What I Wish I Had Known Before a Mastectomy

by Brittany McNabb

A mastectomy, either single or double, is a common treatment for women with breast cancer. If you are given the option and choose to undergo a mastectomy, here is some firsthand advice on things WhatNexters wish they had known before going into a mastectomy. From tips on preparing your home to asking your doctor about specific side effects, here are some things that might be helpful as you move forward with your breast cancer procedure. 

Mastectomy Checklist

I wish I had known...

How to Prepare My Home

Home preparation may be important for mastectomy recovery. Here is a list of things that WhatNexters put in their home for recovery. 

Breast Prothesis

- Pillow to place under the arm
- Extra pillows for the bed to elevate chest, legs, arms - whatever is comfortable
- Notepad to keep track of medications and drain information
- Water bottle with a cap
- Bags to carry things around the house
- Safety pins to pin drains to clothes or lanyard
- Front fastening bras and clothing
- Comfortable pajamas and loose clothing
- Dry shampoo
- Place everything at waist level in your room, kitchen, and shower since it may hurt to lift your arms over your head
- Precooked meals and snacks

"I placed everything I used at home at waist level so I could reach it. I had a small pillow to put under my arm, a notepad to keep track of medications and fluids from the drain, a water bottle with a cap, and four pillows on the bed to keep my chest elevated. It is less painful to sleep and easier to roll out of the bed. I kept a couple of plastic bags to carry stuff back and forth from the kitchen, fabric tape and surgical pads to keep the breasts lifted and covered, I used Hanes hook front bras to keep everything in place and attached the drains, and I bought dry shampoo." - ld_105

"I slept best in a recliner. I put pillows under my knees to help with back discomfort. Make sure you have someone to help you - even showering and dressing the first few days can be hard." - Beach1040

To Talk to My Doctor About Pain Management

Some women wish they had asked their doctor about what kind of pain they might experience after their procedure. 

Home Recovery From Mastectomy

"I wish I had been given pain medication. After the first week I was not given any and was in pain for two weeks but that is just me. Ask your surgeon what is his or her policy on pain meds. I should not have assumed that I would have enough to get me through the procedure. Only after this surgery did I find out that my doctor believes Tylenol is enough and I didn't feel it was. I just feel I didn't have enough information from the get-go." - ld_105

"While my doctor meant to give me more pain meds, a mix up caused me to be without them for a week. I wished I had complained about my pain sooner." - dxdiva2

What a Mastectomy Drain Is 

It might be helpful to ask your doctor about the drains that you will have after surgery. Ask them what they do, what they look like, and how long you might have them. 

Mastectomy Drain

"When you wake up from surgery, you will have a bandage over the surgery site. You will also have one or two drainage tubes to collect fluid and keep it from building up around the surgery area. If these tubes are still in place when you go home, your nurse will teach you how to take care of them." - WebMD

"I felt like my drains were gross and annoying but my doctor said they are a good indicator of if you are doing too much too soon." - Beach1040

"My MD provided me with a wide belt to which the drains attached." - Ghound47

"I felt drains aren't a big deal, more of a disturbance. I did purchase a camisole with pockets to hold drains. Only bought one but wish I had bought more. I need a spare for wash day. I have also found that nothing is as soft and non-irritating as the cami fabric. I  almost bought the black cami but glad I didn't because I had some leaking from one drain that I wouldn't have seen if the cami wasn't white." - rosevillemom

"My team fixed my drains up to attach to a lanyard and hang around my neck. They will need to be drained periodically and your nursing team will show you how to do this before going home. The drains are removed some days later (for me was 13 days), depends on what your surgeon says but I am glad they prepared me." - banditwalker

In What Ways My Daily Activities Would be Limited 

Some women experience limited mobility and soreness after surgery. Ask your doctor about the kind of limitations you might experience as well as suggestions for physical therapy or what kind of exercises you can do at home. 

Pyhsical Therapy For Cancer Patients

"I wished I had known how hard it was to move afterwards. Never realized my chest muscles were involved in so many every day activities." - dxdiva2

"The very best thing I did was having physical therapy with a wonderful therapist After six sessions my range of motion was really good. The other best thing was continuing with yoga lessons, which was good for body and mind." - Johnny13

That Sleeping Habits Might Be Different

You may not be able to sleep on your side after surgery or may have to put pillows in certain places to elevate your body in a way that is comfortable. Many women said that they had to sleep in a recliner for a period of time because it was more comfortable than a bed.

"I had bilateral mastectomy last May. I bought a foam wedge to use in bed. I'm a side sleeper and the wedge really helped me stay on my back comfortably. I also used it after my implant exchange surgery and the nipple reconstructive surgery. The wedge wasn't too expensive and I thought was worth its weight in gold!" - Jbro

That Showering Might Be Difficult 

For some women, showering was difficult because of lifting their arms above their head to wash hair. Some used dry shampoo, some asked for help washing their hair in the sink, and some even went as far to treat themselves to a professional shampoo at a salon.

"The most useful thing for me, that no one told me to get, was a lanyard for showering. Otherwise you have nothing to clip the drains to." - peachpoppy

The Steps of the Surgery

Some women wish they had asked more specific questions about the procedure. For example, sentinel node mapping or the step-by-step process of the surgery. Don't be afraid to ask any and all questions until you feel prepared for what is going to happen.

Keep A Cancer Notebook

"I was awake for the sentinel node mapping thing. Some women are asleep for that whole process I guess it varies. Ask your team about what will happen on your surgery day. One thing that happened for me, as they map out the sentinel nodes, they use a blue dye which turned my pee blue. I wish I had known that so it didn't freak me out like it did." - leepenn

About Unexpected Side Effects

As with any procedure, ask your doctor about side effects and what to expect after the surgery.

"One thing that surprised me was phantom nipple sensations. There were times that I would have sworn to you that I still had nipples. Yet, looking at my chest, there were clearly no nipples there. The nerves do all kinds of wonky things as they heal up etc." - leepenn

That I Should Mentally Prepare Myself

Some WhatNexters said that they prepared themselves by finding out about the logistics of the procedure but did not mentally prepare themselves for losing a breast. It might help to prepare yourself by talking to others who have been through the same thing or by talking to a counselor. 

"I started by going in front of the mirror and covering my breast so I could get used to the idea of them not being there. I still have my scar I see everyday. I'm still a woman, mom, wife, daughter, aunt, and cousin. I'm alive!" - ladyhawk

"I was shocked when I took a shower afterwards. I cried and cried when I saw how awful I looked - no breasts, extra flabby skin, and bruises. Not to scare anyone, but I wish I had prepared myself more. It was rough but I feel it gets a lot easier as time goes by. I have learned it doesn't matter what our bodies look like. We are females in our SOULS. I feel this is just a phase...it really does get better." - Ydnar2xer

That I Shouldn't Rush My Recovery

Strong Woman With Breast Cancer

"My best advice to you is not to rush things. Give yourself time to heal completely. I think I tried to do too much too soon and now my right side is not healing completely. So rest, eat well, lots of protein and let everyone do for you."

"I needed to rest, rest, and more rest! Don't rush the recovery, listen to your body because it will tell you if you have done too much. Accept all the help that is offered because this is your time to heal." - BebeN

That Getting a Mastectomy is Different for Everyone

No matter what kind of advice you get, stories you hear, or firsthand insights you read - know that a mastectomy is different for everyone. The best you can do is hope for the best and be as prepared as you can.

"Have something to do to keep busy. If anybody asks "what can I do to help?", tell them. We have all learned to designate jobs to people/family. Don't be afraid to speak up. For instance I have a friend who goes to the whole foods store a lot so asked her to pick up some groceries for me. You will get a lot of advice on this subject but I always compare it to being pregnant (if you ever have been). You will hear all kinds of stories that may happen and only 1/10th of it will actually happen to you." - banditwalker

"Being aggressive in having the mastectomy will empower you to be strong and positive, and as you complete each hurdle in your treatment, you will hopefully be filled with faith and hope as you see the light at the end of the tunnel." - JennyMiller

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