PSM

Age at interview: 70
Outline:

PSM had endometrial cancer in her early 40s, colon cancer in her mid-fifties, and received a Lynch syndrome diagnosis in her 60s. She was motivated to do genetic testing because she hoped having more information would benefit her family. Since her Lynch diagnosis, she does more cancer screening tests and regular check-ups with doctors. She was able to retire from work not long after her second cancer diagnosis, and now lives a good life with her beloved husband on the East Coast.

Background:

PSM is retired from a career in finance. She is Caucasian and lives with her husband in the East.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Lynch syndrome

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PSM had endometrial cancer in 1992. She had treatment and a hysterectomy at the time, and had no further cancer experiences for 15 years. In 2007, routine blood work revealed a dangerously low blood count. As advised by her doctor, she went to the Emergency Department of the hospital. She was admitted, diagnosed with advanced colon cancer, and had surgery within a couple of days after the initial blood test. The hospitalization was difficult in a few ways, and PSM emphasizes that they “didn’t manage my pain level very well in this particular hospital,” or listen when she said she was spiking a fever. But she got through the surgery and subsequent treatment, with a lot of support from her husband, who attended “every single treatment, every single one.”

A close relative of PSM’s died young of colon cancer, but in her family mentioning people who had passed resulted in a lot of upset so “you learned at a very early age, don’t talk about this.” PSM doesn’t recall being asked if she was interested in genetic testing after her first diagnosis, and wasn’t offered it immediately after her colon cancer experience either. It was when she moved to a new community and began seeing different doctors that she was encouraged to get genetic testing for Lynch syndrome. At first she “didn’t see the point”, and was worried that having more information would just make her feel like her “body is a time bomb.” But when she realized genetic information might be helpful to others in her family, she decided to go ahead. PSM was diagnosed with Lynch syndrome in 2018.

Knowing about her Lynch syndrome has changed PSM’s life in a couple of ways. One is that it led to a lot of conversations with siblings and others. Some of these have gone well, and others have been quite difficult. PSM has had to reckon with the fact that each person in her family will make his or her own decisions about how to cope with the reality of PSM’s hereditary cancer and its possible implications for their own health. Another impact of the Lynch syndrome diagnosis is more frequent colonoscopies, annual exams, and visits to specialists. These don’t always make her feel better, and they sometimes worry her. But she is glad for the diagnosis because having and sharing it is part of being “responsible for the rest of my family.” She also wishes she knew she “had this gene” before she got colon cancer, because then “I wouldn’t have had to get to the stage that I was at... [and] they would have been able to catch it” earlier. When she began reading about Lynch, she found out that people who have it often get “a female cancer.” But without knowing about Lynch, PSM “had no way of knowing that the two [cancers] were linked” and “would never have come to that” on her own.

After PSM’s second cancer diagnosis, she found herself eager to retire from her high-paced career in finance, and also wanting to live in a quieter, less urban environment. She has been spending good time with family, including a vacation that “was just magical.” She “tries to live a good life,” which she regards as her own personal form of religion. Reflecting on a number of difficult experiences she has had with medical care, she notes she hopes clinicians will refrain from “judging your patient on their appearance,” remember that “each patient is different,” and “acknowledge what patients have been through” since they’re the ones in “the whole process” while many doctors are just with them for one part of it.

 

PSM is persuaded to be tested only after several doctors recommend it.

PSM is persuaded to be tested only after several doctors recommend it.

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The oncologist that I went to at [INSTITUTION] did not mention anything about Lynch syndrome. The first person that did, actually, I think was the oncologist I went to up here in [LOCATION]. And he said, “you know, you really should have genetic testing.” And I was, “no, you know, I'm not having genetic testing.” I just didn't see the point. I said, “so this is going to be, you know, something that I'm going to be nervous about.” And he did not push me, you know, in any way. But he said, you know, “at some point,” you know, he was basically, “think about it. It would be a good idea.” So I have to go for colonoscopies, obviously, more often than most people. So when I had, I think, my first colonoscopy up here in [LOCATION], my gastroenterologist said, “You really should have genetic testing.” And I said, “well, why? You know, what it is going to do for me?” And he said, “well,” you know, “we can--if anything happens, you know, and then if anyone in your family”-- it mainly became about my family. And I started to think about that.

 

PSM fears knowing her genetic status would be too “unsettling"

PSM fears knowing her genetic status would be too “unsettling"

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I just don’t want—I just—I know it's there. But I just don't want to think that way. I just don't want to think that my body is a time bomb, because I would probably not get out of bed if I did that.

 

PSM found information about additional risk too much to take.

PSM found information about additional risk too much to take.

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I was reading the information they gave me, you know, about the syndrome and everything. And it's like, well, you know, stomach, and the liver. It’s-- I don’t-- I stopped reading it, you know. Even before I started chemo, you get all this literature from the hospital. And it's wonderful and everything. After a while, I just stopped reading it. I said, “I don't want to know any of this. If it happens, it happens. And I'll deal with it then.” But it's like, it’s too much to think about. It's too much to-- “oh my God, what if this happens? Oh my God, what if that happens?”

 

PSM describes having a complete hysterectomy (removal of uterus, fallopian tubes and ovaries) after being diagnosed with endometrial cancer.

PSM describes having a complete hysterectomy (removal of uterus, fallopian tubes and ovaries) after being diagnosed with endometrial cancer.

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I had-- it was endometrial cancer. It had not gone outside of the endometrium. So it was inside too. But I had-- but I said to the gynecologist then, “take everything out,” because knowing about the—the female insides, everything is so interconnected. And this is such an unpredictable disease, I did not want to leave my ovaries, you know, anything. So he kept asking me, “are you sure,” you know, “you want to do this?” And I said, “yes, I'm sure.” I was 42 at the time. And so I went in and I had a total hysterectomy. at age 40-something.

 

PSM says she learned at an early age not to talk about cancer risk.

PSM says she learned at an early age not to talk about cancer risk.

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I mean my mother, and her-- they didn't talk about these things. They just-- it was just like something that they had to bear. My mother gave a little more information. My grandmother, if you mention the people that had passed, crying. And then my mother would start to cry. So you learned at a very early age, don't talk about this. Don't talk about your aunt and uncle that you knew who died, at very young ages, not from cancer. But don't talk about it, because it just upsets everybody. And so you don't ask questions. You know, we always knew that grandpa-- my mother's father, had colon cancer. He is the genetic link, and that was, you know, because that's what he died of. And he was very young. He was 51.

 

When PSM’s doctor bills her incorrectly she notes that fighting about money is important but takes a toll.

When PSM’s doctor bills her incorrectly she notes that fighting about money is important but takes a toll.

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Also, the first time where--when I had the hysterectomy, with the-- I think it was the, yeah, the anesthesiologist, and, you know, sending me a bill for visits that didn't occur, and, you know, then, you know, having to fight that, you know. You’re going through this other fight. And then you’re, you know, you have to fight on another level. And, you know, it becomes very daunting, and very upsetting. And I think speaking out is very, very, very important, not necessarily just in my situation, but I think on all levels of the human experience. It's extraordinarily important to stand up, and just say, 'this isn't right. And I want to do something about it.”