Breast Cancer Surgeons Should Limit Bias in Patient Dialogues

As I celebrate the third anniversary of my reconstruction and, on some levels, my resurrection, I am struck by how little advancement has been made in terms of educating women about their full range of surgical options to address breast cancer. 

As I mentioned in my earlier posts, I often find myself in a counseling role, supporting women newly diagnosed with breast cancer.  One of the most difficult decisions for these women to make relates to breast surgery.  Lumpectomy or Mastectomy? Reconstruction or Not?

Aside from the obvious imperative to remove the insidious cancer cells from the body, there's just so much to consider.  The considerations are extremely unique and personal to each and every individual woman.  Not only do these early decisions effect a woman physically and in terms of recurrence risk, but may impact her psychological and emotional well-being going forward.  These "quality of life" consideration MUST be given weighted consideration by both the patient and her team of physicians.

With the trend towards minimally invasive surgery and breast conserving lumpectomy, those that may benefit from breast removal (mastectomy) and aesthetic breast reconstruction are often made to feel over-reactive or overly conservative in their desire to explore the choice of mastectomy for early stage breast cancer.  I am not advocating for mastectomy.  Trust me, there are many times when I wish I could re-wind back to the days of having real breasts and the associated sexual benefits.  I am advocating, however, that all women facing breast cancer should be presented with their full range of possible surgical options before commencing their treatment plans. 

What many women do not know, for instance, is that some electing mastectomy over lumpectomy may be able to avert radiation therapy, which carries a risk of degrading tissue.  Also for consideration is the fact that lumpectomy can mar the breast aesthetic with its resulting scarring and divets.  It's not an easy or automatic decision.  Women should be shown the possible outcomes of plastic surgery breast reconstruction so that they can envision the end results of their cancer removal decisions.  Additionally, they need to be made aware of nipple sparing mastectomy and its benefit for some (see attached article).

I expect that as chemotherapy drugs continue to improve, and radiation treatment more pinpointed, fewer women with early stage breast cancer will truly gain recurrence risk reduction benefits by having radical breast removal surgery.  However, in the interim, women that want to insure or gain psychological/emotional faith in their survival after breast cancer, and those for whom aesthetic is emotionally important,  mastectomy with reconstruction should be offered, one of many options to fully consider at the very beginning of the breast cancer journey towards overall wellness.

Three happy years later, I feel and look great!

Tools and Tips and Fundraising Adventures

It’s mid-March in New England. For most, this means the anticipation of Spring, a much needed college break, the slow and deliberate shedding of winter sweaters, the tiny daffodil sprouts that give us Northerners cause to release the tensions of Winter. For me, Spring means all this and so much more. March means that breast cancer fundraising season is already in full bloom, and my beautiful bouquet of “Team BellaDonna” volunteers is right there blooming beside me.


Team BellaDonna, a loose conosortium of people directly or indirectly struck by breast cancer, began nearly a decade ago. Instigated by my mom’s emotional response to my first bout of breast cancer, Team BellaDonna is comprised of women and men that are inspired to exercise tangible efforts against the disease. This group, including up to 25 individuals over the years, has more heart than a herd of elephants, and a determination that has allowed us to collectively raise over $250,000 for the smartly and efficiently run Avon Breast Cancer Foundation, and its offshoot, the Avon/Love Army of Women. Young and “older”, moms and singles, businesswomen and students, members of the Team BellaDonna posse join the efforts for varying reasons. Some tag along for one cathartic term as an empowerment and renewal effort after battling breast cancer. Others, the core team of about eight, return to the group year after. We are survivors, supporters, sisters, sons, and perhaps superstars to those we empower through our numerous fundraising and awareness efforts. Turning emotion into effort, trial into tribute…that’s what this group is all about.

Over the years, Team BellaDonna has created and encountered many adventures. Among the humorous failures that were more investment that return – an “Open House” party at my home featuring the likes of Lia Sophia, Usborne Books, and Pampered Chef. What was I thinking when I opened up my home to the public? The concept was that people would move from room to room, purchasing items with a percent donated towards fundraising efforts.

Another questionable effort – the “cottage” handmade glass bead bracelet project. Beautifully designed bracelets made by women that were already overburdened with careers and kids, in a market flooded with Pandora®, Chamillia®, and other “trendy” “build a beaded bracelet” offerings. Yeah, that was destined to fizzle before it started.

The children’s concert palooza with a collaboration of four hugely popular interactive tot-set performers, garnered quite a bit for our cause, promoting breast health to hundreds of young moms to boot. Now that event was both fun and fruitful. We were roockin’ in the isles with toddlers at a packed auditorium! What pleasure to be a kid again, miming animals along with the pre-school set!

A greater success, and still with great potential, our Team BellaDonna “ArtWear” tee shirts, designed to symbolically represent hope BEYOND breast cancer, a core focus of my personal and professional efforts. With original signed art donated by a known artist, Ken Maryanski, this endeavor may yet be a winner. I just have to clone myself to find the time to roll this project out completely while still earning income through gainful employment. Still, the shirts do sell locally, and simultaneously raise hope.

Email, social media, direct mail, tables at supermarkets, motivational speaking, producing major public events, auctions, fashion shows – the fluid Team BellaDonna group, though they may very well raise eyebrows and sigh behind my back, has been with me from the time of my second breast cancer bout, literally marching towards breast cancer cures. Truth be told, we’ve had a lot of fun, met some amazing people, and learned great practical skills along the way! Oh, and then there’s the little 40 mile Avon Walk for Breast Cancer Boston walk in the park we reward our efforts with each May. But, that’s another host of stories.

Last week, whilst in the thick of planning our annual “Styles & SMILES” Charity Fashion Show and Auction (those of you that are professional event planners will realize this in itself represents a full-time job), we threw together an event called the “Pink Toolbelt Diva” party. Although not great as a fundraising event (the first time out rarely is), this event had the effect of raising more awareness and generating more empowerment than any of our prior fundraising endeavors. The Toolbelt Diva event allowed women to try Tomboy Tools®, sized for women and with pink accents, at fun hands-on stations “manned” by local Firefighters, Team BellaDonna husbands (bless my husband), and Home Depot store managers, who seemed to enjoy all the female attention. The event was a win-win-win, gathering women of all ages for the empowerment that comes with learning independent “tool use” skills, providing attendees the opportunity to contribute to the cause while getting practical skills and tools in return, providing a networking opportunity for area businesses related to homes and design, and reaping a percentage return towards Team BellaDonna fundraising efforts Through a concerted public relations campaign (did I mention my background includes a Masters in Communication?), the event garnered front page photos and articles in every area newspaper, both local and state news. The message: Women Can Do. The exposure and awareness for corporate Tomboy Tools (a women owned business that, at a corporate level, sponsors the Avon Breast Cancer Foundation), corporate Home Depot (traditionally perceived as a man’s playground), and the Avon Breast Cancer Foundation were a bonus benefitting these organizations. I do sometimes wish our corporate beneficiaries would find creative ways to reward our Team BellaDonna volunteers’ efforts towards promoting these businesses, but am also grateful for the opportunities these collaborations represent.

The “Pink Toolbelt Diva” event had little girls learning about power tools, grown women fixing faux cars, older women painting on practice walls, gardeners getting tips from Home Depot experts, and me finally learning what to do if my car tires fail. The three survivors on our team spoke with others, offering counsel, consoling those that exchanged their breast cancer stories, and modeling hope as they represented “thriving and purpose” after cancer.

For me, the event provided an opportunity, yet again and again, to model proactive humanitarianism and management skills for my young daughter, who, at 9, follows suit as a little leader of her own inventive and adorable “event management” efforts. Finally, I was able to let go of my need to “kick cancer’s #@$” by personally directing every fundraising project, passing the event managment reigns to two of our capable younger team members, who got a taste of what it is to pull disparate event pieces together, and the pleasure of watching the event become much more than the sum of its elements. In the thick of the event, I surveyed the room, all the action, emotion, conviction and shared purpose, and my eyes rimmed once again with inspired tears. Thus, like many other of our ongoing efforts to support those impacted by breast cancer and move the big bio-scientific –medical machine closer to the real breast cancer answers, we’ll call our first “Pink Toolbelt Diva” Party a good success.

Now, just weeks later, there are dozens of fashion show/auction tasks to tie up. We’ll need an entire skein of “pink ribbon” to knit the event together and pull it off, and a piece to tie the clock’s hands as we race to find the time to complete the event while juggling our lives. But, I know that Team BellaDonna is up to the task.

That Was Then, This Is Now: The Army Ending Breast Cancer

Back in the 50's, breast cancer was a taboo topic. Women that were diagnosed felt obliged to keep the diagnosis hush-hush, it was spoken of only in whispers and shrouded in fear. Radical surgeries, highly toxic treatments, and social stigma left women that were diagnosed devastated by the disease. The 60's and 70’s saw some improvement to this, as stories of survival gained public attention, women’s health initiatives grew, and the American Cancer Society stepped up its communications efforts. The 80's brought the onset of the "breast cancer awareness" movement, a result of growing disease incidence and news media propagation. Emotionally evocative breast cancer stories filled media air time and made the cover of prominent magazines.


No doubt about it, the evolution of breast cancer consciousness is responsible for reducing breast cancer deaths. As the subject became more "normalized" and less taboo, pro-health communications campaigns circulated. The disease went from something never spoken of to something discussed in nearly any social circumstance. The message of "early detection" found its way to more and more women, resulting in more cancers identified during early treatable stages. With cancers identified sooner, the survival rate increased. Early breast cancer benevolent groups were effective in saving thousands of lives.

Awareness walks emerged, effectively serving the dual purpose of visually reminding the public of the breast cancer epidemic and bringing participants together in productive collaborations. The “charity walk” paradigm spread, with well meaning walker/fundraisers now having to choose one beneficiary alliance over another. Two day walks, three day walks, relay walks, regional walks...the field of breast cancer walks and coalitions grew. While raising money for the cause, participants in these humanitarian walk efforts gained real benefits of increased self-esteem, social/emotional networking, and empowerment. Before long, hospitals began sponsoring their own breast cancer "awareness raising" events which, not just by coincidence, reflected positively on their marketing agendas.

As the movement twisted, turned and wove a complex web, corporate America jumped onboard, its marketing gurus seeing the potential of “cause association” advertising. The pink ribbon, inspired by the success of the AIDS awareness ribbon, became associated with the breast cancer cause. Beginning in the early 1990’s, breast cancer charities, in their zeal to collect as much money as possible, began partnering with profit-driven entities for whom "altruism" ranked 2nd to "product promotion". As evidence of its potential economic collateral mounted, charitable organizations like Komen sought registered trademarks in the use of the iconic pink ribbon symbol. Promising varying percentages of product profits, corporations inked the evocative pink ribbon on everything from soup cans to pot scrubbers, lest there be any question of their stance "for the cure" (as opposed to "against the cure"?). Competitive Corporate America, driven to distinguish brands and products, jumped by the hundreds into the sacks of bloated breast cancer non-profits. The proliferation of the ubiquitous breast cancer "pink ribbon" began to actually mimic cancer, spreading to a point of phenomenal "pink noise". Cause-related marketing spread like an uncontrolled disease. The pink ink syndrome occurred particularly during October, which was deemed Breast Cancer Awareness month. (Folks, I assure you that breast cancer is a year round disease). Discriminating companies, those supporting the most effective breast cancer organizations, have truly made a remarkable impact in saving lives from the grips of breast cancer. However, some of the tremendous earlier efforts to reduce fear have become eroded by the overwhelming use of the pink ribbon on consumer products. For many, particularly those directly impacted by breast cancer, the repetitive visual reminder is not unlike the incessant “nevermore” reiterations of Poe’s Raven.

That was then, this is now. From its beginnings in the mid-twentieth century to the pink ribbon period, the “awareness” and “commercialization” chapters of breast cancer are waning. A new and exciting chapter in the fight against breast cancer is commencing, one that will not only eradicate breast cancer, but will also shed light on stopping cancers of all types. This final chapter is focused on stopping breast cancer before it starts. It requires targeted, collaborative, and concerted research partnerships. And, this cancer prevention research, in order to be truly fruitful and expeditious, requires scientifically significant study enrollment.

So, back to the grass roots that got us this far. Just as Dr Susan Love and other grandmothers of the breast cancer movement effectively engaged humanity in life-saving breast cancer awareness, the time has arrived for women and men to become engaged in research that will prevent the disease from occurring all together.

Wise organization like the National Breast Cancer Coalition, the Avon Breast Cancer Foundation, and the Army of Women are leading the way, calling for an end to breast cancer by 2020. So far, half a million ordinary people have committed to the solution, ready to write the next chapter against breast cancer. The Army of Women research database, and the technology that enables it, are the wave of the future. This time, the grass roots span the entire global community. Any individual, anywhere in the world that has internet access, can act to be part of the solution by simply allowing researchers to study their lifestyles and health. It’s about significant research acceleration enabled by the participation of ordinary people. This new chapter of the breast cancer legacy will take the ribbon that was once used to symbolize breast cancer and use it to tie the disease up – forever. Join the Avon/Love Army of Women today at www.armyofwomen.org and be part of the countdown to the end of breast cancer.