Organization helps patients live and thrive


National Minority Cancer Awareness Week April 15 - 21

ANCHORAGE, Alaska - A group of dedicated Native women has created a nationwide nonprofit organization to ensure that indigenous cancer patients and their families get the help and services they need to survive the devastating disease and have a good life afterward.

The Office of Native Cancer Survivorship is a grass-roots organization that formed officially in 2003, but the women involved had previous years of cancer-related work experience.

According to ONCS's mission statement, the organization is dedicated to improving the lives of American Indians and Alaska Natives facing cancer diagnoses by providing access to cancer-related services and support so that patients can become survivors and live quality lives. Most American Indian and Alaska Native cancer patients live in isolated areas where services are hard to find.

ONCS provides patients and their families with information about advocacy and support groups in their areas, education, reading materials, travel and lodging help, connections to a prosthesis and wig bank service, resource centers, including those that provide financial aid, and other resources.

''This is actually a spinoff of a couple of other Native people's survivors' projects or survivors' grants that had started, and it ended up evolving into a national program that could meet those unmet needs, and would be a little more stable than those transitional-type programs often out there in Native communities that operate on grants,'' said Alisa Gilbert, Tiwa, ONCS' founder and executive director.

Most of the women involved in ONCS were together at a cancer survivors' conference years ago where ''the light came on for many of us, and we've just been working in it ever since,'' Gilbert said.

The women are listed on ONCS's Web site and comprise the organization's board of directors. Many of them are cancer survivors like Gilbert, who was diagnosed with breast cancer at age 31. Also like Gilbert, who is the district executive director for the American Cancer Society in Alaska, the women hold regular paying jobs and serve ONCS on a volunteer basis.

The organization is supported by donations and is sponsored by the Lance Armstrong Foundation, The Mayo Clinic, the Open Meadows Foundation, the Echoing Green Foundation and the National Patient Advocate Foundation, among others.

ONCS is headquartered in Anchorage and operates out of Gilbert's home office.

''When that call comes through, generally, it's somebody in need. We'll do a quick little intake and try to figure out what services will fit this person best and go from there.

''For example, if there's someone down in Arizona that needs assistance, I can easily pick up the phone and call Patti King [an ONCS director and director of the Gila River Cancer Support Group] who is right down there in that area and she can help,'' Gilbert said.

ONCS partners with other organizations all over the country to share resources.

''We want to make sure that people have some sort of safety net they can actually utilize, whether it's a travel issue or needing lodging or additional support or getting more educational information about a diagnosis. Usually, the calls we get are people wanting a bit more information. They've been recently diagnosed and they aren't 100 percent sure of where they're going or what they should be doing, and oftentimes it's their relative that calls,'' Gilbert said.

The ONCS was fortunate in drawing from such an energized group of health advocates, Gilbert said, but it can be a model for other organizations.

''You constantly hear in Indian country that this is so overwhelming. 'How are we going to do anything? Nothing's being done and there aren't services to help us.' Well, if there aren't services to help us, you need to ask yourself, 'Why not; and why am I not doing something about it?' Because that's how things change. People get involved if they really want things to change. Cancer is just such a huge burden on the Native population that people really have to look at it in so many different lights. It has to change. Everybody has a role,'' Gilbert said.

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Hope for cancer patients

Survivor has two healthy children, normal life

Alisa Gilbert always knew she was meant to help others. Surviving breast cancer showed her how.

Now in her mid-40s, Gilbert is the founder and executive director of the Office of Native Cancer Survivorship, a national nonprofit organization that provides support services to cancer patients.

At age 31, Gilbert was a cancer patient herself.

''I had a bilateral mastectomy when I was 31. I had chemotherapy and treatments and surgeries and such, and after that I ended up getting pregnant and having my first child, literally back to back with that treatment, and it was just an eye-opener. Everything that happened, all the people who came into my life at that time, really made such a difference and raised my awareness across the board to the issues that people face all over the country,'' Gilbert said.

The experience of surviving cancer led directly to her role as an activist and advocate for cancer patients and to the creation of ONCS.

''I've always been the kind of person that thought, 'I just know that I can make a difference.' It's not too hard to figure out what you need to do to actually make things change, so I've just been involved since then,'' Gilbert said.

Getting pregnant - let alone getting pregnant so soon after being treated for cancer - was a shock both to Gilbert and her doctors. Gilbert had gone through menopause during her cancer treatment; the doctors assumed she was incapable of getting pregnant and didn't supply her with birth control.

''I think my doctors were more terrified than anything because the hormones in your body can wreak all kinds of havoc and they weren't sure at the time if the pregnancy would bring on an occurrence of the disease, so they were really more concerned because they didn't think there would be any children,'' Gilbert said.

Gilbert said she was in ''a kind of shock'' at being pregnant.

''My husband and I hadn't planned it. My son was born on Christmas and it was pretty interesting; and not too long after that, our second child was born, too. We've got four children - two from my husband's previous marriage and the two we've had. And after my second son was born, the doctors said, 'Absolutely not another one. This is too dangerous,''' Gilbert said.

Not very many studies have been done about breast cancer survivors having children, Gilbert said.

''There are so many survivor-related issues when you put all the data together; in my case, the fact of being 31, the fact of having an aggressive type of cancer and a tumor size that was humungous and had already metastasized, and they were treating me to shrink the tumor before surgery, which was pretty common back then but not practiced so much now. The bilateral mastectomy was not an option: that was the recommended therapy. If you put all that together and then the thought of getting pregnant not once but twice and the thought that re-occurrence could happen due to the hormone production rate during pregnancy. The last thing you want is to have somebody get pregnant and have cancer re-occur and they're not around long enough to see their children grow up,'' Gilbert said.

Against those odds, everything has turned out miraculously well for Gilbert and her family. She gave birth to two healthy children, has remained cancer-free and has dedicated her energy to helping others survive cancer and live healthy, productive lives.

''I've been doing great. My kids are healthy. We're very fortunate, we're very blessed,'' Gilbert said.