Ink Well­ness

Some­times, the best way to re­cover from a mas­tec­tomy is to get a tat­too

Newsweek - - NEWS - BY JES­SICA FIRGER @jess­firger

FOR MOST of her life, Heather Lee didn’t dwell on the ap­pear­ance of her breasts. They were sim­ply an oc­ca­sion­ally func­tional part of her anatomy; they fed her four chil­dren as new­borns and re­quired oc­ca­sional shop­ping for sar­to­rial sup­port. But af­ter be­ing di­ag­nosed with breast cancer in March 2015 and un­der­go­ing a dou­ble mas­tec­tomy, the 40-year-old re­cently di­vorced mother feared she’d be left with breasts that re­sem­bled “over­ripe av­o­ca­dos.”

“The way I ex­plained it to my friends is when I looked in the mir­ror I didn’t want to think, OK, those look al­most like boobs,” says Lee, a lawyer in Birm­ing­ham, Alabama. “I wanted to look

in the mir­ror and think, I’m a badass.”

Lee elected to have both breasts sur­gi­cally re­moved—one pro­phy­lac­ti­cally—in or­der to lower her risk for cancer re­cur­rence, as well as to avoid tak­ing Tamox­ifen for 10 years, a drug in­fa­mous for menopausal-like side ef­fects that can greatly di­min­ish a woman’s qual­ity of life af­ter cancer. The sur­geon also told her a dou­ble mas­tec­tomy would mean “bet­ter sym­me­try,” she says. But nip­ple-spar­ing surgery wasn’t an op­tion for Lee. The mar­gins of her breast biopsy showed ma­lig­nant cells were near the edge, so pre­serv­ing some of the tis­sue might make it more likely that the cancer could re­turn. That meant sav­ing the nip­ples and are­o­las for re­con­struc­tion—a now rel­a­tively com­mon prac­tice—would be too risky.

Lee says she opted for breast im­plants that would “look nor­mal in clothes and a swim­suit.” But she didn’t re­turn for the fol­low-up pro­ce­dure, when a cos­metic sur­geon ma­nip­u­lates the skin on the breast mounds to cre­ate the ap­pear­ance of nip­ples. She also skipped the med­i­cal tat­toos, the fi­nal touch in breast re­con­struc­tion to give pig­ment to the nip­ple area and cre­ate the ap­pear­ance of are­o­las. Fake nip­ples didn’t ap­peal to Lee, and a lit­tle Googling prompted her to de­cide she wanted real ink.

Most breast cancer pa­tients who un­dergo a mas­tec­tomy are told by their doc­tors that they have just two op­tions once treat­ment and surgery are com­pleted: re­con­struc­tion or no re­con­struc­tion. But when Lee hap­pened upon David Allen, a Chicago-based tat­too artist, she found a third: mas­tec­tomy tat­toos. Allen, who has de­vel­oped an al­most cult-like fol­low­ing among breast cancer sur­vivors, had an en­tire page on his web­site filled with photos of women’s breasts cov­ered with scar-con­ceal­ing tat­toos. He’s one of just a hand­ful of tat­too artists in the U.S. help­ing women re­claim their bod­ies and their lives af­ter breast cancer in a less con­ven­tional and less med­i­cal­ized way.

Many people get tat­toos to mark a mile­stone: the birth of a child, the death of a loved one, an an­niver­sary and, of course, the end of a se­ri­ous and life-threat­en­ing ill­ness. But for breast cancer sur­vivors, mas­tec­tomy tat­toos can be far more pow­er­ful. They not only sym­bol­ize an es­cape from death, but also con­ceal scars and min­i­mize the ap­pear­ance of dis­fig­ure­ment. If done well, they can make look­ing in the mir­ror a pos­i­tive ex­pe­ri­ence once again, or at least more bear­able.

Lee loved Allen’s il­lus­tra­tions. They were of flow­ers but not the cloy­ing, trashy va­ri­ety. His were mono­tone slate-gray, pointil­list in de­tail, al­most ethe­real. The tat­toos swooped around the fold of the breasts and lay on the area where nip­ples would be. In many of the photos, it was nearly im­pos­si­ble to make out any trace of the in­ci­sion scars. Lee reached out right away and be­gan ex­chang­ing emails with Allen’s as­sis­tant.

“Noth­ing I saw ever seemed right un­til I saw some pictures of real tat­toos,” says Lee, who trav­eled to Chicago with a friend in Oc­to­ber for her tat­toos. The South­erner set­tled on mag­no­lias for a flower de­sign like the ones her grand­par­ents used to have in their front yard. “I think they’re beau­ti­ful in­stead of see­ing scars and think­ing about what I’ve been through and the pain.”

Allen re­cently pub­lished an es­say in JAMA de­tail­ing his tat­too process for mas­tec­tomy clients. He chose to tell his story in a med­i­cal journal rather than a main­stream publication be­cause he hopes on­col­o­gists and sur­geons will come to see mas­tec­tomy tat­toos as a vi­able op­tion for their pa­tients. But Allen, 37 years old, says the tat­too in­dus­try needs to be ed­u­cated as well by doc­tors; breast cancer sur­vivors have unique phys­i­cal and psy­cho­log­i­cal needs that re­quire an artist have a good bed­side man­ner and some med­i­cal knowl­edge.

Allen, who has a back­ground in graphic art, stum­bled into this work in 2011, when a teacher in New York City who had un­der­gone a dou­ble mas­tec­tomy ap­proached him. In ad­di­tion to the weighty na­ture of the as­sign­ment, he was wor­ried about the health and safety risks that could arise for the client. Scar tis­sue and skin ex­posed to ra­di­a­tion is far more del­i­cate and re­acts dif­fer­ently to tat­too ink. “I wasn’t quite sure the best tech­nique, and there’s not a lot of in­for­ma­tion out there. I just tried to avoid it, but she was per­sis­tent,” he says. “This is a rough area to tat­too.”

Six years have passed, and Allen has left his mark on some 70 breast cancer sur­vivors, with many women trav­el­ing from over­seas to see


him, in­clud­ing women from the U.K., Ar­gentina and In­dia. Most of the women he works on have had a sin­gle or dou­ble mas­tec­tomy with im­plants. But there are some women who stopped at mas­tec­tomy and sim­ply want to con­ceal the sur­gi­cal scars on their chest walls. Most of the women who seek out Allen are over 50 and don’t have any other body art. That may seem old for procur­ing a first tat­too un­til one re­mem­bers the me­dian age for a breast cancer di­ag­no­sis is around 62, ac­cord­ing to data from the U.S. Cen­ters for Dis­ease Con­trol and Preven­tion.

It helps Allen’s cause that rates of breast cancer re­con­struc­tive surgery con­tinue to rise. A re­port re­leased in 2016 by the Amer­i­can So­ci­ety of Plas­tic Sur­geons found the num­ber of pa­tients who opt for re­con­struc­tive surgery af­ter breast cancer treat­ment has in­creased 35 per­cent be­tween 2000 and 2012. Doc­tors to­day are also much more likely to rec­om­mend mas­tec­tomy over breast-con­serv­ing surgery (lumpec­tomy) both for med­i­cal and cos­metic rea­sons. (In many in­stances, a sur­geon can im­prove a pa­tient’s sil­hou­ette to her lik­ing, whether that means re­con­struct­ing breasts that are larger than the orig­i­nals or re­vers­ing the droop­i­ness that comes with child­bear­ing and age.)

Ad­di­tion­ally, un­der­go­ing re­con­struc­tive surgery with im­plants is no longer con­sid­ered merely vain or a lux­ury. Health pol­icy leg­is­la­tion passed nearly 20 years ago re­quires health in­sur­ance com­pa­nies pay for re­con­struc­tive surgery as part of rou­tine treat­ment for the dis­ease. Ge­netic

test­ing, such as the one that can de­tect mu­ta­tions to the BRCA1 and BRCA2 genes that in­di­cate higher risk for cer­tain types of breast cancer, mean more young women are go­ing un­der the knife for preven­tion. Some say rates of pro­phy­lac­tic dou­ble mas­tec­tomy in­creased thanks to what many call the “An­gelina Jolie ef­fect.” In 2013, the actress and direc­tor went pub­lic with her de­ci­sion to un­dergo a pre­ven­tive mas­tec­tomy af­ter learn­ing she car­ried BRCA mu­ta­tions, and she in­spired many other young women with higher ge­netic risk for cancer to do the same. Younger women can be es­pe­cially con­cerned about scar vis­i­bil­ity and of­ten worry the re­con­structed breasts will never look nor­mal. The so­lu­tion, per­haps, is to make them some­thing en­tirely dif­fer­ent. It also helps that body art has gone main­stream. Tat­toos, like breast cancer, are no longer a taboo topic.

Women find Allen on the in­ter­net but also through (Per­sonal Ink), a non­profit founded in 2013 that matches breast cancer sur­vivors with tat­too artists who have ex­pe­ri­ence with mas­tec­tomy tat­toos. The or­ga­ni­za­tion, founded by Noel Franus, started off as a Pin­ter­est page. Franus has never had tat­toos, cancer or breasts, but he was in­spired af­ter his sis­ter-in­law un­der­went breast cancer surgery and be­gan so­lic­it­ing her fam­ily mem­bers for ideas of what she could have tat­tooed on her new breasts other than trompe l’oeil nip­ples. “No one was talk­ing about it on­line un­less you were a huge tat­too en­thu­si­ast,” says Franus. “You might find one or two artists inside the fo­rum, but what about the mother in Topeka or the grand­mother who lives in ru­ral Texas?”

The tat­too artists that are part of his net­work do work in-kind on Days, held once a year in Oc­to­ber since 2014. So far, tat­too shops in 25 cities have par­tic­i­pated, and col­lec­tively they’ve inked some 175 breast cancer sur­vivors. The or­ga­ni­za­tion also cov­ers the cost of mas­tec­tomy tat­toos on a case-by­case ba­sis and pays the full cost. (De­pend­ing on the com­plex­ity and scale of the art, a mas­tec­tomy tat­too can cost any­where from $200 to more than $2,000.) There are cur­rently 1,500 breast cancer sur­vivors on’s wait­list.

The so­lu­tion to meet this grow­ing de­mand, Franus says, is to find more tat­too artists interested in the work, es­pe­cially in other coun­tries, since many sur­vivors who con­tact the or­ga­ni­za­tion don’t live in the U.S. But get­ting tat­tooists ready for the task is chal­leng­ing. “We still need more trained artists,” says Franus. “It in­volves sit­ting down and work­ing side-by-side with an artist who knows how to do this work.”

It also means en­cour­ag­ing doc­tors and sur­geons to be ac­tively in­volved and make mas­tec­tomy tat­toos an op­tion in the re­cov­ery process. Allen has made in­roads to the med­i­cal community. He says he now reg­u­larly talks to plas­tic sur­geons by phone, some­times even be­fore a pa­tient goes un­der the knife. The va­ri­ety of sur­gi­cal tech­niques can in­flu­ence the qual­ity of tat­too art, so plan­ning ahead al­lows the client to re­ceive his best work. “I need to know as much as pos­si­ble,” he says. “I need to know if they had flap surgery or if the sur­geon pulled from the latis­simus dorsi.”

Allen is also highly se­lec­tive about which clients to take on and when. For ex­am­ple, he won’t work with a woman un­less it’s been a year since her surgery. That’s not only for med­i­cal rea­sons but also be­cause he has found that sur­vivors are of­ten not emo­tion­ally ready for the process any ear­lier.

A few years ago, a woman came to see Allen. It had been sev­eral years since she’d had surgery, and she was ready. Allen was pre­par­ing to ap­ply the sten­cil on her breasts to cre­ate the out­line for her tat­too, but when he be­gan to touch the woman, she started to weep. She told him her hus­band had left her be­cause of her ill­ness, and she hadn’t been close to a man in years. Allen stopped his work. In­stead, they sat at his shop and talked for two hours. “I wanted to hear her story,” he says. “I wanted her to know that the emo­tion she was feel­ing was more im­por­tant than get­ting a tat­too.” The client re­turned three months later for her tatt.


COS­METIC POST-SURGERY: (Per­sonal Ink) is a non­profit col­lec­tive that matches breast cancer sur­vivors with tat­too artists who have ex­pe­ri­ence with mas­tec­tomy tat­toos.

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