Vivene lying down smiling bearing her port-a-cath scar

Vivene Uncovered: A Breast Recognition Project

Name: Vivene
Age When Diagnosed: 41
Breast Cancer Type: Inflammatory, invasive ductal carcinoma, HER 2 Positive
I Am A: Fighter, Breastie, Advocate

Before breast cancer, I had a positive relationship with my breasts. They were part of my identity and the way I viewed myself as a woman. I swam a lot, so I had strong pectoral muscles and firm tissue; I thought they were pretty good and in proportion to my body. After diagnosis my relationship was negative and I thought the full, dense tissue might have hidden the cancer. I felt my breasts were a source of trauma and pain and that breast cancer ruined my life. I felt men would no longer be attracted to me because of physical changes in the way I looked (shallow, I know). Really, it’s taken two years to reconnect with my breasts and see them positively again. 

I had a strong attachment to my hair. People would stop me on the street and compliment it. I was an early adopter of wearing natural hair for social and political reasons and it was a big part of my identity as a Black woman. Losing it was extremely traumatic and it definitely impacted my sense of self. My hair has grown back, but it is completely different and super straight so I’m struggling a little to know what hairstyle to have. 

The surgeon did a really excellent job (for having gone through invasive surgery, I felt the scarring could have been way worse and I was mentally trying to prepare for the worst scenario). What I really don’t like is my port-a-cath scar (my breast surgeon told me that he thought the surgeon who did the port-a-cath did a poor job and I agree!). I wasn’t a fan of the radiation tattoos and I really question whether this is necessary—to me it seems it is not patient-centric, it benefits the radiation professionals saving time to constantly take measurements. When I was first diagnosed, I felt I couldn’t think clearly. I went along with things at the beginning because I thought the experts knew best. I didn’t take active control and advocate for myself the way I do now. For example, I was referred to a hospital for treatment, that in hindsight, I would not have picked for several reasons. In the beginning everything moves so fast, but I would like other woman to know that the system is not necessarily patient-focused, so advocate for yourself strongly. 

I don’t think there is a lot of education about the cancers that affect Black women more; I don’t think there is understanding about the trauma and scarring that can occur through surgery and radiation. It’s been two years and every time people see my port-a-cath scar, they think I had the surgery last week! My radiation burns have still not fully healed and again, it’s been close to two years. I think we are not heard and many times our pain is not taken seriously—we are often prescribed drugs without being properly told about alternatives or side effects.

In general, I think we can be excluded from the discussion about breast cancer, it’s not necessarily deliberate but I think it is critical that be changed.

Uncovered: A Breast Recognition Project is a new resource that focuses on the breast cancer experience of Black women, through powerful imagery and real women’s stories that shine a light on the physical and emotional scars of breast cancer. Uncovered was created in collaboration with Michelle Audoin and developed in response to the significant underrepresentation of, and lack of support for, Black women and women of colour in the breast cancer community. Our hope is to educate all people, including healthcare providers, on the unique needs of Black women with breast cancer, so they are better equipped to support all the women they care for. Learn more about the resource here.

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