Double Mastectomy: How to Prepare and Recover

Double Mastectomy: How to Prepare and Recover

Double Mastectomy: How to Prepare and Recover Quickly

double mastectomy

Medicare Life Health’s author Crystal gives you first-hand information on having a double mastectomy including preparation and recovery information, helpful lists and tips.

Approximately 1 in 8 women will get breast cancer in her lifetime.  In addition, many of these women will have a mastectomy or bilateral, aka double mastectomy, as part of treatment.  The prospect of this surgery may seem overwhelming but preparing in advance can make the experience much easier.

How to Prepare for a Double Mastectomy

After losing my grandma and then my mom to an aggressive form of breast cancer, my doctor and I decided that we needed to take significant action to reduce my risk.  When I was done having children, I opted for a preventative double mastectomy to reduce my risk.

The process was daunting – I was mostly focused on the statistics, the right screenings, and the surgery itself.  Moreover, a few weeks before surgery, I realized that I had no idea how to get through the actual process.  There was lots of information readily available on the surgery itself.  However, I had no idea how to get through the weeks that followed. For instance, I wondered, what happens after I got home from the hospital?

What I learned was, I needed to prepare not just a list of things to help with surgery, but more importantly, a list of people. You need a support team.

Preparing Your Support Team

how to prepare for a double mastectomyhow to prepare for a double mastectomy

First of all, a single or a double mastectomy is no small procedure.  This is not something that you should do on your own. In fact, you will want the support of friends, family, and the community during this time to assist in your recovery. 

Those who care about you will want to help, so try to determine in advance who you have on your support team, and what needs you anticipate.  I suggest making an actual list of people and how they can help.

To start, here are some places to look for support:

  • Cancer support groups – First, numerous nonprofits exist that help women battling breast cancer.  Your doctor, or an online search, can connect you with one.  These groups provide resources such as support meetings, recovery advice, and pre-surgery gift bags.
  • Online support groups – Second, look for informal Facebook groups. You can find online communities of women there going through cancer treatment.  This can be a great source of support and advice. 

    When I was preparing for my procedures, I appreciated the online dialogue with other women who understood what I was going through. In addition, they could offer advice on various challenges I encountered throughout the process.
  • Friends and family – Finally, put some thought into who wants to help – as well as who is actually helpful. In addition, consider what they are good at. 

    You may have a well-meaning sister who causes you a lot of stress.  She is probably not the person to have with you at the hospital the day of surgery. However, she could be great at stocking your fridge with pre-made meals. 

    Or you may have a brother who would love to help, but you feel awkward having him around in the first few days after such a personal surgery.  Perhaps he could be enlisted to mow the lawn or take you grocery shopping a week after your surgery.

What Your Team Can Help With

Knowing what your team can help with is half the battle! Since you have not been through this before, you probably don’t know exactly what support will be the most helpful. However, I have, and this is what I wish someone would have told me:

  • Transportation Help – First, you will need someone to drive you to the hospital and be there during your surgery.  You will also need someone to drive you home after you are released.
  • Personal Needs Help – Second, you will likely need some assistance with very personal needs in the early days after a double mastectomy. 
    • Your surgery drains will need to be “stripped” several times a day.  While it is possible to do this yourself (I did), it may be challenging, especially if you have had chemotherapy.  If you have a support person to help with this, he or she should come to the hospital to have a nurse show the proper way to strip drains. 
    • Your doctor will tell you how often to change your dressings.  While also possible to do this yourself, it is helpful to have assistance.
    • If you have shower restrictions after surgery, you may wish to wash your hair in the sink.  This is another task that is helpful to have assistance with.
  • Basic Needs Help – In addition, you need to eat, laundry has to be done, trash needs to be taken out, you need to go to follow up doctor’s appointments, etc. Line someone up to do these things for you.
  • Emotional Support Help – Finally, a mastectomy is a very personal and emotional process.  Having a friend to talk with, or to get you out of the house and distract you, is a blessing.  Knowing in advance who can come visit you, accompany you for a walk, take you out for lunch, etc. gives you confidence that you are not alone in this process.

What to Do in Advance

Here is your “To-Do” list of what needs to get done in advance of your surgery.

To Do:

Make your Support List

  • To begin, make a list of all that you think you will need help with for the first 2 – 3 weeks after your surgery.  (Remember that you will have driving restrictions, so don’t forget to include transportation to follow up appointments.) 
  • Then think about what you can do in advance.  Then think about your sources of support who could help with the things that can’t be done in advance.

Plan for Food

  • You can make freezer meals in advance.  A simple online search will show many tasty meals that can be prepared in advance and stored in your freezer, then cooked/heated up when you are ready to eat them.
  • Ask a friend to coordinate a meal delivery service for you if you have friends and family who would like to help in this way.  Meal Train is a free online service that allows you to create an event and email a link to friends.  They can sign up to provide meals on a specific day.  If you are part of a faith community, they may have a group of volunteers who provide meals to those recovering from surgery or illness. 
  • Purchase pre-made meals from a grocery store.

Plan for Personal Assistance

  • Plan to need some assistance on a regular basis for the first few weeks after surgery.  Your needs will be more personal in the first few days, so that is a good time for your closest friends and family to visit.  Keep a calendar with the schedule of who is coming when.  Be sure to have transportation assistance for follow up doctor’s appointments and any errands that you must run.
  • For a fee, Meal Train offers online scheduling for people to come help you.
  • Also, if you know that you won’t want to sit at home alone for weeks on end, proactively plan fun outings with friends or family.  A quick lunch or coffee date could do wonders for your emotional well-being.

Ask for Help

  • When you know your specific needs and who you are comfortable having help, you will have a response ready when people say “Let me know if there is anything I can do to help”. 
  • And don’t forget, restaurant gift cards are a great option for well meaning friends or family who aren’t nearby or who are extremely busy.
  • Additionally, be vulnerable – most people like being needed, don’t be afraid to ask for help.

Get Your House in Order

  • In the days before your surgery, have your cupboards stocked, laundry done, lawn mowed, and any cleaning or tidying complete.  Don’t assume that you will feel up to any of those tasks immediately after surgery.  Enlist the help of a friend if needed.
  • Purchase all items that you will need during your recovery period (see Preparing for a Double Mastectomy – What to Buy for tips).

Pack Your Double Mastectomy Hospital Bag

  • The hospital will provide most of what you need while you are there, but be sure to bring any personal hygiene items that you prefer.
  • Bring a comfy set of clothing to wear home, and a pillow to protect your chest area from the seat-belt on the way home. 
  • Additionally, bring good book or something else to help pass the time. 
  • Oh, and don’t forget your cell phone charger!
  • Then, take a deep breath – even with the best made plans and lots of preparation, something will go wrong or get missed.  It will be ok.  This is a difficult process and there will be hiccups, but you will get through it!

What you Need to Recover from a Double Mastectomy

In the months leading up to the surgery, I was focused on doctors’ appointments, screenings, and applying for FMLA.  But then a few weeks before surgery, I realized that I had no idea how to prepare for recovery. 

Even though I took care of my mom after her surgery, and I had several aunts who had also been through the process, no one had any solid advice on how to make recovery easier.  There was lots of information readily available on the surgery itself.  But I had no idea what to do once I got home from the hospital.

When you make the decision to have a mastectomy, you will want to find out in advance what your doctor recommends for recovery.  You will likely have a brief stay in the hospital, followed by restrictions on lifting, driving, showering/bathing, sleeping positions, how high you can reach, etc. 

Be sure to ask your surgeon about these topics prior to surgery.  If you know this information ahead of time, you can understand what your needs will be and have time to prepare to minimize the discomfort and inconvenience afterward. 

Double Mastectomy Must Have’s

First, let’s start with the basics. Here is your shopping or gathering list of the most important things you need to make your recovery as smooth as possible.

Comfortable Clothing

  • Post surgery you will likely be sent home with a compression bra and surgical drains.  Your arm mobility will somewhat limited, so your normal clothing may not work well during this time.  I recommend loose button up or zip up shirts. 
  • If your surgery is during the cooler months, then zip up fleece jackets work well.  Be sure they are loose so that your drain bags will fit underneath. 
  • The summer months present a different challenge as you may be hot from the extra layers and unable to shower.  Try to find loose, lightweight clothing to get you through the first few weeks. 
  • You needn’t spend a fortune on clothes that aren’t your normal style – your local thrift store may have great options.  It’s fine to wear the same outfit multiple times in those first few weeks. 
  • Also, keep in mind that you will likely have compression stockings to wear initially to reduce your risk of blood clots.  So plan your pants and footwear accordingly.  A pair of nonslip socks for wearing around the house may be a good investment as well.

Drain holders

  • You will have post surgery drains to help with the healing process.  The drains are tubes fastened inside of you with bulbs on the end that will fill with fluid. 
  • You’ll want to keep these protected so that they aren’t caught on anything, and you may feel more comfortable keeping them completely out of sight. 
  • Your doctor may send you home with safety pins to clip them to your clothes, or you may receive complimentary drain holders from a breast cancer group – however those are often plastic and bulky. 
  • Drain holders such as these are soft and comfortable to wear under your clothes.

Reclining Arm Chair or Multiple Pillows

  • Your doctor may recommend that you sleep in an inclined position for a period after your surgery. 
  • If you do not have a reclining chair, consider borrowing one or renting one. 
  • If that is not an option, then plan to have multiple pillows in bed to support you. 
  • Wherever you sleep, have a nightstand next to you that you can store a water bottle and your pain pills on.  When you wake up in pain, you will be glad to have your medicine within an arm’s reach.

Hygiene Products

Your doctor may have restrictions on showering, possibly up to a couple weeks.  While not ideal, you can purchase products to help you get through this time period.

  • Dry shampoo – After my double mastectomy, I washed my hair in the sink every 2 – 3 days.  I sprayed dry shampoo in my hair in the evenings so that my hair would not get greasy in between washes.  This brand worked well for me.
  • Facial wipes – While you will likely be able to wash your face, these are an extremely convenient way to freshen up when you aren’t feeling well.
  • Baby wipes – Use these to clean/freshen up your body when you aren’t able to shower.
  • Large gauze pads – Your doctor will tell you how often to change your dressings, but you will need to buy the gauze pads yourself.  Mastectomy incisions are large and typical gauze pads aren’t big enough.  Many pharmacies do not carry the larger sizes that the hospitals use, but Walmart offers these surgical dressings at a reasonable price. 
  • Small gauze pads – You will need smaller gauze pads for covering the sites where the surgery drains are removed.
  • If you have sensitive skin, be sure to buy tape for sensitive skin.  My personal favorite is this brand, which I found at Target. 

Other Double Mastectomy Helpful Items

In addition, to the “must-have” items above. Here are some of the other very helpful things to consider having on-hand.

  • Slip on walking shoes – Once your doctor approves walking, you’ll want to follow his or her recommendations.  Walking may help with reducing soreness, building strength, and preventing blood clots.  It’s also a good chance to get out of the house.  Slip on shoes are helpful when your mobility is limited after surgery.
  • Large water bottle – Hydration is important in healing.  Keep it full and drink often.  Your hospital may send you home with one as well.
  • Over the counter pain medication – As recommended by your doctor.
  • Ice packs – Your doctor may allow you to use an ice pack to help with pain on the incision site.
  • Heating pad – I found that I had a lot of back soreness due to the physical discomfort, reduced mobility, and reclined sleeping position.  The heating pad was helpful in managing this back soreness.
  • Activities to pass the time – In the early days after a mastectomy, physical activity will be limited and it’s easy to get bored.  Plan to have activities to pass the time, such as books, puzzles, crossword puzzles, adult coloring books, or a streaming service to watch your favorite movies.

Helpful Services

Finally, recovery is much faster if you can truly rest. As much as you can (or can afford), try to enlist professionals or volunteer to do your labor for at least a few weeks.

Cleaning Services

Cleaning your home after a single or double mastectomy will be difficult due to limited mobility, lift restrictions, and fatigue. Consequently, this is a good time to invest in a cleaning service if you can afford it. 

The nonprofit Cleaning for a Reason offers free cleaning services to women with cancer.  You can find out more at here to see if it is offered in your area.

Grocery Delivery Service

Lifting and driving restrictions may make it difficult to shop for groceries the first few weeks after your mastectomy.  Many grocery stores offer delivery service for just a few dollars, or even free if you purchase a certain amount. 

In addition, consider buying pre-made meals during this time.

Mowing Service

Finally, if you do not have someone else to mow your yard and you are having your surgery during the summer months, look for a lawn care service that can help you in the interim. 

Conclusions

Choosing to have a single or a double mastectomy is a big decision. However, the recovery period does not need to be overwhelming.  By preparing in advance, you can make the time go smoothly and more comfortably. 

Furthermore, this is a major life event, and it is important that you set yourself up for a successful recovery.  Remember that recovery is just a season. Eventually you will get back to the way you normally live. 

In the meantime, take care of yourself, follow your doctor’s orders, and follow these tips to make the process easier.

Your Story

What tips, comments or suggestions do you have for others considering a double mastectomy? Would would love to hear your advice, stories or comments.

Also by Crystal Bayliss:

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