Advice on Taking Care of a Patient After a Mastectomy or Breast Reconstruction

I had a very nice woman email me because she is going to be taking care of a friend after her double mastectomy and asked for tips and tricks on how to take care of a patient after a mastectomy. I figured that I would also share my advice on a blog post since I know some website visitors are caretakers of breast cancer patients and breast cancer patients themselves preparing for surgery – and my life is pretty boring cancerwise lately (feeling great). So… here goes (this is going to be really long), based on my/our experiences only, please understand. Everyone is different.

When I asked Mike what advice he would give his answer was: “Yogurt, pudding, purple Gatorade, TV in the bedroom (otherwise your wife won’t lay still), and leave them alone (pop your head in once and awhile, get grunted at, go away).” Whew, I sound like a good time. Also, he knows I posted his exact statement and he fully agrees with it, twice.

My surgery before chemo – I had the option to start chemo or have surgery. I chose surgery first. I should have healed a lot better, your body does well at this time, but stress is not good for your body’s healing process.
Surgery shortly after chemo – I opted to go ahead and reconstruct the healthy side after my complications. This was much harder, MUCH. Comparing my lat flat reconstruction on each side, my body had a very hard time recovering shortly after chemo (three weeks). My body was even madder at me when I threw radiation on top of surgical recovery. I started working one week after my mastectomy from home (my choice and a bad idea for me) and I was back in the office after two weeks after my mastectomy (bad idea for me again). I did wait over three weeks after my first lat flap to go back. I found out about http://www.cancerandcareers.org long after treatment, I haven’t spent much time on that site, but it may be helpful for other woman like me. I suggest three weeks minimum healing time after any major surgery, otherwise you chance a million more surgeries and missing more work than you would have, had you taken care of yourself in the first place…

Items to buy:

  • Surgical drains. Note the pudgy belly, everyone was feeding Mandi good.

    Velcro, big safety pins & cotton yarn – Every woman manages her surgical drains differently. I bought a top that was able to hold three drains, but guess what, I had five surgical drains after my mastectomy and six after one of my reconstructive surgeries. The drains are worse than the surgeries. I am not kidding. Read about Gus (yes, we named one). I would usually use a safety pin and attach them to a velcro “belt” when I had several of them. For showers I would string them through cotton yarn while I showered and switch back to the safety pins and velcro. Once I got down to a drain or two I would just use yarn. The safety pin/velcro method helps with lots of drains because they can’t move around, once you are down to just a couple of drains it is more comfortable if you can adjust them, so I would just use yarn. I think I let Mike help me with them for about two days, they were gross and I preferred to manage measuring the output by myself.

  • Baggy button up shirts and cover up sweaters – I spent more time finding clothes to hide my surgical drains than anything. I founds that I needed baggy shirts that didn’t rub on my chest, with extra fabric on the chest and layers of cover ups really helped hide what was going on.
  • Soft foods – Yogurt, pudding, rice pudding, bananas, anything easy on the tummy. I was a fan of making smoothies – blending frozen berries, spinach, banana, ice cream (or yogurt) and milk to appease the tummy. When you have a pain killer regimen that is hard on your stomach, you need to take them with food, but half the time you don’t have the appetite. I found bananas to be easy to get in my tummy when I needed to take my medications. Stocking up on “easy food” was always first step after surgery. You may want to avoid too many foods with soy, it is a controversial food product for women with breast cancer. It is important to eat, so let them eat whatever they can get down for the first few days.
  • Knee pillow – You can’t lay on your side for a long time after these surgeries. It doesn’t matter which side it was on, it hurts. The best trick I learned for feeling like I was sleeping on my side was to place a pillow under my knees so that I could turn them. I still sleep with a body pillow now to sleep on my side after my reconstruction.
  • Recliner? – I bought a recliner before surgery having read that a lot of women prefer sleeping in one. After shopping for them I lost a few tears because the nice ones were spendy. I managed to find a used and very nice recliner by watching the local ads. We named it the “Mandi chair” and I just went to go sit in right now because it is so comfy. The dogs lived on this chair with me for many months (so make sure there is cat/dog/child room to squeeze in – they were my best buds). I was never able to sleep in the recliner, but it was really helpful for me when I was just resting and much more comfortable than the couch. On the nights I couldn’t sleep propped up in bed I would sleep on a futon recliner (it looked a bit like this one, I found that I had those sleeping issues a bit more on chemo than after surgery, but sleepless nights come with both). I would sleep on the futon with my back elevated and about five pillows surrounding me (I found that my other recliner required me to “push” to keep it reclined vs. the sedentary futon that kept my legs straight and put my back on an incline).
  • Shower chair – I didn’t use it often, but within a day or two after surgery I was allowed to take a shower (surgical glue is some crazy stuff). I would get dizzy after the shower, so either stay close by, or have a shower chair the first days after surgery.

What not to let her do:

  • I used www.lotsahelpinghands.com after a couple of surgeries to organize meals because Mike didn’t usually have enough energy to work all day, clean and make a healthy meal (when I was stuck home a speck of dust that I was unable to clean up looked like a boulder). The website allowed me to put everything on a calendar and I could look it up when I needed to, chemo does not do great things for your memory, having it on a website meant I didn’t have to try to remember who was coming when. One of the best things anyone every did for us was bringing us food, I still look back and appreciate it so much, but the hardest part was organizing it before I used the site. The website also works for setting up other tasks you need to make available for help (rides to appointments) and lets people sign up for what they can do to help when it is best for them.
  • Vacuum – This motion is terrible after these kinds of surgeries. Loading and unloading the dishes from the dishwasher is just about as bad. Get help or organize help for housework. www.cleaningforareason.com is an option for people in treatment. Mike opted to take over the heavy labor instead. We discovered he is about ten times better at vacuuming than I am, but don’t tell anyone.
  • Cooking – Chopping, stirring and a lot of motions made in cooking take many weeks to participate in again. I genuinely think I messed up a surgery chopping vegetables. Just don’t… have easy to make food or have people bring meals. When I was able to cook I would frequently make extra and freeze the other part for later.
  • Childcare – I don’t have experience here, but from my own experience, the best thing I could do is sleep as much as possible the first week. You may want to arrange people to help based using the Lotsa Helping Hands website, but please remind everyone that the point for this is to give the cancer patient quiet time to rest and heal. It takes a lot of energy to update everyone on everything as they come to visit, it is awesome to see everyone when they come (so as the patient you definitely want to chat, but have limited energy on how long), so keep it short if you can.

What to expect: I haven’t spoken to a woman that thinks that a mastectomy is the best thing that has ever happened to her (surprising eh?). It makes you depressed (reconstruction can do the same thing, it isn’t what it was, I am happy with my surgery, but you aren’t exactly princess charming after these surgeries). You can be shocked, sad, angry, screaming inside… do all of it. You make major decisions about your body within a short period of time. Mourn. We are raised with part of our sexual appeal/identity being tied to our breasts. My surgery was a skin and nipple sparing mastectomy surgery, I woke up two cup sizes smaller than I started because I had immediate reconstruction, which made it easier, but not “easy.” For women interested in this kind of surgery, my surgeon and plastic surgeon have a site about it, PLEASE understand this website is very graphic, you were warned. When I did lose the breast expander on my healthy side due to surgical/chemo healing complications I had to relive the experience again in a different way. Just understand that this is a scary time and the patient may not always be on their best behavior.

Mike also suggested not to tell the patient that they will be “ok.” I hated being told I would be ok, I wasn’t ok, and I was weird about being told that. I needed to decide that for myself (prayers, well/healthy/healing wishes, support, caring thoughts, luck, all of that is greatly appreciated, I just wasn’t “ok,” and didn’t like being told I was going to be that way). This could just be me! I am still wary about being called a survivor, I just tell people I have had breast cancer treatment. It is all about personal semantics.

What I honestly don’t know: How women have surgery and care for babies, young children, etc. I have major respect for women with children that go through breast cancer treatment. I wish I could give advice here, but I can’t claim experience in an unknown.

Update 3/5/15 Brobe:
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I don’t do have many products on my blog that I haven’t personally used, and don’t do a ton of promoting, but when I receive a nice email like the one I received from Allison, the creator of the Brobe I felt like I should at least look at her hard work and creation – the Brobe. She asked that I check it out and even offered compensation if I wanted to advertise it, instead, I asked for a free Brobe to give away to someone who was having surgery (in the hopes that it would help someone out that was having surgery or planning reconstruction – plus maybe I could get a note on whether or not it helped them out). Surgical drains were a royal pain in my butt, and getting comfortable after surgery was difficult. The Brobe looks like a comfortable way to help manage the darn things (I had as many as 6 after one surgery).

Brobe contest is closed (I was not compensated for this post)

Please add your suggestions and recommendations in the comments below:.

Author: Mandi

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  • Randinac

    Wow. Sobering stuff there Mandi but extremely helpful.  Now how can I get my recliner in the trunk and get it over there?! lol  I really appreciate the advice thank you sooooooo much.  Ill write you later after we get the new surgery date confirmed.  This has been a blessing thanks again!

    • I hope it helps some! I may add to it if I think of something later. All the little things help to make you comfortable, right after surgery I guess I asked for my dogs, so my husband brought one of them to come see me in the hospital.

      Maybe you can find a helpful soul willing to move the recliner! It isn’t a must have, lots of pillows to prop yourself in a comfortable position does help though.

  • Pinkunderbelly

    Great advice! I’d forgotten a lot of the practicalities of my post-surgery world. I like what you said about not wanting to hear “you’ll be ok,” and you’re spot on with the vacuuming, cooking/chopping/stirring, and laundry. I would also advise mint gum to combat nausea from all the pain meds. The best thing I remember was when my friends would suggest a specific way to help (come walk the dog, vacuum, offer me a ride to a post-surgical dr appt) Instead of saying, let me know if you need anything. I had a hard time asking for help, so I needed someone to say, “I’ll take care of this for you.”

    •  Good points! All of them. Mint gum is good to know.

      Specific help is so true, it was hard for me to ask for/specify what would be helpful other than food, food was always helpful. Which is why a friend organizing the help should help too I think! 🙂

  • I’m gonna throw in my two cents. I think the big thing for
    me was the pillow (like you said), having shirts I could step into (because I
    couldn’t pull anything over my head) like loose tank-tops, dresses, etc, and
    exercise encouragement. People had me doing my stretched two days after the
    surgery onward. That was hard – like at first I barely moved the arm, just a
    tiny bit, but with cheering and encouragement (and reminders galore) it become
    much, much easier. Get yourself a stick or cardboard tube, and after a couple
    weeks start using it to stretch the arms further. That really helps.

    Good luck to the lady taking care, and to her friend who
    will have the surgery.
     

    • Yes! Easy to get on shirts are very important. Half of my wardrobe seems to be made up of stretchy shirts I could easily get on and off.

      Good reminder on the exercising. I would usually carefully walk my fingers up and down the shower wall. I never lost any range of motion by carefully stretching.

  • kathy

    thanks for this article. I’m having a masectomy in a few days and this will help make the “afterward” less scary. I appreciate the advice.

    • Best of luck at your surgery!

  • Suzette

    Thank you for taking the time to post this. I am sure it wasn’t easy. My sister is going to have a double and I will be stAying with her and didn’t know what I could do to help.
    Sincerely,
    Suzette

    • Kristine

      I did have the double with immediate recon. Thank for sharing your experience with me. It was so helpful knowing what to expect.
      And thank you Suzette for taking the time to share this. Your a great loving sister who took such good care of me, I love you.
      Kristine

  • Jessica

    Thank you for the info! Pinterest has been a Godsend as I face my mastectomy.

  • Erin

    I am recovering from a total hysterectomy right now and will be having double mastectomy soon. Thank you fir all the tips for the recovery process. I just wanted to let you know that you have a new fan.

    • Thanks Erin!

    • Cindy

      Thank you for sharing it has been nearly 4 weeks since my mastectomy, you are describing so many of the feelings and inconveniences I am, sometimes i feel like i am not as strong as i should be. The most difficult part for me is after working and caring for everyone else for 40 years now I dont know how to relax or put myself first.
      Helps to know others feel the same.

  • Tonya Jones

    Thank you for sharing this…I am currently taking Chemo for Stage IV IBC Breast Cancer and this blog has given me more information and uplifted me more than any other I have visited…I am so grateful to have this information for the recovery of my double mastectomy coming up…

  • Tonya Jones

    Went to Goodwill purchased some men’s button up shirts,since I wanted an over sized shirt and to save money because I won’t be wearing them after I heal…I washed and really put the downy to them to make them soft…gathering as much as I can prior to surgery…thank you for all the tips…love this blog

    • Button up shirts are definitely great!

  • Terry

    Be sure to stay hydrated with plenty of water to help push out the anastheisia. Pain meds can cause constipation. Opt for a small glass of prune juice morning and evening to keep regular.

    • Great advice Terry!

      • carole smith

        That is a good one, Terry. One that I used, and will again next month after reconstruction.

  • Bryan

    I notice all comments are from women and most useful info it is.
    Any recommendations for husbands to help them cope with the aftermath of a wife’s mastectomy?

    • Bryan, I am happy to ask my husband for some pointers and send them your way. His main advice was to let me rest, let them rest if they want to rest (I like to sleep through pain as much as I can), poke his your head in and make sure they are still around.

      What was helpful for me from my husband was that he made me know and feel that I was beautiful to him no matter what. This was huge to me. My self esteem hurt a lot from having to make a decision like this so quickly. I was scared. He made me feel like I was supported in any way I needed (he also vacuums better than me, and still vacuums since my mastectomy). She needs to know you love her, that she is beautiful, and if you can help her arrange household stuff as much as you can for the nest few weeks it is awesome helpful. We arranged to have friends and family cook for the few weeks following surgery which helped a lot.

      Love her. Hug her (gently). Let her cry. Be there for her.

  • carole smith

    Mandi, I have been through mastectomy and still have reconstruction coming up next month. A friend from church told me a friend of hers just had a double mastectomy, and asked me what were the things that helped me the most during recovery. I think I still have chemo brain (actually I KNOW I do), and all I could think of were cards and cupcakes. I will go and ask my husband what he thinks the things were that I was most grateful for, but I was wondering if you had any more ideas. She said her friend is girly and self conscious about her appearance. She wants to do something for her. I had people offer to clean my bathroom, but that was too personal for me. My husband cleaned it, though. I did have meals brought by lovely people. I wish I had thought to allow someone to water my garden which died in the summer heat. What about walking the dog, if it isn’t a huge Marmaduke? Help. I am unable to think.

    • Carole, I am sorry, for some reason I wasn’t getting alerts from comments on this page. You covered a lot of great items in your comment. Everyone is different. Cleaning my bathroom would have been helpful, but I am the same, I had a harder time letting people scrub my toilet. Food was always easiest and I would use http://www.lotsahelpinghands.com to organize people – still do use it. I will post things I need help with, rides, food etc. and my friends and family can sign up for them. Cards, cozy things – blankets, socks etc. are always welcome. Watering garden/mowing lawn/yard care was always helpful for my husband since he was too busy trying to pick up the stuff I couldn’t do.

      • carole smith

        I looked at that website, and think it’s a great idea. I would get so many phone calls, usually while I was too tired or sick to talk to anyone. I was very grateful for those who texted, instead, because I at least knew what they were calling about, and I could send a quick text, because I find it hard to get off the phone, not wanting to feel rude. Having a calendar and listing what I needed, and allowing all those who wanted to help to sign up, would have been nice. I had my husband or son take me to chemo, doctors appointments, radiation, etc. I sometimes felt it was too much for them. I am mostly done with it all, now, except for more reconstruction surgery in a couple of months, and of course, the dreaded six month scans. So, things have quieted down, thankfully.

        About the cozy things; that would be a really nice thing to do. I love that idea. I am thinking of doing something I like to do in general, that is gift baskets for all occasions, but for someone going through treatment, a special basket with cozy things would be nice. When I first went to the breast health center, they gave me a nice gift bag with all sorts of goodies in it. These were done by ladies who had been there, too.
        A lady from church made these little “comfort pillows”, and they have really taken off. She made me two, one a little heart shaped pillow, and one was a pillow with a strap to put over your shoulder, to go between your underarm and your breast area. I used that one after surgery for a long time, since that area was painful and sensitive.

  • Lisa Amanda Murray

    Thank you, I have been scared and frustrated after my partial mastectomy; they have to pull the tumor apart before I know if it is malignant or benign… but I wasn’t expecting to feel as sick and weak, & I did not realize how much I needed to be on painkillers which make me feel sick and sleepy and they are pretty heavy things that I normally wouldn’t be okay with taking, but without them I’m in a pretty considerable amount of pain and I have a hard time not moving around doing normal stuff like just even getting myself ice packs from the freezer… But this made me feel better knowing that it should have been explained to me or at least now I know that this is normal. This has been very scary and I didn’t realize recovery was to be in bed for at least the next week…

    • Gena Zerbin

      Agreed. I didn’t know that it would take s9 long to recover either. I hate the drains. Can’t get comfortable. Pain pills just make me feel drugged and weird.

  • Rosemary

    I read this blog before my double mastectomy and it scared me. My experience was nothing like what was described. I had Stage 3b cancer. I had 6 rounds of chemo prior to surgery, and was severely anemic. I have diabetes and severe orthopedic issues. So I expected to have an experience like what was described. What actually happened was totally different.
    When I got to my room after the surgery, I got up from the stretcher and went for a walk. I sat up for dinner. I took minimal pain meds, and was able to wash myself the next morning without assistance. I had to have a second surgical procedure for bleeding but was able to go home the following day. I stayed up, helped set up dinner, and went to bed- propped up but in my own bed. Getting up the next morning was a bit painful but once up I was fine. No dizziness in shower; I was able to stay up the entire day and again helped with dinner. Basically, I was fine. A bit sore but fine. I had to be driven the first week to the plastic surgeon to get the drains removed but by day 10 I was driving- up to an hour to the office. No problems. I actually felt well enough to go to work but actually stayed out 7 weeks. At 7 weeks I had a thyroidectomy (fortunately the mass that was suspicious turned out to be benign). Went back to work at 10 weeks. Started radiation same time I went back to work. That was last week. Other than a bit tired (probably due to the thyroid) I am fine. I may be the exception but just wanted to say your post op time may be much less than was posted here.

    • As with all things cancer related, everyone is certainly different! I was up working a week after my mastectomy from home and working in the office 2 weeks after. I was recommending people not do the same thing because your body needs to rest (one week of recovery time was certainly not enough from my personal experience). I am not a doctor though and everyone should do what is best for them. I certainly didn’t mean to freak you out, I apologize.

  • Sandy Eeds

    Mandi, I am having a double mastectomy with concurrent reconstruction in one week. Reading your blog has been a great help! In fact, we are on our way to go look at a power recliner we just found on Craigslist (thanks to you). All of your hints will go to good use. I love your honesty. I’ll be sending the link to my husband for sure. And, I have just ordered a Brobe at Amazon. How handy is that? Thank you again!

    • Sandy, I am sorry, I didn’t get an email alert that you commented! I didn’t have a Brobe at the time of my surgery, but it seemed like a nice way to help manage drains etc. after. I would love feedback on how it helped you! I am glad you found a recliner, so helpful. Mine sits in the basement now and doesn’t get used much. I should move it to our main room… I miss my recliner.

  • Diana

    I am in the middle of week 3 post bilateral mastectomy and DIEP reconstruction. I took care of my little boys during chemo and feel helpless right now because I can’t take care of my boys. I do not in any way regret my decision and was very relieved when I saw myself for the first time post surgery. I cried when I realized how natural everything looked! Of course, they don’t look completely normal, but my Dr says I have more out patient procedures to do before he’ll be done. Anyone who is facing this decision, please look up a DIEP reconstruction. The recovery is longer, but I feel like it’s completely worth it! Thank you Mandi for this post! You’re right the shower chair was a must. I got dizzy before the shower when I looked down at all the changes. Really big men’s button up shirts with a belt under my chest is what I’ve been wearing to Dr appointments and have actually gotten some compliments. I have also been taking the pain meds but have been lucky enough not to need the opioids very often. I take colace and miralax and have had no issues with constipation. I also keep a 19 oz cup of water by the bed and drink two or three of those a day. I got it from the hospital. Make sure when you are leaving to ask the nurses for things you may need. My nurses put together bags and boxes of tape, pads, spirometer, gowns, blankets, cups, and other things I would need. If it’s in your room, and it’s going to be thrown away, your insurance paid for it so take it home! I hope this helps someone!

    • Thanks for your added notes Diana! Very useful! I hope you are continuing well on your path to recovery!