Read the story of Sarina, breast cancer previvor

Read the story of Sarina, breast cancer previvor

by marlies|dekkers

“For every test that I had, I felt this fear and constant anxiety that they would find something. And I’m not going to be here for my little girls if they find something. Now I feel like whatever happens in life, I did what I could do, and I’m just going to live.”

My name is Sarina, I’m 37 and I’m a nurse practitioner. I have two daughters, and a husband since 12 years- 13 now! I mostly spend a lot of time with family and trying to do things in the community. That’s what had me telling my story a lot; I feel like if I’m trying to tell a patient what to do, I should be able to take my own advice, too. It has made me want to let people know that they are not alone.

I’ve always said that I would

I found out in 2018, I believe it was August 2018, that I had the BRCA gene. I got tested because I have a lot of family members that had breast cancer. At first it was just one aunt that had it, she was diagnosed with breast cancer at the age of 25. We didn’t know if she had the gene, so they didn’t think I needed to get tested. But then another family member, who I was very close to, was diagnosed with breast cancer in her early 40’s. She found out that she had the mutation, and even after all of the surgeries and going through chemo and radiation, she died from leukemia. As more people started having their diagnosis, and thinking of my grandmother who had ovarian cancer, they said “Okay maybe we should test you too, just in case”. We didn’t think it was going to be positive, but it was. Immediately a lot of emotions start rushing through. I was so close to all the family members that have been diagnosed and had gone through their surgeries and everything. I was thinking about what they went through, and I wanted to save my family from going through the same thing again with me, if I could.

I actually heard about BRCA when I was in nursing school. Automatically I was like “If I had that, I would have a mastectomy and I would do this and-” but when they told me I was positive it was like “Oh… it really is me”. I’ve always said that I would get a mastectomy, and now that it really was me, I was going to do it. When my results came back, I already had my mind made up.

Letting go

I knew I wanted to have reconstruction, and I knew a wonderful plastic surgeon who let me know that what I wanted to do at this point was really my decision- whether I wanted to do reconstruction or not. I was told and offered all the different techniques, and I was told what I was the best candidate for, so I was able to make an informed decision. I had the double mastectomy, then I went through tissue expanders and then I had those replaced with implants a few months later. Finally I’ve also done a more cosmetic nipple construction. I have such a good, trusting relationship with my surgeon, he basically held my hand throughout the entire process. I was very fortunate to have such a caring provider that was transparent and able to answer any questions. Even throughout the process he let me know how strong I was, and how I could do this, that it didn’t take anything away from me and that I was still beautiful. The whole reconstruction process I felt like there was somebody there -either from the nurses or from his staff- that made sure that I felt like a warrior, and not just treating it like any other diagnosis. They were helping me feel empowered throughout the whole thing.

At first I was worried about what I was letting go; there was this fear that I wouldn’t look the same, that I wasn’t going to be comfortable. But then I just started looking at myself in the mirror and trying to fall in love with the new version of me. I tried to embrace everything and make myself realize that these are mine. They might not be what I was born with, but they’re mine.

Looking back

Even through all the pain and suffering and the emotional roller coaster, I would still decide to get a mastectomy again. Because for every test that I had, I felt this fear and constant anxiety that they would find something. And I’m not going to be here for my little girls if they find something. Now I feel like whatever happens in life, I did what I could do, and I’m just going to live.

My mastectomy has changed my outlook on life; I have wanted to spend more time with family and friends and do more things to enjoy my time. We always make plans but things in life can change. It has helped me realize that I don’t know what the future holds, and I want to leave people with good memories of me.

Sisterhood

As far as the people around me, I think people just have to be mindful of what they say. I know a lot of people want to be supportive, but say things that they think are funny which are not funny at that time for us as previvors. Like “You just wanted a boob job”. The whole time I felt like I had ticking time bombs on my chest, and they might not go off, but I have to decide anyway. Do I want to leave them there and worry about it all the time or not? Some families and friends mean well, but they just remind you that you might not even really get breast cancer. We might not have the cancer diagnosis but I know I went through this whole survivor’s remorse. For some odd reason, whenever I got a call that my test was negative. I got sad. Happy, because it was negative, but sad that there was someone else that wasn’t fortunate enough to find it before cancer. You go through this whole ball of emotions and some people just feel like “Oh, you didn’t have a diagnosis, you’re fine”. But it’s OK to seek help, to get therapy or counseling. Know that there are people willing to support you if you let them in.

All they have to do is let us know that we’re still beautiful, and that they still love us for being ourselves. Just say “I love you” or “I appreciate you for being you” or “I respect your decision”, that’s all we need to hear. Luckily I had incredible support from my family and friends, they were amazing by keeping track of my appointments, talking to me when I couldn’t sleep at night, calling and texting me, make sure I still felt a part of what they were involved in and making sure I felt loved at all times. Though we are strong enough to get through this alone, it’s a blessing that I didn’t have to! And they all understood my decision, they said “We don’t want you to have surgery, but we would rather have you here. So we’re going to support you and your decision”. Of course they thought about the other family members that we had lost as well, and said “They want you to do it, too”.

There are some good support groups on Facebook and on Instagram too, there’s a huge BRCA community and mastectomy community. They are amazing women, and we vent to each other about some things that maybe a spouse might not understand- these women do. Sometimes you need that sisterhood to lift you up on a bad day if other people seem to not understand. They also let you know that it’s OK to be sad. It’s fine to cry, give it time. And then they are there to lift you back up. That’s the kind of support system that you need: it’s okay to get it out, not every day is going to be roses. But get back up. And if you’re not ready to get up today, then I’ll help you stand. That’s how those sisterhoods are.

 

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