019: BRCA Chatter and Previvor Conversations
Updated: Jun 22, 2021
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Tammey talks with Christen Williams about BRCA gene mutations, the tough decisions that are required when you have the news that you are predisposed to breast cancer, but don't have a cancer diagnosis, and what it means to be a previvor.
After losing her mom to ovarian cancer, Christen found out that she had the BRCA gene mutation at the age of 27. She started a Vidoe Blog where she takes us with her on her journey sharing her steps to stay alive, live life to the fullest, and raise awareness.
Topics in this Episode:
What is BRCA
Making Cancer Decisions without the Cancer Diagnosis
What am I waiting for?
Living by the Numbers
Mental Health Tips
Suddenly Aware of Your Own Mortality
Try to Think of It as a Wonderful Opportunity
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Tammey Grable-Woodford: Hello, and welcome back to Your Killer Life. I'm your host, Tammey Grable-Woodford, and I am so glad you're joining us again for another amazing episode. I have a guest today, and the topic we're covering is really, really important. It's one that we, I actually don't know a lot about, and I'm going to. Just come out and say, but it's a super important topic that is something that is discussed quite often. I think that there's probably a lot of misinformation, but it was also something that was really raised to a high level of attention and awareness with some celebrities that had this diagnosis. So as we've talked about before, on Your Killer Life, more than one type of breast cancer, and today, today we have with us Christen Williams, and she is with BRCA chatter.
She is a video blogger. Oh my goodness, her YouTube channel is amazing. You gotta check it out. And we are going to be talking about BRCA today. So Kristen, thank you so much for joining me on the, Your Killer Life podcast.
Christen William: Thank you so much for having me. Thank you.
Tammey Grable-Woodford: I can not wait to dig into your story because you have, you are, first of all, the way that you have just tackled this diagnosis with humor, with candor, with openness, awareness, and you just like kicked into advocacy mode, which is absolutely amazing. So tell us a little bit about how you discovered it, that you had BRCA, and what the heck BRCA is for anyone listening that doesn't know.
Christen William: What does it mean? Yeah. I, first of all, thank you. I love the fact that people notice me for my humor around it. Cause so it can be a really depressing thing. Yeah. And it gets people down. And so many people contact me saying that I make them laugh, and I'm like, that's great because you know, if you can find any positive in bad situations, then it just makes it so much easier to cope with. So thank you.
But I lost my mum to ovarian cancer. She, um, five years ago, or just over five years ago. And because she was at quite a young age, she was 62 when she died; they tested her for this genetic mutation. Cause they said, it was quite unusual, but. In terms of the rest of our family, we didn't have much cancer.
So it was quite a shock to find out. The only other person who had cancer was my great Auntie Marge, and she lived until she was like 94. It wasn't like, cause a lot of, a lot of women and men kind of say, oh yeah, it runs in the family. I've always been worried about it, but it was a bit of a shock for us.
And she found out just before she died, three weeks before she died. So she never found out the rest of the family. And I went for testing almost straight away, and they were trying to put me off and said, this is a bit soon. You just lost your mom. And I was like, just tell me, I assume I have it anyway. Um, and unfortunately, I did.
So that was kind of like how I found out about it. And really at the time I didn't, I didn't know anybody. I didn't know anybody who'd been through it. It was a very unusual thing. You know, my friends are absolutely brilliant, but it's a very hard thing to support somebody because you just, I think a lot of people are stumped, they don't know what to say.
They don't know what advice to give. So yeah, I found it quite a bit of a lonely place, really. So that is why I started raising my own awareness just so that I could help other young women in my situation, really. So, shall I talk a little bit about what is and what it means?
Tammey Grable-Woodford: Yes, please.
What is BRCA?
Christen William: The actual BRCA B R C A stands for Breast Cancer, but that's a little bit confusing because it doesn't just affect the breasts.
So as I said, my mum died of ovarian cancer, so there were links to breast, ovarian, and then with BRCA2, which is what I have. That are links to pancreatic, I believe, and there's some suggestions about skin melanomas. Um, and it really depends where you read. I read a very long list of suspected cancers the other day, which kind of scared me a little bit.
But the BRCA gene everybody has, and that's really important. So when people say I have BRCA, everybody has BRCA. What people mean is I have a BRCA mutation. So our BRCA genes that everybody has in their body, they are really useful, and they basically work as tumor suppressors. So whenever there's a hint of something going wrong, your BRCA gene comes along and sorts things out.
That's the simple way of putting it. So they're protector genes, basically. If that gene is then mutated, you are more susceptible to getting these types of cancers. So it doesn't mean you're going to get them, but the chances are much, much higher. For me, BRCA2, I had, depending on what stats you look at, but I had up to 85% chance, lifetime chance of developing breast cancer.
So pretty scary. And then ovarian, I think it is between 10 and 20%. And it's a little bit higher for BRCA1. And I guess one of the sad and unfortunate things is the cancers that are associated with the BRCA genes usually are metastatic. So they've spread quite quickly. So, yeah, it's and the younger I've read this somewhere, I don't know, you might be able to clarify this, but the younger you get it, the more quickly it will spread because you're, especially with breast cancer, your boobs are less dense. Is that right? So as you get older, they change shape, and things don't spread as quickly. So I remember reading that. So it basically means that the cancers you do get are quite aggressive.
So it's kind of like it's a predisposition. Predisposition to cancer. And I guess one of the things that shocked me and especially with my mom is, always, always, always advocate having a healthy lifestyle. Of course, but I remember saying to my genetic counselor, you know, what if I stopped drinking, what if I become vegan, what if I do all of these things, and she said, it's not environmental, it's not an environmental cancer.
So, by all means, do all of that stuff, but that isn't necessarily going to prevent your genes from being the way they... Well... it isn't going to prevent that. Um, and that was something with my mum as well. She used. Such a healthy person. She just, you would never have expected that. It was such a shock for her.
She never drank, never smoked, never taken drugs, everything. She did everything by the book, and she still got cancer. So that's really difficult because it's not, yeah. It kind of feels like you're going to get it anyway. That's kind of what she said to me. She was at; it's not if it's when. So yeah, it's quite scary.
Tammey Grable-Woodford: I am truthfully amazed at how many women I talk to, and myself included. I was... same thing, didn't drink, didn't smoke, ate organic food, worked out every day, you know, so like ticking all the health boxes and still ended up diagnosed with cancer and with breast cancer. And so it is an interesting advocacy and educational moment that it, you know, as much as we would like to say, well, just don't do that thing, and you're fine. With breast cancer, that is just not the case.
Christen William: And it's, and it's, it gets really frustrating when we go down that route because then I feel like there's a blame. That's what a lot of people think, what did I do wrong? Where did I mess up? You know, was it because I drank a glass of wine last week? I think it becomes very blaming when we do that or think about the environmental factors, and yeah.
Tammey Grable-Woodford: Yeah, I agree with you. And there's an element of trying to get some control back too. I know that you know after I was diagnosed, like what can I change as if there was some sort of magic sauce of if I change... if I go vegetarian or vegan versus right. Like what, what can I remove from my life? Or what should I be putting into my life so that I can fix this?
And it just doesn't work like that.
Christen William: No, it doesn't. It has that that has happened to me since having my operation. I feel like I'll talk about my operation a little bit, but I've gone through such measures to remove cancer from my breasts. Now, every time I do anything that's bad for my body, I feel guilty. Cause I'm like, I've gone through this whole operation, and I'm drinking.
Why, why would I do that to myself? So that's with any of this is so much about your mental health, and it's all about psychology and what you're thinking. You know, it's, it's not your, it's not just your body. That's impacted, not at all. It's all about the mind.
Tammey Grable-Woodford: No. It's. It's, it is, uh, all-encompassing when it comes to your person. And so when you're diagnosed with BRACA, you're now faced with some decisions. So for me, it was pretty well laid out. You've got tumors; you need to have them removed. And so when you were diagnosed, I'm sure you went through screening.
Did they find anything? Did you have a prophylactic mastectomy, or did you find tumors that would cause you to have that? Or did you just sit and wait, you said surgery. So I'm assuming, um, and I did look at your YouTube channel. So I do kind of know, but I don't want to wreck it for everybody. You know, because it is a big part of the story, and you do have decisions that you can make.
And some women, especially younger women, they'll, you know, they'll sort of stay the course and go with monitoring. And some women are like, nope, let's just, let's just remove all possibility to the best of our ability. And so what decisions did you make, and how did you go about making those.