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:

  • Intro

  • What is BRCA

  • Not Environmental

  • 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

  • Sign off

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Transcript

Intro

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.


Knowing that.


Not Environmental

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.


Making Cancer Decisions without the Cancer Diagnosis

Christen William: So that was... that is the difficult part, isn't it? And I know a lot of doctors said to me, this is so hard. If you have cancer, that decision is taken off you. So it's kind of like, you don't have a choice, but to have operations. And when you're faced with this, it's like, you've got a probability of getting cancer, but you're still healthy.


So what do you do? And that is. The dilemma that a lot of women are faced with. So it's, it's different in US. It's different in UK. It's different in different parts of the UK like our response across the NHS really depends where you live and what services they have and what surgeons they have. It's very, very confusing to navigate it all.


So for me, I was 27 when I found out, and they basically said, we're not going to do anything till you're 30. Nothing till you're 30. For other people. I know they said we're not even going to test you until you're 30. Cause we're not going to do anything till then. If you think about it, I had my operation just after 30.


So if you haven't found out to you 30, you've then got years to think about whether you want your operations. It's different across the country, but I did put it out of my head for three years. I really did. Cause I was like, ah, it's not a high risk, like, which is untrue. I know women who've been diagnosed in their late twenties.


So. My thought process at the time... I was 27, and I was in a stable relationship, and I really wanted to breastfeed. I had, I didn't have kids, but I thought that was on the cards. And that was something that was quite important to me. I loved my boobs. I had 28 double Fs, depending on the day. I really, you know, they were really a big part of me basically.


And then, as time went on, I wasn't having children. It just wasn't right for me and my partner. And then we felt that there was a lot of pressure for us to have kids just so I could breastfeed just so I can have an operation. So we at the time sat down and had this conversation just thought, practically get it over and done with.


Before, I have commitments of having children. Before I'm, you know, working part-time and not having the finances. It was just, it was a really, really practical decision and it, it been hanging over me, even though I hadn't thought about it for three years, it was still always there. It was still kind of following me around, and it was like, my friends kept asking me about what you're going to do, and a lot of my friends at that stage as well started having children. And some of them were having trouble breastfeeding. And they were like, what if you do all of this, have a baby, then you can't even breastfeed. How would you feel? And then, you know, quite bluntly, one of them said, well, if you get breast cancer, when your child is one years old, what are you going to do then?


So I was having all of these questions put towards me, and it kinda just snowballed. I had an appointment with the plastic surgeon just to talk to him, just to talk to him. And I skipped out, like; I'll have a mastectomy. Why It was weird. It was kind of like, I kind of felt like my life was on hold. I was just waiting for this thing to happen.


And I know what you were saying earlier is that it's, it's hard because we're healthy. But it's brilliant because we have opportunities. Knowledge is power. And the fact that you know, you've got a predisposition to cancer means you can do something about it. You don't have to wait.


What am I waiting for?

And I said I've written a blog recently. And it was like most people who get diagnosed with cancer probably say if only I knew this was going to happen. And I think if most people who were diagnosed with cancer was said, would you've done something to prevent this. They would all say yes, they really would. Because at the end of the day, if you have, you're likely with BRCA to have mastectomy anyway, and part of it for me, they, they basically said, if you, this is sounds really shallow of me, but they said, if you were to get breast cancer, you're unlikely to be able to have a reconstruction because I haven't got any fat on my body and they don't like putting silicone under the skin if they've done radiotherapy because it's not strong enough.


So in a very shallow way, I thought, well, I can get a better kind of reconstruction if I do it now. It wasn't about like my life, you know, I might die. It was like, I'll get a better boob out of


Tammey Grable-Woodford: Okay, but I'm going to stop... I'm going to say time out. Because it's not vanity. It is identity. It is your, is your self-awareness. It is your self-confidence is your self-esteem. It is your sexuality, your sensuality. It is how you, it is relevant, how it is as we walk through our reconstruction. And as it is, you know, for me, I had, I also had implant reconstruction, and it took us a couple of surgeries to get as good as it's going to get, which is pretty good.


And I also loved my breasts. I had great breasts. It was tragic.


Christen William: I know that is how I felt... tragedy.


Tammey Grable-Woodford: What a waste. And, but, you know, at first I couldn't even say that. Right? Because it felt so vain to actually appreciate my own body, to be okay with my own sensuality, to be complimentary of myself. Right? Because we're all supposed to be so humble and not talk like that. So that makes sense to me. And I was the same way, part of my decision-making processes.


I couldn't have done the tissue reconstruction at the time. I didn't have enough body fat either. And, and that's something that I just had an amazing plastic surgeon on for episode 17. And we talked through the various types of reconstruction, which I'm so glad they're, they're actually making so much headway in that area. And especially with numbness and, and being able to get some sensation back. But it's amazing.


Christen William: That's one thing I think different in America is that you guys are given a choice more so because a lot of women have contacted me from America saying, how did you make a decision? Why, you know, they get given lots of information you choose. I'm like, I don't really feel like we have a choice in the UK.


It's like, we've got the NHS and it's, whatever your surgeon says is best is best. So... I mean, that's an important note for any UK listeners is that you have a choice. You do, you can pick any surgeon in the UK, and you can get referred to different hospitals. And I think we are less likely to do that because we feel like our NHS is so fantastic and wonderful that you don't want to question it.

So but, that is important because for some women, they have a real strong, you know, feeling towards a certain type of reconstruction and that they should be able to get that if that's really how they feel.


Tammey Grable-Woodford: Definitely. So you, then you went through, you had your bilateral mastectomies, you went through reconstruction.


Christen William: Yeah.


Tammey Grable-Woodford: And did you make any decisions with your ovaries or any of your other potential risk areas?


Christen William: Not yet. So this, I had my operation, what, nine months ago now. I, first of all, I'm very, very happy with how it's turned out. Something that you are anxious about for so long, so many years and anxiety. Whatever it is, is always worse in your head than it is in real life. So that's one key message to give people is that you will be okay, and you will learn to love yourself and all of that stuff. So I am really happy with how that has, you know, how I look.


Unfortunately, during that whole process, me and my partner split up. So that's kind of changed things a little bit in terms of my, I guess, timescales of thinking about, you know, having a family and all of that stuff, but the options for ovaries is they've got a new thing at the moment where they remove the tubes or tie the tubes because apparently most ovarian cancers, I thought within the fallopian tubes.


So. If they remove the ovaries first, that will, that will lead you into pre-induced medical menopause or surgical menopause, which can be horrific for the body. Menopause generally, you know, it's just so many different symptoms, but when it's pre induced, they're kind of like really heightened. So the whole idea behind removing or tying or cutting the tubes is that you delay that, hope for natural menopause, and then remove the ovaries at a later stage. And so they're doing quite a few studies around that in the UK at the moment. I'm not sure what's going on in the US, and that also means that you can still obviously. Have babies because you're not removing your ovaries. Yeah. That is an option.


The other thing which they have spoken to me about, but obviously I'm not planning it at the moment, is PGD or PDG; I always get them mixed up, which is a type of IVF. Um, where they basically remove your eggs, and they'd have the embryos outside of the body, and then they test them. So they would only implant the ones which did not have a BRCA mutation. Yeah, it's pretty incredible, pretty incredible. But that's a real, again, a real dilemma. The success rate is like 30%. It goes up each time you try a cycle, but it's still 30%. So that's a very, I guess, traumatic thing to go through as a couple and on your body and all of that stuff. And then there's the whole dilemma about, well, I've got BRCA, you know, I've got BRCA if my mum did that, then I wouldn't be around. But it's that sort of, yeah. It's a very, very personal decision. So obviously, everybody is going to approach that differently. Some people might say, well, I wouldn't want my child to have to go through all of this. People like me. I'm very, uh, what will be or be.


I'm very hopeful for the future that when I do have children and they're older, there'll be so many different like miracle cures for everything, but that's an option as well.


And one thing they told me this, they told me this five years ago, um, that they can also test once you're pregnant, they can test the fetus to see if it has BRCA and you have a choice of a termination. So I have said that to a few women, and some women across the UK have said, that's not being said to me. And others have said, yeah, they told me that. So that's quite, yeah. Again, that's the whole feeling of would my mum have aborted me, but again, it's, you know, what's right for each individual. Interestingly, you can't test children until they turn 18. So you could test an unborn baby and find out it has BRCA, and then if you choose to keep that baby, you'll always know it's, I've got BRACA, but you can't test test a child until they're 18, definitely in the UK. Not sure about US, but...


Tammey Grable-Woodford: Oh, see, now you're going to send me down a research rabbit hole once, once we're done recording, because I'm really curious about that and wondering if it's the amniotic fluid or something that, that, that would, I don't know. See, now I'm all curious.


Christen William: Yeah. Yeah.


Tammey Grable-Woodford: Those are tough decisions. So when you are diagnosed with BRCA, and you were saying, so, with 2, it was an 85% chance of breast cancer. If you have BRCA if you're diagnosed with BRCA2 or have the BRCA2 mutation. And is that 85% for women only, or is that 85% chance there also for men? Because I know that one of my previous episodes, the male breast cancer survivor that I had, uh, spoken with was a BRACA had BRCA mutation.


Christen William: Yeah. So the stats I have in my brain, it's 85% chance, lifetime risk for women. And it is, I believe, 7% for men.


Tammey Grable-Woodford: Oh, wow.


Living by the Numbers

Christen William: And the average, a woman without a BRAC mutation has a 12% that they're the stats that I know in my head. So it is still increased for men because I think men without BRCA is like zero, zero point something or one it's like really, really low.

So it's much higher with BRCA, but it's still lower than, uh, than your average woman, basically.


Tammey Grable-Woodford: Much lower, than yeah, the average woman. Wow. So that is so much information. Can we talk mental health for a minute?


Christen William: Of course.


Tammey Grable-Woodford: Because, you know, I know for me when, and I had the feeling like I had watched changes in my breast and by the time I made my appointment, honestly, it was Dr. Google and I, and we figured that out, made the appointment with the gynecologist.


And so when the radiologist said to me, it's cancer, I said, Oh, Okay. It was just validation, but it was still from a mental health perspective. This whole process was so. So challenging. I was always amazed at how quickly and I, I hate to say easily, but this is relatively speaking. How much more easy it was for my physical body to just accommodate and heal and go about its business.


And mentally, it felt like pretty much stepping into the Coliseum on a pretty regular basis and going to battle with, with my myself. And so you're healthy. I was healthy. You're healthy. You look healthy; you feel healthy; you're doing all the right things. You have this information. Part of you wants to get right on that Kubler Ross, uh, you know, grief thing and say to yourself; I'm just going to hang out in denial for a while.


Christen William: Yep, yeah. Let me process all of this.


Mental Health Tips

Tammey Grable-Woodford: Exactly. So, can you talk with us about some of the tools? I mean, I'm assuming that video blogging was one way of just kind of getting it out there and facing and processing.


Christen William: It was such a bizarre feeling, doing all of that because I was so, you know, I said to you earlier, I was trying to learn how to even edit videos and record. I'd never done any of that before. So it was a real learning experience, and I threw myself into it that it was partly a distraction. Even though all I was I was talking about BRCA, everything I was recording was about BRCA my own journey.

All of that. I was also detached from it at the same time. So I was learning all of this stuff, but it was like, I was doing it for other people, not for myself.


Which, so you know what? That's... that's kind of my approach to a lot of things. I always just, I like helping people. I've always liked helping people. You know, I'm a social worker by background.

I've just; it's what my mum was like. She just always wanted to help. So throwing myself into helping other people really helped me. You know, it's a really rewarding thing. And, you know, even whilst I'm struggling with recovering from mastectomy, people are asking me questions, and I'm helping them prepare for them prepare for their mastectomies.


So, yeah, that was, it's so therapeutic for me to share my journey and just to feel like. Not to get sad or sloppy, but I feel like this was, this happened to me for purpose. And my way of looking at it in a positive light is to say, well, I've been through this. Therefore other people are going to need help going through this.


So that was kind of what I did. And I remember same with when my mum died. Like none of my friends, parents have died. And I remember my best mates saying to me, in a really... she said it in the nicest way possible, but she was like, I'm so glad this has happened to you first because now you can, you'll be there for all of us.


And I was like, I know I will. All of these experiences that I've had around BRCA around cancer, loss, grief, all of that. I have just harnessed it as much as I can to try and help other people with it. And I'm not saying it hasn't been hard for me. You know, I've had really, I have had low days, but I've always, I feel privileged, really.


I've had a very, I have had a lucky life. I've had a lovely family. I've had enough in my life to make me resilient. And I do think I'm a very resilient person. So. When I do have low days, I kind of know that that's just part of the ride isn't it. Just riding those waves and you just gotta, you've got to own it and be like, today's going to be a bad day. I'll let it be a bad day, but tomorrow's a new day. So I have, yeah, a lot of, I guess, positivity and hope around that.


I get... my main thing was anxiety about how I would look and how I would feel. And you know sadly about my relationship. And I would say the worst kind of did happen. You know, my relationship ended. I left my house; I had to change my job. I had a mastectomy... all of that. And I'm still all right at the end of the day. Still all right. So even when you're hitting your lowest, and you feel like this is so crap, you know, it can't get any worse. It can get a little bit worse, but does always... it gets better. It really gets better. And I quite often will say to other women when they're diagnosed, and they're very upset about it.


I will say the community is incredible. The BRCA community and the women I have met are just so inspirational. Sometimes I say it's even worth it just to be part of their gang. Same with like cancer survivors and thrivers that you're just also wonderful. And you find that community and you find that mutual support and I just couldn't have done it without these strangers on the internet, you know?


Tammey Grable-Woodford: It's amazing. I call it the secret, not so secret club, because the moment you're diagnosed, all of this sudden people that you... had no idea come out of the, you know, just to step out into the sunlight and say, I'm alive in this diagnosis and you will be too. And you know, so that, at least in the States, I don't know about over in the UK, but in the States, especially as we come up on Pinktober or, you know, awareness month, a lot of the image that you see imagery that you see around breast cancer is around loss around death. Right?


So most of the times when you hear that word, when you're first diagnosed, you think. So this this is it. I'm just basically delaying the inevitable, and walking this path to my demise is kind of what it feels like initially. And if you haven't been around survivors, once you get around the survivors and thrivers, you're like... oh no, what cancer looks is marathons.


What cancer looks like is health and vitality. What cancer looks like is yoga, but it's not that you have your healthy self back. There are modifications that happen where, you know, I didn't realize I would have a lot of pain. I didn't like there are things I didn't, wasn't quite prepared for, but to still have that, that hope and that visual of being alive in your diagnosis and walking in friendship with it, that was something that was not communicated, at least not on the medical side