Teri's BRCA Story or Unconquered!

Teri Smeija

This month, I asked my friend, Teri Smieja, if she would agree to write a guest blog. In a previous blog post, I wrote about the topic of prophylactic mastectomy and the role breast reconstruction can play in the difficult decisions some women must make, including those women found to carry the BRCA mutation. Teri was one such woman. She has become an outspoken advocate for education, research, and action for breast cancer survivors and pre-vivors, especially those carrying a mutation on the BRCA gene. I was fortunate to meet her online, several years ago, on the breastcancer.org discussion boards, under the topic of Breast Reconstruction, on the "NOLA in September" thread.  A couple of weeks ago, Teri was in Minnesota to visit her son, in his final semester at the U of M. It was great to get together with her and also discuss the exciting news of the recent publication of a book she co-authored! But I'll let her tell you about that herself: 

It was the year 2009, soon after the birth of my youngest son that my world was turned topsy-turvy when I learned that the ovarian cancer one of my aunts had passed away from likely had the BRCA mutation. My mother, who I was estranged from at the time, sent me a piece of paper with her test results on it, showing that the ovarian cancer she had been battling was a result of testing positive for the BRCA1 mutation.

I had a lot to learn, and at the time, I was still living in Ridgecrest, CA. Out in the middle of the desert, I felt like a lone coyote with no one to guide me in the right direction. When I went to see my ob/gyn for my post-having-a-baby checkup, I showed him my mother’s test results and asked if I could be tested too. I was his first patient ever requesting genetic testing, and we sort of fumbled our way through the process, and we didn’t do it quite right. How could we have? There is no real standard operating procedure yet. It took two tests and fifty-two days for me to get my BRCA results back. I knew in my heart that I would have a deleterious mutation, like my mother, and her deceased sister, my Aunt Benita and my mom’s other sister, my Aunt Lita.

Knowing the answer in my heart, didn’t really prepare me for the onslaught of the journey in front of me when I saw my own test results and got confirmation, in black and white, that I too had the BRCA1 mutation.

The anguishing journey that followed is what led me to start my blog, Teri’s Blip in the Universe, one of the very first successful BRCA blogs, as I openly made my way through the terrible choices I faced.

I met with genetic counselors at Cedars Sinai in Beverly Hills, CA and learned that it wasn’t just my incredibly high breast and ovarian cancer risk I had to worry about. There are several other cancers associated with BRCA mutations, but these two are the most common cancers. Not only did I have to worry about the up to eighty-seven percent life-time breast cancer risk, and a forty-four percent chance of ovarian cancer, the risk of recurrence is unusually high in those that have a mutation on their BRCA gene. Cancer is relentless in people like me, and while one case of breast cancer MAY be put into remission (remember, there is NO CURE for breast or ovarian cancer) through chemo or radiation, the case of recurrent and metastatic cancers is through the roof high.

According to current recommendations by genetic experts, the best way to survive breast and ovarian cancer is to fight it pro-actively by having a prophylactic bilateral mastectomy and a hysterectomy and oopherectomy. In layman’s terms that means the best chance for survival that women like myself have, is to undergo a double mastectomy and to have our ovaries and fallopian tubes removed while those organs and tissue are still healthy. We have to strike out at the cancer, before the cancer strikes out at us. Oh, if only it were as simple as eating more broccoli or doing extra yoga. Unfortunately at this time, our choices are few and far between. 

I blogged extensively through my emotionally charged journey. For me to have to make that sort of choice, and having to make it out in the middle of the Mojave desert, where no other known mutants dwelled was incredibly difficult. I was scared. I was terrified! I had one son in his last years of high school and one son who was just a few months old while I was trying to navigate this world along with my husband, and neither one of us had any real prior knowledge of what any of it truly meant.

(Eve here. I came across the following video post by Teri, just before her first prophylactic surgery. The poem she reads is "Invictus" - Latin for 'unconquered" - by William Ernest Henley. After that, her narrative continues.) 

Teri and Dr. Herman

The success of my blog, and the "BRCA Sisterhood", a Facebook group that I co-created with my Canadian friend and BRCA2 mutant, Karen Lazavoritz, and being featured in an issue of Wired magazine after the executive editor came across my blog, gave me the confidence to agree to write this book along with Dr. Jonathan D. Herman, a BRCA advocate like myself (he’s been in many Public Service Announcements and was even on an episode of The Doctors), a practicing ob/gyn who lives in New York and travels all over the country giving BRCA lectures to other doctors.

·         The Doctors episodes are here: http://learnabouthboc.com/media/

It took us a few years, I went through a few more surgeries and some nearly deadly complications, and we changed our focus more than once, but in the end we decided to write our book in the style we used, compiling letters and quotes from Previvors and survivors that we’d both met along the way. The letters in our book are full of advice, gripes, kudos, stories and experiences of patients written to their doctors, in a way that will be able to help doctors understand the importance of genetic testing, and to help those in the medical community truly understand what sorts of things a person living with a BRCA mutation go through. Men can have this mutation as well, but their implications are not always as obvious. Many doctors still think that men can’t get breast cancer, or that women can’t get the BRCA mutation from their father’s side of the family. Many doctors are discouraging genetic testing (for various reasons) or missing obvious red flags in their patient’s family history forms.

Our hope with this book is to literally change the way the medical community treats all of their patients. This book has the ability to save lives. Not theoretically, but it actually has the power within it to save lives.

I’m incredibly proud of how far I’ve come. I remember being six years old and chasing the boys around the playground in elementary school, long ago. I made my way through high school, barely. I went through life, lacking focus and thinking more about myself and my son, and our own needs, wants and desires than I did about anyone else’s. Not that I didn’t care about other people, I just didn’t realize I had any ability to do anything about the injustices in the world. I suppose I felt removed from a lot of it, and didn’t understand that ONE person CAN make a difference in the world. And if I did believe that, I certainly never thought that ONE person could be ME.

Two and a half years ago my husband was offered a job at the Pentagon in Washington, DC, and here we are now, living happily. I’m not the same person I was, all those years ago. Learning of my BRCA mutation changed me. It turned me into a caring, giving, loving philanthropist type of person who my family can be proud of, and who I can be proud of. I genuinely care about the world, and know that there are things in it that can and should be changed, and to simply complain about what’s wrong, without at least trying to do something about it, is not who I am anymore.

Accomplishments:

·         Teri’s Blip in the Universe, launched in March 2009. http://myblip.wordpress.com/

·         BRCA Sisterhood on Facebook, started in November 2009 and today it is the biggest BRCA support group on Facebook with over 2000 members and growing daily. As this is a closed group, only women with the BRCA mutation are allowed to join (I recently facilitated the start of a companion group on Facebook called BRCA Brotherhood, moderated by Dave Bushman). I can be emailed directly on facebook for admittance upon approval. Teri.Smieja@facebook.com

·         Featured in Wired magazine February 2010 http://www.wired.com/magazine/2010/01/ff_decisiontree/2/ or pdf file: http://www.wired.com/images/press/pdf/decisiontree.pdf

·         Featured in a chapter on genetic testing in the book The Decision Tree by Thomas Goetz (author is also the editor of Wired), February 2009. http://www.amazon.com/Decision-Tree-Control-Personalized-Medicine/dp/1605297291/ref=sr_1_1?ie=UTF8&s=books&qid=1264196543&sr=8-1

·         Spoke on the radio station IROC 102.7, July 2010 as FORCE’s (Facing our Risk of Cancer Empowered) social network coordinator. Link to that audio file: http://myblip.files.wordpress.com/2010/07/1-teri-smieja.mp3

·         Featured in a chapter of a book titled Pink Moon Lovelies: Empowering Stories of Survival, by Nicki Durlester, April 2013 http://www.amazon.com/s/ref=nb_sb_ss_i_2_9?url=search-alias%3Daps&field-keywords=pink+moon+lovelies&sprefix=pink+moon%2Caps%2C550

·         Co-author of the newly released book, Letters to Doctors; Letters to Doctors: Patients Educating Medical Professionals through Practical True Life Experiences. The BRCA Mutation and Hereditary Breast and Ovarian Cancer Syndrome Edition, by Dr. Jonathan D. Herman, and Teri Smieja. Available for purchase through amazon, Barnes and Nobles, and a bookstore near you will be able to order it for you.

BA-RAH DAY!

Though exact numbers are still uncertain, one certainty is that the New Orleans Breast Reconstruction Awareness (B.R.A.) Day Breastoration happening – the New Orleans premiere of the film, Decoding Annie Parker -- was a huge success, bringing in over $50,000! Hands of applause to all the folks who organized this great event and all who attended. Not only was money raised, but also awareness – about the discovery of the BRCA gene, how it impacts individuals and families, and about a woman's options for treatment and breast reconstruction, should she so choose.

Annie Parker

Director Steven Bernstein

As part of its educational efforts surrounding B.R.A. Day observance, The American Academy of Plastic Surgeons put together a valuable new online resource. The Breast Reconstruction Recovery Guide: Steps to a Speedy Recovery with lots of input from breast recon patients. Check it out! http://www.bradayusa.org/breast-reconstruction/breast-reconstruction-recovery-planner-guide.html

Up here in Minnesota, we continued our two-year tradition of bra art creations and accompanying educational efforts regarding breast reconstruction – the number of artists participating is growing by leaps and bounds. We started mid-summer at the St. Cloud Convention Center and continued throughout the region, at area businesses and art exhibits and other general breast cancer awareness events, culminating at the American Cancer Society's Making Strides Against Breast Cancer at St. Cloud State University. No more words necessary this month. I'll let the pictures do the talking . . .

 

NOLA Film Premiere Supports Breastoration

St. Louis Cathedral, New Orleans

B.R.A. (Breast Reconstruction Awareness) Day 2013 is busting out all over! Most exciting for Breastoration Foundation will be the New Orleans fundraiser on BRA Day—Wednesday, October 16, 2013, at the Prytania Theatre--the NOLA premiere of the feature film Decoding Annie Parker during the 24^th Annual New Orleans Film Festival. If you're interested in attending, contact breastoration@gmail.com. Tickets to the screening itself are $50 each. If you want to participate in the Patron Party event, which includes a gala prior to screening with both Director Steven Bernstein and Annie Parker—one of the two women around which the film revolves—the price is $250. A question and answer session will follow the screening, with Bernstein, Parker, Dr. Alan Stolier (surgical oncologist) and Drs. Sullivan and DellaCroce (reconstructive surgeons from the Center for Restorative Breast Surgery).

Decoding Annie Parker is the fascinating story of the discovery of the breast cancer gene via the true intertwining tales, over fifteen years, of the inspiring lives of the namesake of the film as well as the geneticist who made the breakthrough—considered one of the most important scientific discoveries of the 20^th century. I've heard and seen lots of references to this film, but have to admit I assumed it was a documentary. Turns out it is a dramatic film written by Steve Bernstein and starring some well-known actors and actresses, including Helen Hunt (award-winning film and TV actress, perhaps best-known—well, by me, anyway—for her starring role on 90's sitcom Mad About You) who plays the researcher Mary-Clare King; Samantha Morton (critically acclaimed film actress, best-known-by-me for her role as the “pre-cog” in Minority Report) who plays Annie Parker; and Aaron Paul (best-known-by-me-and probably-everyone-else for his Emmy-award winning role as Jesse Pinkman in theTV series Breaking Bad, which my husband and I are currently viewing on Netflix in marathon sessions) who plays Annie's husband. The “spoiler” to this film is that we know Annie Parker is alive and well and ready to answer your questions about her eventful life :-) 

“This important film is just as critical to the general public as it is to breast cancer patients and previvors,” says Dr. Scott Sullivan, Co-Founder of the Center for Restorative Breast Surgery—one of the co-sponsors of the premier. “It raises the possibility of a predisposed risk, empowers women to take their health into their own hands, and educates them on the many reconstruction options available...” ('Previvor' is the term coined by 'F.O.R.C.E.' [Facing Our Risk of Cancer Empowered] to describe a survivor of a predisposition to cancer. FORCE goes on to say that it's important for cancer previvors to consult with a specialist in cancer genetics when determining risk for breast cancer and making risk-management decisions.)

Meanwhile, up here in Minnesota, we'll mark B.R.A. Day in a different way—photos to follow. It's exciting to see the growth in the movement to educate women about their reconstruction options. All over the country. All over the world. Let me know if you are doing anything this year to honor the cause!

Breast Cancer, the Gift That Keeps on Giving or It Ain't Heavy, it's Lymphedema

As I sit down to write this blog post, I’m feeling teed-off and stupid. Teed-off because, once again, women aren’t being given the information they should. Today I'm talking about the chronic, incurable medical condition known as lymphedema (LE) - a not uncommon complication for cancer survivors that one study says only 57% of breast cancer patients are ever informed about. And why do I feel stupid? I’m one of the those 43% who never got the memo.


Lymphedema is said to be the number one post-treatment issue for breast cancer survivors, and it can leave sufferers not only with a lessened quality of life, but also feeling abandoned and stigmatized. Some women have even said they’d rather go through chemo again than be living with this condition. Symptoms on the side(s) of the body impacted by the cancer include: swelling and discomfort in the arm, hand, fingers, and feelings of heaviness, fullness, hotness, possible swelling or discomfort, tenderness, (sometimes severe pain) in the trunkal area - front (including breast), side (including armpit), or back.

The estimate of its incidence rate in the survivor population varies widely -- probably because no standard means of diagnosis or measurement exists. The lowest number of the range I’ve seen was 1%. The highest end of the range was 91%. So split the difference, and some say the rate is probably around 50%. The numbers include women whose lymphedema develops soon after treatment (one study said most cases develop within the first few years) all the way out to 25 years post-treatment, with likelihood lessening over time. Why didn’t anyone ever tell me what I should be doing to lower my chances of developing this? And what about the women who did develop it, but didn’t know soon enough for a LE specialist (if they could even find one) to intervene and possibly have made it easier to manage or lessened the chances of it

worsening?

I’ve certainly come to know something about lymphedema since I was diagnosed and treated for breast cancer, but mainly via other breast cancer survivors. The complication is precipitated by anything that disrupts the lymphatic vessels and their drainage via cutting or scarring. Sentinal node biopsy, axillary lymph node dissection and/or radiation, and in some cases, perhaps certain types of breast reconstruction. I’m not going to attempt a long medical explanation. I’ll leave that to the experts (see links below). But unfortunately, knowledge seems scarce, research is inadequate, and there are no long-term fixes, including the experimental ones.

Breast cancer survivors with LE have made mighty efforts to inform other women, medical personnel, and the general public about this condition and the psychological toll it takes, as well as the lifestyle changes it forces on its victims, not to mention the financial costs -- which are not covered by Medicare or covered enough by private insurance. Management can entail multiple trips to a LE therapist for manual drainage via lymphatic massage (requiring highly specific training and many hours of experience). Also, patients are educated about wearing compression garments on the affected area by day (whose correct level of tightness -- to keep lymphatic fluid circulating -- may only be found through much trial and error), and time-consuming compression bandage-wrapping at night. Also skin care techniques. And exercise may be recommended, but not too much or engaged in too quickly. Lymphedema can require lifetime limits on certain physical (especially strenuous) activities.

I’ve heard of some pretty messed up things going on in women’s encounters with other people and even doctors, regarding the issue of post-breast cancer lymphedema. Like doctors telling women their chance of developing it after just a sentinel node biopsy is zero (even though it has happened to women with only the sentinal node taken -- and I know one), and numbers indicate that as SNBs have increased over the last decade, so has incidence of LE. And when symptoms do develop (which many women are never even warned about), no one may bother to tell the patient to seek treatment for it. Some of this is ignorance and some is thoughtlessness.


As breast cancer survivors, we often encounter well-meaning family or friends who seem to think that once cancer treatment is completed, we should all just be thankful we’re alive and get on with our lives. Almost like it’s an affront to them if our minds and bodies are still reeling from the ramifications. And who really wants to spend time trying to explain why they’re wearing that goofy-looking elastic sleeve that’s hard to find long-sleeved shirts to cover (and who wants to have to wear long-sleeves in the heat? -- unfortunately a time when our extremities are more prone to swell). And perhaps the worst is being treated like the condition is all in your head.

Adopting lifestyle changes to minimize your chance of developing LE or of it getting worse -- in addition to those noted above -- will depend upon your personal weighing of the costs/benefits ( based on incomplete information). It also depends upon how risk averse you are (rooted in risk estimates also based on incomplete information). Suggestions include: never having your blood pressure taken on the arm by your effected breast (use your leg - if the nurse knows how). Don’t have blood drawn from that side or IVs placed there (use legs or feet). Avoid heavy lifting, especially on the effected side. Avoid sunburn or insect bites on that arm. Skip manicures that may involve injury to the cuticles. In short, anything that may raise risk of infection or inflammation. You can see some of the suggestions require more effort than others.

Soon after my treatment, I noticed the med techs asking me which side I’d had the cancer on, prior to drawing blood or taking my blood pressure. I assumed they were just wanting to avoid causing me more pain on my already painful side. Oh duh! Maybe they actually knew about my lymphedema risk. Too bad no one clued me in. Some of this stuff you just have to find out on your own, I guess, though that’s not how it should be. (Thank God for Google!) Sometimes I long for the days when I thought I could just trust my docs to take care of me and let them worry about the details of my illnesses and treatments. But understanding what being a breast cancer survivor entails -- with all the ugly and often unspoken little details (that can turn out to be huge deals!) -- brings with it some feeling of control. And I’ve learned the hard way that “Ignorance is (not) bliss, “A little knowledge is (sometimes and sometimes not) a dangerous thing.” But “Knowledge is (ALWAYS) power!”

(Special thanks to Pam Evgen for providing so many valuable insights and resources.)

http://www.abc2news.com/dpp/marketplace/cancer_treatment_centers_of_america/lymphedema-may-cause-pain-after-surgery

http://www.stepup-speakout.org/

http://lymphedivas.tumblr.com/post/57175085868/what-we-dont-know

Breast Reconstruction Pictures Worth a Thousand Words

I’ve been experiencing competing - maybe contradictory - feelings for a long time now. Perhaps I’m the only one who sees a dilemma. I don’t think I’ve heard it discussed or written about before. In any event, I’d like to get my own thoughts out there into the blog-o-sphere for discussion.

My great aunt was diagnosed with breast cancer when I was in early elementary school. My cousin and I visited her in the hospital. Later, when we mentioned to our mothers that she had shown us her bandaged, post-mastectomy chest, they seemed horrified. Now I certainly hadn’t been shocked or traumatized. A wrap-around bandage wound round her chest. I remember one tiny drop of blood on the dressing, but it didn’t bother me. However the response of our mothers certainly conveyed the message that there was something very distasteful about what my great aunt had gone through, and she should have kept it hidden from us. Even though it was hidden. Behind the bandages.

Years later I came across a nude photograph of a woman who stood proudly for the picture, despite and because of the fact she was missing a breast. The tableau was both intriguing and unsettling. Like one of those drawings where something’s missing in the picture, and the riddle is to figure out what. The thing that's absent may be very hard to find or obvious. This was obvious. I was definitely disturbed by that lost breast, but the woman was still lovely. That was the intriguing part. Her chest looked smooth, like the rest of her skin. She didn’t look deformed. I saw no prominent, ugly scar. Rather it appeared as though her breast had simply been erased from her otherwise flawless body. In a way, the lack of the breast only made her remaining breast look more perfect.

But even in light of these experiences, when I was offered before-and-after photos to view at my first breast reconstruction consultation, I responded, “No, I don’t want to see them. I don’t think I could deal with that right now.” Clearly, I didn’t expect the photos to be reassuring, only that they would add to my anxiety. And now, when I recommend to other women that they view before-and-after photos when choosing their surgeons, I experience a little twinge of shame that I’m suggesting something I wasn’t even capable of doing myself during that initial post-diagnosis period.

Many women avoid mammograms, some even saying they’d rather die than face a breast cancer diagnosis and a resultant mastectomy. So it concerns me when I see increasing numbers of public exhibits of photos -- at galleries or online -- of women, post-mastectomy, who did not choose reconstruction. Do they fuel women’s fears and avoidance behavior where breast cancer screening is concerned? I heard once that “cancer” is the most feared word in the world, regardless of country or culture. For women, slap the word “breast” in front of it, and that terror jumps even higher. Do these photos add to women’s nightmarish imaginings when they receive the diagnosis?

I highly respect and admire the organizers, photographers, and courageous, selfless women models who put themselves out there in order to remind the public that behind the pink ribbons, breast cancer is a horrific disease. That it kills and maims and scars. That those of us afflicted are individuals who are more than our breasts -- whose beauty is more, whose femininity is more. Who could ever criticize such an education campaign? The motives are pure. The photos convey the message strongly, clearly, and with little need for words.

Not a photo, but me.

But I worry that these kinds of photos aren’t balanced by the other kind of photos that could educate women about the advances that have been made in reconstructive surgery. Photos that might lessen fears rather than stoke them. I guess I don’t really believe there are many people who don’t know breast cancer is a relentless beast of a disease that kills their mothers, their wives, their daughters, their dear friends. The diagnosis contains the dreaded word, “cancer.” And adding “breast” in front of it doesn’t turn the disease all pink roses and butterflies. But adding “breast” does add the element of sexual disfigurement to an already terrifying diagnosis that, years ago, women wouldn’t even talk about. And today it still causes women to procrastinate, indefinitely, screening tools that might well save their lives.

Someday maybe I’ll have the chutzpah and/or opportunity to go public with my own post-reconstruction photos, just like those other women who proudly bare their scars to educate women about the impact of breast cancer. Meanwhile, I’m posting the link to the gutsy blog-post of a friend of mine - our cyber paths crossed because we were treated by the same team of reconstructive surgeons, and all of us NOLA alumni feel a bond that transcends what part of the country or world we live in. Her blog is excellent, but take a look at her picture, the link to which is provided at the end of her post. It’s worth at least a thousand words.

http://www.huffingtonpost.com/eva-moon/breast-reconstruction_b_3386042.html

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.)