Joan

Age at interview: 63
Outline:

Joan has had several cancer diagnoses and tested positive for Lynch syndrome. She is a skilled self-advocate, and works hard to catch additional malignancies as early as possible. She is continually seeking additional information about the syndrome, her own genetic profile, and how her high cancer risk can best be managed.

Background:

Joan, age 63, works part time, cares for older family members, and lives in the East with family and various animals.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Lynch syndrome

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Joan’s experiences with cancer began when she was diagnosed with breast cancer twenty years ago, when in her early 40s. A decade later, she was diagnosed with colorectal cancer. She then had genetic testing, which led to a diagnosis of Lynch syndrome. Later she had bladder cancer, and later still was identified as having an RET gene mutation that is associated with higher risk for thyroid cancer. After living through three cancers and more than a decade of knowing about her elevated risk, Joan is expert at being proactive about her health, catching additional cancers as early as possible, speaking the language of clinicians, and being her “own advocate.”

Having young kids when she was first diagnosed was difficult, but Joan wrote a children’s book about the experience that helped her whole family be less afraid and have some fun. Her colon cancer was more advanced when it was caught than she expected, since she was having regular colonoscopies; she had 90% of her colon removed, participated in a clinical trial, and got back on her feet. “Because there’s so much cancer in my family,” she says, “I guess I’m a little bit more matter of fact than most people.” She is also very clear that while she is very open to talking about her cancer experiences, cancer in no way defines who she is.

In addition to doctor appointments and screening related to her own on-going cancer risk, Joan has significant care-giving responsibility for an older family member who is also affected: she tries to put both of their doctor’s appointments on the same day, when possible. She pulled back from a stressful workplace situation after her first diagnosis, and feels lucky that since then she has had jobs that are satisfying, allow her to feel a good sense of normalcy, and also permit her to take time when needed for treatment, screening, appointments and self-care. Joan’s family (including pets and rescue animals!) is the most important part of her life, and she is grateful for the joy her children bring and her husband’s constant support.

Joan continues to both seek and agree to additional genetic testing that may explain more about links among her cancers and why her illness patterns have proceeded as they have. Her cancer experiences have been less similar to others in her family who also have Lynch syndrome than she originally thought might be true. She also sees scientific understanding of Lynch as “a moving target” which has “changed a lot in the time period [from] when I was first diagnosed.” Her life includes a lot of time spent managing cancer risk, including some procedures recommended to further explore “dings, and bumps, and dots that everybody has” but which are called to the attention of her clinicians because of the extensive surveillance she undergoes to manage risk. Joan believes in the power of positive thinking, and that she is lucky to be “watched very, very carefully.” “Every family has a cross to bear,” she says, and high cancer risk “just happens to be mine.”

 

Joan appreciates getting results in a straightforward way.

Joan appreciates getting results in a straightforward way.

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And because there's so much cancer in my family, I guess I'm a little bit more a matter of fact than most people. And so I don't go in and cry. I just say, “OK, tell me what it is, tell me the worst-case scenario. Let's work our way backwards so I know what I'm dealing with.” So when it comes to the genetic counselor, just call me on the phone and tell me if it's negative or positive. You know, I don’t want to have to go-- I go to so many doctors, I don’t want to go back again.

 

Joan hopes for more certainty as new tests become available.

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Joan hopes for more certainty as new tests become available.

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So I just went back, which I do from time to time, because things change….There’s a lot more breast cancer genes and so forth that they’re looking for now. So I’m waiting for those results.

 

Joan has been tested for numerous genes related to her multiple cancers and cancer risks.

Joan has been tested for numerous genes related to her multiple cancers and cancer risks.

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Well, I guess I would look at the breast cancer, first of all, and say, OK, in the beginning I was tested for one particular gene. Then, over the years, I was tested for more genes. And then, just recently, I was tested for another whole set. So they keep-- the more they study, the more they have people like us to put the pieces together. And now, they're talk-- so there's some chatter about breast cancer possibly being connected to Lynch. Now, that's new. That wasn't something that was at all talked about when I was first diagnosed in either of those. And it’ll be fascinating to see what, if any genes, they do have that are somehow related to breast cancer.

 

Joan explains how false positives may lead both to unnecessary procedures and increased anxiety.

Joan explains how false positives may lead both to unnecessary procedures and increased anxiety.

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Well, one of my physicians said to me that, it’s unfortunate for, because those of us that are at high risk, because we had so much surveillance they find dings, and bumps, and dots that everybody has. But because we're at high risk, we have a lot of unnecessary exploratory surgery. And that makes it difficult. And then, as my husband says, when you have a hammer in your hand, everything looks like a nail. So every time something is a little awry, that's the go to, oh, it must be cancer.  So, but now, for me, because it's been so many years, and I've had a lot of the cancers, many, many years under my belt,  where I've been cancer free in those cancers-- when I have that follow-up testing for them,  I might think about it maybe a day or two before the test, and I'm a little anxious until I get the results.  But that was not true in the beginning. You know, you have to really have a lot of time under your belt before you feel that way.

 

Joan had surgeries three years in a row, two of them preventive.

Joan had surgeries three years in a row, two of them preventive.

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Was that at the same time when you had the breast cancer?
No, I wish I had made that decision. I had a mastectomy. The next year, prophylactically, I had a hysterectomy. And then the next year I had a mastectomy.
Wow. So you had three years in a row, three surgeries.
Yeah, and I should have just done the two breasts at the same time, but you don't-- you're not necessarily thinking that at the time.
Yeah, was it that you weren't thinking it? Or was it that you learned more later?
Yeah, I think it was that I learned more later. I was just, and plus, I was just focused on let's deal with what we're dealing with.

 

Joan highly appreciates her clinician for his skills, even though his style didn’t match hers.

Joan highly appreciates her clinician for his skills, even though his style didn’t match hers.

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He was just an exceptional physician, so I stayed with him during the time period that I need, that I needed to, but his style didn't necessarily match mine. But I felt that it was critical to compromise my, gee, his approach is different, and if I need his services again, I would go to him, and just say, “OK, you don't practice the way I would like, but that's all right,” because he's clinically very strong. But yeah, it’s just a balance. Sometimes they come in with new information, sometimes I do. It’s just a dialogue that we have.

 

Joan says she looks for doctors who balance being positive and personable with having expertise.

Joan says she looks for doctors who balance being positive and personable with having expertise.

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I, well, again, speaking for me only, I need to be  with physicians who shoot from the hip, but are positive. I fired a physician because he was negative and had me dead and buried. And I had another physician who I really didn't, he-- it's hard, because you want to go to the best, but you also need a little bit of bedside manner. But you don't want to compromise your health for someone being warm and fuzzy. So it's a delicate balance.

 

Facing mortality was tough for Joan in the beginning.

Facing mortality was tough for Joan in the beginning.

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Yeah, what was it like in the beginning?
It was scary. It was tough. It was facing mortality. It was facing mortality with little kids and thinking about what it would be like for them not to have their mom. And that's what pushed me through, kept me going for all the cancers, is “you're getting through this, you're going to beat the odds for your kids.” And so far, knock on wood.

 

Joan has chosen to eliminate negative people from her life.

Joan has chosen to eliminate negative people from her life.

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I think what cancer survivors and people going through cancer learn along the way is that you're given permission to  walk away from things that are stressful, because stress fuels cancer. So that, that's been a life lesson, that you can't be around people with stinking thinking.
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When you're going through cancer, you have to take all your energy and put it into positive. You can't be sucked out into people's negativity. Because you just can't put your strength that way.

 

Joan found it difficult that her co-workers often shared other tragic cancer stories.

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Joan found it difficult that her co-workers often shared other tragic cancer stories.

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And I was working at the [BLANK] at the time, and I said to one of the psych nurses, “what is it, why do people think that I'm the cancer expert?” Why are they all saying, “Oh, my uncle had this cancer, and he died from it,” and so and so forth.

 

Joan is so well informed, she says people often ask her if she is a medical professional.

Joan is so well informed, she says people often ask her if she is a medical professional.

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It was interesting, because one of my physicians said that Lynch patients tend to be very educated about Lynch syndrome, because you have to be. So we tend to be a population that's really on top of  what we need to do, and how we need to be observed. And in most cases,  hopefully, it's caught before it gets too aggressive. That doesn't always follow, that doesn't necessarily follow the pattern but.
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We look at mamos, or tests, or whatever it is, and there's some kind of a dot there, then I'll say, "well, how do you know? Tell me why you know it's not cancer and it's a benign something or other, how does it present itself?” So one becomes very educated in understanding not only the language, but also the images. And I think the more well-versed one is, and the more you understand the language-- I frequently have people ask me if I’m a physician or a nurse. Because I know the language. I know how to work the system.  I know how to get what I need to get for my family and myself. And that's really, really important. I can't stress that enough. You cannot take anything at face value. And you really have to be your own advocate.

 

Joan sees learning about Lynch as ongoing for both patients and healthcare professionals.

Joan sees learning about Lynch as ongoing for both patients and healthcare professionals.

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You know, it’s one of those things. For as much as we know, we don't know. And I think that everybody's still trying to figure this thing called Lynch syndrome out. Because it's like a moving target. It's changed a lot in the time period when I was first diagnosed, in terms of what cancers they think are affiliated with it and what the percentages are, chance of you getting it. That seems to have slid up and down some.
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And I'll keep an eye on it. I keep going to a specialist who specializes in Lynch syndrome, every couple of years, to see if there's anything new on the forefront, new discoveries. That, plus the genetic counselors seem to know, too. So it's a work in progress, I think, for everybody.