“Why I did not choose reconstruction”- by Lois Hjelmstad. Let’s talk about a different kind of awareness.
I know it’s October and you’re probably expecting a post about Pinktober or some other such thing. 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 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 so 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
Lois 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.
Lois writes a blog at http://www.loishjelmstad.com. You can email her at hjelmstd@csd.net.
Mary Ireland
Wednesday 21st of June 2023
I had a left mastectomy and a right lumpectomy at the beginning of January this year. Before I scheduled my surgery date, I had to decide for or against reconstruction.
When I called to give my decision, my nurse navigator assumed that I would choose a bilateral mastectomy and immediate reconstruction. No and no.
First of all, I was shocked enough that mastectomy was the only surgical option on the left side. I could not imagine amputating a breast that didn't need to be amputated.
Next, I knew that physical and emotional recovery from surgery would take time, and it seemed that reconstruction and possible complications could add at least another year to this already life-altering ordeal. I could not face the prospect.
Third, my pain threshhold used to be very high. At the age of 70, I have more fear of pain, particularly if there is a possibility of more, severe, even chronic, pain. What had to be done was bad enough. Was I willing to take a chance that the rest of my life would not be blighted by constant pain? No, I wasn't.
All things considered, I have never regretted my decision against reconstruction. For me, it was the right decision.
Yes, I am flat on one side. I seldom wear a bra and prosthesis at home, but I usually do when I go out. Can't make anyone self-conscious or uncomfortable, can we? Have to save them from knowledge of unpleasantness.
I have found excellent, lightweight prostheses, forms, bralettes, and camis from The Busted Tank (bustedtank.com) that are soft, comfortable, washable, AND affordable. (No, I am not a paid spokesperson, just a satisfied customer who appreciates the availability of these specialized items.)
Our natural breasts are irreplaceable but we must each decide how we will cope with our loss in a way that might help make us happy in the aftermath and recovery.
Nancy
Thursday 22nd of June 2023
Mary, Your comments are so well articulated. But your last sentence is absolutely spot on. Thank you for sharing!
Pamela
Sunday 1st of June 2014
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
Nancy
Sunday 1st of June 2014
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.
Reconstructed Breasts? | Lois Hjelmstad
Monday 8th of October 2012
[...] - like button',unescape(String(response).replace(/+/g, " "))]); }); On my birthday last week, Nancy published a guest post that I had written for her. It was an especially thing for my birthday. I [...]
Susan
Sunday 7th of October 2012
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.
Nancy
Tuesday 9th of October 2012
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.
Me
Sunday 7th of October 2012
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.
Nancy
Sunday 7th of October 2012
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.