PamelaKay's Story

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"Diagnosed with a particularly aggressive type of breast cancer in January 2013, I didn't have a lot of time to research reconstruction choices before my unilateral left mastectomy in February. The choices presented to me by the plastic surgeon were dismally disappointing. Yes, my left breast could be reconstructed, but it would not look anything like my remaining natural breast. Seems the only way to reconstruct a breast was to make it look like the breast of a perky 25-year-old, and nothing like my saggy 55-year-old breast. My choice, it seemed, was to look fairly normal wearing a bra (I hadn't worn a bra since I was a teenager, so not my favorite option), or to have my right breast lifted to 'match' the reconstructed one.

"Not wanting to have any more surgery than necessary (with type 2 diabetes, I don't heal well), and not wanting to lose sensation in my right breast, I chose to have immediate reconstruction on the left but leave the right whole. I could decide after the reconstruction whether or not to lift the right, but I felt it unlikely that I would choose to do so for the reasons above. So, during the mastectomy, an expander was put in. The anchor incision removed the nipple (due to the location of the cancer and a suspected affected lymph node).

"Shortly after the surgery, the stitches in the vertical incision failed, delaying my chemo by several weeks while I healed. In April, I started chemo and fills. In the course of staging for the cancer, a PET scan led to a diagnosis of thyroid cancer. After completing chemo, I was scheduled for thyroid surgery in October; the permanent implant would be put in after my recovery from that surgery, probably in December.

"In July, one fill away from completion, I developed an infection and the expander had to be removed. I was hugely relieved to be rid of the painful expander, especially as I could hardly bear the thought of living with it until December. I tabled thoughts of reconstruction until the thyroid situation was resolved.

"As the months passed, I found the thought of more surgery less and less appealing. Exhausted, and still completing my year of Herceptin, I kept putting off reconstruction. I did use the time to research other methods of reconstruction, and became interested in the Brava reconstruction with autologus fat grafting. While this appealed to me because it did not require further surgery, expander, or permanent implant, I ultimately felt I didn't want to go through the challenge of using the Brava system and the liposuction for the fat grafting, although I haven't ruled it out in the future.

"Right now, I am struggling with the lack of good options going forward. I am a very active person, practicing three different kinds of martial arts, and the thought of wearing a prosthetic just doesn't seem right for me. I need to be able to move without worry of a prosthetic slipping out of place or a heavy bra restricting my movements. Also, wearing a prosthetic never felt like the right choice for me, a person who has hated bras forever.

"Having the right breast removed is also not an option, as I do not want to lose the sensation. Also, it would be an unnecessary surgery.

"So, for the last year, I have been 'half-flat.' No reconstruction, no prosthetic. I have been hoping to make my peace with it, but so far that has not happened. Intellectually, I feel I should not have to hide my half-flat shape. Emotionally, it has not been that simple. I feel that dressing normally, so that my shape is obvious, would be jarring and distracting, like someone with a missing front tooth: it's all you can look at, even if you don't want to. I don't want my shape to be the first thing people notice about me. I work with young children, teaching them martial arts, and I think it would be difficult to explain to them.

"I am not small-breasted, so in any kind of form-fitting clothing, the missing breast is very obvious. During the winter, sweaters and scarves disguised my shape, at least enough that you couldn't tell at a glance (or, anyway, that is what I hoped). As the weather warmed in the spring, I found a lightweight, ruffled poncho and a thin vest that I wore with a scarf. Still, I was often uncomfortably warm with the layers; I never found a good solution.

"I sweltered working out at the gym in a bulky hoodie in August. At home, I must keep a sweater, scarf, or other clothing nearby all the time, in case of unexpected visitors. There are things I don't do because I can't wear a sufficient disguise, such as swimming in public and certain styles of martial arts. With my disguises, I hope most people don't notice, but sometimes I see looks or someone makes a comment that makes me wonder if I'm kidding myself about the disguise. I really don't like playing the game, but, as much as I'd like to, I simply don't feel comfortable showing my half-flat shape, even to close friends who know the situation. Once, upon realizing that a jacket I thought had given sufficient camouflage failed to actually do so, I couldn't help feeling embarrassed and uncomfortable. Now, I constantly wonder if my clothes are 'doing the job' or not.

"I am not ready for more surgeries or procedures right now; my body needs time to recover, and I'm still getting my thyroid medications right. My husband does not want me to undergo reconstruction because of the physical distress it will cause me. He's just happy I'm alive and healthy. Maybe in the future I will opt for some sort of reconstruction. Right now my shape is a source of stress and emotional distress. At some point, I hope to become more comfortable being openly half-flat, but I am not there yet."

-- PamelaKay, failed implant reconstruction

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