I'm A Physician Who Had Breast Cancer, And Here Are The Knowledge-Based Decisions I Made For Myself
So, 2020 has really been a shit year.
It has been for nearly everyone, of course, and when the stuff stops hitting the fan, we all need to take a collective breath, pat ourselves on the back, and celebrate.
I had a busy year planned for 2020: I’m a gynecologic surgeon seeing patients and trying to build a badly needed menopause clinic in a local hospital here in Seattle. I’m editing a book, and consulting and providing telemedicine care for women in menopause as Chief Medical Officer at Gennev.
But then in January, I got a diagnosis of breast cancer, and suddenly I was making new plans. Somehow I had to carve out five weeks from this life to recover from a double mastectomy, then more time later for recovery from reconstruction. I managed it, barely, to have my first surgery in March.
I thought I had it pretty much under control. My patients were scheduled with other physicians, meetings were on hold, a bunch of work up-front meant I could relax and heal. In February, I went on a vacation to Mexico, where I spent a lot of time crying on beaches and into margaritas with friends. It helped. I came back ready to move forward.
And then COVID-19 hit, and it hit right here at home: epicenter, Seattle.
Suddenly the chaos and noise of my own life have expanded to a global level, and all of us in health care are scrambling to find answers, help others stay calm and safe, keep ourselves as safe as possible on the front lines, and meanwhile I’m trying desperately to ignore the little voice inside that’s saying, “What about me?”
As a physician and surgeon, I know what cancer looks like. I have an idea how it progresses and how bad treatment can be. I wanted to get on with it, have the surgery and whatever treatment so I could recover and get back to my life. But with my first surgery scheduled for mid-March, now it looked like those carefully extracted five weeks weren’t mine anymore.
Oh, and did I mention, suddenly my kids were home all the time? They’re pretty much grown, so I have it easier than many, but the advanced clusterf*ck of trying to “home school” an attention-deficit high schooler while sympathizing with my college kid who was missing out on some pretty important stuff in her education and future career (she’s a dancer) deflated any zen I managed to scrape together in a hurry.
This is a tough time for teens and young adults who rely on their social structures more than ever, and suddenly mine were stuck with a sick mom and Zoom.
Despite being a pretty practical person, I haven’t always approached my health practically. It wasn’t until I was diagnosed as pre-diabetic at 42 that I finally started taking some things seriously. Perimenopause had added some belly fat and bumped up my bad cholesterol, so I — at last — started exercising regularly and taking medication, since eating better wasn’t enough anymore.
However, as someone with a family history of cancers, I’m a huge advocate of screening and started annual mammograms at 40.
Now that’s irony, Alanis.
As with most women in their 40s, the mammograms showed that I had dense breasts, but nothing particularly concerning.
Then Gennev started working with MiraKind, an organization researching the connection between a gene defect called the KRAS variant and a greater likelihood of developing certain cancers. I got tested, and sure enough, I was a carrier. Knowing being KRAS positive could mean I was more susceptible to breast cancer, I added an MRI to my usual mammogram (remember, dense breasts).
Two days later, they called me and said, “So, there are a couple of masses on your MRI.” A couple of biopsies revealed invasive ductal carcinoma. More testing, more biopsies, more black and blue boobs.
Now I had a decision to make: I could get bilateral lumpectomies and sign up for a life of going in every six months and probably having to get biopsies every six months. Eventually they’d find something, and I’d be right back here again. I’m a doctor — I knew how I’d feel with these things on my chest, knowing there was cancer in them. So I decided on a bilateral mastectomy.
In the end, it was the right choice: there was more cancer that hadn’t yet been detected. It was small, sure; but it wouldn’t always be small.
The hospital where I would have my surgery started disallowing non-essential surgery the week before my mastectomy was planned. And surgery on anyone who was medically fragile – old, ill, likely to respond poorly to anesthesia, etc. – was postponed.
I wanted nothing to do with postponing the surgery. I had done everything to make taking those five weeks okay for everyone it affected — patients, family, colleagues. Just the thought of redoing all that was exhausting. I had taken the time to take care of me, and dammit, I was going to take care of me!
In the end, it came down to the fact that I was young and healthy going in, so I wouldn’t need an ICU bed that was needed for a COVID-19 patient. I’d be out the next day. So we went ahead.
On March 19, all my breast tissue was removed.
March and April were spent alternating holding my breath and breathing sighs of relief: biopsy of sentinal nodes revealed no signs of spreading. Testing of the tumor showed it wasn’t aggressive enough to require chemotherapy. Because I did what I did when I did it, the cancer was Stage 1. I’ll be treated with hormone therapy; I’m on Tamoxifen. They got great margins when they did the surgery, and I don’t need radiation.
Ask anyone who knows me: I’m pretty blunt. I’m never unkind, but if a patient wants a lot of touchy-feely handholding, they should probably find another doctor. However. Telling your daughters you have breast cancer is not an occasion for blunt.
Not only was I telling them I was sick, I also knew they would watch me for signs of what was to come for them. “Realistic but reassuring” is a delicate dance. Fortunately, I was able to be pretty reassuring. It was Stage 1, not a particularly aggressive form, and I’d be fine on the other side. But I also wanted to be honest with them about their own health and the screenings they’d need, given their family history.
I could complain about how unfair it is to have bad genetics, or how much it sucks to take care of myself and still have cancer, but I really have a “shit happens” approach to life, and it served me well. Yelling about how unfair it is — as much as I was screaming it on the inside sometimes — wasn’t going to help me or my kids get through it.
COVID and being isolated together certainly didn’t make it easier. This is a hard time for kids – their lives are dominated by social things, the groups they’re in, who they communicate with, the things they do. They’re missing out on things. So managing their emotions and my own is really tough; I’m maybe not as patient as I would be otherwise, because I’m going through some shit. I have cancer and it sucks. I don’t tell them everything because it wouldn’t help them. But I try to be open and honest because I know your imagination can sometimes be worse than the truth.
It could be easy to let cancer and COVID take charge and send me screaming to a safe room, but that’s really not my style. I take precautions to protect myself from the coronavirus, but I’m still seeing patients. I know that as a healthcare professional, I’ll get it eventually. I just intend to be at full strength when it happens.
I walk every day, three to five miles with my dog. I run three days a week. I’m back in physical therapy because too many hours performing surgery have caused problems with my neck. I truly think staying active has helped with my recovery.
Recovery was tough, not so much because of pain, but because COVID meant my friends and family couldn’t help the way they wanted to: they couldn’t come clean my house or cook meals, though many dropped meals on my doorstep, rang the bell and ran.
I have two sisters who live locally, and it was killing them not to be able to come and help. One sis is a chef and she just wanted to come and cook for me, but she couldn’t come into my house. That was hard, but honestly, it was harder for them than me, since I was pretty out of it for the first two weeks after surgery.
So, yeah, 2020 is a shit year, but at least some things will get easier now. No more mammograms for me, because the reconstruction surgery scheduled for July will be done using my own abdominal tissue. From now on, a check up involves making sure the area around the reconstruction is healthy and cancer-free, including the lymph nodes and chest wall.
I know a lot about health, particularly women’s health, because it’s my job. And I made a lot of decisions, together with my doctors, based on the knowledge I have. I wanted to share a few things that might help others have an easier time of it, COVID or no.
It might not prevent you from having health problems, but being fit can make it easier to handle the treatment and make recovery easier and faster.
Knowing my risks.
Diabetes, cancer, heart disease are all in my family history. Knowing that helped me make better choices. And the KRAS test prompted me to do the MRI that revealed the cancer while it was still early-stage. Knowledge matters.
Focusing on me.
When I got that pre-diabetes diagnosis, I decided it was time to get a handle on me – I’ve spent my life caring for others as a doctor, wife, and mom. I was trained in residency to “go until you drop.” But suddenly I realized I needed to focus on my own health too. I made changes in work and home life, ate better, took meds. I wanted to feel good and I did. And when this came up, I had good endurance, strong muscles, a strong cardiovascular system, even strong legs and abs to help me get out of bed when I couldn’t use my arms!
For the past few years, I had managed my sleep patterns to feel better, and through all of this, I managed to — for the most part — still get good sleep.
Embracing the WTF moments and moving past them.
Because I made great decisions for a solid few years before this diagnosis, there was a little “WTF?” that I did everything right and still got this disease. But we live in a toxic world, I hadn’t always made great decisions, my work has at times been really stressful, plus, I just had some bad dumb luck. There’s always been that bit of pessimism in me because my family history indicates that I have at least one cancer in my future. But, I thought, this can be dealt with, I’m healthy going in, and I’ll take this one day at a time.
Being ready to live with my post-surgery body.
I’ve lost sensation in my chest area. I bump into things, and I don’t even know it. It’s weird, and I’m mourning the loss of sensation there, but I knew it would happen, and I was at least somewhat prepared. Make plans. Have a wedge for your bed. Know what the drain looks like coming out of your body. Know who will help you shower and who will make you laugh when your life just has so much yuck in it. Because there’s a lot of yuck; you’re going to need your sense of humor. And if yours is AWOL, borrow some from a friend.
Balancing practicality and emotion.
Just because I knew what was coming doesn’t mean I didn’t have emotions around it. I had to let myself grieve the loss of my breasts even as I was taking control of the decision to have the bilateral mastectomy. I had to stop being practical and allow myself to mourn.
Finding medical providers I connected with.
Living in Seattle, I am blessed with having so many amazing medical professionals in cancer treatment. But I also wanted to work with someone I was comfortable with, someone I trusted with my body, with my future. I needed to feel they were making decisions that worked for me. Please know that you’re not hurting a doctor’s feelings if you decide to move on from them because you’re not connecting well with them. It happens all the time, and docs understand how important it is that you feel comfortable. I picked people I felt great with and felt we were making decisions for the same reasons.
Finding the blessings when I can.
Hey, I get a tummy tuck out of this – get lemons, make lemonade! I’m not exactly going to be voluptuous, but I’m good with Bs or even really big As that look nice….
THIS IS A BIGGIE: Get a screening regimen.
Don’t rely on self-breast exams — even when I knew where my biggest tumor was, I couldn’t feel it. Also, some people are pushing thermograms, claiming they’re safer than mammograms, but they are NOT safer, so do your research before committing. A mammogram isn’t perfect, but it’s a good tool and has saved lives. And you won’t get breast cancer from mammograms. The radiation is minimal: you get more from walking around for two weeks in the world. Be informed about your choices before you make them.
I could have put off the reconstruction until next year, when there’s a chance COVID-19 will be behind us, and things will be back to whatever “normal” there is on the other side. But I figured, 2020 is already a hot mess of a year, I might as well shove all the shit into this one and look forward to 2021.
So that’s what I’m doing. May you get all your shit behind you too. Now go schedule your next screening.
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