Recently, Dr. Ley was featured as a speaker on breastcancer.org in their Advice From Doctors Who Had Breast Cancer seminar. She shared her experience and advice along with other doctors who are survivors of breast cancer.
I was diagnosed eight years ago. I was diagnosed on my daughter’s fifth birthday, sadly. I had a screening mammogram, which was normal, but I had felt something so I had an ultrasound. That was also nothing. But I remember thinking while the radiologist was doing the ultrasound that my breast tissue looked denser than I thought it was. And then I had a new version of a risk evaluation software that I’d put on my computer so I thought, “Well, I’ll just do my risk calculator to make sure it’s working.” And my risk was higher than I thought it was. So I ended up getting an MRI. And so all within the space of about a month or so, all those things happened and I ended up having a cancer on the MRI. Then I had a biopsy and then I got the pathology. The pathologist called me, which is a little bit different being a physician. You can get your results directly from your colleagues, which has its pluses and minuses. But he called me on my daughter’s birthday to say that it was breast cancer. So then, I… Actually my husband was remembering yesterday. When I told him I was doing this today, he was remembering that I freaked out. But it’s funny. In retrospect, I don’t remember feeling that way, but I guess I must have.
I think I was at work, but I was finished with work and I drove right to his office and I started crying and telling him about it. So I guess I did from his perspective. And also your spouse or your family doesn’t know how to react either. They’re just as scared as you are.
So anyways, I end up choosing to have a double mastectomy. And partly for privacy reasons, probably mostly for privacy reasons, I ended up going to another city for my treatment. I had a strange sense of being ashamed of having the diagnosis, and so I didn’t really want to talk about it. And I didn’t want it to, I was only in a new job for about eight months, and so I didn’t want it to affect all that. So I had to drive two hours for all my appointments and surgery. And for one of my surgeries, my husband couldn’t even come. It had to get rescheduled so a friend had to take me. So anyways, I had the double mastectomy and it turned out I didn’t need to do any other therapy. Some therapy was recommended, but I went to see multiple people, including Dr. Swart, and in the end I decided that the side effects outweighed the benefits for the additional therapy for me and so I didn’t do any other therapy. I think that’s one of the challenges of being a physician with breast cancer who takes care of breast cancer patients, is patients often ask me about what therapies I had. And for a long time, I didn’t talk about my breast cancer at work probably for several years.
Being a surgeon and a survivor, you don’t want to disclose it and have it affect the patient’s decision-making because we’re all unique. Our cancers are different. Our life situations are different. What treatments are available sometimes are different. So it’s always a struggle. But I think it’s best to let people know about it. But you can also say, “I, just like you, I want to have privacy too. So I don’t always share all the treatment details with people.”
How did your experience change what you do for the people you have the honor taking care of?
I think before I was diagnosed, I was already quite empathetic and I felt like I took my work home a lot in terms of being worried about my patients. And I had a few people say to me, “Oh, this will make you so much more empathetic for your patients.” And I found that really, that was hard for me because I was like, I didn’t really need to have breast cancer to learn how to be empathetic. But what I did learn is about the recovery process.
I tried to do my surgery and get back to work as soon as I could. It turned out that year, I had forgotten to sign up for short-term disability, so I wasn’t getting paid and I had to pay for my health insurance while I was off. And then I did, the place I went to turned out to be out of network so that was more expensive. And so I tried to get back to work and I went back after seven weeks, which is usually what we tell patients, “Oh, you can go back to work after six weeks.” I couldn’t open the doors in the hospital. I had this whole system of getting it partway open and my leg in there and my arm to wrestle my way in to the hospital. And doing things that required me like pushing my hands together or pulling and pushing, which is a lot of what we do in surgery, was very difficult because my muscles were weak. And so I really try to have an in-depth conversation about what people do at work, how stressful their work is, and encourage them. And sometimes if they’re not hearing me, try to use my own experience to tell them, “You really need to take time for yourself with the understanding that not everybody can financially do that. And then if you’re not able to do that, how can we help you get back as soon as we can? What kinds of things can we do to get you back so that you can earn a living?”
I think the other thing is about the overall health. You think you’re diagnosed with breast cancer, you think, “Oh my God, I’m going to change my diet. I’ll exercise every day. I’m going to be this new person that’s never going to get cancer again.” It’s very difficult to do that. I think we all have very busy lives and lots of commitments. We have lots of commitments to other people, and it’s hard if you’re in a family or with other people at home. You can’t just change your diet because then everybody has to change their diet. So I try to encourage people. “Yes, I only have 15 minutes at a follow-up visit to tell you how you should change your diet, but that doesn’t mean you have to do all of it tomorrow. And to try and give yourself a break for different things. If you didn’t clean your house because you’re sick from chemotherapy, it’s okay. It’ll get clean later.” Those are the things I’ve tried to… Just give people a break. Give yourself a break and try.
And also to recruit, ask patients, “Recruit other people around you to help you.” I think that’s about the loneliness. Even though Dr. Swart and I worked together and we had our patient-physician relationship, it’s really hard to make time to talk to one another and then you think, “Well, you don’t want to talk about this depressing thing how we both had cancer or you don’t want to depress your friends or your family members talking about it,” but I think people want to help when you’re diagnosed. They don’t always know how to help. And you don’t even have to talk about it. Maybe you just go out to lunch with someone or go for a walk with someone. I know I’m digressing from what you were asking, but that’s part of the recovery process that I don’t think I understood until I was through it that it doesn’t just stop the minute you’re done with treatment. Like one of the quotes you had, this is something you carry with you forever. So finding ways to be able to talk about it with people.
And for me, being the person the patient can talk to, like you said, I want to be the person the patient can come to when they are having an issue that maybe isn’t related to their surgery.
You said your daughter was 5 at your diagnosis, how do you manage that?
So she and I haven’t talked very much about it because at five, she was a bit young, I thought, and how do you describe that? And since I didn’t look a lot different physically and I think I didn’t want to talk about it either. But I have a son who’s five years older than her, so he was 10. So we went to lunch one day and I explained what was happening and what was going to happen and that I was going to be fine. But I think that what Dr. Munster said about losing your immortality, that was one of the hard… I actually forgot about it because it’s been eight years, but actually it’s truth. If I was really honest with myself, I haven’t forgotten about it. It did take me a year to get used to how my body felt afterwards. It was almost a year to the day from my surgery that I was like, “Oh, now I don’t notice the changes any more today.”
And then the psychological changes, I had once became very depressed because I thought initially I was going to take some of the hormonal medicine, so I abruptly stopped an antidepressant I was on so I became depressed and I couldn’t find someone to help me. So I ended up having to go back to another town two hours away to get treatment for that. And then you don’t want your patients to know that you’re vulnerable because you don’t want them to think that you’re not capable of taking care of them. And I had another physician tell me that when I was diagnosed, don’t talk about it with your patients because they’ll use it against you. So all those kind of fears. But I think the main, immortality, like my husband, and he was scared of course, but he could not understand naturally. He couldn’t understand that feeling that like, “Oh my God, I could die from this someday.” And I think that’s very hard for someone who hasn’t experienced it, whether they’re your family or your friend, to grasp really what that feels like.
And now it’s translated. When I turned 50 two years ago, I started worrying about something else. My dad had cancer and he died at 64. And so I started thinking, “Oh, maybe I only have 14 years left.” And I don’t think if I hadn’t had cancer at a younger age, I’m not sure I would have thought that when I turned 50. It just colors how… Like some of your quotes, I think, and a couple of the people have said, it just changes who you are. Hopefully for the better and hopefully not for anxiety provoking all the time. But that is one thing that is different for me, that I do talk to patients about that sometimes because we forget to ask patients about their mental state.
What do you do in your every day to try to be as healthy as you can be?
I’m trying to eat more vegetables. That has been my goal for the last couple of years, get more vegetables on my plate and I’ve become a fan of trying to find new recipes on Pinterest. I don’t really do all the TikTok and everything, and then I share them. I share the recipes with my patients. I haven’t quite formalized that yet, but I’m hoping to have a recipe of the week for people. I think that that’s something simple that we can all do. And if I can model it myself by doing it for myself, and then that’s what I do. My goal would be to do more yoga but that doesn’t always happen. But that’s something else that I like to do for my health.
This information is provided by Breastcancer.org.
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