Breast can­cer aware­ness is an im­por­tant tool for mak­ing sure you can bat­tle for a cure too.

Ed­i­tor’s note: As part of this week’s pink pa­per, I’ve de­cided to in­clude in this week’s lifestyle sec­tion a pair of sto­ries - one from North­west Ge­or­gia, one na­tion­ally - about breast can­cer treat­ments and aware­ness, along with this handy in­fo­graphic to

The Standard Journal - - FRONT PAGE - By LIND­SEY TAN­NER

CHICAGO (AP) — For­get the pink rib­bons. Spit­ting in a tube for sci­ence is what unites a grow­ing group of breast can­cer pa­tients tak­ing part in a unique project to ad­vance treat­ment for the dead­li­est form of the dis­ease.

For many of the 150,000- plus pa­tients na­tion­wide whose tu­mors have spread to bones, brains, lungs or other dis­tant or­gans, the hue herald­ing breast can­cer aware­ness and sur­vival each Oc­to­ber is a lit­tle too rosy. They know can­cer will likely kill them. And they've of­ten felt ne­glected by main­stream ad­vo­cacy and med­i­cal re­search.

But now they have a way to get in­volved, with a big new project that aims to gather enor­mous troves of in­for­ma­tion about their dis­eases in hopes of find­ing new and bet­ter ways of treat­ing pa­tients like them — women whose can­cer has spread, or metas­ta­sized, and left them nearly out of op­tions.

"Pa­tients want to live and we know that re­search is the way that we're go­ing to be able to live," said Beth Cald­well, a for­mer civil rights at­tor­ney in Seat­tle di­ag­nosed with metastatic dis­ease in 2014.

The idea is to gather molec­u­lar and ge­netic clues from as broad a group of metastatic breast can­cer pa­tients as pos­si­ble. With data from thou­sands of peo­ple, re­searchers think they will be bet­ter able tar­get treat­ments or come up with new ones by an­swer­ing im­por­tant ques­tions about the dis­ease. For ex­am­ple: Is there some­thing unique about tu­mors that spread to the brain, or that re­cur many years af­ter di­ag­no­sis? What al­lows a very few women to out­live oth­ers by many years de­spite the same prog­no­sis?

Most breast can­cer pa­tients are treated at cen­ters that don't do re­search on tu­mors, so par­tic­i­pat­ing in stud­ies at aca­demic med­i­cal cen­ters far from home is cum­ber­some at best. Pa­tients sick or dy­ing from their dis­ease face ad­di­tional hur­dles.

This project is dif­fer­ent. Pa­tients sign up online, mail in saliva kits for ge­netic test­ing, and al­low use of their tu­mor tis­sue sam­ples and med­i­cal records. Re­searchers use so­cial me­dia to keep them posted about progress, and pe­ri­od­i­cally in­vite par­tic­i­pants to visit the Cam­bridge, Mas­sachusetts, lab where their spec­i­mens are be­ing an­a­lyzed.

The Metastatic Breast Can­cer Project is run by sci­en­tists at Har­vard and Dana- Far­ber Can­cer In­sti­tute and was launched last Oc­to­ber with fund­ing from the Broad In­sti­tute of MIT and Har­vard, an independent non­profit group. Us­ing word of mouth and so­cial me­dia, it has al­ready en­rolled more than 2,600 pa­tients — a pace nearly un­heard of in med­i­cal re­search.

"I en­rolled from my re­cliner in my liv­ing room. I did my spit tube in bed," Cald­well said.

The mother of two turns 40 on Thurs­day, and can­cer has reached her brain, lungs, bones and liver. She tries to stay pos­i­tive, but Oc­to­ber "is a month where I just want to hide un­der the cov­ers and check out," Cald­well said. "I just don't want to be con­fronted with all this pink garbage."

Lara MacGre­gor, who runs a Louisville, Ken­tucky- based non­profit group for can­cer pa­tients, said she feels the same way.

"Ev­ery­thing about breast can­cer is about sur­vivors and beat­ing can­cer," MacGre­gor said. "And we're sit­ting in the wings say­ing, "I'm never go­ing to cel­e­brate the end of treat­ment.'"

MacGre­gor was preg­nant when di­ag­nosed with early-stage breast can­cer in 2007. She had both breasts re­moved plus chemo­ther­apy, and went on with her life think­ing she was cured un­til two years ago, when tests for nag­ging back pain re­vealed can­cer had re­turned and spread to her bones.

Now 39, MacGre­gor read about the project online, de­cided imme- di­ately to take part, and emailed dozens of friends and con­nec­tions who also signed on.

Be­fore she mailed her saliva kit, "my 8-year-old drew a pic­ture on the box and said, ' thanks for help­ing my mom,'" MacGre­gor said. "I hope that real data about real peo­ple is go­ing lead to bet­ter treat­ment op­tions," she said. "My life de­pends on it."

More than 200,000 peo­ple, mostly women, are di­ag­nosed with breast can­cer na­tion­wide each year. Most are di­ag­nosed when can­cer is at an early, po­ten­tially cur­able, stage. For about 6 per­cent, or 15,000 pa­tients, the dis­ease has al­ready spread at di­ag­no­sis.

And for about 30 per­cent of pa­tients di­ag­nosed with early-stage breast can­cer, the dis­ease will even­tu­ally re­cur in dis­tant parts of the body. The av­er­age sur­vival for pa­tients with metastatic dis­ease is about three years.

Ac­cord­ing to a 2014 anal­y­sis from an al­liance of breast can­cer ad­vo­cacy groups, less than 10 per­cent of govern­ment and non­profit groups' in­vest­ment in breast can­cer re­search in re­cent years went to study­ing metastatic dis­ease.

"Metastatic breast can­cer in gen­eral is an un­der­stud­ied area," says Mark Hurl­bert of the Breast Can­cer Re­search Foun­da­tion. "We don't know, for ex­am­ple, how the tu­mor has changed. Is it the same makeup as it was be­fore? Do cells have a dif­fer­ent molec- ular pro­file than can­cer that started first in the breast?"

By gath­er­ing large num­bers of tis­sue sam­ples and in­for­ma­tion about how the dis­eases pro­gresses in dif­fer­ent peo­ple, the project may be able to un­cover use­ful trends. It has pro­duced a few en­tic­ing clues al­ready, in­clud­ing small groups of pa­tients who've re­sponded un­usu­ally well to stan­dard chemo­ther­apy or to new im­munother­apy drugs — some have sur­vived for 10 years or more. The re­searchers hope DNA analy­ses will help ex­plain why and lead to treat­ments that will im­prove the odds for all pa­tients with the dis­ease.

Data will be posted on a spe­cial online site and with the Na­tional Can­cer In­sti­tute's ge­nomic data pro­gram — mak­ing it avail­able to other sci­en­tists and boost­ing the odds of find­ing bet­ter ways to treat pa­tients with metastatic dis­ease.

And proof that crowd­sourc­ing can draw thou­sands of pa­tients to med­i­cal re­search is an im­por­tant dis­cov­ery it­self, given how hard that can be, said Dr. Nikhil Wa­gle, a project leader and an as­sis­tant pro­fes­sor of medicine at Har­vard and DanaFar­ber.

"This project makes them feel em­pow­ered, makes them feel like they are mak­ing a dif­fer­ence — if not to help them­selves, then maybe the next gen­er­a­tion of pa­tients," Wa­gle said.

Timothy D. Easley/AP

Lara MacGre­gor, a par­tic­i­pant in a new crowd­sourc­ing project for metastatic breast can­cer re­search, poses for a photo as she un­der­goes treat­ment at the Nor­ton Can­cer Cen­ter in Louisville, Ky., on Wed­nes­day, Sept. 21, 2016. In just the first year, more than 2,600 af­fected pa­tients have en­rolled in the project, sub­mit­ting sam­ples and med­i­cal records by mail. "I hope that real data about real peo­ple is go­ing lead to bet­ter treat­ment op­tions," she says. "My life de­pends on it."

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