Anonymous

And then fast forward, you know, quite a few years, we now have children. And so I guess it's about four years ago, went ahead and had genetic screening to confirm. I went and did that test to confirm what specific genetic mutation, or whatever it is, that we had, so that we could get our girls screened as well. It was at the point at which our kids were getting to the age of needing to have annual scopes, or get tested. That's when I went ahead and had myself tested. It was just for our kids, getting them screened, you know, to have that confirmation so they could screen for the specific mutation, rather than a broad spectrum kind of thing.

And so yes, I wanted to do that. I've already given my daughter a higher risk chance because I had breast cancer. I wanted to know for my daughter and my niece. I felt I owed them that.

So while I was there [with the doctor], the minute she said that it was hereditary and that my mother passed it down to me, I immediately, immediately on the inside, just started crying. Because I knew one of my sons, watch it be him. Watch it be him, the one sitting right next to me at the time. And she looked at me and she said, “We've got to do a test on your son.” After I gave her all the history of my mother passing it to me, her sister passed away from it. My first cousin has it, she has it. My brother, he was the first one to get a lymph node under his arm. And he went through chemo and everything, and he's fine now. My father, the best way I can describe it is like somebody developed a cancer bomb, and put it in him and waited for it to explode. That's how bad he had it. And then my sister, breast cancer. She passed away. So with all of this in front of me, and I'm listening to her telling me that it's hereditary. And then I look at my son. So we waited for his test to come back. And his test came back positive that he has it, too. So from there, for me, it was just all about, what do I do now?

It's also tough psychologically, as a parent, that like my mother, all three of her kids had it. So she has this idea that she made us sick. Or, you know, so she bears some-- she feels a weight of responsibility for this, even though none of us blame her. And, you know, we know, logically, that she doesn't bear any responsibility for it. But I understand, now that I'm a parent-- I understand, if my daughter had the mutation, I would feel the same way.

So she has a 50% chance of testing positive... Of course, right when I found out I was having a girl, that's the first thing-- one of the first things I thought about, unfortunately. It's something that, I mean, as I've said before, I feel like I'm actually better off knowing because I'm so aware of it, and it's on my radar, and she will be aware of it, and it'll be on her radar. I do plan on getting her tested, obviously. My husband and I have talked about, I think we're going to wait because we just don't want to, she's too young. There was a way you could do it, you know, before she was even born, and I was like, I'm not risking any of that just for a gene, you know? But, I'm going to hopefully provide her with all the information that I've been provided with, and she'll have great doctors if it does come out that she's positive and she can make her own decisions.

[My daughter] has not been tested yet. Because of the mere fact of the family history she can do the early mammograms and have insurance cover it without having that genetic test done. And the one thing I think that her generation, you know, my nieces and her, seem to be weighing is, when is the right time to have that testing done and have that be on your medical record for the rest of your life? Because you might want to buy life insurance or, you know, engage in other things that might, at some point, if that's on your medical record, hinder you from being able to or make it at least affordable.

So this has come up with some other people that we've talked to. It's not quite as, but learning that-- like you have one daughter who has and the other who doesn't. How does that feel, and like for you?... Is there, is there an issue between the girls?
No, I don't think there is. I don't think there is. I mean, for us as parents, there's like, there’s relief. And then there's like, oh, you know, one of them has to deal with it, kind of thing. It’s kind of, you don't hope both have it or. But it's kind of like all or nothing, is that easier? But that's the way it works out. And that's what it is. But there's not an issue. You know, between my wife and I, we kind of feel like our daughter that has the mutation is the one that has the personality to deal with it better. So in a way, that's a blessing...And then my kids just have a great outlook on it, too. I mean, the one that has Lynch syndrome has a tremendous attitude around it, and rolls with it.... And we were cautious to make sure that she's not, it's not a coping mechanism type of thing. But she seems, she seems to truly just kind of go with it, and understand that it's part of who she is. And in our family, you know, Christian faith is significant. And it's who God made her.

But there's a lot of concern out there right now about-- for instance, my daughter. As soon as she has a family, should she immediately have prophylactic surgery? I don't know. The guidelines will tell you that. And most doctors will probably tell you that. But I also have talked with other people who have delved more into the research behind things. And when you look at the increased risk for endometrial cancer and ovarian cancer, is it really worth the trade-off of having a complete hysterectomy and being a slave to hormones, or perhaps a change in your mental state for the rest of your life when you're in your 30s?

My oldest daughter... decided last summer, I believe, but within the last year, to be tested for Lynch syndrome. And now I'll probably cry, [voice breaking] because she does have it. And that was the one time. It was like, I didn't mind that I had it. But I was hoping it would end with me. But it didn't. So she has it. So, we both cried. And I went with her to her genetic counselor. And she's already had a colonoscopy. And she became pregnant after that, had decided they had been wanting to start a family. So, luckily, she is due in August, but has been told that once they are done having a family that she will have a hysterectomy, just of the uterus and fallopian tubes. And then I think three or five years later, they'll do her ovaries.

And, and I have two sisters who don't-- who won't test, and don't know, or don't want to understand the significance of BRCA. OK, the significance to me of BRCA2 is, if you know that you have it, you can protect yourself from death, from potentially dying. If we know that BRCA gives you a 60% to 80% chance of getting breast cancer, we know that there's preventive measures, at least for breast cancer. You could do the mammogram and the MRI. But to choose not to test, is what I'd like to change. That's what I'd like this to change is to get people to understand that-- I think they don't test because we think that everything is fine without testing. “Why should I? I'm fine.” But if you test, you can keep yourself alive by doing preventive measures. And I think keeping yourself alive is more important...Yeah, it hasn't made any difference to them in terms of, “Oh, I should check this out.” They know that our mother and her sister both had breast cancer. They know that I've tested positive. They know that the chances of them testing positive are 50:50. But it hasn't made any difference to them. They've seen me go through this, and they've seen me come out the other side. So I don't believe it's made any difference for them because if it had made a difference, what I would have seen is them thinking, “Wow, it's important for me to test because then I can stay alive for my kids, by doing some preventive measures.” They're both above menopause. They don't need those things-- the ovaries. So it hasn't changed their perception of what they should do at all.

I have encouraged him to get tested. I think that it's important to know if you have a higher risk of getting certain cancers, just because, in our family, the risk of cancer is high, I mean, on both sides. So, it, for me, it's just imperative to know. I would want to know. I would want my children to know. And as we're getting older, you know, with partners, that's a risk of passing it along. So I've encouraged him to do it. And we haven't really talked about all the implications of, like, because he knows what it is, and what it means. But I just, you know, keep kind of pushing him, “you should go get tested just so that you know. So that moving forward, you can kind of try and prepare.” We're just trying to minimize risk.

So we had a genetic profile done, being that they tested us adults who had the mutation so they could see, you know, where the mutation was. And then they tested the children to look for the same mutation. And some had it and some did not.

I don’t want them to go through what I went through. I mean, you have to be strong [INAUDIBLE]-- not that my kids aren't strong, it's just that they're young, and sometimes I feel bad, because it’s like, if they do come positive, I gave that to you. You know, so-- I pray that they don't have it, and that's what I'm trying to believe, that they won't have it. I mean, I know it's hereditary, but I'm hoping their kids' will have it, and then by that time, they'll have a cure, you know, three or four generations down, and it's just as simple as a shot or something. So, it's hard when, like they said, it takes two weeks. And it's really hard. You know, I don't want any of them, one of them, two of them-- so it's very difficult.

Yeah. How do you live with that uncertainty right now?
I don't know. I just-- I try to just put it in the back of my head. I try not to think about it. I try not to let it consume me, because I may work myself up and, you know, have an anxiety attack. And they may not even have it, so I try to keep my-- I try to put it in the back of my head and try to keep my stress level down, because stress can make my colon turn and, you know, it’s like when they need me, you know, and I can't be scaring them. Actually, I don't want to scare them.