Sue
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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Sue grew up knowing about cancer. She lost her father to brain cancer at age five. Her grandfather died young with stomach cancer. Her mother lived to age 87, but cancer was on that side of the family too. As they reached midlife, Sue and her siblings felt lucky to be “escaping that horrible disease.” That changed! Her brother at age 43 was diagnosed with colon cancer. After a recurrence sixteen years later, he tested positive for the HNPPC mutation, otherwise known as Lynch syndrome. Sue, then in her early 50s, decided to get the genetic test—for her children’s sake. With no signs of polyps, she thought, “Oh, I’m negative,” but she recalls “Lo and behold” the results came back positive for Lynch. Heartsick at the potential for her children, Sue describes it as “one of the most devastating days my life.”
After a couple of angry, “Why me?” days, Sue picked herself up, realizing with life “it’s quality and not quantity.” She does what she can to mitigate risks, getting frequent screenings, exercising, and eating healthily. She chose to have a full hysterectomy/oophorectomy to avoid Lynch-associated gynecological cancer, noting it was the right decision at her age. Had she been in her 30s, she would have weighed the risk of getting cancer against being “a slave to hormones” for the rest of her life.
To honor her brother, Sue has become a volunteer scientific research advocate at a cancer research center, where she shares the patient’s perspective on hereditary and Lynch-related cancer research. Wearing her advocacy hat, she rues the stigma of hereditary cancer risk and is “infuriated” that these individuals, who are now screened for early signs of cancer, could face barriers in getting life or disability insurance. Grateful that her health plan covers preventive care, she knows that many other plans are not “willing to pay for screenings.” Instead, they wait until something's wrong, and then pay for more aggressive treatment. While excited about the emerging science of genetic cancer risk and precision medicine, Sue believes that public awareness and insurance coverage for Lynch and inherited cancers, in particular, have a long way to go.
Sue does not let Lynch syndrome—or her advocacy work—dominate her life. Without being “Pollyannaish,” Sue puts things in perspective. She has come to accept that like many people, her genetic background increases her health risk. She acknowledges “that perhaps someday I'm going to get cancer and perhaps that cancer is incurable, and I may die from cancer.” But in the meantime, Sue lives by the “YOLO” motto (You Only Live Once). She focuses on making, “every day just the best day possible because we don't know what the next day will bring.” With her kids launched into adulthood, Sue retired, and with her husband is traveling more and enjoying life to its fullest. On the spur of the moment, she is more likely to drop her to-do list, and accept that dinner invitation at her son’s house to play with her grand kids.
Sue thought about what her positive results mean for her children.
Sue thought about what her positive results mean for her children.
Devastated. Even before I knew. When even the thought that they could have inherited something from me. Besides all the good things they got from me, they inherited some bad shit from me. Oh, just that thought was-- I couldn't even, like I said. I did have a couple of very dark days. I’ve never kind of felt that way before. And I was not in a happy place. I was having a really tough time dealing with it.
Sue’s feelings about her Lynch syndrome diagnosis changed over time.
Sue’s feelings about her Lynch syndrome diagnosis changed over time.
It’s really important to put it in perspective. As I said, when I first found out I had Lynch syndrome, I felt like I received some type of death sentence. And my husband had to remind me that ‘you don't have cancer’. 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.
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So living with Lynch syndrome is just one more little issue that you have to deal with as you go on with life. So regular screenings are a part of my life. I'm fortunate to be part of the health care system that's been super, super supportive and watches my history of screenings, let's me participate in decisions for how often we do screenings.
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There are all types of hereditary risks in everybody. I mentioned before, people that have high blood pressure, people have heart disease, people have strokes, mental illness. There are a range of things that I feel like knowing that I have a risk of cancer, I've taken better care of my body. And I'm getting screens regularly so that we can detect it early.
Sue has had a lot of fear about her risk, but also feels lucky to know about it.
Sue has had a lot of fear about her risk, but also feels lucky to know about it.
And their cancers may range from, you know, all types, blood cancers to reproductive organ cancers. And they can't figure it out. And that there was a point, after hearing these stories a few times that I went, ‘you know, maybe I'm the lucky one’. Instead of always feeling like I'm the unfortunate one that has this genetic high risk of cancer. Maybe I'm the lucky one because I know. And I can screen and take care of myself earlier rather than letting that monster get into my system and eat me up.
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As I said, when I first found out I had Lynch syndrome, I felt like I received some type of death sentence. And my husband had to remind me that you don't have cancer. 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.
Sue is often the only person, in a group of cancer survivors with a lot of cancer family history, who has had a positive genetic test.
Sue is often the only person, in a group of cancer survivors with a lot of cancer family history, who has had a positive genetic test.
Something that's very fascinating, and this is a whole different perspective-- when I joined the [organization] research advocate team, there were about a little over 20 people involved in it. And you know you go around the room, and you introduce yourselves, and you tell your stories, and I would say that the great majority-- in fact, I may be the only one right now that knows I have a hereditary risk for cancer. And the majority of them are cancer survivors. So they've had cancer and they don't know why. And some of their stories, that cancer runs so much in their families, and they've gone through genetic testing, and they haven't yet found a genetic mutation that causes all of the cancer in their families.
Sue doesn’t want her health status to dominate her life.
Sue doesn’t want her health status to dominate her life.
I will not let it dominate my life. I need balance in my life. Yes, cancer is a part of life, and a part that I want to keep hidden from my life, or away from my life, but I know that risk of cancer is always there. But I don't want to dwell on that at all.
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So it's not like you turn that part off. But I don't talk about it a lot. A lot of my friends, or close friends know I have a hereditary risk for cancer, but it's not something that I, that's worth sharing.
Sue thinks there is great need for more advocacy organizations specific to hereditary cancers.
Sue thinks there is great need for more advocacy organizations specific to hereditary cancers.
But now we need more people with other hereditary cancer risks to start following in their lead and creating an equal amount of advocacy. And there are some organizations for Lynch syndrome, but nothing as prevalent as organizations like FORCE for breast cancer, the Komen Foundation. It's out there. And in my state, if I wanted to find a breast cancer support group, it would be a snap. It would be super easy. And finding other individuals affected with Lynch syndrome is not that easy. So I think that there's a lot of work that needs to happen. And as we, I'm sure we'll discover other cancers caused by genetics in the future. We need to expand the advocacy for all of those cancers.
Sue’s focus is on the risk people with genetic cancer syndromes face of becoming “uninsurable.”
Sue’s focus is on the risk people with genetic cancer syndromes face of becoming “uninsurable.”
There's also a definite stigma associated with being insured. I'm fortunate that I was 50 years old when I found this out. I was pretty established. I already had life insurance. I already had long-term disability insurance to protect my family in the event something happened to me. But if I went to increase my health, my life insurance right now, or I think if my [close family members] were looking to get disability or life insurance, I'm not so sure that they would be successful. I have heard that there are some companies that would insure them, but I've heard many, many, many, many more times that they are not going to be insurable living with that stigma of having a hereditary cancer condition. That infuriates me. And so I feel part of my advocacy also is to make people aware, and perhaps someday we'll get some type of a change so that [others] wouldn't have to deal with that same kind of fight.
Sue is a scientific research advocate.
Sue is a scientific research advocate.
So I decided after a long career to retire and that one of my retirement goals was to get involved in advocacy for cancer, specifically for research into Lynch-related cancers, and also advocacy for people who live with hereditary cancer risk. I joined a volunteer group at the [organization] as a scientific research advocate. And I've had the opportunity to share perspectives from the patient side as the researchers recommend new ways of treating cancer for early detection, and that makes me feel super good that I can contribute in some way. In a way, I'm honoring my brother and my nephew who've been dealing with cancer. I want to make sure that the medical community and the scientific research community continue to find a way to either treat and cure cancer, or better yet, find a way to detect it earlier, or find a way that we can eliminate the threat of cancer from our lives.
Sue recognizes that clinical guidelines for Lynch remain incomplete.
Sue recognizes that clinical guidelines for Lynch remain incomplete.
I know there are guidelines through the NIH, but Lynch is still being discovered in a lot of ways. We haven't quite figured out exactly how often somebody needs to get screened in order to prevent these different cancers from forming. So it needs to be-- you need to consider the guidelines but add a little bit of balance based on your situation and how you feel about yourself and what your lifestyle is.
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.
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.