Treatment

Having a Mastectomy? 10 Insider Tips

PJ Hamel Health Guide July 24, 2008
  • Increasing numbers of women are having mastectomies these days. Whether it’s women with large and/or scattered tumors, women who want to slash their risk of recurrence in the same breast, or women who have both breasts removed when one is cancerous, mastectomies are on the rise. In addition, ab...

17 Comments
  • PJ Hamel
    Health Guide
    Jul. 25, 2008

    This is from my friend Dani. Thanks, Dani! - PJH

     

    The car thing?  Even if you are a passenger, maybe more so if it's your left breast that has been worked on, seatbelts are a risk. Put a small pillow in the car and put it between you and your seatbelt. Be especially careful that your seatbelt is properly placed across your sternum. Shoulder harnesses...

    RHMLucky777

    Read More

    This is from my friend Dani. Thanks, Dani! - PJH

     

    The car thing?  Even if you are a passenger, maybe more so if it's your left breast that has been worked on, seatbelts are a risk. Put a small pillow in the car and put it between you and your seatbelt. Be especially careful that your seatbelt is properly placed across your sternum. Shoulder harnesses on newer cars are adjustable, changing seat height can alter where the shoulder harness hits.  ool around with this pre op. and make it safe.

    The clothes thing? Have a few pairs of 'yoga' style, below the waist, pants or leggings; what our moms called stretch or sweat pants work well. If you've had a tram you won't want anything touching your belly for some time.

    Have a bunch of oversized button-down-the-front shirts. I used white men's dress shirts (easy to bleach if the drains or bandages leak) with black leggings. I added a bright shawl/scarf and looked sorta spiffy even when I felt bad.

    Buy cheap cotton camisoles. They are more comfy than a bra the first weeks out.  Buy a size that will be snug enough to hold bandages, but not too tight. The camisoles will get icky with stains and eventually you'll probably toss them out—that's why you buy the cheap ones.

    Buy cheap sports bras, a bit bigger in the band then you usually wear. A lightly compressing sports bra is the next step after camisoles, towards more normal dressing.

    Have a few big scarves. You can buy 'sarong' type scarves fairly cheaply. They hide drains, lumps, bumps, and look GREAT. I had one in the hospital and wrapped it over me for walks, much nicer than the grey print 'bathrobe' they give you.

    Buy or make a drawstring pouch, about 6 x 8 inches; use happy fabric. Unless they've come up with a better system in the last few years, those drains are just icky looking and no matter how careful you are about pinning them inside your shirt, they find a way to slip out. Place your drains inside the drawstring pouch and pin it on your shirt.  Much less upsetting for little kids or squeamish folks. Also, the less 'sick' you look the better you'll feel.

    Diaper pins! Buy a pack or two to hold the drains to clothing. The hospital here used safety pins which pop open when you bump them - OUCH.

    Bring along with you gum or mints, lip balm, contact info. of friends and family, and happy socks (whatever your favorites are! most ORs are happy to let you choose your own socks).

    Ahead of time?  Many of of us are lucky to have neighbors and co-workers provide meals. I made double batches of my favorite soups and froze a bunch. It was nice to have familiar food for my family while I was healing.

     

    Think about relief for your caretaker.  Set up a list of friends/family who can be with your so your caretaker can go to work/take a break.

     

    Get all prescriptions filled ahead of time. Docs love to hand you a script as you leave the hospital, which is the worst time to be thinking about a trip to the pharmacy. Call their office and insist they call things in prior to surgery. Have it picked up and ready at the house before you leave for the hospital. 

     

    Extra paper tape, antibiotic ointment, aquaphor or whatever post-op scar treatment, Ibuprofen, and small gel ice packs (several) are all handy to have in stock. 

     

    Consider setting up a website like "CarePage" that easily lets folks stay in touch. I was so happy to have so many folks care about me, but the constantly ringing phone was tough!

    When people ask what would you like? A certificate to Audiobooks (post-anesthesia you may not feel up to reading). A certificate to Nextflix. An hour of garden weeding or mowing. A turn at shoveling your walks. Driving you places. Keeping you company so your primary caretaker can take a break. These are just a few gifts under $25 that I really appreciated.

    • Anonymous
      Wisconsin Grammy
      Jul. 26, 2008

      Sure wish I had found this information in April when I had my bi-lateral mastectomy!  The sports bras are great for me too.  I did not and don't think I will have reconstruction.  I love not having to wear a bra if I don't want to, but some clothes rub and irritate my scars.  The sports bra prevents this. 

       

      Nobody mentioned anything...

      RHMLucky777

      Read More

      Sure wish I had found this information in April when I had my bi-lateral mastectomy!  The sports bras are great for me too.  I did not and don't think I will have reconstruction.  I love not having to wear a bra if I don't want to, but some clothes rub and irritate my scars.  The sports bra prevents this. 

       

      Nobody mentioned anything about sleeping in a recliner instead of bed for the first few days/weeks.  Am I the only one who found laying flat too uncomfortable? 

       

      I think PJ underestimated the recovery time.  I was only in surgery for an hour and a half, but 3 months later, I still have moments where my body tells me (as my girlfriend put it) "Holy Crap!"  Don't push yourself.  Naps are wonderful! 

       

      To anyone who has just been diagnosed with breast cancer who is trying to decide whether to have a lumpectomy or mastectomy, if your surgeon gives you the choice of removing both breasts, I would recommend it!!  My mammogram showed calcifications on my right breast which were biopsied.  They were diagnosed as DCIS (Ductal Carcinoma In Situ).  My surgeon, God bless him, sent me for an MRI (which I later found out is not normal procedure).  There was another suspicious area on the right breast, and also a suspicious area on the left breast.  He sent me for an ultrasound on the left breast which did not show anything.  After much agonizing, I decided to have both breasts removed.  The suspicious area on the left breast was also cancerous!!  I am so glad he suggested that option to me.  It wasn't nearly as traumatic as I imagined.  I was frustrated that I wasn't back to normal after a month.  After 3 months, I still have twinges of pain, and tenderness.  I understand the tenderness can last for years.

       

      Take one day at a time.  Nobody wants membership in this club, but there's great support from others who have been club members for a long time.      

    • PJ Hamel
      Health Guide
      Jul. 26, 2008

      Thanks for your great input - there are no hard and fast rules with cancer, are there? We all have our own experiences... And it's nice to share them.

    • Anonymous
      Sue from Alberta
      Aug. 02, 2013

      Hi, my doctor wouldn't do a double mastectomy when I was first diagnosed in 2011.  He did agree to do a prophylactic mastectomy once all of my treatments were completed and I was healthy enough.  Well, he could have done the operation in January, but I put him off until June, because I'm a bowler and I just got back into the sport.

      Anyway, before...

      RHMLucky777

      Read More

      Hi, my doctor wouldn't do a double mastectomy when I was first diagnosed in 2011.  He did agree to do a prophylactic mastectomy once all of my treatments were completed and I was healthy enough.  Well, he could have done the operation in January, but I put him off until June, because I'm a bowler and I just got back into the sport.

      Anyway, before my first surgery, he took a marker and wrote "Y" on the breast to be removed and "N" on the healthy one.  I asked to borrow his pen and almost got it, beause I was going to put a "Y" on the healthy one too -- he caught me.

      I've now had my second mastectomy and let me tell you, it seemed harder to heal than the first one, probably because my immune system is so screwed up.  Here are a couple of things to add to your wish list:

      1.  I used a funky apron to hold my drains.  The pockets were in the right place and I could cover the apron with a loose shirt if I wanted to.

      2.  I used a bathrobe belt/tie to clip my drains to when I was in the shower. 

      3.  My doctors never said anything about not driving and I have had to put a towel or thin pillow between me and my seat belt.

      4.  The "genie" bras are wonderful to wear if you don't like sports bras.

      5.  Like your other readers/submitters, it feels great to not have to wear a bra.  Let me tell you, I was a 38J-K (yes they make them that big), but now with the mastectomies, I have some body image issues to deal with, but I am not considering reconstruction.  It seems like another invasive surgery. 

      Above all, stay positive and look for the good in everything.  While I am going through the "paranoia stage" we all have, I'm getting on with my life and doing what I want to do.  Take care everyone.  Sue from Alberta, Canada

    • Phyllis Johnson
      Health Guide
      Aug. 02, 2013

      Thanks for sharing your experience.  I think you will feel better once you are completely healed because you won't be off balance anymore.  I love your marker story!

    • PJ Hamel
      Health Guide
      Aug. 02, 2013

      Sue, thank you SO much for adding your "insider tips" here – it's incredibly helpful for women going thorugh this surgery to hear from someone who's "been there." Here's to continued healing, health, and happiness – PJH

  • smodomly
    Jul. 09, 2011

    I second the advice about getting loose-fitting button-up shirts and pull-on pants. The drains were really gross and hard to deal with, but I got a camisole and short-sleeved shirt with pockets in the front to put the drains in. They were provided for free by a Breast Cancer Resource Center in Austin, TX. Not sure if the organization exists elsewhere.

     ...

    RHMLucky777

    Read More

    I second the advice about getting loose-fitting button-up shirts and pull-on pants. The drains were really gross and hard to deal with, but I got a camisole and short-sleeved shirt with pockets in the front to put the drains in. They were provided for free by a Breast Cancer Resource Center in Austin, TX. Not sure if the organization exists elsewhere.

     

    I wanted to add that I wish I had had my armpits waxed about a week before my mastectomy. It's really hard to shave now that I don't have as much flexibility, but the worst part is that the contours of both armpits are really different. I'm assuming some is from the sentinel node dissection and hopefully some is just swelling that will go away. Waxing's not permanent, obviously, but my hairs were really itchy, made me smell worse, and hard to shave.

    • PJ Hamel
      Health Guide
      Jul. 09, 2011

      Good piece of advice to add to this collection; I know what you mean about the contours being different, too. Mine are permanently different; more hills and valleys, harder to shave. Just another one of the little "permananet pleasures" of breast cancer treatment! PJH

  • nanette
    Mar. 27, 2009

    i am a 2 year breast cancer survivor this coming june on my birthday. i had NO insurance. im now on hill-burton. i wanted BOTH breasts removed as my mother died in her 50's from breast cancer, both my dads sisters have had it and now my eldest sister is having a biopsy. well to make a long story short, the MALE DR decided they'd only remove ONE breast....

    RHMLucky777

    Read More

    i am a 2 year breast cancer survivor this coming june on my birthday. i had NO insurance. im now on hill-burton. i wanted BOTH breasts removed as my mother died in her 50's from breast cancer, both my dads sisters have had it and now my eldest sister is having a biopsy. well to make a long story short, the MALE DR decided they'd only remove ONE breast. it should be against the law that they didnt offer me the option of having both removed with my history. its a NIGHTMARE and i feel like my husband called me, a TICKING time bomb. nice huh??????????? are there any resources out there that can help me? this is my tax dollars at ''NOT'' WORK. IM TRYING TO GET THE OTHER BREAST made symmetrical. anyones input would be appreciated. thank-you. nanetteh 

    • PJ Hamel
      Health Guide
      Mar. 27, 2009

      Hi Nanette: I'm sorry you're struggling here.... Print the following out and put it in your pocket. Bring it to your health care provider, and see what they say. Good luck.

       

       

      PJ Hamel
      Close
      PJ Hamel is happy to be alive. As always.
      Author

      Writer, mother, wife, volunteer, and survivor: PJ Hamel joins the...

       

      The federal...

      RHMLucky777

      Read More

      Hi Nanette: I'm sorry you're struggling here.... Print the following out and put it in your pocket. Bring it to your health care provider, and see what they say. Good luck.

       

       

      PJ Hamel
      Close
      PJ Hamel is happy to be alive. As always.
      Author

      Writer, mother, wife, volunteer, and survivor: PJ Hamel joins the...

       

      The federal Women’s Health and Cancer Rights Act of 1998 reads as follows:
      “Under WHCRA, group health plans, insurance companies and health
      maintenance organizations (HMOs) offering mastectomy coverage must
      also provide coverage for reconstructive surgery in a manner
      determined in consultation with the attending physician and the
      patient.  Coverage includes reconstruction of the breast on which the
      mastectomy was performed, surgery and reconstruction of the other
      breast to produce a symmetrical appearance, and prostheses and treatment, including lymphedema.”

    • nanette
      Mar. 27, 2009

      hello. thank-you for the information. but, every time i approach this subject it falls on deaf ears. i was told the state of florida, under hill-burton ,doesnt have to go under this act. im so tired of trying its 2 years now........ nanetteh is this true??????????/

    • PJ Hamel
      Health Guide
      Mar. 27, 2009

      I'm sorry, I don't know the details of State of Florida and Hill-Burton. Have you tried going to the social services section of the hospital and asking them? Have you called the American Cancer Society? Try calling some of the phone numbers in our Free Mammogram Guide; they might be able to help you. Obviously you're very frustrated, but try to take that angry...

      RHMLucky777

      Read More

      I'm sorry, I don't know the details of State of Florida and Hill-Burton. Have you tried going to the social services section of the hospital and asking them? Have you called the American Cancer Society? Try calling some of the phone numbers in our Free Mammogram Guide; they might be able to help you. Obviously you're very frustrated, but try to take that angry energy and use it to make lots of phone calls (or personal visits). Better than letting it eat at you... Good luck - PJH

  • MARE
    Jul. 29, 2008

    Thanks so much for another great subject and article AND some wonderful tips!  When my daughter had her simple mastectomy she did use a Sharpie writing 'take this one' and on the healthy breast wrote 'not this one!'  The drains came as a surprise but for those of you who haven't had your mastectomy yet, there are instructions on the ibc support list...

    RHMLucky777

    Read More

    Thanks so much for another great subject and article AND some wonderful tips!  When my daughter had her simple mastectomy she did use a Sharpie writing 'take this one' and on the healthy breast wrote 'not this one!'  The drains came as a surprise but for those of you who haven't had your mastectomy yet, there are instructions on the ibc support list on how to make your own drain holder - if you're a sewer! There are also two places that I know of that I would highly recommend for a drain holder and terry cloth short robes without any buttons.  I didn't know about the drain holders when my daughter had her surgery but can appreciate how awesome they would be in hindsight.  We've heard some 'wild' stories about people and their drains.  I clearly remember she slept with a pillow lying against her surgical site which made it more comfortable.  Thanks again for the great tips and thanks to those who responded. 

    Mare

    Marilyn 'Mare' Kirschenbaum

    Inflammatory Breast Cancer Foundation

    www.ERASEibc.com

    Toll free in U.S.  866-944-4223

  • Hazel
    Jul. 29, 2008

    Hi, I had a mastectomy in March of this year.  My nurse recommended that I rub High Factor Nivea sun cream into the stitched area to prevent it going brown (that was after it healed!).  Exercise wise, I polished, as high as I could, making circular motions and got the full use of my arm back where they had taken 13 lymph nodes out, very quickly, so...

    RHMLucky777

    Read More

    Hi, I had a mastectomy in March of this year.  My nurse recommended that I rub High Factor Nivea sun cream into the stitched area to prevent it going brown (that was after it healed!).  Exercise wise, I polished, as high as I could, making circular motions and got the full use of my arm back where they had taken 13 lymph nodes out, very quickly, so I didnt need physiotherapy.  Hope this helps someone.

  • Phyllis Johnson
    Health Guide
    Jul. 25, 2008

    I'd emphasize starting the exercises your doctor gives you as soon as you get clearance.  This may vary depend on your scar, drains, and the doctor's philosophy, but start as soon as possible and be faithful about doing them even after you get your range of motion back.  Ten years out, I still get muscle spasms if I don't do my stretches regularly....

    RHMLucky777

    Read More

    I'd emphasize starting the exercises your doctor gives you as soon as you get clearance.  This may vary depend on your scar, drains, and the doctor's philosophy, but start as soon as possible and be faithful about doing them even after you get your range of motion back.  Ten years out, I still get muscle spasms if I don't do my stretches regularly.  As PJ says, a physical therapist can help make sure you are doing the exercises right.

     

  • smopkins
    Jul. 24, 2008

    Tragic of lymphodyma I may not be spelling it correctly but it does occur.  And can cause so many problems.  You must get therapy for this, and if you don't your arm will swell up. thee ae bandages that are very expensive that you must wear and you must sometimes use a pump not a cheap one but one that is very expensive, this is order for the fluid...

    RHMLucky777

    Read More

    Tragic of lymphodyma I may not be spelling it correctly but it does occur.  And can cause so many problems.  You must get therapy for this, and if you don't your arm will swell up. thee ae bandages that are very expensive that you must wear and you must sometimes use a pump not a cheap one but one that is very expensive, this is order for the fluid not to continue to build up.  I recently had to do this with my wife she is now in heaven but these are thing that will help you beat the odds of survival of breast cancer.

    • Anonymous
      Sarah
      Jul. 25, 2008

      Thanks for the advice and heads up about lymphedema. I just wanted to share the spelling - LYMPHEDEMA - in case others wanted to search out more info on the important topic.

       

      PJ Hamel wrote a nice piece called "Lymphedema: Evolving Research Lifts Restrictions" that covers lymphedema precautions, as well as things you don't need to freak out over, if you...

      RHMLucky777

      Read More

      Thanks for the advice and heads up about lymphedema. I just wanted to share the spelling - LYMPHEDEMA - in case others wanted to search out more info on the important topic.

       

      PJ Hamel wrote a nice piece called "Lymphedema: Evolving Research Lifts Restrictions" that covers lymphedema precautions, as well as things you don't need to freak out over, if you are facing lymphedema.

       

      Tell us what you think of the advice, if you get a chance to read it.

       

      Thanks again,

      Sarah