One Year Later: How COVID Changed my Breast Cancer Experience

It’s been one year.

One long and crazy year.

One year ago today – on March 9th, 2020 – Lucia received her breast cancer diagnosis.

It seems fitting that we mark this month – March 2021 – by sharing Lucia’s* story, which began at the same time that COVID-19 came to Minnesota.

A broken mammography machine delayed Lucia’s January mammogram until March 9th, where an immediate biopsy after the mammogram found breast cancer. “It was the scariest thing I had ever heard,” Lucia admits. “I got a call from a Nurse Navigator the next day and scheduled an appointment with a surgeon for the following week – literally the week that COVID hit.”

Remember that week?

Lucia does.

On Friday, March 13th, Minnesota Governor Tim Walz declared a peacetime state of emergency and a “Shelter-in-Place” directive. By Monday, March 16th, all schools in Minnesota were moved to online distance learning. That day, Lucia received a call from her surgeon’s office letting her know that she could only bring one person with to her appointment the following day.

Her daughter, home from college due to the COVID lockdown, went with to the appointment. “We walk into the clinic and a staff member at the door checking people in said to me, ‘You can’t have anybody with you.’ My daughter – who is a teenager – was mortified!” laughs Lucia, remembering the look of teenage shock and horror on her daughter’s face at that moment.

“But one of the nurses says, ‘Wait, wait. I have one person’s name on a piece of paper.’ She reads my daughter’s name and says, ‘You’re the only exception. We realized that between the time we called you yesterday and this morning, things have changed so rapidly with COVID that only the patient is allowed in for appointments and nobody had time to call you.’.”

With a friend’s wise counsel, Lucia had arrived at that appointment knowing she wanted a double mastectomy with reconstruction. The doctor was surprised she had made a decision already, and told Lucia there was good news and bad news about this decision. “The doctor said, ‘Well, as of today, a double mastectomy is considered elective surgery, and (our health system) has canceled all elective surgeries due to COVID.’,’ Lucia recounts. “Then the doctor says, ‘BUT, we saw some other things come up on the MRI of your other breast, so we want to do a biopsy of your other breast.’, and I thought, OK, we’ll see what happens.”

The next day, following the breast biopsy, Lucia’s doctor calls again with good news and bad news. “I knew what my doctor was going to tell me and so I said, ‘Let me guess: the bad news is that I have breast cancer in both breasts, and the good news is that now I can have a double mastectomy!’.”

When the surgeon confirmed this, an enthusiastic “YES!” was the first thing out of Lucia’s mouth, followed quickly with an apology to her doctor, “I am so sorry. I am probably the only person who has ever cheered upon hearing that she can have a double mastectomy.”

At the next day’s appointment with a plastic surgeon, her doctor left the exam room to determine when surgery could be scheduled, and when he came back in, “He was like, ‘Oh my god, my nurse reminded me that my surgery schedule is wide open because all elective surgeries have been canceled due to COVID. I can pretty much do your surgery on any day!’ So I picked the following week – Monday, March 23rd – for surgery!”

Unfortunately, her surgery was soon cancelled. “My doctor called, ‘Lucia, I hate to tell you this, but we have to postpone surgery because nobody knows what’s going to happen with COVID and it’s anticipated that cases will spike and (our health system) wants all hospital beds reserved for this.’.”

Lucia was understanding, but worried when told that it wouldn’t be until late May or June when it would be rescheduled. “That was 2 months away!” Lucia exclaims. “They hadn’t tested my lymph nodes or staged my breast cancer, so it was scary! They put me on tamoxifen in the meantime.”

Mid-April, her surgeon had called with a date: April 30th for her double mastectomy with expander placement for reconstruction. But this was to be unlike any other such surgery. “I called it my ‘drive by mastectomy’,” Lucia laughs with the courage of hindsight. “They couldn’t schedule it at a hospital due to COVID, so I had it at an outpatient surgery center!”

Dropped off for surgery in the morning – alone, because no visitors are allowed to go with her – Lucia underwent the long surgery and is picked up by her husband at the end of the day. And because she isn’t in the hospital, she returns to the plastic surgeon’s office the next day to have the bandages removed.

“After cutting off my bandages, my plastic surgeon says, ‘I have to tell you the truth, Lucia: you’re my guinea pig. You’re the first outpatient double mastectomy with reconstruction I have ever done. I’ve never sent someone home the same day they’ve had that surgery.’ Thanks to COVID, that was me!” Lucia says incredulously about what the surgeon admits to her.

Thankfully, recovery went smoothly, and because there was nothing found in her sentinel node biopsy during surgery, she didn’t require radiation or chemotherapy. As for reconstruction, Lucia opted for the same size implants – she didn’t want to buy a new wardrobe – and she chose not to do nipples and areolas. “My breasts . . . they are just a body part. The only people that are going to see them are my husband and maybe people at my gym, and if they judge me . . . whatever!”

COVID and cancer?

For Lucia, they’ve been intertwined for the past year.

And she doesn’t want her breast cancer story to end here. “I am so grateful for the amazing care that I have received through all of this. I want to take this experience and give back, but I want to do it in a different way. I want to become a Firefly Guide. I can write a check, which I think is so impersonal. Firefly is local. Firefly is small. Firefly is different.”

And we think different is good! Welcome to the Sisterhood, Lucia!

*Name has been changed to protect privacy.

A tremendous shout out to the many doctors, nurses, and healthcare staff that have worked tirelessly, and at great personal risk, throughout COVID. Like Lucia, we are all incredibly grateful.

Written by Amy Tix, Firefly Staffer and 14+ year breast cancer survivor. “Sometimes, waiting for test results and surgeries is incredibly difficult . . . I cannot imagine having these postponed! How scary!”

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