Thursday, April 3, 2014

What's All the Flipple About the Nipple? (Part One of a Trilogy)

When I was diagnosed with breast cancer back in 2006, I remember asking my surgeon here in Minnesota if there was a way they could just remove the insides of my breast, while saving the outside, and then re-stuff it with something else. I guess I was thinking implant, since I didn't know that you could use your fat to rebuild your breast. I wince as I remember actually comparing it to a purse. Even to me, that sounded pretty dumb and desperate, and I figured he thought so, too. He looked at me like I was one bulb short in the attic and replied with one word, "No." Only later did I find out that my purse metaphor wasn't that far-off, nor was my question stupid. In fact, turns out the surgeon was the ignorant party in that conversation.

Someday I'll blog about skin-sparing mastectomies. But today I feel compelled to zoom in on a particular sub-area of the skin envelope (or purse)--and the part I was truly the most worried about when I asked my surgeon that question. This part of the breast can often be spared, as well, but it's not talked about a lot, even though it isn't nearly the fringe procedure it used to be a few short years ago. And again, as with so many issues involving reconstruction, a big part of the problem has been so many surgeons lacking training in newer breast recon techniques. So they decide not to inform their patients about alternatives they, themselves, don't happen to know how to do.

Maybe a woman not being informed that her nipple(s) could be spared doesn't rate up there in seriousness with other issues--such as docs recommending breast recon procedures best relegated to the surgical dark ages. But still, nipples are super important. I know lots of women who have suffered additional surgeries and procedures in the nipple quest to replace those lost to breast cancer--and it turns out they're not that easy to reproduce. I don't know exactly why this small, circular bulls-eye of pigmented skin emanates such strong juju in the context of the rest of the breast, but it's not difficult to imagine why. I'd guess part of it is mammalian hard-wiring.

After my lumpectomy (that was later followed by a mastectomy), what I feared most about removing my bandages was that my nipple would be gone. No one told me whether that was part of the "lump" they removed in the lumpectomy. And I felt embarrassed to ask the question, "Excuse me, nurse, do you know if I still have a nipple on this breast?" I was so happy to later find it there, in the middle of my bruised and battered breast, that I cried.

In fairness, part of the reason sparing the nipple is not universal practice yet is because there have been no large, longitudinal studies--as there have been in comparing regular to skin-sparing mastectomies--to determine the risk of nipples harboring or being potential incubators for breast cancer cells. Because of this, some women, even if offered the alternative of nipple-sparing mastectomies, decline. I've heard many women who've undergone prophylactic mastectomy due to their BRCA status, for example--which makes their risk of getting breast cancer sky high--say that if they are already going to such lengths to avoid cancer, they sure aren't going to take any unnecessary chances just to save their nipples.

But there is still a significant amount of research that strongly indicates nipple-sparing mastectomies are a safe alternative under certain circumstances, at least. And those circumstances may be expanding. That research has led to a greater understanding of where cancer cells seem to start-up and hang-out in the breast and the structural make-up of the nipples themselves. Since breast cancer often begins and dwells within milk ducts, and milk ducts reside in nipples, it's not a leap that nipples could give birth to breast cancer. Yet the cancer literature does not report any breast cancers originating in the nipple, so if one did, it would be a pretty freak occurrence. Instead, studies of actual nipples and breasts removed in mastectomies show that cancer starts out in very tiny ducts or the lobes that produce milk. But the ducts in the nipple are significantly larger, and the very few lobes in that area are found only where the nipple meets underlying breast tissue, nowhere near the nipple peak.

There is so much fascinating information about nipples that this warrants at least a nipple blog trilogy. So I'm going to close Part One with the list of factors surgeons now use to determine if a woman is a candidate for a nipple-sparing mastectomy. But I will be writing more about some new research--and there have been some relatively recent, exciting findings--so stay tuned!

1. At least two centimeters should separate the cancer from the nipple. Some docs think four.

2. Cancer tumors in the breast should be less than three to four centimeters, whether invasive or non-invasive.

3. No lymph node involvement.

4. Cancer should not be present in more than one quadrant of the breast.

Tuesday, February 25, 2014

"Winged Victory" or "The Birth of Venus: Women Restored After Breast Cancer"

I would love to curate an art show of an unusual sort. One that would travel to various museums and venues around the country. I have some pretty good ideas for titles for the exhibit. In my mind’s eye, I see a sign mounted under plexiglass on the clean, white entrance wall to a large exhibit room. Maybe at the Minneapolis Art Institute. Some cities might not have a venue with such panache. But I would relent and let it be shown in other spaces, too, as long as the lighting was good and the location classy.

The art I’m thinking of deserves to be showcased. And the public needs to see it. The artists who work in this medium are extremely rare. Even if you count those who—to be honest—are not very skilled. But those unskilled artists would not be part of this exhibit. The art form is so little understood and so little seen that most of the population has virtually no standard by which to judge what’s good and what’s not; who are the masters and who are the charlatans. The ignorance must end. This exhibit could help.

Many people are impacted by the successes and failures of these artists. Their work adorns the most intimate space in which women live. Women see it displayed every day of their lives, so they deserve to know what they’re buying. They deserve to know what they can aspire to have. They deserve to know what excellence is and when “good enough” is really good or really enough. Because when we women settle, we'll only get more of the same—mediocrity at best, disaster at worst. We deserve to know enough to demand better—better training, better techniques, and—okay, you guessed it—better surgeons.

The art of breast reconstruction has advanced far beyond what most women know. Is every result a masterpiece? No. To mix metaphors, even Babe Ruth only batted 340. But let’s get past words and let some pictures do the talking. 

The Birth of Venus by Sandro Botticelli
These pictures would be very different from those that make the rounds of the Internet every so often—the single photos, or links to photo galleries, or notices about traveling exhibits. These wouldn’t be the same as the ones used for raising awareness of the malevolence of breast cancer and our need for a cure. Not like those showing how inexorably breast cancer hunts down all women—not even sparing those in the bloom of youth, some with babes at their sides. These would be exhibited not to shock or to scare, but to soothe. To educate. To empower.

To begin, we need the artists—those who sculpt in flesh, as well as those who can photograph women at their most vulnerable. And we need the women who offered themselves up to be healed. Who put their faith in the hands of God and the hands of their surgeons—the most talented, the most skilled, the most dedicated to excellence.

Such a project would require a tremendous joint effort. If I'm serious about this, I guess I'd have to launch the raft to see if it can float, see if it can catch a current. The tide is heading out, and there's no time like the present.

The Little Mermaid by Edvard Eriksen

Wednesday, January 29, 2014

Battle Lines Drawn

One of the lovely New Orleans "Steamboat" Houses

If you’ve been reading my blog, you’ll remember being introduced to Wendy in December, 2012 (Ready to Be Restored). She’s the young mom diagnosed with breast cancer two years ago. You met her soon before her first stage of breast reconstruction, and she was raring to go! Especially after many months of chemo, surgery, radiation, and more chemo. Then we visited with her again in March, 2013 (On Her Way or Laissez Les Bon Temps Rouler). She’d completed her first surgery, the results of which she described as “amazing.” She felt a self-confidence in her appearance that she’d been lacking for a long time and was excited for the next stage of reconstruction. Her second stage went equally well—her results are beautiful. All she needs now are her nipple tattoos, and she will be able to join the “All Done” club!

Chalmette battlefield
So on my annual October pilgrimage to New Orleans, and after all our e-mails, messaging, and phone conversations during the course of the year, Wendy and I were determined to finally meet up in person. I was excited! She also thought it would be a great idea for our husbands to talk as well, since guys usually don’t have much of a support system when dealing with breast cancer. But I was worried after she e-mailed that she wouldn’t be having her nipple tattoos done that month, as planned. I knew that anything interfering with those finishing touches on her breast reconstruction must be very serious and probably bad. Which it was. She’d had a second occurrence of metastatic breast cancer in her bones.

Wendy and her husband picked us up in the French Quarter, in front of Muriel’s restaurant. Wendy is an absolutely lovely young woman. And not just by virtue of her youth and vitality, but literally quite beautiful, with brown hair, clear blue eyes, and an engaging smile and personality. She and her husband drove us on a fascinating tour of New Orleans sites we’d never seen before, including Chalmette National Monument, where the Battle of New Orleans—the last great battle of the War of 1812—was fought against the British. Andrew Jackson and his men earned the statue and the Square in the French Quarter for prevailing in the face of a much larger and more experienced army.  Wendy also showed us the Versailles live oaks in St. Bernard Parish, the magnificent "Steamboat" Houses at Lizardi and Egania Streets, and the WWI memorial on Burgundy. We topped off the tour with a delicious BBQ lunch at The Joint in the Bywater neighborhood, after which she and I enjoyed our extended show-and-tell in the ladies room, while the husbands had some alone time. She is still so happy she had her breast reconstruction. And I can personally attest to her fabulous results. I mean seriously!
"The Joint"

Fortunately Wendy has some very good news to report, too. She was accepted into a clinical drug trial at M.D. Anderson that shows lots of promise. This does require that she and her husband make a monthly drive to Houston to receive the medication—in pill form—and for monitoring. Unfortunately with clinical trials, some of the subjects do not receive the experimental drug, but instead, just a placebo. Wendy was told she had a 2 in 3 chance of receiving the treatment. But as it turned out, it appears that she is receiving the drug! In Wendy’s words: “It is just so crazy and wonderful that this clinical trial fell into my lap at the right time. I know I will overcome this, as I do have faith that there is a cure for this disease."

Wendy's January report was very good. Her scans show her cancer is stable. She will continue the trial, returning to Houston monthly, with new scans in April. As a postscript, I have learned some new lingo, which I passed on to Wendy. The ladies on the Stage 4 cancer threads on say - when their cancer is stable - that they are "dancing with the stable boy." When their cancer status is "no evidence of disease," they are "dancing with NED." Here's hoping that Wendy and her new drug artillery find her as successful as Andrew Jackson at Chalmette, and graduating from dancing with the stable boy to dancing with her husband far into their golden years.

Thursday, December 5, 2013

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 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:

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.

·         Teri’s Blip in the Universe, launched in March 2009.
·         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.
·         Featured in Wired magazine February 2010 or pdf file:
·         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.
·         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:
·         Featured in a chapter of a book titled Pink Moon Lovelies: Empowering Stories of Survival, by Nicki Durlester, April 2013
·         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.

Thursday, October 31, 2013


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!

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 . . .


Monday, September 30, 2013

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 24th Annual New Orleans Film Festival. If you're interested in attending, contact 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 20th 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!

Thursday, August 29, 2013

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


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.)