Those with Inherited Cancer Risk

People we interviewed offered a variety of insights, based on their own experiences, that they wanted to share with others who have an inherited increased risk for cancer.  Many emphasized the importance of living life fully and of refusing to let your cancer risk define who you are.  They described how it is possible to focus on life plans and projects even while managing elevated cancer risk, cancer screenings, prophylactic surgeries and cancer treatments.  This part of the website summarizes specific messages that our interviewees wanted to give others facing similar challenges and opportunities.  

 

Amy says knowing your risk factors can be helpful but cautions not to let them define you.

Amy says knowing your risk factors can be helpful but cautions not to let them define you.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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…What might you say to somebody who said, God, I just learned I have PALB2. What would you say to them?
I would say congrats because you're one step away, you know, in the genetic predisposition world, I guess. I don't know if that's even the right way you say it. But you're one step ahead because you're aware. You know, don't let it hold you back. I would say, you know, take the necessary actions to, first of all, get your screenings now to make sure you're OK now. And then stay on a schedule every year, and hopefully, join me in trying to raise some funds and awareness for the gene. Don't let it, don't let it define who you are. You know, just take it as another thing. OK, this is another hurdle I have to go through. And, yeah, it sucks, but it could be way worse. You could, you know, have cancer, or you know, move on, I guess. Don't let it hold you back. With time, as time passes, it gets easier to process and to accept. It's easier for me to say that now. Two and a half years ago, I would have probably been in a different-- I know I was in a different place. So, it does get better. It gets a lot better, and I'm a hypochondriac, and if I think it gets better, than that say something.

Understand What Elevated Risk Means for You

Many people we interviewed described how realizing that cancer runs in their families spurred them to take action, including getting genetic testing and adopting available risk-reducing practices. Some interviewees with Lynch syndrome, like Carrie and Matthew, note that it can be difficult to decide when the right time is to learn this information. Lisa S. and Irina say that a family history of ovarian or breast cancer among Ashkenazi Jews warrants being tested for BRCA and using this information to consider whether to have prophylactic surgeries.

 

Matthew says that if you have a lot of cancer in your family, it may not be a fluke so you should get genetic testing.

Matthew says that if you have a lot of cancer in your family, it may not be a fluke so you should get genetic testing.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I don't know if we were talking about genetic testing at that point in time. But just the whole knowledge is power of, you know, make sure you get, if you've got a family history, if you've had multiple family diagnoses under age of 40, there's a really high, that's not environmental. That's not some fluke. There's a family history of some sort. You need to make sure that you're getting screened on a regular basis, and making sure that she's doing that for her family members, and children, and everything else, and looking at that. So just had that conversation around, encouragement, and the whole idea that having the knowledge of that family history is powerful. And that it allows us to seek out the appropriate screening protocols.

 

Ronnie points out that it’s difficult to know for sure when is the best time to learn about increased risk.

Ronnie points out that it’s difficult to know for sure when is the best time to learn about increased risk.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I wish I had known that I had BRCA. I mean, I say that now. I don’t kn-- part of me says that now. But a part of me wonders if I could have processed it at an earlier age. But I do wish, I do really wish that I had known. I say to myself, if I had known this, I would have-- I think I would have made certain decisions. I would have lived my life I think differently.

Some people we interviewed described how learning about heightened genetic risk can cast a “dark cloud” over life; they want others to be aware of this possibility and to seek appropriate support. Becky says that “the mental and emotional side of this is at the very least equal to the physical side.”

 

Mary encourages people to seek help for the mental health side of things.

Mary encourages people to seek help for the mental health side of things.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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The whole mental health aspect of it, it’s very much a part of it, and to seek help for that, whether it is just counseling or you know, getting a medication, which can take a while to find something that works. But just to seek the help for it, not only for your cancer or for whatever your diagnosis is, but for the mental health aspect of it, to seek help for that too.

 

Janet S. wishes she had known she might feel depressed after her diagnosis.

Janet S. wishes she had known she might feel depressed after her diagnosis.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I wished I had known to expect that deep depression. That blindsided me. That absolutely blindsided me. It's not a normal state of mind for me, and that was the, I mean, I've had other, like I'm like anybody else-- I've had other tragedies in my life. But that was the most, that was the darkest, most depressed, I want to say void. I'm not even sure that's the right word. I just felt like I was in the deepest, darkest pit. I felt like I was in a black abyss. Maybe that's the better way to put it. Because I couldn't see an end, I couldn't see sides, I couldn't see a top, I couldn't see a bottom. It was just all-encompassing. And I have heard since then that is not uncommon.
But that did blindside you.
Oh my god, it blindsided me. And of all my wonderful caregivers, and caregivers, and, or medical team that I had, nobody told me about it. So when I started experiencing it, I kind of had a what the hell's going on thing here.

Learn Directly from People Who Share Your Risk

Several people we interviewed said that while they value their clinician’s expertise, it is important to learn directly from others who have been managing the same specific genetic cancer risk or syndrome. Briana describes finding out at a national BRCA advocacy conference where to get the flap reconstruction surgery she was denied by local surgeons who said she was “too skinny … for flap reconstruction.”  She says learning directly from women who were “skinnier than I was, … [and] able to get flap reconstructions, because they had found surgeons that had more experience in doing those surgeries,” solidified her decision to pursue the surgery she wanted.

 

Desiree says it's important to connect with others who have walked your journey.

Desiree says it's important to connect with others who have walked your journey.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And so, one of the reasons why I started facilitating support groups was to provide a space for people to be able to come together, and connect, and really talk about and learn that, OK, if you're six months, then this is what potentially may come at a year. It doesn't have to be, but these are some of the things that can happen, just to be able to manage people's expectations, because oftentimes, we have no idea what's around the corner. And when things happen, even though it may be the course of survivorship, because we didn't anticipate it, it could freak us out. And if you don’t, if you tell your family, they're like, oh, you'll be fine. You look good. And they're quite dismissive. But if you're with people who have been on the journey, they could say, oh, yeah, you kind of go through this at this point. But it passes. Can't really always say that it will pass for you as quickly as it passed for me, but know that it will, and give you time points and give you more insight in terms of how the journey could be, what the road could be, with its twists, its turns, and its winding. So I think that, you know, getting support is important. 

 

Paul emphasizes the importance of learning from people who've actually had the same procedures you are undergoing.

Paul emphasizes the importance of learning from people who've actually had the same procedures you are undergoing.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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You mentioned wanting to do this interview in order to be of use. Anything more you want to say about that?
Again, for people who are going through this or are going to be facing it, I think it’s a good idea for them to have as much information as possible. And speaking to or listening to people who have had it done is, I think, the best way. Because, again, you know, doctors have great information and they're able to give you that information, but they've not had it done. So unless you are in a rare circumstance where somebody on your medical team has had a gastrectomy, then they’re giving you academic information. And they can give you information based on patients they've seen and what they've seen of recovery, but, again, they've not had it done. So I wanted to do this just so other people could see it. And even just knowing that other people have gone through it and have had a hard time, because if you're going through this recovery and you're having a hard time with it, you know, you might feel like you're failing in some way, or you're having complications other people haven't had, or you're not emotionally or psychologically tough enough for it. And, you know, I'd like people to know that that's not true. That it's dark for everybody, and it's hard for everybody.

Be Proactive about Your Care

Most people we spoke to highlight the importance of being proactive about their health care. For our interviewees, being proactive means screening, self-advocating within the health care system and deciding upon and preparing for prophylactic treatments.  Just about everyone spoke about the importance of screening, whether a breast self-exam, mammogram, MRI, colonoscopy or endoscopy.

 

Asante notes that doing a breast self-exam can lead to early detection, but also warns that screening identifies rather than prevents breast cancer.

Asante notes that doing a breast self-exam can lead to early detection, but also warns that screening identifies rather than prevents breast cancer.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I just want to spread the message that, you know, early-- I felt strongly that early detection is what saved my life. Because knowing my risk and knowing how to do self-breast examinations, I found my lump myself. And I immediately went to my doctor, and they immediately took action. There was no second guessing. You know, the only second guessing was me seeking out other opinions. And so I just really feel strongly that early detection is what saved my life through, through this cancer battle.

Yeah that’s one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.

 

Heather says the number one thing is to stay up on recommended screenings, because though they can be a hassle they pay off.

Heather says the number one thing is to stay up on recommended screenings, because though they can be a hassle they pay off.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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But my, my number one thing is just get the screenings. I know some people shy away from the doctor. I know some people don't want to know the results or the outcome. They don't want to face it if something is there. Get the screening, get the screening, get the screening, get the screening. I know money can be a burden, and I know not having access to it and access to health insurance, I know these are all factors. But they can be figured out. You know, it’s get that screening and stay in front of your health, because as long as we're able to do that, we are at an advantage. Right? I met with a genetic doctor at [location] last year to check in on my screenings. Am I still doing the right thing? The last time I talked to somebody was six years ago, and it was this genetic counselor in this moment when I was diagnosed. So here's what I'm doing. Is this still right? And I had a follow-up with her. And one of the things she said to me that resonated so much is that, at this point, what I am doing, it takes my risk of colon cancer potentially down to almost 1%.
Wow.
Due to the frequency of my screenings and my now history of clean screenings. It was like, I’m now a little bit below the general population's risk of colon cancer, and I carry Lynch syndrome. And like that's crazy. But that's just from getting my screenings done. So.

No matter their quality of care or insurance coverage, people we talked to described the need to be a self-advocate within the health care system. They emphasized  being resourceful, speaking up, and pushing back. Joan, for example, wished she had told her clinicians “you know there’s cancer in my family” and pushed for more frequent colonoscopies than initially recommended.  As Sue put it, “you have to take some responsibility in coordinating all that care. And if one of those docs tells you something that doesn't seem to jive with something else, you need to ask those questions. And you know, don't stop until you find the right answers. Nobody's going to take care of you.”

 

Lisa J. emphasizes the importance of researching your doctors and being clear about who you are.

Lisa J. emphasizes the importance of researching your doctors and being clear about who you are.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But the point being was that-- they-- and this is something in terms of advocacy-- you have a- you look at your network in terms of your insurance. But you also have to do a little research on your doctors. You know, even if it's a quick Google scan, it's better than nothing. Sometimes if you can call and maybe get a feel from the office. But I- I also like to group my doctors. You know, they don't have to know each other. But it's nice if they can refer to each other or, you know, you trust this one to refer. And also being very clear with your doctor the type of patient that you tend to be. You know, I'm not someone who really-- it's not that I don't take medication every day-- but I do-- but it's- it’s- I'm not prone for medication. Like if you just say, you should take this, I'll most likely say no first. And I'm like that about surgery. You really have present it. 

 

Briana notes the importance of not taking “no” for an answer, networking, and finding needed resources.

Briana notes the importance of not taking “no” for an answer, networking, and finding needed resources.

Age at interview: 28
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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Given the kind of range of experience you've had with your health care professionals, any kind of advice you might want to give, them?
Again, be a self-advocate for your health. Advocate, advocate. I mean, there are so many different insurance companies, and health systems, and private clinics. And, you know, people fall on the spectrum of having great health coverage to no health coverage. I mean, there is resources if you're willing to find them. Like, I was a year out of Peace Corps service, and had gotten out of school-- like I had zero savings. But I was still able to come out almost the same, even traveling and doing all of this stuff. I mean, if it's something that you really want to do, you just have to call all of the places, and all of the doctors, and just start talking to people. I mean, I found out about the big grant that I applied for through somebody networking, basically, through FORCE. I met somebody that told me about it. So just advocating, and researching, and networking.
Mm-hm. So that's the kind of advice you'd give to somebody who's just starting out on your journey.
Oh, yeah.

People with genetic markers, like BRCA, talked about the importance of self-education and mental preparation when considering a prophylactic oophorectomy, mastectomy or other organ removal.

 

Cynthia advises others with BRCA to think carefully about multiple issues when considering prophylactic surgery.

Cynthia advises others with BRCA to think carefully about multiple issues when considering prophylactic surgery.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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I would tell her that she needs to take time to think it all through, that she needs to completely educate herself, like I was talking, not just the medical components but everything. Talk to some different people. And that what might be good for one person is not necessarily the right decision for another, and that it's her decision. It's her body. And she has to do what's right for her. And as much as I, you know, could sit here and say, “This is the way to do it,” it's not. I mean, it's just not. And you have to be OK with it. Because if you're not OK when you do it, it will tear you apart. It's big, in my opinion. It's one of the biggest things that you're going to do. You're changing a huge part of you, as a woman, in my opinion. And so if you go and do that not being vested in it fully, that, that could be a pretty scary outcome when you're going through the process of accepting and moving on and all of that. So you have to be there and you have to be doing it because you're making that choice, not someone else. So I'm not going to talk you into it. That's your decision. But I can tell you my experience. And that's all I can offer.
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I think that making sure you have a doctor that you are confident in and comfortable with is extremely important, that you do your research on your doctor as well.
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But you still need to be mentally prepared for everything that it's going to throw at you. And know that there is a, a wide range of things that could go really well, could go really bad, and just be mentally prepared for it. And just know and understand what the whole thing, in its entirety, looks like. And I just think that's so important.

 

Lisa S. says it can be easy to misunderstand the advantages of prophylactic mastectomy.

Lisa S. says it can be easy to misunderstand the advantages of prophylactic mastectomy.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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The geneticist, three years ago, you know, they give you a whole lot of information-- blah, blah, blah, blah. And when it came to the breast, she says, “Well, we can”-- right away, she says, “After the ovaries,” she said, “Well, after we take out your ovaries,” she said, “We can do a, you know, mastectomy and take off your breasts or-” I'm like, no, they're fine. I don't really understand why you'd want to do that. And I don't think I really understood the significance because I know that a lot of younger people do that. And I don't think I understood that. I was lucky. It came back at DCIS, which means it was stage zero. It could have come back as stage two, or stage three, or invasive, which a lot of times, I was very-- I look at the Facebook support pages, and most of the women, it's invasive. And they do chemo and radiation. And that's why they get rid of their breasts first. I didn't have to do that. I didn't have to do the chemo and radiation.

Try to Adjust Your Beliefs and Expectations

Many people said changing your expectations can help you live well in the face of elevated cancer risk.  As Lisa S. put it, BRCA is a “game changer;” you can’t “mourn what you just had.” She says, “You've got a new experience coming up. Someone's handing you a baton, a new baton. It wasn't what you expected, but you better run with that thing.” Other people note it is important to focus on what and who is important, including yourself.

Some people emphasized that having an unwanted, uninvited inherited cancer risk is not a certainty that one will get cancer, nor is it a death sentence. As Lori puts it, inherited breast cancer risk is “not a good situation to be in, but it's not always the end of the world.”

 

Christian says that having Lynch syndrome is not a death sentence and it’s important to line up your support system.

Christian says that having Lynch syndrome is not a death sentence and it’s important to line up your support system.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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I would say that it's not a death sentence. And that it will be OK. And that you just have to accept it for what it is, and don't make it into something it's not at this point in time. But that it’s, in this moment, like, you're OK, hopefully. And reach out to people. Find your supports. Because just hearing, you know, “Oh, I have Lynch, and this is what they told me,” that's scary. Being told that, “Oh, well, at any point in time, you are at this percentage of getting cancer.” Find your support. But that, right now, you're OK. And that don't make it into something it's not.

Other people highlighted that having a genetic cancer risk does not make you different from other people. As Heather sees it, “I'm perfectly healthy, happy. … I just have to get more annual medical screenings done than you do.”

 

Sue notes that Lynch syndrome is just one more thing to deal with but life is to be enjoyed.

Sue notes that Lynch syndrome is just one more thing to deal with but life is to be enjoyed.

Age at interview: 61
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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All of us have genetic backgrounds that affect heart disease, stroke, cancer, et cetera, et cetera. You really have to just accept it and move on with your life and you do what you can to mitigate, but not dwell on the fact that perhaps someday I'm going to get cancer and perhaps that cancer is incurable, and I may die from cancer. We’re all going to-- as my brother once said to me, “We're all going to-- something's going to get you. We're all going to end up there.”
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We really need to embrace every day. We need to be proactive with our health and our attitudes in life. You need to make every day just the best day possible because we don't know what the next day will bring. Now that I'm looking back on life, even since then, I've lost friends to other diseases. I've lost friends to accidents. Life is uncertain. So living with Lynch syndrome is just one more little issue that you have to deal with as you, as you go on with life.

 

Eve emphasizes that increased risk is not the end of the world, but having a good team of clinicians is key.

Eve emphasizes that increased risk is not the end of the world, but having a good team of clinicians is key.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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What is it that you would want people to know about somebody living with a rare illness like you? What is it that you want them to know?
That I am just like them. I just go to the doctor more often. And I'm a little more anxious about the future, you know, or just about the future for different reasons. I live with my husband, and I have my menagerie, and I go to work at the insurance office. And I'm just at the doctor's office more often, and more attuned to changes in my body.

 

Facing Your Fears

Many people said that genetic cancer risk and repeated screenings induce deep and persisting fear.  As Kerry put it, “it’s scary, super scary -- the scariest thing that I’ve ever had to face”  Our interviewees clearly acknowledged, however, that while fear is normal and sometimes difficult to manage, it is important to not let it ruin your life.

 

Terry advises others to talk about fears instead of keeping them inside.

Terry advises others to talk about fears instead of keeping them inside.

Age at interview: 61
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I'll definitely talk about it. And I've talked to other people that maybe this is their first colonoscopy. And I've had plenty of them and you know, talk them through that. Again, the first time, for a lot of people, they're scared of the unknown factors out there. So the more you're able to talk to family, friends, your doctor, you are able to get an ease of, well, maybe this isn't that big of a deal. It's still a big deal but try and get it out. The worst thing you can do is just keep it inside and driving you crazy. And that's easy advice, because personally, I internalize a lot of things. But the more I am able to talk to other people, the more at ease I am thinking, “well, this isn't that big of a deal and it's going to be OK.”

 

Denise says religious faith can be one way to cope with genetic fears.

Denise says religious faith can be one way to cope with genetic fears.

Age at interview: 51
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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It’s not the end all. It's just not. It's just the beginning, and to definitely have those conversations with God, and give him your fears. But also allowing for that quiet time to let him talk to you. You know, it was always like, you think you need an answer, but just to be quiet and take in the quiet moments and let go of fear. Fear is the devil by far. Nothing to fear. Just keep moving forward.

 

Ronnie says not to let fear after a diagnosis of elevated genetic risk ruin enjoyment of good health.

Ronnie says not to let fear after a diagnosis of elevated genetic risk ruin enjoyment of good health.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Fear is a big thing. So, it can really mess-- especially with genetics. Now when you get a diagnosis, the fear is quite understandable. But with genetic, the results of genetic testing, the tricky thing is, like, you may be OK. At that time I was OK, but it makes you feel like you're not. And so, all these days, perfectly normal…
Mm-Hmm.
…healthy days were like, ruined because of it. So, the results of genetic testing, I think you have to really-- you have to watch. It's totally understandable to be fearful. But you have to also be careful not to let it ruin the present because it can.

Get Support from Others Who Share Your Risk

Several people emphasized the importance of getting support from those who have experience managing the same specific cancer risk.  To be most useful, they say, such support should be both honest about what can be difficult and encouraging.

 

Lisa S. talks about the importance of finding support from others who share a specific diagnosis of increased genetic risk.

Lisa S. talks about the importance of finding support from others who share a specific diagnosis of increased genetic risk.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But once I got the DCIS, I realized I needed people who had gone through breast cancer as well as having the BRCA gene because that's a whole other element. Knowing you've got this hereditary gene means that your chances of getting breast cancer are I think between 60 and 80. And you have different choices once you come up with DCIS. DCIS, for most of the population, could maybe mean a lumpectomy because the abnormal cells are non-invasive. They're in situ. They're in one place. They're just abnormal. So if you do a lumpectomy, and you get clear margins, boom, you're on your way out the door. But with BRCA, because you have between a 60% and 80% chance of getting breast cancer, you have to consider bigger options, which I didn't understand, when I first learned about BRCA. I needed community to make me figure this out. And then I wanted-- the Komen community was less important to me than the BRCA community. I think because, again, if I was just a regular person, who had discovered breast cancer, I could have just done a lumpectomy. But you have that BRCA, and you've got to speak with people. You've got to figure out, “Well, I had it in one. Do I do it in the other? What are my choices? What are my possibilities?” And you just feel a little bit-- I don't mean damned, but you just feel like, “I eat right. I exercise. I'm thin. I'm all those things.” But yet, still, I have to deal with this gene that makes me choose options that most people who would have DCIS would just choose a lumpectomy. But I got to go the full meal deal. I got to get rid of them all. And I think having that support network makes you feel like, “Oh, I'm not alone. There's other people who had to decide this before me. They had to figure this out. I need a group. I need a hug.” I needed that hug, ooh

 

Paul wants people facing a polyposis syndrome to know that asking for help is not a sign of weakness, and that they will get through their struggles.

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Paul wants people facing a polyposis syndrome to know that asking for help is not a sign of weakness, and that they will get through their struggles.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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It felt good to be able to talk to somebody who was facing the surgery, to tell them, you know, and not sugarcoat it, like it's going to be really hard. People are going to tell it's going to be hard, but you don't know. They're not being, you know, because doctors want to tell you what to expect, but you want to put the most positive spin on it that you can. But I think it's better for people to know that, that first six months, to just live it. Just go through it. Don’t try to-- you want to be positive about it, but it's going to be dark. And you're just going to have to experience that and live through it. But also, let them know that you will come out the other side, and you will be OK. So it was nice to be able to talk to some people about that.
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And it's OK. It’s OK to-- you have to ask for help. You know, I was I was lucky enough to have my wife by my side, who was there for me. But not everybody has that. So, you know, if you need some help with cooking, or well, not that you're going to can do much cooking-- but if you need help with housework, or getting somewhere, or even medical issues, you know, understanding or knowing how to how to ask for things, you know, you should ask for that help. It's not it’s not a weakness. It's not a failure. It's tough.
Yeah.
But also, it's important for them to know that you will come out the other side and you will be OK.