Top 10 Tips Pre-Mastectomy
What I wish someone had shared with me before my mastectomy.
Nobody prepared me before my mastectomy for what to expect after the surgery. The medical profession is expert at explaining the procedures and possible complications but frankly doesn’t prepare you for the daily reality of losing your breast(s). As an unexpected diagnosis unfolds, the whirlwind of ongoing information and decisions can make you feel a bit like Dorothy on a Kansas summer day with a storm on the horizon. Frankly, you don’t know what you don’t know, especially when a lot is thrown at you in a short span of time.
After my diagnosis in 2010, I found little guidance online (Note: back in 2010, there was not as much quality online content as there is today). As an avid hiker, navigating the road ahead without proper trip planning, provisions, a map, and a compass were unsettling. So I developed my own tools while hiking along the uncertain path, documenting what was happening in real-time. I underestimated the physical and emotional impact this major surgery would have on my total self — body, and mind.
My writing was a way to cope in the present and therapeutic in my recovery.
While recovering, I wrote down things I wish I would have known to pass the time and map the route I had already traveled. These hand-scribbled notes were then typed up and evolved into a “top ten” list, which I hand-delivered to my breast surgeon at a follow-up appointment. I’ve forwarded versions of this article to others via email and posted them on my breast cancer websites with no other intent than to assist the next traveler with their planning. I hope you and your caregivers find it helpful as you make plans amidst the chaos.
BRITTA’S TOP 10 TIPS — PRE-MASTECTOMY
BEFORE SURGERY:
1. Get Organized!
Gathering tools to centralize your impending paperwork and research storm is a good first step. I used a sectioned folder from the American Cancer Society with space to file pathology reports, bills, information, etc. Since most “paperwork” is now digital, setting up your computer file with subfolders is recommended. Being organized helped me feel more in control of the situation when life seemed to have been upended.
Also, part of getting organized is cleaning your house thoroughly. Really hit the bathrooms and doorknobs etc., to eliminate as many germs as you can to avoid infection or picking up a cold, flu, etc., during recovery. Coming home from the hospital, it felt comforting to walk into a clean house when I felt awful; it was one less thing for my mental gymnastics to think about during recovery.
2. Ask Questions!
It is up to you to ask questions about your diagnosis, what will happen, and know your plan BEFORE any surgery happens. Although it sounds obvious, write down your questions before your appointment and get them answered during your doctor appointments. Don’t leave until ALL your questions are answered. If you have a recording app on your phone, you might find it helpful to record your pre-op appointment with the doctor and/or nurse. Better yet, bring a friend with you to your appointment; two sets of ears are better than one when you are nervous.
3. Shop for loose-fitting clothing.
Pullovers are simply a pain when you have limited motion, so stick with a zipper or snap top. Comfort is the goal here. Wear your loose-fitting sweatsuit to the hospital, and you’ll have it to wear home. Sweat pants or stretch pants make it easier for you to use the restroom. Buy a few sets of sweat tops and bottoms to ease home recovery, and you also won’t worry about stains on your favorite clothing. Slip-on shoes are also helpful. Pack extra underwear, but you won’t need to wear or pack a bra — you’ll go home wrapped in an ace bandage or a surgical bra provided by the hospital. Also, invest in some easy-to-manage pajamas that have both tops and bottoms.
4. Order your medicines with non-child-proof caps.
Your arm strength on each side of your mastectomy is limited for several weeks, making it difficult to open pill bottles. You WILL want to open your meds easily, so plan for this detail. Alternatively, you can ask someone to put your medicine in an easy-to-open pillbox.
5. Line up rides and people to help you out for the first couple of weeks. You won’t be able to drive while you are on pain meds and/or have a limited range of motion. People want to help you, so let them drive you to appointments or take you out for a short coffee visit after the first week if you are up to it. Contact helpers before your surgery, and it will also give you peace of mind now.
6. Stock up on easy to prepare and healthy foods
Healthy food is fuel and should be part of your recovery plan. Take the time to prepare and freeze items and take up people’s offers to bring your food — it really helps not to worry about preparing food. Freeze individual portions of meals in a container that can go from the freezer to the microwave for easy prep. Perhaps you have a friend willing to set up a service like Meal Train or explore non-profits like Fox Valley Food for Health that have delivery angel volunteers drop off healthy food weekly at your home at no cost to you. Stick to healthy foods whenever possible to fuel your recovery and keep extra weight gain at bay.
7. Stay connected.
Technology can be your friend during recovery and helps you stay connected. Borrow a laptop or tablet if you don’t have one and maybe splurge with a new cable or streaming service for a month. Stay in touch with friends and family and gain strength through their support. Email your status every few days, and if friends ask what you need, don’t be afraid to ask for a visit, a ride, food, or anything else — they want to help, so let them! Though it may seem a bit impersonal at first sending out an email, you can do that on your own time, then check replies when you feel up to it.
One warning from personal experience: in-person and phone visits can wear you out, so limit these to less than 15 minutes until you regain your strength. If you are the caregiver, encourage limits on visitors.
8. Practice sleeping on your back.
If you are not a back sleeper, I have some bad news for you. You will need to sleep on your back after surgery, so start weeks before you have the surgery to figure this out. Seriously, don’t wait until you are home from the hospital and in pain. An added tip is to place a pillow under your elbow away from your side to reduce pulling pain.
9. Select your support team.
Determine who needs to be on your team — which doctors, religious or emotional support, and services like American Cancer Society or Living Well Cancer Resource Center (a western Chicago suburbs non-profit). If you are not comfortable sharing your diagnosis with others, stick to family and a couple of close friends for support. Make sure all team members are informed and ready to support you. People can’t help you if you don’t let them know what is going on in your life.
If it may be helpful to you, meet with a spiritual advisor. Let your church know what you are facing, and get added to your church’s prayer list. After my surgery, a ministry volunteer from our church dropped off a prayer shawl that was a great comfort during my recovery. I also received a blessing before surgery and asked for the “Anointing of the Sick” sacrament to help me prepare mentally.
If you don’t live nearby to a friend or family member, you can provide support by sending cards (funny ones are the best) with personal news and local restaurant gift cards. Getting mail every day was something I looked forward to, and cards were great sources of support that I re-read multiple times when I needed a boost.
10. Meet with plastic surgeons (PS).
Plan to meet with one or more plastic surgeons to get advice and explore your options. Ask for references (from your friends and your primary care doc) and make sure you understand if they are in your insurance network or not. You should gain comfort with their skills by looking at photographs of their work (before and after) or even talking with past patients. In my case, one of the PS I met with had a tired-looking physical scrapbook, and the second showed me his work on an iPad. Their skills matched their marketing tools, and I chose the latter.
Visiting a PS before your mastectomy provides an opportunity for them to take a “before” photograph, which helps them with their plan to reconstruct your breast as close to your natural look as possible. Remember, this is YOUR body, and you have to look in the mirror at yourself every day for the rest of your life. If you decide to undergo reconstruction, feel good about the PS you have selected.
You can also opt to do reconstruction simultaneously to the mastectomy, which avoids another surgery but may extend your stay in the hospital. Deciding reconstruction is not for you is totally fine too. Going flat is a choice, so if it is yours, make your voice heard. Get all the information you need to make the decision that is best for YOU.
Whatever you decide will be the right path for you.
