Your Mastectomy & What to Expect

How to Prepare For Your Mastectomy – Twelve Tips

It’s been three years since my bilateral mastectomy. It still sometimes feels like a bad dream, and seeing my own reflection in the mirror sometimes still startles me and always reminds me. Before my bilateral I felt very unprepared.

How does a woman prepare for a mastectomy anyway?

Is it even possible to prepare for such a thing?

Well, yes and no.

As with most things, even the awful stuff, it’s sometimes helpful to get the advice and perspectives from someone who’s been there.

Despite the fact that this type of surgery is becoming more commonplace, it is major surgery and this fact should never be downplayed.

When a hospital chaplain popped into my room before my bilateral and asked dear hubby and me if we would like a prayer said, the seriousness of the situation really hit home. Interestingly, no chaplain showed up for any of my other surgeries.

Before my bilateral, I sometimes found it difficult to keep my imagination in check. I can honestly say, following my surgery I was somewhat pleasantly surprised, huge emphasis on the somewhat. I had expected things to look worse. That’s something we women are pretty darn good at doing, imaging the worst, so try not to do that. This is easier said than done I know.

Keep in mind my tips are for the individual who has already made the decision to have a mastectomy of any kind and due to any reason, prophylactic or otherwise. This list is certainly not all inclusive, but I’m hoping these tips help a little. Sometimes a little turns out to be a lot.

To download my list of twelve tips – Click Here

1.  Once you’ve made the decision to have a mastectomy, you might next be asked to consider reconstruction options.

No woman should ever feel pressured to choose reconstruction. Some women choose it. Some do not. Some wait a while. Never choose it unless it’s something YOU truly want to do. This is about you.

 2.  If you do choose reconstruction, be sure to research ALL options.

Do not choose based on what the plastic surgeon sitting in front of you has experience doing. Your needs might be best met elsewhere. Get a second opinion if at all possible. And of course, ask questions over and over until you understand things as much as possible.

 3.  Allow yourself time to grieve for your breasts.

And yes, we can and do grieve for body parts we must give up, including breasts. Parting with them is a huge deal not only physically, but emotionally as well. So go ahead; cry, scream. Repeat. Also, recognize this grieving doesn’t necessarily have an end date.

  4.  Stock your freezer and your pantry.

No need to say more, right?

 5.  Clean your house before hand if you can and feel up to it.

If cleaning your whole house feels too daunting, clean most thoroughly the rooms you will be resting/sleeping in most of the time. This way you won’t be as annoyed about all those dust bunnies and such while trying to rest.

 6.  Buy yourself an undergarment with pockets specially made to hold the infamous drain tubes.

A prescription might be in order if you wish to have your insurance cover the cost, so be sure to ask for one. These garments are expensive, but well worth it. If you can sew (I cannot), you can possibly create your own.

 7.  Pillow. Pillows. Pillows! Shop for a comfortable pillow as you’ll probably be sleeping on your back for quite some time.

I splurged and bought a really pricey one, well, compared to what I was used to it was pricey. Having extra pillows on hand to support your arms/legs/whatever can help make you more comfortable.

 8.  While we’re on the topic of sleep, pick out an alternative spot where you think you might feel comfortable sleeping as your own bed might not work for a while.

I slept on my blue, leather sofa for weeks. And be prepared to give up your used-to-be favorite sleeping position, maybe even for good. My favorite sleeping position used to be on my stomach. Sadly, nights sleeping in that position are over.

 9.  When shopping, pick up some button-down pjs plus, a few blouses/tops that will make getting dressed and undressed easier for a while. If you prefer over-the-head tops, be sure to have some extra roomy ones on hand.

Also, some packaged cleansing towelettes are nice, especially the ones you can warm up in your microwave before using. Generally, no showering is allowed for the first week or two.

10.  Take photos of your original breasts.

This is one thing I do regret not doing. It’s nice to have a photo to look at later on just in case you might wish to. It helps with the grieving process. Also, on a practical note, a photo can help you pick out the best positioning for nipples and later on the best color for tattooing if you choose to do either of these things. My plastic surgeon took before and after photos, but so far I haven’t asked for them. Maybe someday I will. It’s just easier to take your own.

11.  Obviously your body image is going to be drastically altered, so open communication is an absolute must.

Communicate your true feelings/fears to your partner if you have one, but first admit them to yourself. Consider keeping a journal where you can really let it all out.

12.  Seek some professional help if you think you need extra support and guidance.

Online support from others who’ve been there is wonderful as well and is readily available.

It’s worth saying again, this is major surgery. The impact of it all probably won’t hit until sometime after it’s all over.

Remember physical healing takes time. Emotional healing takes even longer. Sometimes a lot longer.

So be kind, patient and gentle with yourself.

You deserve nothing less, especially now.

Finally, remember we all do what we must, and you will too.

You can do this. 

Sign up for my newsletters!

Do you have suggestions (links welcome) to share about preparing for a mastectomy?

If your partner has had breast surgery of any kind, do you have tips that might help other partners?

If you are facing a mastectomy soon, what do you want to know?

Read more about preparing for your mastectomy in my ebook available only at Nancy’s Point.

 

Facing Your Mastectomy

 

How to prepare for your mastectomy - 12 tips

 

 

 

 

60 thoughts on “How to Prepare For Your Mastectomy – Twelve Tips

  1. I had a bilateral with immediate TRAM flap reconstruction. I was very eager to get it out of me. I was stage 2. I did it this way thinking that I did not need chemotherapy, but afterward it came back that I need chemotherapy. I am not sure what has caused the TRAM to fail; whether I am eating smaller portions than I ever have or if the chemo had something to do with it. If I had to do it all over again, I would definitely wait for reconstruction.

    1. Karen, I’m sorry to hear things didn’t go according to plan. It’s hard to know sometimes if we have made the right decisions, but we do the best we can at the time we must make them. Thanks for sharing about your experience. My best to you.

  2. This is a terrific list, Nancy.

    I would add two things.

    1) Make sure you understand the surgery. That sounds simple. The first thing that popped out of my mouth with the surgeon (since at that time I’d never seen a woman’s body following a mastectomy. Now images are more commonplace) was, “describe the operation.” Where is the incision, where are the tubes placed, why are there tubes, will lymph nodes be removed, etc. If a sentinel node biopsy is performed that too comes with a procedure and injection of a radioactive dye. Also, if a frozen section is performed on the lymph nodes and the sentinel node is positive, do you want a full axillary dissection? It’s best to have this thought out in advance.

    2) Ask trusted others for help. Everyone has friends who truly want to help. Tell them what you like to eat (if someone says, I’ll bring something, tell them what you like!) or do errands for you. Your partner or a friend may need to help you with drains. Make sure that person isn’t squeamish. I was suprised my DH, who detests most things medical, helped out like the Eagle Scout he is.

    This is a great post. For me the more I know the better I do.

    Thanks much,
    jody

    1. Jody, You’re absolutely right with your #1. I guess I was assuming that once the decision had been made a woman would have a clear understanding about the mastectomy surgery itself. Never assume, so great addition. I remember my surgeon drawing lots of diagrams and also showing me exactly where the incisions would be made on my chest. He tried his best to explain things to me and that was helpful. Your #2 is so important too. Thanks for reading and for the additional tips.

  3. Excellent list and additional suggestions from Jody!

    Since you welcome links, I’d like to share a checklist that I created when preparing for my mastectomy. It includes tips for getting your body prepped, what to gather for your home, as well as what to pack for the hospital: http://bit.ly/WHLKHP

    My own detailed account of the mastectomy I underwent in January 2013 and following reconstruction (including photos) can be found on my blog: http://bit.ly/11fqEDO

    1. Mogatos – Did you do have the saline implants? I was back and forth with the between the saline and tissue reconstruction.

    2. June, I chose reconstruction via tissue expanders and then implants. I am still in the expansion phase, so don’t have my final squishy implants yet.

      I hope your surgery goes well next week. Wishing you a speedy and complication-free recovery!

  4. I am scheduled to have a bilateral mastectomy on July 3, 2013. I have DCIS Stage 0 in my right breast and a small lump in my left breast. I had thyroid cancer in 2007. I decided to have the mastectomy because I don’t EVER want to hear those words again and a mastectomy will lower my chances. I did decided to have the DIEP flap reconstruction at the same time. My doctor said if it has not spread to my lymph nodes I will not need radiation and chemo, that’s what I’m hoping for. Your tips are very helpful. I did order the jacket for the dreadful drains.

    1. Wishing you all the best. Sorry you are going thru this but glad you are taking as much control as you can.

      I had thyca in 2006. My mom died of bc (stage 3 then 4). My sis is 15+ yr survivor. I am high risk and under every 6 mos surveillance program.

      1. MJ, I’m sorry about your mom. Being high risk isn’t easy is it? Wishing you all the best as well. Thank you for stopping by. And it’s great your sister is a 15+ year survivor.

    1. Renn, Oh my gosh, I forgot about your terrific post. Thanks so much for sharing the link. And yes, it is sad that’s your most read post, but it’s very helpful none-the-less. Thank you.

  5. Nancy,

    A wonderfully helpful post! Number 10 really resonated with me. At the time I was going to have my bilateral mastectomy, I hated my breasts and didn’t want to take pictures or at least sketch them. I thought of it, but I just was so disgusted with how much torment they caused me, I didn’t want to remember them.

    It’s amazing how feelings change. I wish I did take those pictures. Part of my grief is that I think I’m forgetting what they looked like. I wish I had sketched them. There’s something so calming about art; maybe it could’ve helped.

    A suggestion to add to the list is that if one can, one should exercise during the time period leading to the surgery. For a year prior to the surgery (that’s how long I fought for it), I ran, swam, lifted weights, and walked. It really helped me recover in the hospital. Of course, I still suffer body pain and emotional trauma, but it helped to be in the best physical shape possible.

    Oh, and there’s this great meditation CD I used about preparing for surgery. It’s by Belleruth Naperstek (spelling?) and is fabulous. Through guided imagery, I was calmer before surgery than I would’ve been without it.

    1. Beth, It’s interesting how our feelings change over time. I never thought of taking pictures of mine before my surgery. It didn’t even occur to me. I really wish I had for the reasons I mentioned in the post. Thanks for adding your suggestion to keep exercising. That’s always good advice. And meditation CDs – terrific tip. Thank you!

  6. If you’re having reconstruction and are considering having nipples, be sure to ask the PS to see pictures of his work. I saw how difficult it is to get them right and it was the deciding factor that convinced me to forgo the nipples.

  7. This is a helpful and thorough list you have provided Nancy. I found our recliner to be the best place to sleep for the first couple weeks after my mastectomies. A surgical camisole, with pockets for the drain tubes, is very helpful if insurance covers it or you can afford it. (I got a prescription for one.) I had my husband take some pictures before my surgery. I rarely look at them, but I am glad I have them.
    Something else that was very important for me is that as soon as I woke up from surgery, I took a look at my new chest terrain (I chose no reconstruction.) I wanted to face it head on and start getting used to it. It still took months of grieving and healing, but it also helped me accept and move forward. Thanks Nancy and those who have added to the list.

    1. Lisa, Good for you for facing things right from the start. It took me a while to even look at things. I slept on the sofa for quite some time and even now I sleep mostly on my back – which I don’t care for. I’ve heard others mention sleeping in a recliner too, so that’s often a good alternative. The surgical camisoles are wonderful aren’t they? I wore mine for ages and ages it just felt really comfy. I’m glad you took photos. I wish I had. Thanks so much for sharing, Lisa.

  8. Adding my 2cents…

    Don’t ever take cancer advice from a plastic surgeon…if they try to give it to you, move on. Often a PS will try to convince you to have a certain kind of recon based on what type of surgery they prefer to do, not on what is best for your body, health or lifestyle…and sometimes they use scare tactics to do so 🙁 Be wary.

    I personally couldn’t have slept in a bed if you paid me…not for about a month. One of those electric recliners was essential for me. I had bought a lot of pillows thinking they would help, but no…that chair was my savior.

    See if you are entitled to a visiting nurse…our insurance didn’t make it easy to find out or arrange, but we were able to get one and it made a HUGE difference…and turned out to be necessary. So even if you think you don’t need one, find out what it takes to get one, just in case.

    Know that no matter what…no matter if your surgery doesn’t go as planned…your results are less than you hoped for…you end up needing chemo after all when you thought you wouldn’t (all of which happened to me) — you will get thru it, there will be daily life again that doesn’t constantly revolve around cancer every minute. That “new normal” does exist. I wish someone could have chanted that at me every day.

  9. I am currently debating next course after my expanders became infected…if I should even take a next “course”…I wanted to share a few things that helped me.
    Hand Held Shower…I had a compression vest which also covered my drain site…I found a wrap around/velcro towel that I would wrap around chest area and stand in shower with hand held and was able to “shower” certain parts….and lean over to wash hair
    #2 I found some “moo-moo” sleeveless front snap shirts that had pockets on the front (ones grandmom wore)
    #3 a recliner was my best friend?
    #4 Pill organizer…prepared for the week ahead (hard to twist off tops)

    1. Michele, Thank you for sharing the great tips. Good luck on figuring out your next course of action. Sorry to hear about the infection – just another reminder that sometimes complications can and do happen. Thanks again.

  10. Great suggestions. Just wish I’d taken that photo of my breasts prior to the biopsy (and subsequent black and blue markings on my right breast). One thing that I am glad I did which isn’t suggested: talking to the anesthesiologist before surgery. I had had problems with nausea after a previous surgery and by talking to the anesthesiologist, I was able to get motion patches to place behind my ears and anti-nausea pills to take prior to the mastectomy. No issues with nausea and for that, I’m grateful.

    1. JoAnn, Great tip. I never would have thought of that one. I think they did actually ask me before my other surgeries if I had been nauseous with anesthesia and I definitely said YES! I was pretty sick after my bilateral actually. And I know what you mean about the photos. I can’t believe that didn’t even occur to me… Thanks for sharing.

  11. Change to a smaller purse before surgery. Mine was way too big and heavy and I couldn’t access my smaller options post mastectomy for awhile.

  12. Excellent list, Nancy. I’d elaborate a bit on the shirts that button up. I had tank tops I could step into, and they were a life-saver (or rather, a pain-saver) . . . it was much easier stepping into a shirt than attempting to pull it over my head. This lasted for nearly a month. ~Catherine

    1. Catherine, I liked tanks too. I had some really stretchy ones that felt super good. I loved my camisole that I purchased with my prescription. I wore it for months and months because it felt so darn good. I found reaching back was hard too for a long time. Just having some options is what’s important. Then you can figure out what works best for you. Thanks for sharing.

  13. I think this list is great. When I was diagnosed with bc I needed to have a Mastectomy and opted to have a free tram diep flap reconstruction. I was terrified, but I did it, although I was a little too trigger happy with the pain relief afterwards( I felt awful) my advise would be not to touch that pain relief unless absolutely necessary. After treatment I got myself incredibly fit but needed to have a second mastectomy as I had had Hodgkin’s disease as a teenager. The weeks leading up to surgery I ate so healthily drank lots of water and also introduced juicing recipes into my diet, spinach and everything,. Unfortunately the reconstruction I had this time failed however what was amazing was how I healed completely in two weeks it was incredible. I believe the juicing paid a part in thAt. Another attempt at the reconstruction an igap was my focus again with juicing. The procedure was complicated 25 hours of continuous surgery but the body is an incredible thing. Again 2 weeks later I was complete healed!!! I couldn’t believe it. Exactly 12 months later I ran the London marathon and raised £10500 for UK charity breakthrough breast cancer! This is a fraction of what I’ve achieved! My story is told in Worms on Parachutes which is on Amazon . The foreword is written by a senior radiation physicist from MDAnderson in Houston as he thought it was such a powerful and amazing book that will help All cancer patients! The title is intriguing and you must read it to find out why, it will make all your hairs stand on end . Check out the reviews too on amazon.co.uk to get more of a feel. Thank you for allowing me to post this. Thinking of all those you unfortunately face this experiencexxx

  14. Great info. I also always advise to bring a pillow to the hospital for the ride home. It helps to hold it to your chest to buffer the bumps. The roads are always bumpy on the ride home – good idea for a hysterectomy too!

    Do take photos… Sloan Kettering took mine and I asked for a copy. My original breasts look better in my imagination than they ever did in life!

    1. Maesprose, Great tip. I did go on a road trip after my bilateral and I did take pillows along and sat in the back seat. I felt safer and more protected back there. Thanks for reading and for commenting too.

  15. Thanks for posting this list and all the other additions. I am having bilateral mastectomy in less than 2 weeks and I am so anxious and nervous. I am stage 3 with lymph node involvement ER-, PR- HER2+. I have already completed 8 rounds of chemotherapy because my tumors were large and aggressive – chemo wasn’t as bad as I expected and I continued to work which helped my mind stay preoccupied on other things besides my cancer. I will have 6 weeks of radiation following surgery and a year of Herceptin infusions (maybe also projeta, a new drug which was just recently approved). I am choosing not to do reconstruction for many different reasons. I just want this cancer out of me and to be on with my life with my husband and 5 children. Good luck and good health to all of you!

    1. Donna, I am sorry about all the things you are dealing with. It’s an awful lot. I’m glad you’ve made the decision that feels best for you regarding reconstruction. Thanks so much for reading and for the good wishes. Good luck to you as well. Keep me posted on things.

      1. Thank you Nancy I will keep you updated on my journey – surgery is set for next Wednesday January 8th, 2014 – Happy New Year to all!

  16. Thank you so much for the list. I will be having a bi-lateral mastectomy and lymph node dissection on Valentine’s day 2014. I really appreciate the advice about pictures – wouldn’t have thought of that. I am just anxious to get the cancer out. I am doing my 5th taxol this morning and will be doing chemo up until about a week before my surgery. Like Dana above I am also stage 3c, but her-2 negative luckily. I have a long year ahead and it always helps to have others share their experiences when we are facing cancer treatments. That has been the most help to me so far. Well that and having the most amazing fiance walking beside me every step of the way. Again thank you for sharing your tips with all of us.

    1. Roberta, I’m so glad you took time to give me some feedback on this post. Sometimes I forget that older posts are still being read, so that’s really lovely of you. You do indeed have a long year ahead and there is much to deal with, but you’re not alone. Sharing does help tremendously. And of course an amazing fiance walking beside you is pretty darn nice! Good luck with your surgery. I’ll be thinking of you. Do keep me posted on things. Hopefully you’ll find some more helpful posts. And often times the comments are the best part.

  17. Great tips, Nancy! Numbers 6 and 10 hit home with me. I hadn’t prepared for the drains, which really — as you know — are terrible. I also didn’t take pictures of my breasts, which I regret. I am not ready (and I may never be ready) to ask my reconstructive surgeon for before/after pix.

    My other tip: if you can, exercise from the moment you know you’ve chosen this surgery. I exercised well, and it resulted in better healing outcomes. My docs were amazed. I could lift my body with one arm to help those changing my bedsheets in the hospital, and I was in less pain. I attribute this to exercise.

    1. Beth, I do regret not taking photos, but I just wasn’t thinking about that at the time. Some day I might ask my plastic surgeon for the ones he took… why is this so hard to do? Geez… And great tip you shared. Exercise helps just about any situation I guess. Thanks for reading and sharing.

  18. I had my bilateral mastectomy with reconstruction on 12/30/13. Wished I had seen your sight before surgery. While I am still numb? the hard part of the expander is so tender and having the pins/needles feeling at times – trying to find that right cami to wear. Do you have any suggestions? Thanks for all your info. – very helpful even being on the other side – very comforting.

    1. Karol, I’m so glad the surgery part is behind you. It will take a while to heal from this so please be kind and patient with yourself. As far as camisoles go, I found some at Target that were very light weight and stretchy. I still wear them. Also, be sure to check out the CureDiva site on my right side bar. And remember if you do shop there, you get a 10% discount if you put in the Nancy’s Point code. They have some nice selections to choose from. Thanks so much for reading and commenting. Your feedback means a lot.

  19. Thanks Nancy for your quick response, sweet words and for the discount – I will check them out and take a trip to Target. I did look at your other articles – and yes, I do miss them too. Thanks for your honesty.

  20. I am hoping that someone can give me suggestions on how to handle questions from my kids. I am having a bilateral mastectomy in a few weeks and I have a 7yr old girl and 5yr old boy. I still have not figured out how to tell them. Or what to tell them. My daughter is aware that the previous surgery (lump removal) came back with “bad” tissue. Does anyone have any experience talking to kids of this age? I want to be as honest as possible with them without scaring them.

    And thanks for the great prep suggestions. I feel more at ease about this whole experience.

  21. Great suggestions. My mom is having a mastectomy tomorrow. She is living with us. Anything else anyone can suggest as far as being there for her and how to deal with her grieving process, please let me know. Not sure how she will react and how I will be able to make this easier on her. She is not particularly interested in talking about this. We only found out about cancer and surgery a few days ago so I think she is still numb and well, so am I…

    1. Josee, I’m glad you find my suggestions helpful. It’s wonderful that you are trying so hard to be supportive, I can’t tell you how important that is. It’s a lot for her, and you, to take in and process, so take your que from her. Be there. Listen. Validate her feelings when she does express them. Good luck with things.

  22. I read every list and post I could find when preparing for my double mastectomy. All the information was extremely helpful. I set up my recovery area using a lot of what I found in the posts. Thanks to everyone. One item that I didn’t see that I want to mention. I chose to have no reconstruction. I looked at pictures and discussed with my doctor how I wanted my scars to look post mastectomy. Here is the one thing that I didn’t do that I wished I had done…make sure that my husband looked at post mastectomy pictures too. Although I was prepared for what my breast area would look like, he was totally unprepared. Not that it makes a difference to him but he had additional questions that we could have put behind us before the surgery.

    1. Kim, Thank you for sharing that piece of advice. Might be a good idea for some couples to consider doing. The saying, two heads are better than one, comes to mind. And I read no lists before my bilateral, and boy, do I wish I could have. Thanks again.

  23. Hi ladies,
    I am so glad I have found this page. To be honest I am truly shitting my self, I am having a double mastectomy on the 8th of June, to reduce the chance of cancer My mum was diagnosed with breast cancer at the age of 31 than again at the age of 48, her sister at the age of 50 plus, plus my dads aunty also. I have chosen to go with the implants, my mum had used her body tissue and has had a terrible result.
    I’m so scared I feel like I can’t talk to anyone, I keep telling everyone it’s not a big deal even through I know it’s huge, I’m worried my husband won’t be able to handle the stress with me being in hospital and recovering at home with our 3 children, 10,8,4.
    I have taken 4 weeks off not not sure if this will be long enough for my recover. I met up with my specialist who is also doing my surgery on the 26th of this month to finalise things. Your list/tips are amazing and I have taken notes.
    I can relate to what you are all dating about our breasts I keep looking and feeling them worried about not feeling the same anymore etc.
    I am worried if I don’t clear my mind now I will have more issues after the surgery.
    I’m not sure if I am sounding weird or silly.
    You ladies are truly inspiring.

    1. Amanda, You do not sound weird or silly at all. You are facing major, life-altering surgery and it’s very scary and over-whelming. Be kind and patient with yourself. And don’t feel you must constantly put up a brave front, it’s way too exhausting. Be honest about your feelings. How else will others every understand? Good luck with everything. Glad you found this page too.

  24. Thank you for sharing. This has been most helpful and Nancy, you are great and so funny. it seems it is either “Laugh or Cry” here… My baby sister is going in for surgery on 1/6/16. Single Mast. This is how we get rid of cancer!!!

  25. My Name is Denise. I am diagnosed with stage 2 breast cancer. I have decided to have a mastectomy. I need to do genetic testing first because if the results states that I have the cancer gene, both of my breast will be removed but if no cancer gene, in getting one breast removed. In anxious nervous and exited but I am definitely motivated to fight this cancer out of my body.

    1. Denise, You are facing a lot right now and will be making some huge decisions. At times it can be quite overwhelming, so of course, you’re feeling anxious and nervous. Who wouldn’t be? Take time to think things over carefully, ask tons of questions and make decisions you feel are best for you. You’re not alone. My best to you.

Leave a Reply

Your email address will not be published. Required fields are marked *