Precious

Age at interview: 65
Outline:

Precious, age 65, was first diagnosed with Stage III breast cancer in 1989, and was diagnosed with metastatic breast cancer in 2014. After her initial diagnosis, she had a mastectomy, radiation and reconstructive surgery. Since her diagnosis of metastatic breast cancer, she has been on immunotherapy.

Background:

Precious is a single, retired African American woman who lives in the suburbs of a mid-Atlantic city.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Precious has a long history with breast cancer; she had her first diagnosis of Stage III breast cancer in 1989 after feeling a lump in her breast. At this time, she had a mastectomy, 6 months of chemotherapy and six weeks of radiation, and reconstructive surgery a year later. In 2014, she went to the emergency room for pneumonia and a chest X-ray revealed that she had Stage IV metastatic breast cancer. She is now in her fifth year living with metastatic breast cancer and is on immunotherapy. It makes her sad that with metastatic disease she will never get to ring the bell to signify finishing treatment. She does try to remember that metastatic disease is not necessarily a death sentence, “even though you are terminal, you can live your life to the fullest every day.” One of the things that she finds to be most difficult at the moment is uncertainty, such as when she is waiting for PET scan results.

 

Precious was working full-time when she got her most recent diagnosis, but side effects of the chemotherapy meant that she had to go on disability, which was financially difficult. She was able to use supplemental insurance and get subsidies through drug companies to meet her needs during the two-year gap between going on disability and being eligible for Medicare. Metastatic cancer has caused considerable fatigue for her, and even though she is a “high energy person” she now often just needs to do less, and she sometimes needs to just pick one thing to do each day and do that. Diarrhea is a troubling side effect of the medication as is hair thinning.

 

There is a considerable history of breast cancer in Precious’ family. Almost all of her cousins have died after a breast cancer diagnosis, and her older sister has recently been diagnosed with early stage breast cancer. Precious has however been tested for a mutation on her BRCA genes and it didn’t show anything, nor did her cousins’ testing. Precious’ mother also had a lumpectomy and radiation for localized breast cancer at age 88. Precious is an advocate for breast cancer education, and wants to help others have better outcomes than her family has had. She is motivated by the need for education on this disease in the African American community. Precious is a “committed Christian,” and her church and her faith are very important to her.

 

Precious feels that people don’t understand metastatic breast cancer, and that they don’t understand that they can’t tell how she is doing by looking at her. Being a part of her support group has helped her to know what to ask her provider about, and how to advocate for herself in the health system, and to deal with “the maze of metastatic disease.” She has “never been closed mouth about her disease,” however, with metastatic cancer, she had some difficulties with having everybody know that she’s dying. Precious feels that attitude is a huge part of surviving, and her faith is key to this. She urges people not to give into their disease – do anything that you can to take control. She says that when you have a tragedy in your life you “can become bitter or better,” and she seeks to be better through her relationship with God.

 

Precious leaves her job when chemotherapy makes it difficult for her to work.

Precious leaves her job when chemotherapy makes it difficult for her to work.

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So I started my journey with breast cancer over again. And at that time, they, you know, started chemotherapy. They gave me two years to live then. 30 years ago it was three years or two years or whatever. This time, it was two years. And I, at that time, was working full time with [Organization] and I, you know, had a lovely job as a nurse consultant. And I thought I was going to continue to work there at least until I was my full retirement age. But the Lord had another plan. And so, I started having problems in terms of-- because of the chemotherapy, I couldn't concentrate as well. I was constantly tired. Fatigue was a major issue. I had chronic diarrhea. I mean just side effects of the chemotherapy, basically. And so, I just had to go on disability. And that was a challenge. Because you know I live alone and I'm single. And I'm my, you know, my sole source of support. So, I was concerned about my finances. But in any case, you know, the Lord prevailed, and I was able to go on disability. The only thing about disability is that, in terms of Medicare, you aren't eligible for Medicare until you've been on disability for two years. And so, I was a little concerned about my insurance issues and whatnot. But two years went by, and I was able to apply for Medicare. And so you know, things came together. And so now, I'm enjoying retirement. And this will be my fifth year with living with breast cancer.

 

Precious says her family chooses not to talk about disease.

Precious says her family chooses not to talk about disease.

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Only times my family has talked about the disease itself is if I'm getting ready to have a test or something like that, and I've asked for prayer about it. But as a rule, it's never brought up as a subject to talk about unless I was talking with the person who actually had the disease. And we'll compare notes or something like that. But most of them have all, as I said, they've all died. But when they were living, we didn't talk a lot about the disease. We compared notes on occasion. But no, we were pretty much distant in terms of talking about the disease. We chose not to.

 

Precious described the support she felt from fellow church members.

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Precious described the support she felt from fellow church members.

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The number one thing that I felt was support … my church family. They’re there for me. They pray for me. I can call anybody there and they can talk to me.

 

Precious is keen to share what she has learned from her own experience.

Precious is keen to share what she has learned from her own experience.

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I have friends now who have breast cancer, and they don't want anybody to know. They don't even want to talk with me about it. You know, it's like they, that's the last thing they want to do, is to be around anybody else that has breast cancer. But then I have others who want to learn more, who want to be a part of support groups, who want to advocate and whatnot. So, everybody reacts differently. But I've always been kind of like, outspoken about it. And I want to, you know, have people know because I want to be a help. Because I want people not to make mistakes that I made or to try to learn from my experiences with it or whatever.

 

Precious describes declining to be cared for by an inept nurse. 

Precious describes declining to be cared for by an inept nurse. 

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One time, one nurse gave me the injection in each butt. And I was-- my behind as painful for a week. And I like, I said, I don't remember-- I think I wrote her name down, because I was like, I don't want her ever to give me another needle.

 

Precious speaks out about hereditary breast cancer in African American communities.

Precious speaks out about hereditary breast cancer in African American communities.

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But you know because of breast cancer, I'm very active in advocating for breast cancer, working for [organization] as an advocate for them, and teaching people about breast cancer and the difference between metastatic and you know I guess I call it regular breast cancer, and just how families need to get mammograms, especially if it runs in your family and whatnot. And so, I hope I'm doing my part to help others who are struggling with this disease to you know have a better outcome than our family has.

 

Precious says sharing her story has given her a purpose.

Precious says sharing her story has given her a purpose.

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I'll be glad to go and share my story about metastatic disease. Because, you know, it's given to me a purpose. And so, I feel like everybody has a purpose for living. And so mine, right now, is to educate and advocate about breast cancer.

 

Precious advises providers to “let the patient take the pace.”

Precious advises providers to “let the patient take the pace.”

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When I go to the dentist, I don't want them to tell me every detail of what they're getting ready to do to me. But that's me. Some people want every little detail about that. So you just have to learn your patients and let them guide you into what they want to know or don't want to know about their medical condition.

 

Precious finds it helpful to both receive and to give in her cancer support group.

Precious finds it helpful to both receive and to give in her cancer support group.

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It's just funny how things happen. I was just reading a neighborhood paper. And in the paper, there was a person who had a big article talking about metastatic breast cancer. And she was a part of an organization called [organization]. And I read her contact information in the article, contacted her at that time and, because I knew, really, nothing about metastatic, even though I went to the doctor by that time, and, you know, I was learning. But I needed support and talk to people-- real people-- that already had it. And she was like perfect for me-- a black woman. 

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And I’m, it just has really helped me. It's helped me. For instance, when I talk to other people at the meetings and I hear what they're saying and what they're asking their providers, that helped me to know what to ask my provider. And that's helped me, as well. Because even though my provider is excellent, I have to kind of advocate for myself. And I said, don't you think it's time for me to have this test or that test, or don't you think we need to try this or that? And that has helped me. Because he wasn’t, you know, for instance, my PET scans. That's-that’s why I started having them more regularly. And that's when they started seeing the progression. And so, I'm on top of that because [organization] has helped me to advocate for myself when I go to the doctor and be more aggressive in being a part of my, my care. And so I am forever indebted to organizations like [organization].