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Oral Cancer Prevention

#PapChat- A discussion

Join us for our #PapChat Instagram series as we talk with women about their Pap test experiences!

Daanis-Chosa

Daanis Chosa (Bois Forte Band of Chippewa), says she was nervous before her first Pap test at 18 because she didn’t know how it was going to go. In reality, “for the actual experience, they make you feel comfortable, give you time to get undressed and relax. Then it’s smooth sailing. The first time I thought it was going to hurt, but it didn’t. I remember feeling a pinch, but that was really it. There wasn’t any pain, instead, it felt like pressure.” #PapChat

Melanie-Plucinski

Regarding the stigma surrounding cervical cancer, Melanie Plucinski (Bad River Band of Lake Superior Chippewa, Ojibwe) feels that not talking about HPV is dangerous. “It is critical for us to remove that stigma. It can literally save lives. The majority of HPV diagnoses don’t lead to cancer if women are screened regularly. This is important to know so that women can maintain their health. I would be willing to talk to anyone about getting a Pap. Pap testing is not something to be afraid of.” #PapChat

Joy-Rivera

As AICAF’s Community Health Education Specialist, Joy Rivera (Haudenosaunee) knows the importance of talking about screening. “The more people who tell their stories, the easier it gets. Like with breast cancer screening, the more stories I hear in the community, the more it reminds me to stay on schedule. I appreciate people in a community who are willing to share their experiences, especially elders.” #PapChat

Amber-Cardinal

When it comes to giving advice to young women getting their first Pap tests, Amber Cardinal (Arikara, Hidatsa, and Ojibwa) thinks of what she would tell her younger sisters: “Make sure that you get them. As often as they are allowed. Be honest with your doctor. Go in with an open mind. Just do it, even if it’s awkward, uncomfortable or ‘the worst thing ever,’ you just gotta do it.” #PapChat

Laura-Roberts-BA

Leading AICAF’s cervical cancer programming, Health Programs Specialist Laura Roberts BA (Red Lake Ojibwe and Santee Dakota) has advice for women getting Pap tests: “Listen to your discomforts. If it doesn’t feel right between you and your doctor or clinic, you should look for something else. Pap tests are very private, so you should go to a clinic where you feel welcome.” #PapChat

Robert DesJarlait

July 29, 2019

When the emcee called for cancer survivors to come out to the floor at the 2013 Powwow for Hope, Robert DesJarlait (Red Lake Band of Chippewa) walked out to the shock of all those around him. “It was an emotional experience” Robert said, reflecting on his decision to go public for the first time about his cancer story.

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With steady encouragement and support from her husband, Lugene made the decision to address the decade long history of abnormal Pap results. She went to the doctor for a biopsy and found stage 2 cervical cancer in her uterus. Lugene initially went in for surgery to remove her cervix and uterus, but they found that cancer had rapidly spread. They needed to remove her ovaries and fallopian tubes as well. Today, Lugene is healthy and works as a patient advocate, educating young Native women on the importance of Pap tests.

“I was just too scared,” Lugene recalls, “I never thought there was a possibility that I could have cancer. I thought maybe it could have been an STD and I was too embarrassed to find out if that’s why it was abnormal.”

Lugene is sharing her story with the American Indian Cancer Foundation to reach other women out there who have had abnormal Pap results and are afraid. She says that for women who are scared, it’s important to talk about the possibilities with their healthcare provider. Otherwise, circumstances can get worse. She cautions: “Just because you ignore an abnormal test result, it doesn’t mean it’s not there. I ignored it for 11 years and it was still there – getting worse. It’s best to catch it early. The earlier you catch any disease, the better you are to fight it.”

Lugene feels she wouldn’t have been afraid to follow up on her abnormal result if she had had the right education beforehand. She advocates for stronger cervical cancer screening education for women. “It’s important for these young ladies to know how essential Pap tests are. It can save their lives. If they get an abnormal result, they need to have the education in place, in advance.”

For women to be more knowledgeable about their Pap test experience, she advises, “They need to connect with their healthcare provider and ask what’s next, what does that mean, and what is that test? You will find out that the test result is really nothing scary by asking about it. Ask your doctor, ‘How long does it take me to get the results of this test? What does abnormal mean? What are some reasonings that paps come back abnormal?’” Lugene encourages women to be their own advocate if the doctor is not being proactive or supportive enough.

Lugene has seen how the cancer burden has affected American Indians and urges men and women of all ages to prioritize screening. “In our Native communities, cancer runs pretty high. I watched a good friend’s mother die from cancer. I watched her waste away and I don’t want to see people die like that. I hope our people start listening and stop being scared of the unknown. We have to remember that we have to be here for our younger generations.”

Community-Education-and-outreach

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