Janet B.
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Janet B. had a pea-sized lump in her breast for as long as she could remember but was not concerned until a suspicious spot was found during an annual mammogram. A biopsy confirmed she had non-invasive ductal carcinoma in situ (DCIS), and early form of noninvasive breast cancer. A hospital acquired infection resulting from her biopsy delayed treatment for several months. Treatment, recommended by her small-town medical team, included a bilateral mastectomy, breast reconstruction, and 40 radiation treatments.
Her treatment was riddled with complications, and foremost a severely botched reconstruction surgery performed by the only local plastic surgeon. She underwent a latissimus dorsi flap breast reconstruction, a complex procedure that uses upper back muscles to rebuild breast tissue. Looking back, Janet says the procedure was not only poorly explained but poorly executed. The muscle was not tacked down correctly and the larger than requested implants made her breasts hang unevenly, causing unbearable breast pain, headaches and backaches. When the plastic surgeon refused to remove the implants, Janet did extensive research and traveled several hours away to have the implants removed; she now feels “halfway comfortable.” In retrospect, Janet wishes she hadn’t taken “the first answer” she got.
Janet was always “very independent,” but breast cancer taught her to ask for and accept support from her family. She so appreciates that two of her six siblings moved to be with her for this journey. Janet is especially grateful that her sister was there through the physical pain and cried with her as she absorbed the disfigurement of the botched surgery. This support helped her “fight with everything” she had and “stay positive.” Janet, who had been living on disability since her colorectal cancer diagnosis twenty years ago, also found much-needed financial assistance through her hospital and local support groups. No stranger to cancer, Janet notes the stark contrast of quality of care between the two experiences.
Unsatisfied that one side of her chest looks “different than the other side,” Janet plans to seek multiple opinions about whether and how the botched surgery can be repaired. Her experience underscores that “as a patient, you have to speak up.” Janet wants others in a similar position to know it is important to not “take the first answer you get,” to “do more research on your part as a patient,” to not “assume what this doctor is doing to you is correct,” and to “keep fighting, until you find the people you f
Janet B. describes having limited access to doctors because of where she lives, and the research she did on her own.
Janet B. describes having limited access to doctors because of where she lives, and the research she did on her own.
Because they, where we live, sometimes you have to go an hour either north or south to get help with other doctors that may not be, because we have a limited number of doctors here in our town. There may be only one of one kind. And then there's more than one of the other kind.
Janet B. preferred to have a lot of information.
Janet B. preferred to have a lot of information.
You have to make a lot of phone calls, a lot of phone calls. You have to do the research if you've got a computer. If you get on your phone nowadays and look up information on any kind of cancer things. Do, do a lot of research. Get, get on there and, and look up each side and to see what it says. Some sites are, are just, you know, basic information. And there's other sites that are a little more detailed. And then if there's a phone number on there, call those people up and ask them, you know, “What does this mean?” Or, “What does that mean?” And try to get the information.
Janet B. says, “learn to speak up.”
Janet B. says, “learn to speak up.”
As a patient, you have to learn to speak up. Don't take the first answer you get. Do more research on your part as a patient. Just because we had only one plastic surgeon here in town, don't just stick with him because he's local. Do more research. Do something else because this is your body. This is not his body. If you're not happy, go to another doctor. Go to four doctors. Go to five doctors until you feel like this doctor is the one that's going to want to help you.
Janet B. says, “Learn to speak up.”
Janet B. says, “Learn to speak up.”
As a patient, you have to learn to speak up. Don't take the first answer you get. Do more research on your part as a patient. Just because we had only one plastic surgeon here in town, don't just stick with him because he's local. Do more research. Do something else because this is your body. This is not his body. If you're not happy, go to another doctor. Go to four doctors. Go to five doctors until you feel like this doctor is the one that's going to want to help you.
Janet B. encourages others to accept help when it is offered.
Janet B. encourages others to accept help when it is offered.
Let them help any way they want to help. If they want to come over and cook you dinner, let them cook you dinner. If they want to help clean your house or go to the store for you or do your laundry, any little simple thing that they say, “Can I help you do this? Let them do it.
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My neighbor would say, “Let me come, let me come. Is it Okay if I come over tonight?” And “Let me cook dinner for you.” And we would say, “You know what? That'd really be nice because we’re both exhausted. We're both tired. We both are just, you know, really need the help.” And I would encourage that with anybody that offers for you to do that, you know.