Top 10 Tips – Post Mastectomy

PHOTO NOTE: This photo was taken with my dad after I graduated from Northern Illinois University (Masters in Public Administration in May, 2011).

INTRO: Some things you don’t learn in the classroom, but only by going through it firsthand. I took my frustrated energies and created a list of helpful hints that will hopefully make your recovery just a bit easier.

BRITTA’S TOP 10 TIPS  - POST MASTECTOMY: 

1.  Rest.  Take it totally easy the first full week.  Take multiple naps, watch movies and relax. Have people do almost everything for you to avoid overdoing it.

2. Drains hurt! There is no way around this.  They are sewn into your body to stay in place. Their job is to keep body fluid flowing out of the area operated on to avoid swelling – they are doing their job, so remember that when you are cursing them and their pinching and discomfort.  A small pillow placed in between your side and armpit can help reduce the friction and pain.  Also a pillow purse can also help avoid the bumping. Warning…drains can be painful when you empty them. Once you empty them the suction is better and pressure increases. If this pain catches you off guard, you can unplug the drain to temporarily ease the pressure until you can get situated better.  Plan to take your pain meds one full hour prior to emptying your drains to minimize your pain.  NOTE:  Take a FULL dose of pain meds one hour prior to your appointment to get your drains out.  This can be a very painful procedure so plan ahead (and bring in a friendly hand to squeeze). The surgeon first snips the stitches, then pulls out the tube with a firm yank. No butts about it – it will hurt, but having no drains is SO much better.

3.  Pain Medication.  Don’t be afraid to take this regularly.  When you are in pain (past a 4 of 10) it is too late.  It seems counterintuitive to take pain meds when you are not in a lot of pain, but the job of medicine is to avoid pain (and relieve pain as well).  Managing pain early on avoids feeling miserable waiting for pain meds to kick in.  If one pain med isn’t working for you or making you have bad side effects, call your doctor and get a different one.  You should not have to be in horrible pain, so don’t be a martyr. Keep a regimented schedule for the first week, then reassess after your drains come out.

4.  Doctor visits/car trips.  Plan your pain meds accordingly before you go see the doctor.  You’ll be moving around in ways you haven’t been at home, so, again, plan ahead to avoid a painful trip.  Bring a pillow with you to put between you and the seat belt too.

5.  Sleeping. take your full dose of pain meds one hour prior to bed and sleep in the guest room if you have one.  Spread out and put a pillow under your affected side/s.  Simply elevating affected arm/s takes off the pressure.

6. Physical Therapy (PT).  If your surgeon or the hospital doesn’t give you exercises to do at home to help your recovery and range of motion (ROM), ask for a PT prescription!  A PT will help you regain ROM and massage your scar tissue, adhesions and also give you encouragement.  Some PT’s are also certified in lymphedema, a painful condition of arm swelling that can happen when lymph nodes are removed. Put a PT on your care team and help yourself heal faster. You might also try ASTYM treatment that helps regenerate the affected areas more quickly, but check with your doctor first. Here is a link to get you moving http://breastcancer.about.com/od/lifeaftertreatment/ss/arm_exercises_tutorial.htm.

7.  Fatigue.  This is normal, but very frustrating.  Ease into your ‘normal’ routine.  Your body is recovering from a major ordeal and healing takes a lot of your cellular energy.  Work in ‘spurts’ – maybe three a day – one in the morning, one in the afternoon and one in the evening.  A spurt may only last 15 minutes or up to an hour or two depending on where you are in your recovery.  Plan a small little chore to do for your next spurt (not shoveling the snow off the driveway) so you have something to look forward to and feel a small sense of accomplishment.  Work on a scrapbook, organize your photos, empty the dishwasher, and arrange flowers, whatever you feel like doing, just don’t over do it.

8. To Cammy or Not?  If you did not have reconstructive surgery, you may want to purchase a camisole.  Most insurance covers this and you can be fitted for a prosthetic to slip in the cami.  Some camisoles are designed to hold your drains – that would be better than the constant pinning and unpinning of the drains!  You should wait until your drains are out to be fitted for a prosthetic insert.  Specialty boutiques take appointments; ask to make sure their staff are certified fitters to make sure you get a proper fit from caring and knowledgeable professionals. Also, the American Cancer Society has resources at no cost if this is an issue.

9. Resume Exercise.  The sooner you can get up and about, the faster you will heal.  Everyone is encouraged to walk.  Start by walking the halls of the hospital – one lap on day one, two laps on day two, or whatever you feel up to.  This is not a race, so listen to your body and stop when you are tired or dizzy and rest when you are tired.   When you get home from the hospital, walk to the end of the block, then a bit further each time.  Take someone with you if you feel unsteady and don’t walk outside if weather is icy or unsafe.  You don’t want to create more problems by falling!  Take your cell phone with you as a precaution so you can make a phone call if you need to get help.

10.  Reach Out.  You are undergoing something that is not natural.  Losing a breast or breasts is very a major deal both physically and emotionally.  Cry when you need to and laugh when you can.  Do not crawl up into a ball and feel sorry for yourself (easier said than done).  There are other women that have gone through what you are feeling.  The American Cancer Society has the “Reach to Recovery” program that can match you up with a volunteer who has experienced much of what you are going through. Also, Immerman Angels can pair you with someone whose breast cancer experience is similar.  I participated in Living Well Cancer Resource’s “Mastectomy Support Group” and was able to share confidentially with other women who have walked in my shoes. Don’t suffer in silence! Talking is therapeutic and helps heal your inner feminine self.  Also check online resources to help answer questions and know you are not in this alone.  Check the links section of this website for mentioned resources and others you may find helpful.

19 comments on “Top 10 Tips – Post Mastectomy

  1. Thank you for making all this information available! The before and after has been very helpful and empowering! I’ll be sure to share this blog with others!

      • I am sure she will be fine, and I will be thinking of her today. Sometimes the cneacr road with all the hick-ups make you a stronger and wiser person and you enjoy life on a different level once your through it.

      • My mother just had her second mastectomy. I was looking for some post mastectomy clothing and somehow got on your post about the 10 things to expect …I saw the pictue of you and your dad and recognized him. when I noticed your maiden name was Wilk, I had to write. I go to church with your parents! What a great coincidence. I know they have have had a rough year. Just wanted you to know how much I think of them and what they mean to St. James. Thanks for the advice, I will let my mother read this.

  2. This comment was emailed to me by Sue and is a great one!

    “I just looked at your web site and found it very informative. It’s
    been 1 year tomorrow since I had my mastectomy for DCIS.
    Here is one tip that was given to me from a person I met at church that
    also had a mastectomey for sleeping on your back post op and it really
    worked well.

    The wedge foam pillow keeps you elevated about 30 degrees and on your
    back while you sleep and it’s very comfortable. You can purchase the
    wedge for about $30 at Bed, Bath and Beyond. It was the best, and it
    helped decrease the swelling after surgery. I did have a small pillow
    under the affected arm too.”

    • `DCIS – and 5 lymph nodes removed (clear nodes) I had my right mastectomy with no reconstruction on april 16th 2013 , and I will be 4 weeks post op and I am still very swollen , and have seroma ,its very painful ,I am still doing my exercises put its difficult ,I am having my fluid drained every week and unfortunately now have an infection so I am on antibiotics . My advice is pretty much the same get loads of pillows in bed to keep you comfortable , everyone is different atleast that’s what the hospital tell me , and so everyone reacts differently . My thoughts go to anyone who is ,or had a mastectomy its difficult but your strength get you through xx

  3. 12 days post op…. bilateral mastectomy with TE reconstruction. 18 lymph nodes removed. Still have 1 of 5 pesky drains left.
    My advice is beg, borrow or buy a comfy recliner to sleep in at night. It’s been a lifesaver for me so far, and will probably need again once permanent implants are put in later this year.
    Best wishes to you all! :)

  4. Thank you so much for posting so much great information. I have been waiting for my surgery date for over a month. Now that it is less than a week away I am getting incredibly nervous. I have been trying to make sure that I have everything but after reading your tips my mother and I had a race to get ready and go shopping. All the little things take the edge off. Thank you for taking the time to share this information and your tips with everyone to make our journey a little easier!

    • Hi Jen,
      I hope all goes well for you with your surgery. Take a deep breath, let others help as much as possible, and give yourself plenty of time to recover.
      Warm Wishes for a speedy recovery,
      Britta

      • Thanks Britta,
        I just got home last night. I only had to have one lymph node removed and it was fine! I am doing very well & was up & moving a few hours after surgery. I definitely appreciate your tips and remembered in the hospital about the pain medicine! It is true. Stay on schedule with the meds and ask before it starts to really hurt. Remember, nurses have to place the order it and wait for it to process so you won’t get your meds right away!
        I learned that a few hours after surgery. Also, try to keep track of what meds and dosages they are giving you.

        Also, I would recommend that you clean off and sanitize your entire bathroom counter and make site you have paper towels to dry your hands! (Those disposable hand towels that are in a box like facial tissues work perfect!) I didn’t realize all of the stuff I was going to need to drain the bulbs, dressings, etc. and didn’t have the counter space ready. Just a thought. Thank you so much for creating such a helpful page. It is scary and you don’t know what to really read and believe! Your info was straight on!

        Forever grateful,
        Jen

      • Hi Jen,

        So happy everything went well and they only took out one lymph node. That really reduces your chance of lymphoma, though it wouldn’t hurt to read my white paper on lymphoma on the resources page.

        Rest up, let people help you out and take time to catch up on reading and count your blessings. I like your additions to the list and should figure out a way to update my top 10 to be Top 20 to include all the great tips folks send me.

        Enjoy the summer!

        Britta Wilk McKenna Founder, Breast Cancer MyStory, Inc.

  5. Hi, I’m 6 days post surgery; partial radical mastectomy of my right breast, level 2 dissection of lymph nodes. There were 12 within the tissue taken, 3 were infected. My Dr says that’s good news, 4 and above the odds of it metastasizing increase exponentially. So 3 sounds good to me. Yes, the drain is such a pain!!!! Ouch big time. Also I hate taking all these pain Meds I feel so unstable. However all of this is nothing if I am cancer free and that’s what I keep reminding myself. Had the implant done at time of surgery and after I see the Plastic Surgeon tomorrow I will make my appt with the Breast surgeon and medical oncologist to find out what’s next. One day, one step at time we will all get through this!!!!

    • Hi Patti,

      Each day of recovery is one day closer to feeling a bit more like “yourself” again. Use this time to get your energy back, read something you’ve never had time to read and take it one step at a time. Best wishes for a speedy and full recovery and good health in the year ahead. Regards, Britta

  6. Thank you for the information! It helps to know what to expect. I am having a bilateral mastectomy on January and I am starting to get nervous. I just want all this to be over with.
    Best wishes :-)
    Anca

  7. Thank you for posting this great information. i’m having a bi-lateral mastectomy and reconstruction in about 4 weeks and had little idea of what to expect. This has been so helpful and gives me more courage to face the unknown.
    Best Wishes,
    Jennie

    • Hi Jennie,
      I’m glad you find the site helpful – that is why it is here! Remember to let others help you and take your time in recovery. Best wishes to you in your upcoming surgery and in the New Year.

      Britta

  8. I’ve been seeing a doctor once a week since 10-17-13 getting mammo’s & biopsies. Was told I have DCIS and decided on 12-20 to have a left simple mast instead of a lumpectomy. My lump is 8cm plus the 2cm clear margins. I got my surgery date today for 2-3 and will have reconstruction with expanders done immediately after the surgery. I’ve had a really positive, upbeat attitude about the whole thing so far so I’m kind of expecting some sort of shock to set in after it’s been done. I really appreciate webpages like this and it makes me feel like I’m better prepared for what’s ahead. Thanks Britta!

    • Teri, thank you for taking the time to talk about your story with breast cancer. My best wishes on what is ahead for you. Nobody should feel alone – that is why I started this website. Don’t forget to take time to be good to yourself and take it one day at a time. – Britta

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