Deborah Martorelli knows a few things about cancer. She’s been diagnosed with, and treated for, it three times over the last 27 years. She’s had breast cancer twice.
Her health eerily mirrors her mom’s. “I was diagnosed with breast cancer in my 30s, as was my mom,” she said. “Having seen her survive it, I felt optimistic about my own diagnosis.”
Still, doctors treated it aggressively. She had a lumpectomy, chemo, radiation and five years of Tamoxifen, a hormone therapy used to treat early breast cancer.
In her early 50s, she was diagnosed with parotid cancer – a rare cancer impacting the saliva system – just as her mom had been.
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The third time was breast cancer again – on the same side. A lumpectomy wasn’t an option. Neither was radiation; she’d already had her limit. Chemo wouldn’t have offered much benefit, so she avoided it. She had a mastectomy and will be on medication – specifically, Letrozole – for five to 10 years.
She desperately wanted to connect with someone who’d had the same surgery. Laura C. Clark, patient navigator/program coordinator at the breast clinic at Novant Health Zimmer Cancer Institute (“a fabulous resource,” she said) put her in touch with a few, but they were seven or more years out from treatment, and the memories had faded.
Martorelli understands. “Time heals,” she said. “And fortunately, it makes you forget much of the pain. The women I spoke with were lovely, but they all said some variation of, ‘Oh, it wasn’t as bad as I thought it would be.’ And if you ask me a year from now about my mastectomy – when it’s no longer fresh in my mind – I’ll probably say the same thing. You do forget.”
She had a tough experience recovering from her mastectomy, and wants to help others cope. “I think it’s beneficial to tell people the truth – and I know everyone’s situation is different. What’s painful to one person may not be to the next.”
When the Hampstead, North Carolina, resident and project manager in an insurance company couldn’t find anyone to talk to, she was inspired to create her own list of things she wished she’d known before her mastectomy.
She included things she didn’t find in her reading and didn’t learn from anyone. She had to learn them through lived experience. And as she said, “That’s never the easiest way.”
Here's what Martorelli thinks you should know as you prepare for, or are healing from, a mastectomy.
Deep breathing will help you stay calm as you’re preparing for surgery and help with pain management and recovery post-surgery. We hold our breath without even being aware of it. Someone told me: “Just breathe.” It sounds so simple, but we forget to do it. And it’s incredible from a healing perspective. While in pain and in bed, deep breathing was telling my body: It’s going to be OK.
Meet your care team, including surgeons, oncologists, physical therapists, etc. before your surgery. Ask what you’ll need in recovery so you can plan and get any shopping done in advance.
Have ice packs on hand. They will help numb post-surgery pain, which can be intense. For me, it felt like being on fire. I was sent home with a pain blocker, but it wasn’t strong enough. I needed a few more pills than those I was sent home with. The pain does abate, and every day, I got a little better.
Drink lots of water. Staying hydrated is good for your health.
Get plenty of rest. Sleep helps healing.
Pain medication can cause constipation. Consider having laxatives on hand; all opioids cause constipation. Ask your doctor for advice, and pay attention to your body and bowel movements.
Have “cold shower” towelettes on hand. You may not feel like taking a shower for days post-surgery, and these will help you feel fresh. They’re available at your local pharmacy or Amazon.
Buy a breast compression garment. You may come home with your surgical area covered by something that looks like a “tube top” with Velcro in the front. I suggest you buy another (on Amazon, search for “breast binder”) the next size up for when you no longer need the extreme compression you need right after surgery. They’re easy to get on and off while you’re healing. I eventually wore the Velcro in the back.
Make adjustments. If you opt out of reconstruction surgery – as I did – you may wonder what you need post-mastectomy. Your insurance company may cover a prosthetic and/or bras. You’ll need a prescription from your surgeon if you go this route. Also available are “knitted knockers,” which are available here at no charge or for a small donation. This may be the best way to start as you are healing. If your old bras don’t work for you anymore, consider donating them to a women’s organization.
Keep a stable step stool by your bed to assist you with getting in. Your shoulder(s) may be stressed, and you don’t realize how much you rely on your shoulders until you can’t use them. I couldn’t even prop myself up in bed.
Move your arm(s). Even as you’re lying in bed, moving your arm(s) will help you get your range of motion back.
Know when – and how much – to move. You’re supposed to move as soon as possible after surgery. Ask your doctor for specifics. I wanted to know how much to move during day one and then week one, week two and so on. I wanted to know: Do I move around the house? How much, and how often? Do I move outside? Do I need someone with me? Without proper guidance, you may push yourself too hard.
Everyone told me to move, but no one said how, how often, how long to move. I began gently moving my arm in bed during the first days after surgery. Then, my husband would hold my hand and guide me on a five-minute walk around our bedroom. A week after surgery, I decided to take a walk outside – unaccompanied. It was a big mistake, in part because of brain fog. Every step I took was jarring to my body.
Post-surgery brain fog is real, but goes away eventually – usually after a few days. (Grogginess or brain fog can last longer if you have certain health conditions or for patients who have recently felt brain fog as a result of chemo.) Prepare for it by bringing someone to your appointments who can take notes and remind you when you need to take pain meds.
Engage in physical therapy. Ideally, your therapist should be certified in lymphatic care. Your best chances of regaining full range of motion will come from following your therapist’s guidelines. Don’t skip this step!
Be patient. Your recovery could take five months or more, and gradual healing is better for your long-term health. They told me I could go back to work six to eight weeks after surgery. I originally thought I’d go back at six weeks but didn’t feel well enough. I went back at eight weeks and wished I’d waited until the 10th week.
Find and refer to trusted resources. According to the American Society of Plastic Surgeons, about 140,000 mastectomies were performed in the U.S. in 2020. You are not alone, so ask for and accept help.
This story was reviewed by Kristen Wissbaum, a Novant Health nurse practitioner, to confirm its accuracy.
