Becky

Age at interview: 39
Outline:

Becky, age 39, tested positive for a mutation on her BRCA1 gene at age 30 after learning that it ran in her family. She stopped years of screening during her pregnancy. While breast-feeding her infant daughter, a couple of lumps in her left breast led to a breast cancer diagnosis at age 37. Her treatment entailed chemotherapy, left mastectomy, radiation, right mastectomy with reconstruction, and removal of her ovaries and fallopian tubes. Becky credits her recovery to great insurance and health care, incredibly strong social support, and a keen sense of humor.

Background:

Becky is a White, Ashkenazi Jewish woman who lives with her husband and three-year old daughter in a suburb of a Midwestern city.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Becky at age 30 tested positive for a BRCA1 genetic mutation after learning that it ran in her family. For several years she had aggressive breast cancer screenings but stopped during pregnancy. Then while breast feeding her three-month old daughter, Becky noticed a couple of lumps in her left breast. As a first-time “breast feeder” she just assumed it was part of the package and ignored them. A few months later when they didn’t go away with the plugged milk ducts, Becky made an appointment “just to see what was going on.” Despite having a BRCA gene mutation, Becky recalls, breast cancer was not within the “realm of possibility.” She went to the clinic alone with no worries. That changed very quickly. Even before the mammogram, the nurse practitioner placed her hands right on Becky’s shoulders, looked her in the eye and said, “this isn't going to be good.”

And it wasn’t. Becky, at age 37, knew she had breast cancer even before leaving the clinic; she was “shell-shocked.” Fortunately, Becky was relieved when the nurse practitioner called to say that “it wasn't metastatic.” Yes, she knew “it was going to be a tough road,” but she could raise her baby; "it would be okay.” Her comprehensive workplace insurance covered her care at an academic cancer center. She describes her a team as “the most amazing people with big hearts and so smart.”

Her treatment included chemotherapy, left mastectomy, radiation, right mastectomy and reconstruction, and removal of ovaries and fallopian tubes. Post-treatment depression was helped by a counselor at the cancer center. Due to banked leave time, flexibility to work from home, and supportive colleagues, Becky was able to do her job managing scientific projects during her treatment. But life has not returned to its pre-cancer, pre-motherhood normal. Becky, who used to be “judgmental of hypochondriacs,” describes her new self as “a worrier.” Her once laser-sharp memory and ability to concentrate are not the same. Becky acknowledges the pile-on of cancer, treatment and risk of return, along with her new role of motherhood contribute to this new normal.

Becky counts as “really bright spots,” her husband, mom, sister and best friend. She recalls with gratitude, someone from this circle accompanied her into the doctor's room for each appointment. They were “a second set of ears” and afterwards, they interpreted what they had heard. This, Becky notes, often raised follow up questions, which she then messaged to her doctor. Yes, her family lives far away, but as Becky says, “You wouldn't know that by how they were here for me, physically and emotionally, during the whole process.” Of her best friend, she says, “it's unconditional love, right?” Friends, she notes have “chosen to be part of your family,” and are there to share a good cry or to crack a few jokes. Her keen sense of humor provided levity and took her mind off the pain and worries. Humor in its way reminds her “that this is a tough moment and it's going to be over,” and asks her to consider how she is “going to look back on it?”

 

Becky says she received her diagnosis in a way she appreciates.

Becky says she received her diagnosis in a way she appreciates.

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So I went in. I met with my primary doctor, my OB-GYN. And she played it cool, but she said, “I want you into the breast center.” It was a Friday afternoon, of course, when I had my appointment. So they said, “We can get you in Monday.” So I went in Monday, and really, I remember just not even really thinking about it over the weekend. I didn't have anyone go with me to the appointment. I just wasn't worried. And so, I got in there, and it was the same nurse practitioner who had said, “have your babies.” And she did the physical examination, and she sent me in for the mammogram. And I could tell from the physical examination that things weren't going well. So she sent me in for the mammogram, and I was really appreciative of her. She came in before my mammogram even started, and she just-- she put her hands on my shoulders and she looked right at me and she said, “I got to tell you, this isn't going to be good.” And she said, “I just wanted to be a straight shooter with you, and this isn't going to be good.” And I just, I really appreciated that. I hadn't appreciated her straightforwardness before, with the have babies, do this, you know, do that. But in that moment, I really appreciated that.

 

Becky says she trusts her doctors.

Becky says she trusts her doctors.

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My medical care at the [LOCATION] was astounding. I just came across some of the most amazing people with big hearts and so smart. And I just, I trusted everyone the whole time. You know, some people really want to Google everything and feel like they're making their own decisions. And I learned very quickly in the IVF process for my daughter that Googling things was not good for me. Too much misinformation, too much emotion, too much worry tied with it. So I really put my trust in my doctors and never felt like they steered me wrong or felt like they were, they understood my personality and what I needed to be doing for me, too. Everyone in the chemo treatments were amazing. I did deal with some depression when it was all done. I was able to work with a counselor right there in the [CLINIC], which was so reassuring that they were right there in the [CLINIC]. That it wasn't like I had to-- that it wasn’t someone who didn't work with this situation day in, day out. That they really had heard my same story so many times and knew how to help me with it. I was really grateful for that resource. Yeah, everyone, I remember Doctor [NAME] told me that she was basically handing me off, that she didn't need to see me every time I came in anymore. I burst into tears just because you think, I wish I had never met any of these people. But man, they just-- it went so far beyond medical care. And I'm so appreciative of them and just feel like they're-- my dad always talks about our hall of fame wall in the [NAME] house.
That's OK. It can be bleeped out.

And we don't actually have a hall of fame wall, but it's like, so like my professor, who, you know, has just been an amazing part of my life and then has turned into such an amazing friend, he's on the hall of fame wall. But really, my medical oncologist, my surgeons, my radiation oncologist-- all of them, they're absolutely on the hall of fame wall in our houses. So, yeah.

 

Becky believes her doctor did the best job possible explaining things but she still didn’t understand most of it until later.

Becky believes her doctor did the best job possible explaining things but she still didn’t understand most of it until later.

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But, as for Dr. [NAME], I mean, I've got-- because I have a binder of every bit of information that came across the table-- I've got all his drawings, you know, explaining all of my different options. I felt like he did a really good job of explaining them to me. And it's one thing that I've thought about looking back on all this is, because there are certainly moments where I felt like, oh, I wish I had known that, or I wish someone had explained that a little bit better. But I think a lot of that information, there's just no way I could have digested it until afterwards anyway. So I'm not sure that anyone could have done a better job with more information ahead of time or explaining things differently. You just can't understand it until you've been through it in a lot of ways.

 

Becky describes her father feeling guilty.

Becky describes her father feeling guilty.

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My dad said that he actually thinks he would have thought twice about having kids if he had known that he had this 50% chance of handing down the gene. And I just laughed at him when he said that. I said, “oh, for heaven's sakes, Dad. You know you wouldn't give us up for anything.” I said, “don't be so dramatic.”

But yeah, he really felt horrible about it, still feels horrible about it, will probably continue to feel horrible about it for a while.

 

Becky has a suggestion for how to elicit questions from patients.

Becky has a suggestion for how to elicit questions from patients.

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Ask multiple times, “is there anything else?” And ask, ask those prompt questions that aren't yes or no, and, because it's going to take people time to feel comfortable sharing the really awful side effects in a lot of cases that come with this. They're not parts of your body you feel comfortable talking about.

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I think someone just coming right into this is going to have a much harder time really feeling open to discussing all the weird little things that are going on with their body. And if a doctor isn't showing that they're taking the time to have conversations as long as they need to actually be, if they're not asking really pointed questions about specific things, they might not get the information they need to make a thorough treatment plan. So that would be my advice.