loves me the way I am and I feel comfortable with myself, the woman who:

  • is lucky enough to have survived breast cancer for more than twenty years
  • invented her own little boobies and carriers
  • used the time and energy she could have used recovering from reconstruction to write a book, Fine Black Lines: Reflections on Facing, Fear, and Loneliness
  • had the opportunity to speak about breast cancer in all 50 United States
  • has had the privilege of meeting some of the most lovely, courageous women in the world

Yes, I’m comfortable with my decision.

For a chance to win a free copy of Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness, simply leave a comment below by noon CT, Thursday, October 4th.

NOTE:  The winner of the giveaway was Ginny Marie!! Congratulations Ginny!

Why did you choose to do or not do reconstruction?

Do you, or did you ever feel pressured to make yourself look “normal?”

Do you have regrets about any reconstruction decisions? 

About the Author

Lois Hjelmstad has written and published three award-winning books:

Fine Black Lines:  Reflections on Facing Cancer, Fear and Loneliness

The Last Violet:  Mourning My Mother, Moving Beyond Regret

This Path We Share:  Reflecting on 60 Years of Marriage

She and her husband Les have been married over 64 years. They live in Englewood, CO and have four children, thirteen grandchildren and eight great-grandchildren.

She writes a blog at http://www.loishjelmstad.com. You can email her at  hjelmstd@csd.net.

 

51 thoughts on ““Why I Did Not Choose Reconstruction”- A Guest Post, Giveaway & Different Kind of Awareness

  1. What a great post! I did choose to have reconstruction but my body said no. I had a double mastectomy with placement of tissue expanders for the first surgery. Revision of the incision line to remove dead tissue was the second surgery and then removal of the tissue expanders when infection set in. All three surgeries took place in November-December of 2010. Since then I have found a great support group and observed several women deal with the expansion of the tissue expanders and then placement of the silicone implants. I do not believe that I could have tolerated that expansion so now I deal with bras and prosthesis. While in my own home I often do without the prostheses but I do wear them when I leave the house. Yes it is done so that others are not uncomfortable. Why do we do that?

  2. Thanks for a wonderful guest post Nancy! I so appreciate Lois Hjelmstad’s spirited words. I too chose not to have reconstruction and am comfortable with that decision today, four years later. And I was only 42 when diagnosed. There are far worse things to lose than breasts.

    A couple of main reasons why I chose not to have reconstruction:
    1) I am a marathon runner and didn’t want to risk complications or chronic pain. Today it is freeing to just put on a shirt and go for a run, though the self-acceptance took some time.
    2) Nothing would replace my God-given breasts. I miss my breasts and so does my husband, but as Lois says, I still have the parts that really count. My husband certainly cares more about my life than my breasts.

    So I wear prosthetics to work and out and about some of the time. I never wear them when I exercise, and usually not at home. I go out in public flat-chested some of the time–for convenience, but also to make a statement. I am a breast cancer patient. My breasts are gone, but I’m still here living life fully. I understand Meg’s comment above–why are we concerned about other people being made to feel uncomfortable? Sometimes feeling uncomfortable leads to action and awareness…and we need more of the right kind of awareness. The breast cancer movement is about saving lives, saving breasts is secondary. Thanks for a great forum for this discussion!

    1. Lisa – I like your spirit, too. There are indeed far worse things than losing one’s breasts. Losing one’s life would be right up there. And watching my daughter struggle with the loss of her 27-year-old husband in a car accident is another.

  3. Thank you for this informative post. I am less then 48 hours away from a BMX with TE’s. I appreciate your sharing of your experience. Wishing you continued good health!

  4. I’ve been a fan of both Nancy and Lois for some time. So the two together = fabulousness! But I digress.

    When I made the decision to have a bilateral mastectomy, reconstruction was *always* part of my plan. The hard part (for me) was deciding to remove both breasts even though only one had cancer. (Final pathology revealed precancerous activity in the ‘good’ breast, so I did not second-guess myself after that.)

    I thought immediate reconstruction would jump-start my emotional healing. HA. I had tissue expanders placed at the time of BMX, so when I woke up I saw mounds instead of deformity. What I didn’t expect was the delayed healing caused by inadequate circulation. I lost my right expander, and I spent 5 months trying to disguise my one-sidedness. Often I didn’t even bother. Yes, it would have been easier to have no breasts vs. one breast.

    This week it will be one month since my permanent implant surgery. After waiting 19 long months, you would think I would have been thrilled. That was not the case. In fact, I was an emotional basket case the first 2 weeks. I’d been stuck in a suspended recon zone, unable to move on emotionally like so many women I knew who were diagnosed at the same time as me and had relatively smooth reconstructions.

    I had NO idea what I was getting myself into with implants. I naively thought it would be the easier route (vs. having DIEP, where they take tummy tissue and fashion it into a foob). And I was naive *despite* having done my research before ever stepping foot in my plastic surgeon’s office. Setbacks can’t be predicted, just as cancer cannot be predicted. It’s kinda the luck of the draw.

    Knowing what I know now, would I do it all again? Yes. Because although I’m still taken aback when I look in the mirror (and I’m still grieving the loss of sensation), I’m happy that I gave myself something back that cancer tore away. And on some level that makes me feel whole.

    Thanks for broaching this important topic!

    1. Renn – I totally support you in feeling that you have regained something that cancer tore away. I think my writing Fine Black Lines was my revenge. But I am really sorry that you had such a difficult time.

  5. I had a left mastectomy in Jan 2010 and waited a year for an elective for the right one because I would rather be with none than with one to keep reminding me. I did not choose reconstruction because I enjoy the freedom of choosing when I want to go with prostheses or not, although sometimes I wonder if I’m cheating my husband out of something. He says it doesn’t matter-but I wonder.

    1. Belinda – Sometimes I leave my camisole with the light prostheses on when we are making love. My husband can touch them and remember, if he wishes. But neither reconstuction or falsies are erogenous zones for me.

  6. I chose not to reconstruct the second time because of a bad experience the first time and having my lymphedema get out of control after the first ones were removed. I risked having my lymphedema get out of control again and that was not worth it to me.

  7. I did not want to have a mastectomy, as it turned out, I had multi-centric breast cancer with tumors in three different quadrants of my breast. I decided to have a bilateral mastectomy because I didn’t want to have reconstruction. I was very, very busty and I felt like it would have been too, too difficult to have be breast-less on one side and have a 42 DDD plus breast on the other side.

    I chose not to have reconstruction because I felt like throwing up whenever I thought about reconstruction. I had a total hip replacement about a month before my initial breast cancer diagnosis. I was thrilled with my regained physical abilities. After two years of severe pain and being unable to climb and hike, let alone walk normally, I didn’t want to have multiple operations that would leave me with non-functional breasts.

    ; I miss my breasts every day, the sensation of having breasts, but I miss them more when I wear prosthesis. I normally go flat now and don’t think about it. I made the right decision for me.

  8. I was 37 when I had my mastectomy….which was 3 years hafter having a lumpectomy and radiation in the same breast. This was a multi-focci situation, and the breast had to come off…and I discovered that I was now a Stage IV cancer patient…I couldn’t bear the thought of more surgeries. I knew that there were risks, and that it still wouldn’t be my breast. I would have no feeling in that breast and there was a risk that it wouldn’t even resemble a normal breast. At the time, the reconstruction available would mean taking muscle tissue from my back or from my abdomen…and I knew how important those muselces were for us to walk correctly and to function on the physical level I did with a 4 year old child, a large garden and just how I generally lived my life.

    I am sometimes surprised by my reaction to my scars. They are many. It rather looks like I have tangled with a bear, rather than a crab. Some of my scars from the lumpectomy are there, my chest sinks in, and of course, there are scars from the drains and the mastectomy itself.

    I tell myself these are the marks of courage. As time has gone on, I’m now 52, I don’t even think about it much…and I even don’t think about changing in public YMCA changing rooms….

    Breasts are not me, even though I was graciously endowed. So I lost a breast. I still have a brain.

    Reconstruction or not is a personal issue, there is no right nor wrong answer, just what is right for us.

  9. I already knew what I would look like after mastectomy since my mom had a mastectomy with no reconstruction when I was 14. I was used to seeing her with only one breast since she didn’t always wear her prosthesis. She had already done all the leg work; she knew where to take me to be fitted for my first breast form and my new bras.

    I have asked my husband if he would like me to have reconstruction (we met after my mastectomy) but he says it doesn’t matter to him. If I want to do it, he will support me, but I should do it for me.

    After 16 years, I am very comfortable with the way I look! I don’t think reconstruction is in the future for me unless I have a recurrence in the other breast, and then maybe I’ll think about that option again.

    1. Thanks for sharing, Ginny Marie. It was handy that your mom knew just what to do, but I feel sad that you had to learn how to live with only one breast from your mother and that she had to help you find breast forms.

  10. I did do reconstruction of my left breast after mastectomy with expander placed at time of mastectomy and exchanged for silicon implant 5 months later after chemotherapy. Would I do it again? I don’t know. The implant is not perfect. It isn’t always comfortable. If I ever get BC in my other breast and have to have a mastecctomy, I probably won’t do reconstruction and will have the existing implant removed.

    Loved your cleverness in being creative in making your clothing work for you.

  11. Thanks for the great article. You book sounds wonderful. I too decided against reconstruction, for a lot of the same reasons as you did, I keep considering a prophylactic mastectomy on the other side, but just don’t want another surgery. I’m tooooo tired. I hoped that by some rare chance our library had a copy of your book, but, alas, they don’t. Thanks again for the great article. God Bless you, Linda

  12. ….and, I hit enter before I was done. It’s great to see articles by people that haven’t had reconstruction, it seems that most of the articles about the issue of Reconstruction – Yes or No, are written by those that have either had reconstruction, or doctors that do reconstruction.

    Linda

    1. Thanks for sharing, Linda. I’m sorry you couldn’t find Fine Black Lines. It is available at amazon.com and loishjelmstad.com. However, currently I am working on an ebook edition. It will be less expensive. Follow me on twitter @LoisHjelmstad. I will post when the book is available. I’m not so great at keeping up with twitter, but I try!

  13. Great post and I loved your comment about how you have created clothing adaptions that work so well for you.

    I had and implant expander placed at the time time of my left breast mastectomy. I got the permanent one 5 months later after chemo.

    If I ever need to have my right breast removed, I’ll have the left implant taken out. It is just not that comfortable and I’m aware of it all the time.

  14. I did reconstruction. Had asked for B-cups. Got DDs. Male surgeon. Having lived with debilitating nerve pain since (finally completed in 2010) I would have made a different choice, if I had known. Always the question: “what to do with these things? Did I do it for me? Partly. Mostly for husband, daughters and son. Their discomfort through it all was palpable. Today, I could live with that. Next time (goddess-forbid) I will opt for a lotus or Eye of Sauron tattoo. 🙂

  15. As a woman who had a bilateral mastectomy without reconstruction 12 years ago, this post really resonates with me.

    I have found it far more comfortable to go without a prosthesis and let others deal with the odd discomfort my missing breasts might cause. I too find it absurd that breast cancer “awareness” is so often presented as saving breasts rather than saving lives. When I see callous slogans to this effect on shirts at fundraisers or on bumper stickers the insensitivity and stupidity it represents make me ponder if there is any hope of real awareness about this deadly disease out there.

    The sexualization of this disease has set the bar so low that little meaningful progress has been made to erradicate it.

    Thank you so much for speaking up.

    1. Thank you, Marjorie. I hope you (and all the rest of you) have seen Nancy’s post today. Very cogent on this subject you’ve brought up. I can’t believe how obsessed we are with breasts. I walk down the street and wonder what oracle decreed that we have to see cleavage and more everywhere.

    2. Marjorie:I’m having a left mastectomy in 16 days. Everyday, I change my mind about what kind of surgery/reconstruction I should have. A girl(32y/o) at work said, “Katie, what if you meet a great guy?” She thinks I should get implants. I responded with,”Well, I hope he’s not a boob man.” I would never make a decision based on what someone else would think. I appreciate your post a lot. You have answered the question I wanted an answer to:Was there anything you wish you would’ve done differently?( In regard to reconstruction.) I like to believe that I’m the kind of woman that can go flat and be comfortable with that. We’ll see how that goes. Thank you everyone for sharing:) It means so much to me as a newly diagnosed member of this club that none of us hoped we’d be a part of.

      1. Katers, I’m so glad you read Lois’ post and also Marjorie’s comment. I completely agree that you should never make a decision based on what someone else might think. Good luck with things! Keep us posted.

  16. I had my 1st surgery in 96′ and 1 yr to the day I went back to surgeon and told him he didn’t finish with his work. If I couldn’t have both I didn’t want the other either. I was a 38EEE and it was like having a one-eyed monster. I like B-Flat.

  17. What a wonderful post – thank you so much Nancy and Lois! I could so identify with the experimenting with socks though I never tried the rice – I should have done!!

    I have written in the past on my blog about why I have not chosen reconstruction, and in fact how I would rather “deconstruct” the odd side. (https://feistybluegeckofightsback.wordpress.com/2012/09/09/assault-on-twang-arm/#comment-2772)

    I hate being so lopsided, but I can’t face the thought of more, major surgery. And not being able to swim daily.

    But…… I left my swimming prosthesis in the shower cubicle at the pool I use and that almost made me consider reconstruction!!! Almost.

  18. What a wonderful group of comments! I so appreciated reading them and replying. If I missed anyone, I am indeed sorry. It was my privilege to do this guest post and I am grateful that it elicitated these great responses.

    I love you all and am delighted to be part of this community.

  19. I chose not to reconstruct with the first MX in Nov. 2009. But when I went back for the second a year later I decided on the DIEP Flap transfer. What a huge disaster…left flap failed, abdomen opened and got infected….4 months home with nursing care. So now I have one “man made” half done boob and nothing on the other side…..what a stupid thing to do. I should have just removed the second and moved on with life.

    1. Nancy, I’m sorry to hear things didn’t go well. Sometimes complications do come up as you know all to well. Keep talking with your doctors about where to go from here. Thank you for sharing about your situation. My best.

      1. I would like to thank everyone for the great discussion and thank you, Lois, for your wonderful book. Ginny Marie won the giveaway. I announced the winner on Facebook, but thought I should here as well as not everyone uses Facebook. Thank you to all who participated!! Congratulations Ginny Marie!!

  20. Your messages are inspiring … and anyone out there looking for further inspiration should visit the web site of Linda Morin, who lives in Ottawa, Canada. On Oct. 1, Linda, a double mastectomy survivor, published her book “The Courage to Look Beyond.”

    Like most women who lose one or both breasts, Linda was ashamed of her body and could not look at herself in the mirror, let alone be seen naked by a partner. The turning point for her occurred in January 2010 at the Hippocrates Health Institute in West Palm Beach, Florida. While being examined by a doctor in front of 75 people, she lifted her top and showed the crowd her body.

    Jaws dropped and audience members praised Morin for her courage. At that point, her life took a positive turn. She realized that she was still attractive and whole despite losing her breasts; she embraced her body, and soon began helping other women scarred by cancer and other diseases.

    Linda’s web site is: http://www.lindamorin.ca It’s work a look.

  21. I had a bilateral with lymph node dissection on both sides and chose not to get reconstruction because I didn’t want anything in the way of radiation treatment and wanted to be able to feel for a recurrence. I was so beaten by chemo that I don’t think I could have survived DIEP reconstruction and implants were not an option. I miss my breasts, terribly, and apparently my husband does as well. I hate what breast cancer has done to me. I have constant, relentless pain, Lymphedema, am depressed, and feel mutilated. “Oh, but I’m still alive.” Ugh.

    1. Me, I’m sorry for all you have been dealing with and still are. It’s a lot. I understand the reasons for your decision not to do reconstruction. And of course, you miss your breasts and feel the way you do. I had reconstruction but still, I miss mine. Please speak with your doctors about your depression. Your mental well-being is vitally important. I also hope your pain issues are being adequately addressed. My best and do keep me posted.

  22. Thank you Nancy and Lois for this great post. I also had my birthday on Oct 1 like you Lois! I opted for a bilateral mastectomy with reconstruction but was not told before that because I had a radiated breast it was going to be a big problem. I ended up doing the tissue expanders and implants twice plus two other surgeries to correct the problems and it was with three different plastic surgeons. The second surgeon made my the most angry because he kept telling me to wait for the FDA to approve the “gummy bear implants.” The FDA never approved them and his lat flap failed miserably on my radiated breast. The last surgeon was awesome and she really did a beautiful job fixing the botched job from the other surgeons. For me because I was much younger and I wanted reconstruction, but telling what I have been through I can really understand why so many of you skipped it. It’s a personal choice. Like all of you said the most important thing is that we are alive.

    1. Susan, It sounds like you’ve been through a lot. You’re right, it’s a personal decision. I don’t believe the decision is merely age related, there’s more to it that that. Many younger women opt out as well. Ever person and every situation is unique. Thanks for sharing.

  23. I go for my left breast mastectomy on tues, have radioactive on tues, for lymph nodes and mastectomy on we’d, thank you for sharing, I have opted for no restructuion for many of the same reasons as mentioned before, right now I am fantasizing myself in front of the mirror, one loaded the other not, I must remember to turn to my best side for pics, I hope I am blessed with an uneventful healing and that my nerves and lymph flourish

    1. Pamela, You are facing a lot and it will not be easy, but you will get through it because you must. I’m glad you are making the best decision for you regarding opting out of reconstruction. Good luck with things. Keep me posted. Heal well.

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