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019: BRCA Chatter and Previvor Conversations

Updated: Jun 22, 2021

 

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 and from a mental health perspective. But thankfully, like you said, those, that group of men and women who've been there, done that. And yeah, here to tell the story and walk with you. They're amazing.


Suddenly Aware of Your Own Mortality

Christen William: But that's it. Isn't it, you, you become so aware of your own mortality. If you know, if you are a previvor or a survivor, if you're told you have a predisposed predisposition to cancer, you suddenly do not want to die. Like, that's the feeling it's like, Oh my God, am I not immortal? Wow. Okay. And. It does... I'm not trying to take away from it fact that losing your boobs and part of your body is not horrific, but it does put perspective on things.


And, you know, I used to say, what's the point in me having boobs. If, if they're going to kill me like they're not going to look great when I'm dead and buried. So it makes you, you lose your boobs, but you find so much more through the process, you know, you find your reason for living. You, you gain new friends, new hobbies, all of that stuff.


Cause you just want to live. And that, you know, that's been a gift for me really. Really has. You step outside of that whole, just living and just try and make more for your life.


Tammey Grable-Woodford: Yeah, it takes you beyond existing or even just acceptance of it... I, I used to say how I was always banking on the future for that vacation, for that trip, for that experience, for that whatever. And now, and, and, you know, putting up and tolerating a work environment that wasn't healthy and all of these things.


And now it's like, I, I genuinely don't have time for that. I might, but I, I'm not going to tolerate it, and I'm not going to compromise. And so it really did free me up to create an authentic, intentional life that I enjoy waking up to and stepping into every moment, even though I do still have those days where, you know, it does it occasionally hits you the scanxiety around getting scans on a regular basis, you know, like just showing up for those.


Christen William: If people listen to this and thinking the only option is mastectomy, it isn't. So the choices that we are given would be to have that regular screening. So as soon as you turn 30 in the UK, you will be having MRIs annually. Sometimes they choose to do it once every six months. That is in the hope of picking it up early. Not, it's not prevention. Um, cause obviously, your chances are much better if it's picked up early. So that's one choice. And then the other one is a, they call it chemoprevention. So you take certain drugs. The criteria is quite life-limiting, so it's not suitable for a lot of people, but it is also an option. So chemoprevention.


And then obviously, it would be your own regular checks. They make sure that you're always checking your boobies for any differences, and you know, all of that stuff would promote. So the mastectomy is in my surgeon said to me, if you just kind of made it a bit harder. He said, if you were BRCA1, I would say, definitely have the mastectomy because their chances are higher and at a younger age.


And he said with BRCA2, he said, I'll be happy if you do regular screenings, I'll be happy if you have the mastectomy. So that was, that was difficult. I was kind of like, I wish you could make that decision for me, but just so people know there are different options. Um, not just mastectomy.


Tammey Grable-Woodford: Thank you. That is really important. And you threw out a word earlier that I want to come back to, you know, we talk about survivor, and we talk about thrivers, but you mentioned previvor, and I think that's really important. Yeah. Do you want to talk to us a little bit about that?


Christen William: The definition of that is surviving a predisposition to cancer. So I'm not a survivor. I've never had cancer on the previvor because I prevented it before it got me. So yeah, that's a kind of term that we use. We're all in the previvor gang, and in the US, you have the Breasties, which is incredible charity organization.


They. I wish I lived there. You go on like retreats, and you'll meet up, and it just looks like such an incredible community. And we are slowly bringing it to the UK. We've got London Breasties now, but hopefully that will be growing over the next few years, but it's well established in the USA.


Tammey Grable-Woodford: Yes, which is also wonderful. Absolutely.

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So you have had... one of the other reconstruction options I always ask about because, and this is one where a lot of women are like, do I or don't I, and I was on the fence with it too. But did you have nipple reconstruction?


Christen William: I did not. Yeah. So I did. I've made a video about that recently because it seemed like totally 50/50, whether people had had it or not. So the background of that for me, they basically said, because I have very big areola and because they were repositioning my skin and I was having a bit of a reduction. They would have looked ridiculous at one point. He said they might be under your armpits. And then he also said, they would be too big and they would, they wouldn't straight. They wouldn't be symmetrical. So aesthetically, they wouldn't look fabulous. And there is also a really small percentage, like 1 or 2%, very small of getting cancer in the leftover tissue. So for me, I was like, I can't, I don't want to still have that anxiety, just get rid of it all. And, you know, I'll be happy with that.


A lot of women who I spoke to, you know, for my blog on this said, You know, it's such a small chance they're going to take that risk, and they didn't want BRCA, a lot of them don't want BRCA, to take everything from them and your nipple does make your boob look like a boob. It definitely does.

Um, there is a small risk of something called necrosis, which is nipple or tissue death, and confusingly, the more tissue they leave, the better chance there is a bit kind of your body accepting that nipple, but the more tissue they leave, the more chance they would be of cancer. So it's a little bit, you know, it's a bit of a catch 22 really, isn't it?


Um, So, yeah, there's small chance for cancer. And for me, they would have looked ridiculous anyway. For most people, they don't serve a function, so they don't have sensation, you can't get aroused by them, but this is developing. So there are new techniques being used at the moment where they keep the nerve. You talked about this earlier; you keep the nerve sensation.


So hopefully for the future, nipples... save the nipples. Yeah, it looks like the option to keep nipples is more and more popular, more and more popular choice. Um, but I missed the boat on that one.


Tammey Grable-Woodford: You know, I actually on the breast that had lobular, it had made it to the dermis and was in my nipple. So I couldn't keep that nipple. And once I talked with the plastic surgeon, and this was five and a half years ago. And so, you know, the conversations that surgeons are having now about preserving sensation versus the conversations I was having five and a half years ago, that conversation was, you know, you're, you're not going to have sensation anyway.

And we knew I had three tumors in the left breast. We didn't see anything in the right breast, but my type of cancer lobular is very sneaky. And in fact, I didn't with three masses and over six centimeters of tumor tissue; it wasn't palpable because of how it grows. And so, um, I chose to just have both breasts and nipples and just start everything at the same place. And then we will reconstruct.


Christen William: Yeah. Yeah. I think there is. You know, I would say there's kind of two camps of people who are just completely risk-averse, take it all. And then some would be like it's only a tiny risk. Yeah.


Tammey Grable-Woodford: Well... you know, it's just, it's interesting because I know for me, I didn't want to have the conversation every year with an insurance company about why it was, I needed to have an MRI with contrast instead of just a mammogram on that breast. And so, I don't know. I mean, I may have made a different decision, had my cancer type, been different if it was something that wasn't so sneaky and didn't hide like that.


But, um, yeah, in the end, it was just, it just seemed easier mentally more than anything to just get it all over with at...


Christen William: Yeah, yeah. And so the main purpose is around aesthetics, and mentally, it should be easier for you because of the way you look, and they still look like a boob, but the flip side is the anxiety that then you're kind of, you're weighing that up. Really. There are options for me. I'm sure. Same for you. I can have tattoos. You can use, um, what'd you call them silic... would it be silicone?


Tammey Grable-Woodford: Yeah, I had a set, I had a set of those and I, and I have had nipple reconstruction, which is an interesting thing because it, they basically, my plastic surgeons amazing, but it's not like a nipple tissue. It's the skin that's left. And so I had nipple reconstruction and then I ultimately tattooed, and I actually left my silicone nipples with my tattoo artists as she was using that as a guide of, you know, like...


Christen William: Tracing them


Tammey Grable-Woodford: And coloration and the whole bit. But yeah, there are amazing prosthetic nipples that are out there and tattoos that are temporary or permanent.


Christen William: It's just something for me, I feel I might change my mind, but it just, it just doesn't bother me. And I feel like I would just be doing it to make them look like boobs. But the reality is I don't have boobs anymore. And I say that to people, and people go, yes, you do. You still have. I don't. Biologically, I do not have boobs.


I've got silicone under my skin and in clothes, you know, you can't, you can't tell at all, but there's something a little bit proud about me not having nipples. I'm like... this is my thing. It's my party trick.


Tammey Grable-Woodford: That's awesome.


Christen William: I'm sure. You know, I might change my mind, not got any tattoos, so I might do it just so I can say I've got a tattoo, but it doesn't bother me much.


Tammey Grable-Woodford: You know, it's such an interesting thing. I... it's the same for me. I call them prosthetics, even though they're under my skin. It is a silicone, like, it's a, it's a, it's an implant. It's a medical device. It's not. You do kind of lose that attachment, I guess, in some ways, and, or I shouldn't say not that we all do, but I did.


And so that's been an interesting part of the process and, you know, the first thing I did was actually ink them full. Like I have a phoenix on one side and a dragon on the other and went to town, and nipple reconstruction came later, and then nipple coloration came even later probably because then I was just addicted to tattoos.

I don't know, but...


Christen William: They are a work of art, aren't they? As with any work of art, it develops over time.


Tammey Grable-Woodford: Exactly. That is exactly it.


Christen William: I would say that I... they've become part of me. So when I first had them done, I had no issue at all of putting topless pictures on the internet to help others, like just to show it. Whereas now I wouldn't do that because I think when I first had it done, it was like, these aren't me. My boobs have been removed. These aren't my boobs.


And now, however, what nine months down the line. I don't think I would do topless photos. They're still there. They're still on my Instagram, but I don't think I would do any recent ones. I don't know.


Tammey Grable-Woodford: That's interesting. I know mine are on my tattoo, artists, Instagram, and her webpage. And I have posted as I was going through the tattoo process and same thing. Right. I mean, and honestly, in the Facebook support groups, I'm more than happy to share photos, especially since I, I had under the muscle implants initially, and I have over the muscle implants now, and then the actual aesthetic of them does not look that different.


But the animation I had under my under the muscle was really bad, which is why we ended up going over the muscle. So having those conversations with people to... same thing to help people go through it because it is amazing. You know your, your surgeons are always going to show you their best work.


Christen William: Yeah. I don't think I saw any from my surgeons. I don't think I got a photo album full. Yeah. It's just people on the internet who I'd seen. And it says, I have had women say to me, or, you know, you look so good. I took a photo of you to my surgeon. I'm like, yeah!


Tammey Grable-Woodford: That's awesome.


Christen William: How many screenshots I am on other women's. Cause I did that. I took screenshots of other women's, so I could show my friends and be like, look, these look great. So yes.


Tammey Grable-Woodford: Exactly. I joke with my guy. I probably have more, um, topless photos on my phone than he has he's ever had on it is because we do we share, and we support one another. And, and we also celebrate, right? Like that sense of reclamation of, finding joy and pride and self-love and self-acceptance and all of that again, it's, it's all very important to that.


Christen William: It is; I do feel as well like it is just a note on social media. It can be if you're not in the right headspace, and you start scrolling through Instagram, through Facebook. It can really mess you because sometimes people might be posting photos of complications. They might be having a really bad day saying, Oh my God, this is awful. Why is this happening to me?


And if you are not in the right headspace, that can really shake you up a little bit. So that's my kind of warning. We're all like that with social media. Unfortunately, we just jump on without thinking about it and just scroll mindlessly all day long. So just, yeah. Be aware that it is such a fantastic support but makes sure you are able to kind of cope with the bad as well as the good that you come across on there.


Tammey Grable-Woodford: Yeah, the, you will find what you seek is also kind of an important part of that. If all you are looking to find are complications and it's, I'm so glad you mentioned that because five and a half years ago, when I was first diagnosed, I didn't find what I see now, as far as as many support groups and images and things like that.


So it really was Google and I, and Google more than anything was. The complications and things like that because it was medical journals and, you know, that's where a lot of the images were coming from. And so thankfully, that has really transitioned. It really changed. But now we have women on the cover of inked that have been, you know, had art over their scars and whether they've had their aesthetic flat closure, whether they've had FLAP, whether they're been reconstructed or somewhere in between. And so there is much more acceptance, and I love what you're doing, and the reason I think it's so important to podcast about it because we need to have these conversations out in the open and not just behind closed doors and in back-rooms, because for whatever reason, and I don't know about the UK, I have a feeling, you guys aren't as uptight about breasts, maybe as we are over here on state side, but you know, like we don't talk about them.


We have them all over. Like every car, burger, advertisement there is, but when it comes to being part of what is important to a woman and her femininity and her sexuality and sensuality, that's where we kind of like, Hmm, we don't, we don't talk about that.


Christen William: How society's views on breasts has really damaged women's bodies. Like you say, they used to advertise KFC, and yet breastfeeding in public is still very much a taboo thing. It's just utterly ridiculous. And if you ask anybody what the point of a breast is most, most people will say to breastfeed a baby that there's been as whole. Yeah. Just we're completely objectified from our bodies. And it does make it harder to talk about.


I think over the last few years, we've come in the UK, you know, a really long way, in terms of talking about breast health, this incredible charity called Copperfield here, which have just, I think, completely transformed younger women's approach to checking their boobs and talking about boobs and bodies. And we getting there. We're definitely getting there, but I'd say some people are still very uncomfortable talking about it. They really are.


Tammey Grable-Woodford: Yeah, it is definitely interesting. Even when I started the podcast, I said to my editor, can I, can I say nipple, like the fact that I'm even asking that question. Can I say it?

So, all right, you, Oh my goodness. Such, such an inspirational story. And one of the questions I always love to ask my guests, especially those that have been in the trenches. Christen, what advice would you want to leave with our listeners as we think about breast cancer, breast health, and really overall health.


Try to Think of It as a Wonderful Opportunity

Christen William: So I would say. It's a very hard thing. I know it's easier said than done, but if you have a BRCA mutation, try and think of it as a wonderful opportunity to live a longer life because, you know, our relatives weren't so lucky, and this is relatively a new thing that's been discovered. You know, if my mum knew that she had it, she'd still be alive.


So a lot of people see BRCA as a cancer diagnosis, and it is not a cancer diagnosis. It's an opportunity to, you know, save yourself. And in terms of preventative surgery, they are really terrifying, the anxiety-provoking, but hand on heart for me, a woman who loved her boobs and had a fantastic rack, you will get through it, and you will be pleased, and you will view your body in a whole different light, and you will respect it in a completely different way.


So I know you will be anxious, but if anything, just reach out, speak to other people in the community, you know, get on Instagram, watch my videos on YouTube. Just, just to see that the journey is... it's life-changing, but that doesn't have to be a negative thing. It can be a really positive thing. So yeah, just that there's hope and yeah, it's just spin that, spin that thought process a little bit and try and focus on the positives of it.


Tammey Grable-Woodford: I love that. And I mentioned your video blog, but where can folks find you? I, you have great Instagram, um, which, oh, my beautiful images. Your videos are perfect. So where can people find you?


Christen William: Topless pictures. Um, so my YouTube is BRCA chatter, so BRCA Chatter, so like kind of chatting about it, which I always am. Um, and so has my Instagram and Twitter, so BRCA chatter, and they will kind of link together. So whenever I post anything on YouTube, I'll put it on my Instagram as well. So you can get through all of those realms to get there. Um, yeah.


Tammey Grable-Woodford: I love it.


Christen William: And I just, yeah. Thank you so much. Thanks for having me on, like, it's been so wonderful talking about it. Always, always not getting stuff off my chest.


Tammey Grable-Woodford: Literally and figuratively. Oh, thank you so much for being on the show for bringing awareness, doing the advocacy work you do, and really for being such a light, a beacon of light and hope. And energy and enthusiasm humor, in what could be a dark space with everything that you do and bringing awareness and helping folks like myself who needed a little more information and didn't know as much about BRCA and for all of those listeners that have been diagnosed with a BRCA mutation.


Thank you so much for being here, Christen.


Christen William: Thank you. Thank you.


Tammey Grable-Woodford: All right, listeners. Thank you so much for tuning in again and listening to Your Killer Life. Another great episode, another great guest. If you haven't done it yet, click that like, click the subscribe, click the bell and hey, while you're at it, head on over to BRCA Chatter and click some likes and bells and stuff over there too and give Kristin a follow. Until next time, keep building Your Killer Life.


Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.

 

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