Janet S.

Age at interview: 55
Outline:

Janet S, age 55, was diagnosed with Stage II breast cancer and tested positive for a mutation on her ATM gene. Having an ATM gene mutation increases her risk for a breast cancer recurrence and other cancers. She had a bilateral mastectomy, reconstruction, chemotherapy and oophorectomy. She takes Femara, an estrogen blocker, even though it makes her feel old beyond her years. Despite the extremely low odds, Janet S is “devastated” that her ATM mutation could affect future generations. Janet S gets her strength from her faith, family, and friends.

Background:

Janet S. is a White woman who lives with her husband in a rural area in the South.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Janet S was diagnosed about three years ago with Stage II breast cancer through her annual mammogram. Her husband and daughter accompanied her to all appointments with the surgeon, who she says, “checked all the boxes” that a good doctor should have. She also tested positive for a mutation on her ATM gene, a rare and little-understood genetic mutation that increases risk for breast, ovarian, pancreatic and liver cancers, and prostate cancer in men. “That was a rough day,” Janet S recalls. Although extremely farfetched, she acknowledges, it still boggles her mind that her ATM mutation could affect “people that haven't even been born.”

Janet S credits the genetic counselor for translating medical jargon into layman's term and using visual aids to explain the complexities of genetic mutations. Wearing her logical medical social worker hat, Janet S knows that ATM is part of a spectrum of genes that can affect breast cancer. As she sees it, BRCA mutations are at the top and get most of the research. As a very rare genetic mutation, ATM is “toward the bottom,” meaning little research or knowledge. But her “mother side” remains angry. After all, if science can do so much, why not for ATM?

Aware that “statistically” with an ATM gene mutation, breast cancer can come back with a vengeance, Janet S opted for aggressive treatment. She had a bilateral mastectomy and reconstruction, elective chemotherapy and an oophorectomy. She takes a daily dose of what she describes as “Satan-sent” Femara. This estrogen suppressant, with its chronic joint pain, fatigue and depression, have aged her immensely. Janet S says these chronic effects are worse than the very tough (but time-limited) chemotherapy, mastectomy and reconstruction surgery. But it’s all worth it, she says, “at age 55, I've got a lot of life ahead of me.”

As tough as it has been to lose her natural breasts and her old vitality, Janet S counts her blessings. Her Stage II cancer is highly survivable, she had a relatively short run chemotherapy and had no need for radiation—so many others have it so much worse. Her husband and young adult children are very close and caring and motivate her to persist. She has found sisterhood in her breast cancer support group. Her deep faith and sense of humor have helped her cope with breast cancer and its aftermath. To health care providers who must deliver devastating news, Janet S cautions them to not run away from emotions. “Just sit and let that patient know that you're spending an extra 60 seconds, two minutes. If you were to start a stopwatch and sit in silence for 60 minutes, you would be amazed at how long it takes 60 seconds to go by.”

 

Janet S. is angry that the ATM gene might affect future generations in her family, and research is slow.

Janet S. is angry that the ATM gene might affect future generations in her family, and research is slow.

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I'm a self-professed control freak. So to think that something that far-reaching into the future is that far out of my control just makes me, it just angers me. I just don't think-- I hate to sound like a little toddler and say, that's not fair, but that just does not seem fair. That just does not seem fair. And because it is less common, there is very little known about it, because there's very little research done on it, because the numbers drive the research.

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So if the greatest expert on your kind of cancer, or even the ATM, walked through your door, what would you ask her or him?
The first thing that pops into my head when you say that is, how can it affect grandchildren I don't even have? That just, for something so small to have such a potentially far-reaching impact, it just, it doesn't even seem real. I mean, for me to go through this is one thing. The potential of my daughter going through this is something I can't even really let myself think about. But when I take a further step, and I put it into people that haven't even been born yet, it just boggles my mind. And it makes me angry. And I don't know what I'm angry at. You know, I want to-- there's a part of me that says, if science has done so much, then why can't it do that? And I know the naivete of that statement. I understand that perfectly. And the rational side of me realizes that that's a naive question, but the human and the mother side of me says that that is a very legitimate question. So that’s the first thing that comes to mind.

 

Janet S. is uncomfortable during an MRI of her breasts, but also finds something to laugh about.

Janet S. is uncomfortable during an MRI of her breasts, but also finds something to laugh about.

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So we went in for further testing. I had an MRI done, and, and that, that was a very interesting experience. I don't know if anybody's shared with you, or if they did them the same way. But I had to lay on my stomach and I had to put my chest, I had to put my chest in this metal thing that had cut-outs for my breasts to go through, not, so the radiation wouldn't affect the rest of my body, but they could also have just a clean image of the breast tissue itself. And I had to just, you know, if you've ever had an MRI, you have to lay perfectly still, and that’s, it's hard to be perfectly still for a long time. It's uncomfortable. The noise and the closeness, that stuff doesn't bother me, but the being still bothered me quite a bit. And I just kept thinking, I am here to zero in on breast cancer. I have ca-, I still haven't had, I can't remember where my biopsy came in, whether it was before or after the mammogram, probably before. Probably before. But I kept thinking, I have cancer. I can't believe this is happening to me. I have cancer. And I kept-- I am a Christian, I am a woman of faith. My favorite verse is Psalm 56:10, and it says, "Be still and know that I am God." And it just grounds me. It just helps me to remember that if God can create all of this, he can take care of something as simple as me, you know. So I kept repeating that to myself, that was helping me stay calm. And then I started getting cracked up. I started getting tickled, because I thought, this is how a milk cow feels, to have this, their udders attached to something. And just lay there while they're-- you know, I thought, this is how a milk cow feels. So I kept going from, be still and know I'm God, and I feel like a milk cow. So and I would get chuckled, and I would kind of giggle, and they would say, you need to be still. And, you know, but it was my way of coping with, with what was going on. But I still say, that is how a milk cow feels, but that's, you know, beside the point.

 

Janet S. says her counselor pitched her explanations at the right level for her.

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Janet S. says her counselor pitched her explanations at the right level for her.

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It’s a very convoluted, twisty conversation…she used a lot of visual aids. She had some graphics I could look at…she kept things at an understandable level…when she would say something in a medical jargon, she would immediately come around and put it into layman’s terms.

 

Janet S. says BRCA is better known and better researched than the ATM mutation she has

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Janet S. says BRCA is better known and better researched than the ATM mutation she has

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My gene is ATM gene, it's a rare breast cancer gene. There's not a whole lot known about it. Of course, BRCA is, I think, the top. And because it's at the top, it gets most of the research. ATM is not at the very end, but...about 90% toward the end. It's a very rare.

 

The contrast between treatment advances and persisting questions about hereditary risk leave Janet S. in tears.

The contrast between treatment advances and persisting questions about hereditary risk leave Janet S. in tears.

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How can it affect grandchildren I don't even have? That just, for something so small to have such a potentially far-reaching impact, it just, it doesn't even seem real. I mean, for me to go through this is one thing. The potential of my daughter going through this is something I can't even really let myself think about. But when I take a further step, and I put it into people that haven't even been born yet, it just boggles my mind. And it makes me angry. And I don't know what I'm angry at. You know, I want to-- there's a part of me that says, if science has done so much, then why can't it do that? And I know the naivete of that statement. I understand that perfectly. And the rational side of me realizes that that's a naive question, but the human and the mother side of me says that that is a very legitimate question.

 

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.

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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.