by Jentry Wheaton, DNP, FNP-C, APRN, previvor and FORCE volunteer
I made the decision to have a preventive bilateral mastectomy to decrease my chances of developing breast cancer. Making the decision to remove your breasts is difficult. Add a global pandemic, travel restrictions, work, family, etc. and it seems overwhelming. I want to share what I learned along this journey to help you plan your own surgery and to alleviate some of your stress.
Tip #1: Give yourself some grace
As a previvor, I’m lucky enough to be able to plan my preventive mastectomy on my own terms. Some of you do not have this luxury and are instead planning your surgery based on your oncologist’s timeframe. Whether your mastectomy is preventive or for treatment, give yourself some grace. Be patient and allow yourself to feel everything—sadness, guilt, anger, fear, excitement, anxiety. None of these feelings are wrong; feel them, then use them to EMPOWER yourself.
Tip # 2: Do your research and find your surgeon
A breast is a significant part of a woman’s body, and for some, it is also a part of her identity and femininity. Research to find a breast surgeon who will take care of your body, and if you plan to have breast reconstruction, choose a plastic surgeon who will leave you with the results you desire. Whether you want implant reconstruction, flap reconstruction or you’re going flat, you need to trust the surgeons who perform these life-changing operations. Know the implications for each outcome and then find a surgeon who can provide you with the best possible results. Don’t be afraid to get a second (or third) opinion. Be your own advocate. You’re the one who will be living with your new body. If you have questions about this, or where to begin, reach out to me.
Tip #3: Know your insurance benefits
Prior to arranging your surgery, be aware of any deductible and out-of-pocket costs for your procedure. If you have an inherited genetic mutation that predisposes you to breast and ovarian cancer, your insurance should cover the cost of your operations. Understand whether your surgeons are in-network or out-of-network providers and what that means for your coverage. Keep in mind that if your procedures involve two or more operations, try to schedule them in the same calendar year. If you wait till the following year, you will have to meet your annual deductible again before your next procedure. If you have questions about this, contact your surgeon’s billing manager and your insurance provider.
Tip #4: Schedule your surgery and develop your recovery timeline
Although your surgery date is somewhat dictated by your surgeon’s availability and the hospital’s schedule, try to pick a date that works for your family, your job and your other responsibilities. Once your date has been selected, be sure to understand your recovery timeline so you can make appropriate arrangements. Talk with your employer’s HR department to determine how much paid time off /extended sick leave you have. If you travel for your surgery, consider who will stay with the kids while you’re away. If your surgery will be performed locally and your partner is unavailable, perhaps friends or family can keep the kids for a few days following your operation to ensure you have time to heal. Or talk with your childcare provider about picking up any extra hours while you’re recovering. Finally, consider the timing of other functions, such as upcoming birthday celebrations, holidays, and of course, COVID restrictions (more on this below). For example, my daughter’s first birthday is in August. I wanted to have my mastectomy after she was six months old but before her first birthday, because I needed her to need less of me before I went under the knife. So, my ideal window for surgery was between May to July. I worked with the scheduling team at my surgeon’s office to select the date.
Tip #5: Prep as much as you can before your surgery date
When you come home from the hospital, you will be sore and likely won’t feel like doing the laundry or scouring the showers. Nor should you, because initially you will be advised not to lift your arms above your chest. Do as much (or as little) cleaning as you need to in order to feel comfortable in your home. I get anxious when laundry piles up and the carpets haven’t been vacuumed, so I did these things before I left. That way, when I returned home, I wasn’t focused on those chores, and I could focus instead on healing. Also, it’s nice to make a couple of easily reheated casseroles (or my favorite, enchiladas) to have in the freezer when you return.
Another tip is to relocate the clothes that you plan to wear during your recovery down to the lower shelves/racks in your closet, where you can easily reach them without lifting or stretching. You may also want to move items in your kitchen and bathroom as well.
Tip #6: Prep your wardrobe
After your mastectomy, you will be sore and have limited range of motion. To make your recovery easier, have one or two pairs of button-up pajamas that don’t require you to elevate your arms. Your comfort is key, so don’t be afraid to live in them for several days after surgery. Be aware of the type of postoperative bra your surgeon will want you to wear. Ask whether you should bring your own or if one will be provided. If you are having breast reconstruction with implants that are smaller or larger than natural breast size, plan ahead and have a bra that will fit your new bust. You may also have surgical drains. They are annoying and can be painful, but they are a necessary evil—you don’t want fluid accumulating and causing problems that slow healing. Be prepared with loose-fitting tops that you can wear to accommodate your drains as well as your swollen breasts. I had two drains, but some women have more, depending on the procedure. You can go online to order adhesive pockets, special belts or a pouch to hold you drains. I just pulled the drains up and held them in my bra or safety-pinned them and let them hang from my bra underneath my armpits. Most women have Jackson Pratt drains, which function by suction rather than by gravity, so it isn’t a problem to have them at the same level or higher than your breasts.
Tip #7: Travelling during COVID
I travelled to New Orleans in June for my reconstructive procedure, and flights were pricey and infrequent, which meant longer travel days and more layovers. I made sure that I had extra travel time, just in case flights were delayed or cancelled. You will need to wear a mask during travel, so ensure that you have one that is comfortable. Many airport restaurants have not reopened, so healthy snacks and bottled water are handy to have in your carry-on bag. Finally, be clear about your surgeon’s postoperative precautions and procedures for travel. Will you need to wear compression stockings? Do you have a surgeon’s note to show to airport security that you have drains in place? Do you need to walk or do calf pumps intermittently to decrease the chance of a blood clot? This extra stuff was not hard, and it wasn’t a deterrent; it just made planning ahead much more vital. Removing the unknowns can help to manage fear and anxiety.
Tip #8: Follow your hospital discharge instructions
When you leave the hospital, your nurse will give you an abundance of information that may fly in one ear and out the other, but keep the sheet of instructions for reference. When you are sore at home and wondering whether you should sleep on your back or on your side, you can refer to your instruction sheet for details on what you should and should not expect. Remember that you just had your breast tissue removed from your chest wall and possibly had reconstruction as well. You are going to be sore and maybe in pain. Take the pain medication that is prescribed to you. If you don’t, and you are uncomfortable 100 percent of the time, you likely won’t have the energy to get up and walk around. That’s a problem, because you need to get moving. Walking decreases your chances of postoperative pneumonia and blood clots; it can also help with your emotional stability. You had a life-changing surgery. You are a hero. Don’t suffer. Take your medications, get moving and get on with your recovery.
Tip #9: Pooping is Important
Pooping is vital. While you are recovering from anesthesia, you will be mostly sedentary. You will also be bloated and swollen for a few days from IV fluids, but IT GOES AWAY. Narcotic pain medication decreases your gut motility and causes constipation. Stay on top of your bowel movements. Don’t be afraid to take stool softeners and/or laxatives. The last thing you want to add to your list of recovery concerns are hemorrhoids from straining too much.
Tip #10: Don’t be afraid to ask for help
My final tip is to know your limitations and don’t be afraid to ask for help when you’ve reached them. This is often a very hard one for women to do because we are strong, fierce and we usually don’t want to sound like we are complaining, but it’s okay to complain a little bit. Remember to give yourself some grace. It’s okay to be sad that you’ve lost something that was part of you. If you’re hurting and your pain medications aren’t working, don’t wait! Call your doctor about other options. If you’re tired when you are supposed to meet friends, reschedule. Now is the time to focus on you and your recovery. Drink plenty of water and get good rest to help your body heal. If you find that you are overcome with anxiety and sadness, reach out to your provider, because you don’t need to manage these feelings alone.
I know how scary and overwhelming a new diagnosis or an upcoming surgery can be, and I truly hope these tips aid your preparation for your upcoming mastectomy. I also know that sticking together with others is comforting, especially when they understand your particular circumstances. Remember that you can do hard things when necessary. Even in our darkest days, through community and education, we can still find the freedom to live life empowered.
Jentry Wheaton is a board-certified family nurse practitioner. She wrote her doctoral thesis on incorporating BRCA screening into primary care practices in recognition of the many people who fall through the cracks and miss out on vital screening opportunities. She works at a mental health center in Montana and volunteers as a FORCE Peer Navigator. She is also a wife, a previvor, and the mom of a 10-month old baby girl.