While Laurel was no stranger to breast cancer, she realized she didn’t quite know what to expect when she underwent her own mastectomy.
Laurel was diagnosed with stage 1 invasive lobular carcinoma in July 2024, on her 26th wedding anniversary. She’s not unfamiliar with breast cancer. Her family has a history of the disease spanning back 30 years, when her mother was diagnosed with breast cancer.
Family History of Breast Cancer
Laurel’s maternal aunt, several cousins and extended family have also been diagnosed with the disease over the years. Genetic testing showed that Laurel and others in her family have the CHEK-2 inherited gene mutation. “I knew that because I had the CHEK-2 mutation and the fact I’m a woman and getting older, that at some point in my life, the other shoe would drop,” Laurel said.
Bilateral Mastectomy with Breast Reconstruction
Laurel’s treatment included a bilateral mastectomy with breast reconstruction. Her Oncotype DX® tumor profiling test indicated that she would not need chemotherapy. “I would have done chemotherapy, of course, but knowing that I didn’t have to was very comforting,” she said. Because she had a bilateral mastectomy, her doctor advised she did not need radiation, either.
After Effects
Not having further non-hormonal treatment may make it seem as though someone is done with treatment post-surgery, but that’s far from the truth. “I’m on an aromatase inhibitor for the next five years, so I have side effects from that,” Laurel explained. Although she is 55, Laurel has not gone through menopause. For the next two years, she’ll receive monthly ovarian suppression to prevent her ovaries from making estrogen..
“I suddenly realized that just because I’m done with my mastectomy, I am not done being a breast cancer patient for the next two to five years,” Laurel said. “That was a shock for me. Yes, my surgery and reconstruction are done, but I still have some form of treatment going on. The journey is going to be longer than I expected.”
Laurel wasn’t sure what to expect with her own mastectomy. However, now that she’s been through it, she has suggestions for people that may help the process go more smoothly.
Reconstruction Surgery
“If you’re considering breast reconstruction, it’s important to talk with your plastic surgeon and your breast surgeon to discuss the different types of reconstruction that there are,” Laurel said. “What form does the reconstruction take – is it a DIEP flap or implants? I chose implants. I’d heard stories of women who couldn’t roll over in bed or sit up after a DIEP flap. Knowing I lead an active lifestyle, I knew I needed those muscles.”
Understanding Expanders
“I didn’t realize expanders are hard. I didn’t think about how they’d feel in my chest,” Laurel said. “When the expanders are in, it doesn’t feel like breast tissue. It doesn’t feel like what my implants felt like.” To Laurel, the expanders felt like rocks that wouldn’t move.
“I felt like I had on a bra that was three sizes too small and felt tight,” she said. “The reason it’s tight is that your skin is adapting to what is there. When something goes in, your skin stretches. It ultimately makes it easier for the implants to go in.”
Mastectomy Drains
Laurel was somewhat prepared for her mastectomy drains, since her mother had them after her mastectomy. Laurel had four drains after her surgery. “Emptying the drains was the only really icky part. You have to make sure nothing is clogging the drains, then you empty them and measure and chart the amount,” she explained. “When it starts to get less and less, you know it’s time to call the doctor’s office, and it’s time for them to come out.” Laurel and her husband developed a routine – every morning her husband would help with emptying her drains, then again before bedtime.
Sleeping & Showering with Drains
Finding a comfortable way to sleep with drains was difficult, Laurel said. “You have to sleep on your back. They suggest you sleep at an angle, with a pillow to prop you up.” She found a mastectomy T-shirt with pockets was helpful for he for keeping the drains in place at night.
“Taking a shower with drains is an operation in itself,” said Laurel. “You have to hang them on a lanyard or something, because you can’t let them droop or hang because then they tug and that’s painful. I found a belt kind of thing that had a strap and pockets that you put the drains in, so that’s how I would shower while I had the drains.”
Physical Therapy
“When I was scheduled for physical therapy, I wondered why I was there, because I could lift my arms above my head and do all the things,” she said. “They explained that I was also there to do a lymphedema early detection test using a device called the SOZO device. They said I’d be scheduled for the tests every three months for the next two years, then once every six months the next two years, to determine whether I’ve developed lymphedema or not.”
Laurel also suggested these tips:
- Meal trains and gift cards for meals are helpful.
- Button down shirts and sports bras that zip in the front make things easier.
- Do the exercises they recommend – it makes a difference. Follow the rehab plan, even though it may seem daunting.
- Put things on top of the refrigerator, so you have to stretch to get them.
- Do jigsaw puzzles – going through the motions of handling puzzle pieces and putting them together can help with range of motion.
- Get up and walk when you can.
- You won’t be able to shower or wash your hair by yourself for the first couple of weeks, so have a friend come help you or make an appointment to have your hairdresser wash and dry your hair.
- Grab a notebook and document your journey. Keep the name and telephone numbers of your care team there, your username and password for health portals, the phone numbers of hospitals and pharmacies. This comes in handy when filling out endless forms – and provides the information for someone to help you.
Read about Laurel’s decision to join Komen’s ShareForCures research registry.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their health care provider with specific questions or concerns about their treatment.
