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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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“We were like deer in the headlights,” she said. Her family had just lost her mother-in-law to breast cancer after a long courageous fight. Gerlinda went through the holiday weekend and did not tell anyone about the terrifying phone call she received. Her daughters rodeoed and the family enjoyed celebrating the Fourth of July.

The follow-up included another mammogram in Billings. The results from that mammogram were not good. The doctor said, “I think you have breast cancer, you need a strong support network, we need to take care of this as soon as we can.” “Where did I go wrong?” she asked herself. Gerlinda is the kind of friend who reminds her friends and family to make healthy choices. She works hard to be the healthiest she can be; exercises at least 4 times a week, maintain a healthy weight, breastfed all three of her babies, takes vitamins, eats her fruits and veggies, she does not drink alcohol and had no family history of breast cancer. A biopsy was scheduled for the first week in August. Gerlinda did not know how to tell her family.

She finally told her older sister and her sister told her mother who then, told the rest of her siblings. Gerlinda comes from a large family, seven children in total. In the Crow Culture, out of respect, women do not tell their brothers about personal health issues, especially something as personal as breast cancer. She took her time to tell her daughters, “I wanted to have hope in my voice when I told them and to be strong for them. I prayed about it. I needed God there with me.” The girls all reacted differently with anger, sadness, and optimism. Her youngest daughter said, “I will pray for you Mom, you got this.” When Gerlinda told her close friends, it was just as hard. “I could not say cancer, I said the ‘c-word’. I asked them to say the word cancer with me.”

Gerlinda came out of the double biopsy and saw all of her family in the waiting room, even her brothers. “At that moment, when I saw everyone had my back, I knew I was going to be alright. My siblings and family are my strength.” She was optimistic and told her family not to be sad, it still might not be cancer. However, the biopsies confirmed two early stages (in situ) breast cancer sites that genetic tests showed were not inherited. Her family wanted to help and knew she would need financial assistance.

Financial complications did arise, which pushed back treatment until October. The family held a fun run with proceeds going towards helping Gerlinda during treatment. Self-advocacy took on a whole new meaning for Gerlinda, she was fighting for her life. She was accepted into the Montana Breast and Cervical Cancer Program and qualified for Medicaid. The surgery went well and she was discharged on a Sunday afternoon. They gave her a prescription for pain medications but the Indian Health Service pharmacy was not open to fill that prescription. The money her family had raised from the fun run paid for the prescription and two days of lodging and food in Billings. Her doctor wanted her close by in case of complications.

It has been one year since Gerlinda’s surgery of removing both breasts. She is doing well and can be found loving life and cheering on her girls. Her oldest daughter Charine shared, “I see my Mom living her life happier, healthier and loving. She tells everyone to get their yearly checks and gets on every one of our family and friends to be healthy.” There are two pieces of advice Gerlinda would like to share with other American Indian and Alaska Native Women: 1. Listen to your body, nobody knows it better than you. 2. Be proactive in your healthcare you deserve.

Community-Education-and-outreach

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