Imflammatory Breast Cancer and Life After Mastectomy

By Ruxandra Looft

 

 

This week is Inflammatory Breast Cancer Awareness Week; a week dedicated to raising awareness for a particular type of breast cancer that is often left out of the mainstram conversation. IBC is a rare and aggressive form of breast cancer that does not present like “normal” breast cancer (in that there is no lump) and that spreads rapidly. It’s easy to miss IBC or to confuse it with a clogged duct, especially if you are a breastfeeding mom, as it makes the breast look red and swollen. That is what happened to my friend Heather, when her doctor thought the “hot spot” in her breast was a clogged duct from breastfeeding. This meant that her cancer didn’t get caught until much later than it should have been – when Heather was done breastfeeding, noticed that the “infection” had not gone away, and finally took her health concerns into her own hands and sought out a different doctor who recognized the signs for what they were. That was two years ago this October.

 

One year ago, Heather told me that she was opting out of reconstructive surgery to mask the impact left by her mastectomy. After Heather told me this, we spent many hours talking about the lack of diverse literature available to her and to other women who’ve undergone mastectomies and are considering their options post-surgery. While there is no shortage of autobiographical, medical, and sociological texts on “making the body whole” after removing a cancerous breast, less exists on the option to live life as a breast-less or one-breasted woman. The conflation of two breasts with idealized femininity and normative gender roles is so prevalent that the majority of texts written for women who have undergone mastectomies do not even acknowledge the possibility of forgoing further medical procedures meant to recreate the appearance of symmetry and a pre-surgery chest.

 

The dialogue that does exist, both in breast cancer literature and in the media, is focused predominantly on making the body appear “whole,” “sexy,” and “unmarred.” Swimsuit lines such as Veronica Brett promise to make breast cancer survivors look “sexier” than ever before. The luxury swimsuits carefully hide the missing or scarred body part with expertly placed rushing and folding of fabric. The implied message here is that surgery scars and your missing breasts are imperfections to be hidden and that beauty lies in symmetry and the illusion of perfect health. These can be achieved with the aid of carefully tailored fashion lines at best and with more risky, costly, and potentially harmful medical procedures at worst.

Offering a different perspective, artist and breast cancer educator Matuschka shocked the world when she appeared on the 1993 cover of New York Times Magazine in a white robe revealing her missing breast and mastectomy scar. The self-portrait, Beauty out of Damage, was nominated for a Pulitzer Prize the following year. But nearly a decade later, Matuschka’s image remains a rare artifact in the collection of images and words intended to empower women whose bodies that have been marked by the medical world.

Because of the lack of literature and the mostly one-sided discourse available to women post-mastectomy, I have asked Heather to share more about her experience and her decision to opt out of reconstructive surgery, something she has also writes about on her personal blog, Some Girls Prefer Carnations.

RM: You were diagnosed with inflammatory breast cancer and underwent surgery to remove the cancerous breast. In your blog, you chronicle the experience of finding out you have cancer, navigating family life and a research career with your treatment and medical procedures, and coming to terms with your body undergoing a myriad of changes.

It appears that the majority of literature on breast cancer follows the same trajectory: diagnosis, treatment, mastectomy, reconstruction, leaving little room for deviation from this path. Yet you chose to forgo that last step and to find your own path outside of the mainstream. How did you come to the decision to forego reconstructive surgery and to embrace your body as complete without the addition of a fake breast?

HA: So many factors continue to play into this decision to remain unibreasted, and it is impossible to rank what is most important.  I don’t need to replace my breast in order to be a functional woman, so why would I take the medical risks associated with replacing it?  For beauty?  Not if I believe that beauty comes from within.  Even if I cared how other people perceived my physical beauty, I have nonsurgical options for maintaining a double-breasted appearance.

Finally, one strong argument I have heard many people make for reconstructive surgery is to remain sexually attractive to their partners.  Fortunately, my partner has been very supportive of my decision to keep my body as it is especially when confronted with the information on the painful additional procedures, all in the name of aesthetics.

RM: In one post, you reveal yourself as the “proud owner of a prosthetic left breast.” Yet in the end, you abandon the prosthetic breast in favor of no prosthesis or implant. What changed your mind about the prosthetic?

HA: My motivation for procuring the prosthesis was that I had a prescription for it, and I wanted to fill the prescription before it was too late for insurance to cover the cost.  I thought it was important to own a prosthetic breast in case I ever wanted one, but I didn’t want to get stuck footing the bill at a later date.  I only tried wearing the prosthesis a handful of times early in my recovery.  It has been in a box, in a bag, under my bed, for over a year.  This is because I feel strange with a fake breast on. It’s not me.  It makes me feel artificial and superficial, which actually decreases my confidence.  Perhaps I took too long acquiring it and got too used to my unibreasted self?  Regardless of the reasons for my aversion, it is comforting to know that I have it available if I ever change my mind about it.

RM: Your post on your initial experience with the prosthetic breast reads as both raw and profoundly funny. You describe the process of selecting the prosthetic breast and of trying it on, in the end wearing it outside of the house with mixed feelings about the lack of reaction you receive.

You wrote: “And indeed I may have hidden it well.  I received no comments, but why would I?  What would someone say, regardless of if it were positive or negative?  ”Did you get a new breast?  It looks great!” or “Did you get a new breast?  Hmm, you should get your money back.””

How have the reactions you have received, have hoped for, and have found missing from those around you shaped your relationship to the prosthetic breast and your real breast(s)? In the end, how much did you find yourself relying on others (or not) when making the decisions you’ve made about your treatment and post-treatment decisions?

HA: I never thought about it before you asked this question, but perhaps the non-reaction of my friends and colleagues to my prosthesis is part of what fuels my confidence without it.  The people most important to me, with whom I interact with on a daily basis, don’t notice how many breasts I am wearing on a given day.  Then why should I trouble myself to wear or surgically implant a fake breast?  For the strangers who will see me at the market?  I don’t think so.  It seems that I have surrounded myself, both intentionally and accidentally, with good people.  My health, not my breast or lack thereof, is all that matters to all of us.  I wish that all women could be embedded in such support.     

RM: You have two young daughters who, no doubt, look up to you. How do you think your decision will shape their understanding of beauty, self-worth, and confidence as they grow up?

HA: I’ve decided that the secret is in the chin, which is not to say that you have to have a chin.  What I mean is, keep your chin up.  Be a good person, and be proud of who you are.  Breasts should have nothing to do with these things.  I don’t know the secret to having self-worth and confidence, but it seems these things can be cultivated if you keep your chin up.  I hope to teach this to my daughters. After they are old enough to stop counting and comparing how many nipples are on each of our bodies, of course.

RM: You’re currently working on turning your blog into a book. Can you tell us more about the scope of this project and why you feel it is so important for your message to reach other women?

HA: I would love to turn portions of my experience into a book.  The idea was borne out of the notion that I was suddenly a one-breasted woman in a species and culture of two-breasted women, but the breast cancer statistics suggest that there should be many one-breasted or breastless women in existence.  Where are they?  Are they hiding under fake breasts or inside baggy shirts?  I became curious about the psychology of choosing or feeling obligated to reconstruct after breast cancer.  I should say here that I think it’s wonderful that women have the option to reconstruct, but clearly it’s not for everyone and there’s no denying that it opens the door to additional health risks.  I found very little literature defining or discussing the non-reconstructed survivor community and decided to look into the book project with a friend.  We hope to present an empowering narrative woven together with cultural investigations.

RM: Thank you, Heather! 

Thanks to Heather’s family, who sought and was granted a proclamation by the governor of Iowa, this week is Inflammatory Breast Cancer Awareness Week. Learn more about inflammatory breast cancer from the Inflammatory Breast Cancer Foundation and the Inflammatory Breast Cancer Research Foundation.

 

 

Ruxandra Looft

About Ruxandra Looft

 

Ruxandra Looft is a writer and editor based in Des Moines, Iowa. Originally from Romania, she’s called Germany, Austria, and Canada her home before settling in the Midwest. She holds a PhD in German and Comparative Literature and writes about parenthood, academia, and life on two wheels on her blog Simply Bike. Find more of her writing on her website and on Twitter @Simply Bike.