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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 (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


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


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


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


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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Joni shared with us a lot of the thoughts and feelings she had 20 years ago when she had her surgery.

Choosing to have her uterus removed was a difficult decision, especially since Joni and her husband had not yet decided if they were finished having children. Although the procedure would prevent future pregnancies, Joni elected to have the hysterectomy since she had already birthed a daughter and twin boys. Being unable to have children brought up a lot of difficult emotions for her. In the years since the procedure, Joni has found out that she may have had other options at the time.

Joni encourages other women to develop a strong relationship with their provider and have an active voice in their cervical cancer treatments. One regret that she has is that she did not educate herself more about cervical cancer treatments. Now that she has three adult children, she wishes that she would have had the opportunity to have more kids.

Joni’s diagnosis occurred during a time where not much was known about the links between HPV and cervical cancer. At first, Joni questioned who had first contracted HPV and spread it to whom. Questions of infidelity crept into her mind until she learned that HPV is extremely common in men and women and that HPV incidence might have occurred years prior to her marriage. In fact, 80-90% of people come into contact with HPV at some point in their life. Instead of unfairly blaming her husband, she made steps to protect their future generations from HPV-related cancers. She had honest conversations with her children about the importance of caring for your body: “I’ve been open with my children since early on. I taught my daughter to go to the OB-GYN regularly and my sons and daughter made the choice to get the HPV vaccine themselves.”

At the start of her cervical cancer journey, Joni made a promise to herself: “if I survive this, I will lead a more courageous life.” Today, she sings lead in a Native blues band Bluedog. Bluedog’s music gives voice to the struggles of Native people and celebrates the resilience of our people. With the knowledge that Native women experience higher rates of cervical cancer than white women, Joni now uses her voice to advocate for cervical cancer education and regular screening. She urges other women to get screened regularly and to use your voice for those who have gone through a cervical cancer journey: “if you go through it, please be an advocate. With your support, another woman might not have to.”


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