My Prophylactic Mastectomy: Don't Judge Me

Just look at it a while...

By now, everyone's heard about Angelina Jolie’s prophylactic mastectomy due to her BRCA 1 genetic status. And before that, Giuliana Rancic, and before that, Kristina Applegate. A whole host of beautiful young women who faced difficult choices and made a brave decision. Their career successes had been bolstered in no small part by their sex appeal. So going public with their mastectomies - their second brave decision - exposed them to risks they didn’t have to take. Hats off to them for valuing the opportunity to educate other women more than their own careers and egos.

Portrait in the "1850s House"
State Museum on Jackson Square

Then along came Melissa Etheridge, heroine to so many breast cancer survivors and writer/singer of the inspiring, tear-jerking, goose bump-inducing ballad played at many a breast cancer fundraising event, “I Run for Life.” She called Jolie’s prophylactic surgery, “the most fearful choice you could make when confronting anything with cancer,” adding that Jolie could just have changed her diet to prevent cancer. Say what?! Jolie’s husband countered that he found the decision “empowering instead of scary…the exact opposite of fear.” A couple of days ago, Etheridge responded, “Your own personal health is your own personal choice, all the way down the line.” Great. But it doesn’t sound like she’s budged from her original judgmental attitude.

The fact that Etheridge is a breast cancer survivor makes it especially hard to understand. I’m not judging her, mind you  :-) I just don’t get it. You’d think she’d walked enough in the other man’s moccasins - maybe not Jolie’s size exactly, but close enough. You’d think she’d understand that when dealing with the breast cancer beast, everyone has a right to do what they feel they need to do without being judged.

If  you were mauled by a grizzly bear - or saw your own mother in its teeth - is it really so hard to understand that you wouldn’t ever want to be in grizzly territory again? Even if your chances of ever seeing another bear might be only 10 percent (it was something like 30% in my particular case), it would be understandable, but especially so if you’re like Jolie, with a grizzly bear camping by your front door.

It comes down to a game of probabilities I’d rather not play - I don’t like casinos. Because my type of cancer was not well understood, I didn’t have reliable statistics to work with, like Jolie had. And while I would never trade my largely unknown brand of breast cancer for Jolie’s, I do envy the knowledge-base BRCA pre-vivors have to judge their risk prior to making the difficult decision. For me, Jolie’s choice was a no-brainer. The numbers were hideously against her. Eighty-seven percent chance of a highly aggressive form of breast cancer. Change my diet, as Etheridge suggests, then deal me the cards? Hell no! Damn the torpedoes!

One piece of information I did have, that Jolie didn’t, was what it felt like to hear, “You have breast cancer.” No one should ever have to hear those words once, let alone a second or third time. Making it out of that grizzly’s mouth alive once was darned lucky. More luck than I probably deserved in one lifetime. I’m taking my winnings and going home, thank you. Also, I’d already gone through one mastectomy - and a great reconstruction - several years prior to the prophylactic one. I knew that with my recon surgeon, disfigurement would not be in my cards. I doubt she felt so sure.

Yep, prophylactic mastectomy is all over the news these days. Google “prophylactic,” and “mastectomy” appears as the second search word. I’m glad it’s in the spotlight. When my great aunt Alice was diagnosed and underwent a mastectomy back in the 1960s, it was literally only whispered about in my family. These days we can talk about almost anything. And maybe, someday, people won’t be so judgmental.

Choosing Your Breast Reconstruction Surgeon

When I learned my breast cancer treatment would require a mastectomy, my process for choosing a reconstruction technique and surgeon was one hundred percent wrong! But geez, what did I know? Plus, I was in shock mode. And I was also in do-whatever-the- doctor-tells-me mode. I've previously written, been written about and spoken of the reconstruction road I stumbled along. htttp://www.cnn.com/2009/HEALTH/10/24/breast.cancer.options/index.html#cnnSTCText

My breast reconstruction experiences – good and bad – turned me into an activist. A reluctant activist, since I'd kept the whole breast cancer thing hush-hush for a long time, even from my own mother. But later I was so appalled at my own ignorance (I have always taken pride in being an intelligent, well-informed woman) that I wanted to help spare other women my own naivety and poor choices that easily might have landed me in a very deep pothole.

Since then, I've heard stories from countless other women who also made reconstruction decisions under pressure, with little information, and with little reason to doubt the doctors they trusted. Most of them weren't saved by a last minute quirk of fate, like I was. Many, after suffering from choices based on incomplete or inaccurate information, got another chance at reconstruction to correct issues caused by their initial surgeries. Unfortunately for some, the damage from surgeons with inadequate experience or using outmoded techniques, left them with problems that can never be repaired. 

Breast reconstruction is not the same as breast augmentation and requires a much higher degree of experience to obtain the very best outcome. If you're going to go through two or more surgeries to have breast reconstruction, you want the very best aesthetic result for your effort. Make sure you choose a highly-experienced and artistic surgeon who has the absolute lowest rate of complications.

Study up on current methods of breast reconstruction before you make your choice, especially if that choice is irreversible, like one that compromises muscles in your body. Don't rely only on the advice of the plastic surgeon who happens to live in your area. Like it or not, he/she has a vested interest in your choosing him/her as your surgeon and, ergo, the reconstructive technique in which they happened to be trained.

After you select your preferred method of reconstruction, seek the opinions of several surgeons certified by the American Board of Plastic Surgery who have extensive experience in those procedures. Not only will you increase your probability of successful results, but you'll also reduce the likelihood they may discourage you from your choice or mistakenly believe you're not a candidate for that surgery. Ask about their success rate and how many of the procedures they have performed. Highly experienced doctors who specialize in the reconstruction you want will give you the best evaluation of your unique situation.

Be assertive. Ask all the questions you need to make an informed opinion. Many people feel intimidated by doctors and are hesitant to ask too many questions. If you're like this, get over it now! Make a list beforehand, bring someone with you and give them a copy, too. They can help you if your courage flags or you feel overwhelmed, as well as provide another brain to process what you're told. Write down the answers to your questions and check off each, only after you're satisfied with the response.

Ask to view before and after photos of the surgeons' work. Since these photos are usually taken within a few months of surgery, be aware that scars and areola tattoos will appear much more prominent than they will be after more time has passed. Instead, focus on the shape of the breasts, symmetry, and the artistry of the surgeon.

Ask for patient references. Many women are happy to talk to others about what to expect and may even offer to show you their results in person. The most experienced surgeons usually have patients who volunteer to mentor newly-diagnosed women as a way to give back after successful treatment and reconstruction.

Surgical oncologists are specially trained in removing cancerous tissues, although your mastectomy surgery may be performed by a breast surgeon or general surgeon. The surgeon removing the cancer should work in cooperation with the plastic surgeon you choose. If there is a breast diagnostic center in your area, it may have a list of surgeons and will schedule consultations for you.

If there is not a surgeon in your area experienced with the reconstruction method you prefer, know that many women travel to access surgeons who are. Their clinics may help with travel arrangements, as well as dealing directly with insurance companies regarding out-of-network patients. Preliminary consultations can occur by phone, and openings in surgical schedules are maintained for women needing surgery in a timely manner. Some cities offer low or no-cost accommodations for cancer patients, as do some airlines.

Good luck, and may your road to new breasts be well-paved!

(A special thank you to Sandy Keller, a co-founder of Breastoration, who contributed to this post.)

Sharing Our Reconstructed Breasts or I'm Too Sexy for my Shirt

The first time I exposed myself was only four days after I returned home from New Orleans from my breast reconstruction surgery. I sat in church, listening to Handel’s Hallelujah Chorus sung by the Minnesota Center Chorale. One of my dearest old friends was a member of that choir. She was also a breast cancer survivor whose diagnosis had preceded mine by two years. Her treatment included bilateral mastectomy, and her doctor had recommended against immediate reconstruction. But now, enough time had passed that she was considering it, and she waited anxiously to see my results.

We made eye contact during the performance, and I cupped my new breast and bounced it for effect. She managed to contain her laughter and continue singing until intermission, when she and I quickly converged in the narthex of the church and made a bee-line for the bathroom. We squeezed into one stall for the unveiling. This was to be my first of many experiences of the oohing and ahhing that my breasts would come to elicit. It was also the first time I felt such compulsion to show them off. Only later did I understand I was not alone.

Now I don’t know if a similar phenomenon occurs among all women happy with their breast reconstruction results. Perhaps it's just those of us who have had autologous flap reconstruction using our own abdominal or gluteal or hip fat or wherever else docs are harvesting fat from these days (if abdominal, we also get to show off our flat stomachs). Actually, now that I think back, I do recall an implant gal among the contingent once. BTW, she had beautiful results.


I'm not the type of person who ever did anything like this before. The root of this new flashing compulsion is my desire to share the good news about the miraculous reconstruction outcomes possible for breast cancer survivors these days. I don’t know why the news has been so slow in getting out. Maybe the other advances in breast cancer treatment take precedence in the media or maybe the media still haven't been adequately informed -- despite our best efforts -- or maybe they think women aren’t interested. Duh! My experience is that women are really interested! And not only that -- they have a right to know!

I’ve participated in shows-and-tells with women who have never even had breast cancer, but were so thankful to me for helping alleviate one of their many fears about it -- disfigurement. Sometimes it’s been women who are contemplating  prophylactic surgery due to high genetic risk and want a first-hand look at (and sometimes feel of) state-of-the-art breast reconstruction. Or sometimes it’s been women who’d previously opted out of reconstruction or who have had poor outcomes and are hoping for something better. And sometimes it’s been between fellow breast cancer survivors and recon sisters who share the same intense interest in and appreciation for this life-affirming surgery.

Picture sitting in a restaurant at a table full of very attractive women (maybe it’s courage and a newfound zest for life forming a glowing aura around them). All have their cancer stories. But for most, the negative is behind them now. Reclaiming their bodies is the positive part of treatment. Even if these women have never met in person before, they feel they know each other more intimately than other women they have known for years. No one else really understands what they’ve been through like the other women around this table. So there are lots of smiles, conversation and laughter. Sometimes even a little too loud for the restaurant.


At some point, a couple of the women disappear into the bathroom, and someone says, “Hey, are they having a show-and-tell in there?” And pretty soon the whole table empties. Once, I participated in a show-and-tell on the Steamboat Natchez in New Orleans, during their jazz cruise. Some of us had been in the bathroom for quite a while. One of the gal’s cell phones rang. It was her husband informing her that the boat had long since docked. He and the other husbands were already on dry land, waiting. Sure enough, we exited the bathroom to find the deck deserted. Ever after, we referred to that ship as the “Show Boat.”

To be honest, I know another reason I feel compelled to share my breasts with women who haven't had breast cancer is that I don’t want anyone feeling sorry for me and the collateral damage they assume I suffered. In fact, I’d like them to see that my body looks great. Maybe even better than theirs. Just sayin’ . . . :-)

Hallelujah! Hallelujah! Hal-laaaaaaay-loooo-yaaaaah!

On Her Way or Laissez Les Bon Temps Rouler!

In my December blog post, Ready to be Restored, I introduced you to Wendy, the young mother diagnosed with breast cancer, who’d undergone a mastectomy after extensive chemotherapy to shrink her tumor. When I spoke with her recently, her husband was laying new tile left over from the repairs they’d had to make to their home following Hurricane Isaac. Water had buckled flooring and caused paint to peel.

Likewise, Wendy is in repair/recovery mode after the first stage of her breast reconstruction. She underwent a DIEP flap procedure to rebuild her left breast, as well as to “re-stuff” (that’s the way I like to think of skin-sparing mastectomy followed by recon) her right breast. She had this to report about her surgeon and surgery: “He did an amazing job. It healed beautifully. I was blessed. I’m feeling self-confident. I’ve bought new bras. I’m wearing tops I’d dismissed before. I’m feeling good and looking forward to the next surgery. I’m excited about it!” Wendy’s second stage of reconstruction is about a month away. She hopes to recover in time to enjoy summer with her husband and very active 8-year-old.

In surviving all she has, Wendy has acquired wisdom beyond her years. “Here’s how I got tough,” she said. “I was 33, went to the gynecologist every 6 months, had my breasts checked, my pap smears, kept up on my health. When I went for my check-up near the end of 2010, I told him my breast felt a little different to me, like something was changing, sometimes some pain, nothing obvious. I wanted a mammogram.

“He blew me off. The only person in my family who’d had breast cancer was an aunt, 58. Nobody in their 30s.  He said I was too young for breast cancer, and a mammogram wasn’t necessary. I walked out of there thinking everything was fine, that I should stop worrying and just get on with my life.



“A couple months later, I had more pain. I went back to the doctor, and I said, ‘It hurts me and I want it checked.’ Even though he told me again that I didn’t need a mammogram, he finally ordered the test. It wasn’t good. Twenty-eight of 35 nodes positive. So I don’t take the first answer of ‘Okay, don’t worry.' I stay on top of everything now. I ask questions if I don’t like the answers. I wouldn’t be here right now if I’d taken that doctor’s advice.”

In keeping with her tough new resolve, Wendy researched breast reconstruction extensively. But after what she’d already gone through, she found herself overwhelmed by the information, the idea of more surgery, the costs. Then she attended the convention of the Young Survivors Coalition where she met other young women who’d had similar experiences, including having doctors who dismissed their concerns.

At that same convention, she was finally able to choose the surgeon she wanted for her reconstruction, after seeing his presentation. “It was time to get my body fixed." And in spite of her experience with her gynecologist, she’s been able to relax her guard with her new surgeon. “I go to him now and have complete trust. I say, ‘Do whatever you think is best.’ He’s done thousands, of all different ages and body types. I know he knows what he’s talking about.”

And for anyone who’s lost focus - or never had it - on what’s important in life, Wendy’s battle with cancer taught her that, too. “I’m not glad it happened. But it’s given me a whole new perspective. I get aggravated sometimes by people complaining about their problems, especially older people who have seen their kids grow up, graduate, seen grandbabies born. I want to say, ‘Well you have your health. Other things - you can fix that. You can get another job.’ I want to see my kid’s graduation. I don’t care how big my house is. I just want to be here. Living.”

Stay tuned for Wendy’s next update post-phase 2 reconstruction. Here’s hoping she has another uneventful recovery in plenty of time to enjoy long sultry summer days with her family.

The Lasting Trauma of Breast Cancer or It’s My Party and I'll Cry if I Want to

I had a strange experience a couple weeks ago, following an appointment with my dermatologist. It happened to be my birthday, which I communicated to him, kidding/hinting that it would sure be great if they gave out freebies in honor of such occasions.
 “Is it really your birthday?“ he asked.
 “No,” I replied. “I just lie about it to get free stuff.” (I don’t usually engage in smart-alecky repartee with doctors, but this guy has a sarcastic sense of humor).

He asked if I had a half hour to spare, then escorted me down the hall to the “spa” room where a beautiful blonde medical aesthetician awaited me for a free birthday facial! Wow! What followed was a variety of various high-tech procedures involving facial cleansing, exfoliation, micro-current and gentle waves LED treatments, and other stuff I don’t remember the names of, all accompanied by heavenly-smelling concoctions from plants growing above and below the sea.

For the finale, she stood behind the reclined chair where I lay totally at peace, free from pain or worry, and began a gentle facial massage. I thought I was already as serene as I could be, but her soothing fingers took my tranquility to another level. I was overcome with an unusually strong sense of being cared for, as well as a feeling of emotional release and a sudden urge to cry. I knew immediately that this was, somehow, related to the breast cancer.

Of course, I held back the tears. Maintained my control. I made it through the conclusion of the session with a broad smile. I profusely thanked the doc and crew, rode the elevator down to the lobby, out the glass doors, through the parking lot to my car, settled myself behind the steering wheel, buckled my seatbelt, and began to sob. I continued like that for a long time.

Later, after some research, including talking to my husband - a clinical psychologist - and one of his colleagues, I found that my experience was not an uncommon one. Especially for victims of trauma. What was my trauma? Breast cancer.

Turns out massage therapy frequently elicits responses such as mine. The theory is that repressed emotions can be held in our bodies. Massage may bring them to the surface. This is probably due to a combination of the physical manipulation and being in a safe, nurturing environment. It’s somewhat similar to the emotional release we might experience when a friend reaches out to us - taking our hand or giving us a hug during a time when we have all we can do to keep standing.

Massage may produce a general feeling of body relaxation that leads to the walls finally crumbling - the walls we erected to hold back the flood of fear and grief that threatened to knock us off our feet just at the time we needed to rise to fight the enemy. Perhaps we’re loathe to let down our guard, even years after our diagnosis and treatment. It doesn’t help that we need to revisit the beast each time we go in for another check-up, blood test, body scan, or notice a strange pain somewhere. No wonder we hold onto our defenses long after their usefulness date has expired.

My husband’s colleague also suggested that my reaction to the specific circumstances of facial message may have had to do with memories related to that part of my body. I certainly do remember many occasions of lying nervously on gurneys, being wheeled to operating rooms with medical personnel behind me, outside my visual field. I also remember the anesthesia masks. And I’m sure I had a smile plastered on my face right up until they knocked me out.


Maybe my real birthday present wasn’t the facial. Maybe it was realizing that it’s long past time to quit the smiling and just allow myself to cry.

Sensation in Reconstructed Breasts or Do you feel what I feel?

We worry a lot about how our reconstructed breasts will look. But little is written about how they will feel—to us, that is. Mastectomy surgery disconnects nerves, along with the other breast tissue. So we wonder: When my reconstructed breasts are touched, how will they feel to me? How will they feel when I'm embraced? The short answer is: There's no way to predict how much breast sensation you will retain or regain.

Breast reconstruction surgeons describe two kinds of breast sensation – “touch” and “deep touch.” “Touch” refers to the sensation on the surface of your skin. “Deep touch” is the pressure you feel against your chest wall when you're hugged. Skin-sparing procedures may help preserve some of the touch sensation, whether you choose an implant or a flap procedure. Flaps do offer the possibility of nerve regeneration within the flaps, however. And since fat is softer and may transmit pressure easier, some reconstructive surgeons think reconstruction using your own fat might increase the sensation of deep touch. But you should experience deep touch with implants, as well.

No matter what reconstruction procedure you choose, you'll probably experience significant numbness of your breasts. The good news is that your numbness will likely lessen over time, even years after surgery. For some women, though, the numbness never improves to any significant degree. Nerve regeneration in your breasts occurs at the outside edges first, moving inward toward the nipple area. Your nipples themselves will never regain the erotic sensation they had before, though, even with a nipple-sparing mastectomy.

If you choose flap reconstruction, there will be numbness at your donor site as well. The pattern of nerve regeneration is similar to your breasts. Again, feeling returns farther out from the site first, gradually returning to the area closest to the incision last.

Some surgeons are attempting to reattach severed nerves during reconstruction. At present, the results are not yet proven, though various claims are made. The network of nerves in the breast looks like a river with many branches heading in a myriad of directions. Which nerve ultimately connects to which area of the breast is extremely complicated and almost impossible to ascertain. Since many women experience spontaneous nerve regeneration as part of their body's own healing process, it's difficult to determine if the return of sensation was due to the surgeon's intervention or would have happened on its own.

As your body heals following reconstruction, you may begin noticing strange zings, itches, and prickly feelings in your breasts and donor sites. These are good signs. They show that the nerves in those areas are functioning and are likely regenerating. Celebrate!

P.S. My own spin on breast sensation: Most of the time I'm doing anything, I'm wearing a bra. Most of the time when I'm hugging people, I'm wearing a bra. Bras mute skin sensation. And since I never noticed a lessening in “deep touch” sensation, hugs after two breast reconstructions feel the same as before.

Lessened breast skin sensation is only an issue for me when I'm sans bra. Well, I guess that's the same for everyone... Hugging, without a bra, still feels great. I don't feel a loss. It involves so much more of me than the skin feeling on the very front of my breasts. It involves “deep touch” and let me add “emotional touch.”

I discovered a strange phenomenon, though, while working on this blog post. I'm not sure what to make of it. I could have sworn almost all my skin sensation had returned. I decided to perform an experiment, to be sure. I closed my eyes and lightly ran a bobby pin over my breasts. I found there was more numbness than I experience in my day-to-day (and night-to-night) life. I've apparently overestimated the actual return of sensation to my own breasts! How is this possible? I have a theory.

I believe our memory can fill in lost details regarding sensation – or lack of it. I'd noticed this about my nipples—my recollection of the feeling is so close, so vivid, that it's almost there in my skin. I call on it when I need to... We've all experienced this with visual or auditory memory, but I think it's also true of “touch memory.” Add the touch memory to the visual reality of your partner enjoying your new breasts, and you may also perceive...imagined? phantom? self-hypnotic?...return of sensation. I'm not going to do a Google search on this one. I've experienced it myself.

Ready to be Restored

Since Breastoration launched in 2010, eighteen women have benefited from grants to help cover costs associated with breast reconstruction after cancer. The total dollar amount is not yet final from our most recent fundraiser in New Orleans on October 29th - An Evening with Jewel - but we are fairly certain it will be at least $100,000! This month I'm writing about a real woman who is being helped by dollars donated. Her name has been changed to protect her privacy.

Wendy remembers the date she was diagnosed with breast cancer, even though it was almost two years ago. It's a shock for any woman, but especially when you're only 34 years old, with a 7-year-old child. The cancer was so extensive in her left breast that doctors recommended six months of chemotherapy prior to any attempt to remove it surgically. After completing chemotherapy, she underwent a modified radical mastectomy, which also included removal of lymph nodes. Wendy - along with her husband and child - then traveled from their home about 20 minutes outside New Orleans to Houston's MD Anderson, one of the three original comprehensive cancer centers in the United States, where she underwent 44 radiation treatments, two times per day. After she returned to Louisiana, and with only a one month respite, Wendy began an additional round of chemotherapy that lasted four-and-a-half more months.

Between the day of Wendy's initial diagnosis until her last chemo treatment, 15 months passed. Her life and her family's lives were physically and emotionally uprooted, and their finances took a beating. Her husband, so loyal and supportive throughout Wendy's ordeal, had taken 4 weeks unpaid leave from his job, under the Family and Medical Leave Act. They'd incurred a whole host of expenses in Houston, including travel back and forth, rent, food, and child care, not to mention insurance deductibles, prescriptions, and all the other bills piling up on a desk at home.

Now Wendy is ready to face the next phase of her battle by taking back one thing that cancer took away from her - her breast. In Wendy's words: "When I found out about Breastoration from a friend and from the Jewel concert, I decided to look into it and see if this program was an option for me to apply for. My skin is stuck to my chest wall and the scar tissue from the surgery and the radiation feels like concrete. There are so many issues that I have about only having one breast right now. The body image disturbance that I carry with me every day is a challenge. The fact that these procedures need to be performed by excellent doctors who specialize in microsurgery is key. Implants were not on the table for me as an option due to the extensive radiation I received. This kind of reconstruction is basically my only option. So, when you don't have many options, you try to figure out what is going to work best.

"Many times my husband and I sat down and looked at the financial part of reconstruction and we did not think we would be able to afford it. The surgeons that I wanted to perform my surgery were local to me, but were out-of-network on my insurance policy. This procedure is definitely yet another financial burden on my family. Decisions become even more difficult to make when you find out about out-of-network fees, the time you have to recover from the procedure, the help you need with housework, my 8-year-old child at home, help with meals, grocery shopping, and many more things that are needed. We are also still recovering from the financial hardships of 2011.

"The funding from Breastoration has definitely helped make things easier for us to manage our finances for this surgery and to keep up with our other bills. I am thankful that Breastoration made a difference and is opening a new chapter in my life to move forward. I am ready for it. I have been ready for 16 months, but I am just getting the opportunity to have it."

In early 2013, Wendy is scheduled for delayed DIEP flap reconstruction of her left breast and immediate skin-sparing mastectomy and DIEP flap reconstruction of her right, in New Orleans. Best of luck, Wendy! Thank you so much for generously sharing your story. May the new year see you restored and healed, in body, mind, and your beautiful spirit!