Hey breastie! So you’re about to undergo a mastectomy? First things first, I’m here to remind you that you’re not alone. There have been many before you and until we find a cure there will be warriors after us, but medicine is miraculous and community is everything. So, here are 13 things to know before undergoing a double mastectomy.
13 Things to Know Before Undergoing a Double Mastectomy
1. Before surgery day, invest in oversized button-down shirts and button-down PJs.
Why button-downs? You won’t be able to raise your arms after surgery, so being able to slip into a shirt is key. While cozy button-down PJs will make you as comfortable as possible in the days post-surgery, button-downs will be functional, too. Bonus points for silk PJs as many people have said they help you slip out of bed easier. My first outing after surgery was 7 days later, and I wore a giant button-down to cover the apron carrying my drains.
Functional
button downs
2. Getting in and out of bed is a challenge for the first week after surgery.
You will find it very difficult to lift your upper body in order to get out of bed, and you may even find that it’s necessary for someone to help lift you up the first few times. Don’t get discouraged – it’ll get easier, but you and your abs will become great friends throughout this process. You may even want to carve out some time weeks before surgery to join me on LimitLes Movement for some 8 minute abs!
Lounge
Necessities
3. If the hospital doesn’t give you a waist apron post-surgery, buy one.
Waist apron
I know some people like to pin their drains onto their shirt or even buy the robes with drain belts, but I went old school and got the apron. I only ever took it off to shower.
4. Everyone experiences pain differently, and pain pills have a different effect on everyone.
They made me nauseous after about 5 days, so I then switched to alternating Tylenol and Advil. Valium helped to relax my muscles. While we’re on the subject of pills: If you have allergies and your surgery is around springtime like mine, get some Zyrtec or allergy relief because sneezing HURTS. Make sure you can mix with other pills before using.
5. Your appetite will most likely be affected from ingesting the pain pills.
And it’s so important to keep up with protein and vitamin C consumption for a better healing process. My mom made protein smoothies with protein powder and fruits when eggs just didn’t sound appetizing. They were so yummy alongside lots of water and vitamin C supplements such as my beloved Sambucus gummies.
6. Hygiene is hard.
I’m not going to sugarcoat it. This is when you need a true friend who will lather you up in soap and wash your oily hair (Living proof dry shampoo AND Simple Facial Wipes for easy cleaning have been lifesavers throughout this whole process). I didn’t shower every day (or even every other day oops) the first week because I was in pain, I couldn’t lift my arms, and it just wasn’t necessary in my eyes.
If you have a removable shower head and ledge/stool/seat inside, this makes showering easier since you can set both drains on either side of you. Baths aren’t permitted throughout this process since doctors don’t want you sitting in water that could potentially carry bacteria and cause infection. I dreamt about the day I could take my beloved baths again! One more thing – an electric toothbrush is so much easier than a normal toothbrush after surgery!
7. Bolster Pillows
One of the most functional gifts I’ve received are two little pink bolster pillows to go under my arms. Because you can only sleep on your back propped up on pillows, you’ll need something to support your arms at night. Many thanks to my friend Catherine Lowe for hooking a girl up.
8. Invest in a heating pad if you don’t already have one around the house.
I’m a stomach and side sleeper, so sleeping on my back every night has been very hard to get used to. A heating pad relieves my back muscles from their stagnant position, but remember to never place anything hot (or cold!) on your chest.
9. Some people choose to go to the great lengths of renting a recliner after breast surgery.
I’m sure it helps in getting a good night’s sleep, but I found that even micro-turning my hips at night and elevating my knees helps to relieve some back tension. This pillow with straps looks like it could be helpful for daytime comfort and night time too.
Lunya sleep mask
Speaking of sleep, this washable silk sleep mask is DECADENT.
10. I was told to wear a compression bra a little over a week out from surgery.
This helps with support and to cut down on fluid output (and helps get those pesky drains out sooner!). Some surgeons recommend a sports bra or a non-underwire bra with a hook and eye front closure, rather than a pullover style or back closure. Check out the best double mastectomy bras to wear after surgery.
Pocketed front-closure bra
If you’re feeling frumpy from all the messy hair, PJ wearing days, buy yourself (gift-givers listen up!) this Ana Ono beauty. This bra isn’t compression, but I was able to wear it a few months out from surgery and adore the buttery softness!
11. Redecorate
Remember to “redecorate” in the days leading up to surgery, whether that be moving coffee mugs or cooking supplies to a lower shelf. You won’t be able to raise your arms, so be weary of where everything is in your house.
12. Unscrew prescription bottles and vitamin supplements before surgery, and put them in a safe place.
It blew my mind that I couldn’t even open a simple pill bottle a few days after surgery, but it’s important to remember that restrictive movements like this are short-term as it’s easy to get frustrated. Be sure to place the open bottles on a safe counter space and learn from my mistake. I left an Advil bottle open on my bedside table one night and then next day, my parent’s tiny poodle ingested about 20 of them. I stayed with her all day as she continued to throw up the reddish-pink liquid. It wasn’t until I walked into my room that evening to see the overturned empty Advil bottle…and then it hit me. I’m not entirely sure how the six pound dog lived to see another day, but I’m so glad she did!
13. My final advice would be to throw any and all alarms out the window.
Your body needs time to heal, so take advantage of sleeping in, Netflix and chill, and find peace in the stillness. Zzzzzzzzz.
If you have any tips of your own, please leave them in the comments below! Note: This post was published in April 2017 and updated in September 2023.
Hi Leslie,I’m so glad you are set on your journey to recovery,always with your beautiful smile leading the way.
Being the daughter of a breast cancer survivor&fighter and suffering a rare,life-threatening condition myself(survived Toxic Epidermal Necrolysis twice and still dealing with various auto-immune issues)I find your attitude humbling and truly encouraging and uplifting.
Your grace,humour and strong spirit shine through all you write,I hope you carry on with your amazing travels pretty soon and carry on sharing the world through your eyes with the rest of us.
Keep strong,lots of love from England xoxo
I suggest to anyone who will have a mastectomy procedure to prepare by getting a KILI Medical Drain Carrier.
The apron is great, but for bathing the Drain Carrier is ideal. It’s made of mesh and goes in the shower or bath, while comfortably suspending drain bulbs.
The website is http://www.medicaldraincarrier.com
So proud of you Lesley!
Good to know! Thanks for this 🙂
Lesley, you have redefined courage to a whole new level. I greatly admire you taking control of your personal health. Thank you for paving the road for all of us who are still hiding beyond our fears.
Thank you for all of this information. I’m getting scared the closer my surgery date gets.
Thank you so much all of this is good to know. Can you tell us how your pain level is at this point and when it started letting up
Where were you 3.mos ago! This information will be so helpful to.many women, I wish I would have had it before my procedure. Who knew sitting up would be like knives poking at you! 2 more weeks until my reconstruction surgery!
What an inspirational read. This has really opened my eyes up to what people go through. Thanks for sharing x
Oh girl I feel you on those drains. Removal is the weirdest sensation EVER.
The best thing for hygiene that worked for me when I got a breast reduction were BABY WIPES! Couldn’t lift my arms nor get my stitches anywhere near water so even stepping foot in a shower was off limits for 10+days (though I took baths so I could at least have the lower part of my body be decently clean). As a clean freak it was difficult but the baby wipes got me through especially in the arm pits. And make sure to shave the night before/morning of surgery. Learned that the hard way. Oh, and treat yourself to a blowout or two. Or have your mom wash your hair in the backyard with a bucket. Kind of the same 😜
Thank you for sharing your journey with us. I am BRCA 2 positive and will probably be going through this same thing in the next 5 years. I am scared, but reading your posts and seeing your Instagram pictures let’s me know that I won’t be alone. Sending you lots of love and positive vibes for a speedy recovery! #fightlikeagirl
I just found out I was BRCA2 positive on Friday. Did you have any surgeries yet? I feel ready to go. My mom’s had a bilateral mastectomy and currently undergoing chemo.
I just found out today that I have stage 2 breast cancer I am 52 and freaking out. I meet with my doctor this Friday. Can you give me some tips on what to ask.
I needed this! I’m just a few weeks away from my mastectomy and I’m a little nervous. Thanks for sharing your experience. Wishing you all the best as you recover.
I was so surprised when I read your first post to see what you’ve been thru recently. I pray I never have to do this; however, my mom is a 2 time breast cancer survivor and I am very fortunate to be a low risk. Your sharing shows your courage and has to be such a help and inspiration to others going thru this. I look forward to reading more as you continue to recover. The photo in your first post with your bare breast covered by your hair was so beautiful and tasteful. Hugs & prayers to you as you continue to heal.
Leslie, thanks for sharing your personal experience. It’s beyond brave. You will never fully understand how your journey impacts others. Soon I will be going through the same journey. You have truly refind courage.
I am 41 and had a left mastectomy for DCIS a couple weeks ago…on April 10th.This was my first surgery too. Everything you’ve said is exactly what I’m feeling and experiencing… the back pain (I’m a side and stomach sleeper too), lack of hygiene (a shower is an hour process), inability to get my pill bottles open, etc. Thankfully, I have a supportive family and children who are helping me through this. Stay strong and heal quickly!
You are so BRAVE! Praying for a quick recovery xoxo
I’m not currently in this position but have always wanted to know details o. This type of journey. None of us know if or when we will experience this. How long between surgery and reconstructive surgery? Is this like a Brest implant that goes in phases? Little by little getting a size you desire? Please keep us posted.
I had the same surgery at the end of January and I couldn’t agree more with your suggestions! I didn’t have the problem lifting my arms because I unfortunately had to go with the skin sparing surgery so my incision is a horizontal one. I feel like maybe that made the difference. I go for my expanders/implant switch out surgery on Friday and I couldn’t be happier to get these expanders out! They are so uncomfortable!!! Best of luck!
So with the skin sparing mastectomy, the arm raising wasn’t an issue? I am scheduled for a prophylactic mastectomy on 9/20 and I’m starting to freak about the pain and restrictions….
No arm raising for a couple of weeks… the pain subsides every single day. Give yourself time and patience and you will get back to normal, I promise!
I found your blog after a friend mentioned your story, and how it’s so similar to mine. I’m 32 and went through my prophylactic double mastectomy in October 2015. All of your advice is spot on! When you start driving/riding again, those little pillows you mentioned are great for right under the seat belt. The expanders are something else but nothing compares to those first two weeks of recovery. I hope the worst is almost over for you! I remember I was finally feeling pretty good and normal again right before my implants, and that recovery was a piece of cake compared to the first! Hang in there. Thanks for sharing your experience and thoughts! I journaled my recovery in hopes of helping another if needed someday:)
Sports bras are the best thing ever after surgery, especially ones that zip up the front but I also found pulling my bras up from the floor vs over my head was much easier. That might not work for everyone but it helped me tremendously
This BY FAR is the most helpful thing I’ve read on what to expect and how to prepare. THANK YOU & God bless you! My surgery is in one month. I feel better already
That is SO great to hear. Sending you all my good and strong vibes for your surgery!! Love and light to you!
I have been searching for a blog that would be helpful before my double mastectomy. Thank you so much for all the info! It is so very helpful. Although my case is a little different because I was recently diagnosed with stage 2a breast cancer at age 27, coming to the decision of having a mastectomy has been one of the hardest ones I’ve ever made. I admire your courage for going with a surgery that has been so hard for me to decide to do to prevent you from having further issues in the future. Thank you again. 💕
Hi Emily, I’m so sorry to hear about your diagnosis, especially so young. Keep me updated and sending you strong vibes!
Hi Lesley
I am so glad I found this info! I am having my surgery on Friday the 23rd…. and the nerves are starting to kick in. I am having the double mastectomy with immediate reconstruction. Reading your posts have put my mind a wee bit at ease.
Jennifer
Hi Jennifer, I hope recovery is going well for you! How was immediate recon?? Would be interested in know since I went the other route!
I had breast cancer sec time ..first time was 2011 stage 0 ductal carcinoma . I went with a lumpectomy and radiation..I refused tomoxifin as I was younger.
now Oct 2022 I was diagnosed with stage 1 invasive ductal carsinoma ..I had a skin sparing nipple sparing masectomy. I’m one week out drains removed and feeling not to bad !! amazed when I looked down amazing today what sergions can do
ohh only pain I felt was the pain from the drains . that’s all ..very uncomfortable once they are gone feel good just sore
I am scheduled for prophylactic bilateral mastectomy with reconstruction on 9/20. Kinda freaking out now… Honestly, how bad was the pain?
I saw your story on Winter Games only weeks before my prophylactic double mastectomy… seeing you so happy helped convince me that it was all going to be OK in the end!
As literally everyone agrees, the drains are a super annoying part of recovery, and I had immediate DIEP flap reconstruction at the time of my mastectomy so I had four drains at once, UGH! So I bought a hoodie a size bigger than I normally would and my boyfriend’s mom sewed pockets on the inside for the drains. It made it so easy to get dressed and was still cute and comfortable, and the drains were easily hidden and didn’t pull. I lived in that thing, it was a lifesaver! I also lived in my Brobe, which is a bathrobe with pockets sewn inside.
And… I don’t have a recliner, but a large wedge pillow helped me sleep on my back comfortably and get in and out of bed more easily. With the DIEP flap my abs were as useless as my arms!!
Thank you for sharing your story!! XOs!
What a good idea! Will keep that in mind for when others ask for tips! Hope recovery is going well for you. xoxo
Hi I’m having the same immediate reconstruction and the same way, how did yours turn out ? Will you still need a second surgery for cosmetic tweaks ?
I had delayed reconstruction actually. I was told this route had a better cosmetic outcome.
Good to hear. I am having a Dbl Mastectomy with DIEP reconstruction in 3 weeks after my 2nd DCIS with micro invasion diagnosis in 2 years (first on Left with Lumpectomy + Radiation and now on Right so I’m getting rid of these babies!). The Mastectomy info is great but finding info on recovering from DIEP is harder – I will get a wedge ASAP!
Hi! I’ve been a fan of yours since Sean Lowe’s season! I have followed you on Twitter and Instagram ever since! I remember reading and hearing about your double mastectomy through various sources. I also saw you on Winter Games! I was diagnosed with high grade DCIS (left breast) on February 20th. I pretty much decided from the get go that based on numerous factors, a double mastectomy is my best option. Seeing how both you and an old roommate of mine (she was diagnosed with the same thing as I a year ago) were able to get through this difficult time gives me hope that everything will be just fine once all is said and done in terms of recovery! I appreciate the advice you’ve provided in your posting – it has been very helpful. BTW my surgery is scheduled for March 29th. If I think about it, I get nervous so I’m not letting myself go that route – the worry route! Gotta be a Warrior not a Worrrier!
Hi Liana, you will get through this surgery! I know it seems scary, but being on the other side of this will make you much healthier in the end! Sending you my positive vibes for the 29th. You got this! xoxo
Thanks Lesley!!! I’m gonna need all the positive vibes I can get!!!
The pink bolster pillows have made all the difference for me!!! Thank you so much for sharing your experience and tips. BTW: my mastectomy was April 11th too. I’m just one year behind you and 3 days post-op today. I’m so happy with my decision and doing well so far. Cheers to women like us and to our new cancer free boobs 🥂
No way!! Cheers to you, girl. Hope healing is going well!
Gosh, I sure wish I’d found this before my dbl mastectomy. It would have really been helpful. All that you describe is exactly what I’ve been through. Just wondering if you or anyone else has had the same issue with meds…I was given Oxycodone while still in hospital. I told them it was making me sick to my stomach, but they insisted I still keep taking it. One nurse would allow me to take just one. THe other made me take both. Finally after dismissal, my breast surgeon called to check on me and advised I switch to Motrin (works just as good as the Oxy but doesn’t make me sick) and informed me to increase the Valium to 3times daily (rather than just one as the plastic surgeon prescribed). She told me he was incorrect in how he prescribed. I did what she said and by 1.5 – 2 weeks I was feeling pretty ok. Pain, yes, but I at least thought I could deal with it. I ran out of the valium and ordered a refill which was filled the same way (incorrectly) and was denied at pharm due to being too soon. Called office twice and no one calls back. THey close on weekends. day So needless to say, I spent the most painful, horrible weekend of my life. Finally they call Mon. and change Rx to 1/2 a pill three times a day and an 8 day supply. (the previous was called in for 30 at 1 whole pill per day). It’s now been 10 days. I’ve not taken them and have tried acupuncture instead. I have an appt. to have air added to the expanders next week but this week again met the breast surgeon for follow up, she again says PS is wrong. I call them again. They say no first. I repeat what other dr. has said, but they say no. Next day call back to say yes, but I have to pick up at the office across town. I just don’t understand what’s going on and why this is being withheld. She advised me to save what I’ve got to get through the expansions. I researched this on line and found on the yalecancercenter.org website, the statement the most relief comes from the valium and that is what I’ve found to be true along with motrin. I think the Oxy are pretty worthless…don’t know why they are prescribed in the first place.
I am post op day 2 from bilateral mastectomy and direct to implant for breast cancer. My Aunt who is staying with me while I recover wanted to let you know the waitress apron is FANTASTIC!!! I appreciate the pink bolster pillows too. I can tell my kids are planning to own them when I’d done with them. Thank you so much for having this site with ideas. I appreciated feeling in control of SOMETHING in this crazy event even just shopping for a waitress aprons or button up pajamas!
We have to find the positives in this situation, right? Even if it’s shopping for these mastectomy necessities. Hope you’re healing well!!
Than you so much for posting these tips and sharing your story. My surgery (double mastectomy with DIEP flap reconstruction) is scheduled for July 9th and I’m one nervous Nellie. But, having this information really helps. The pillows, pj’s and button down shirts have been ordered and am shopping for the apron… kinda like the idea of finding a mesh one. I’m feeling much more in control now. Thanks again.
I had a double mastectomy a month or so ago, and second everything above! My other must-have was a neck support pillow like you take travelling. I couldn’t get comfy with the hospital pillows or at home all propped up, my neck kept hurting.
I am scheduled in November for a prophylactic double mastectomy with immediate reconstructive surgery. I would by fibbing by saying I am not scared to death. I am reading as many testimonial as possible, not to scare myself but to prepare myself. You have given me so many excellent ideas and tips that I am sure will make my recovery a little more doable. I am trying to be as prepared as can be. Thank you for sharing and helping with this great tips and ideas. I am hoping to be able to continue to follow this site.
Sending you all of my healing vibes, Jan! You will be so happy to be on the other side of this!
Thank you so much for the advice on the pillows. They haven’t left my sides since my surgery on August 28.
Hi! Im on day 11 after double mastectomy with immediate reconstruction and nipple sparing. I still have the drains because have gone for long walks outside in sunny hot florida and I guess this can cause more swelling. So now I am just resting more and hopefully these drains will be out Thursday! Dear drains..I will not miss you 🙂 My implants feel strange. I had small breasts and now they are 495cc on top of my chest. it takes time
Thank you for pointing out that you should make sure and get a heating pad for after surgery. My mother just went through a mastectomy and we are wanting to get her the best bra possible. Hopefully, we can do some research and find the best bra for her.
I am 78 years old, diagnosed August of 2017. Lost my sister to the Demon Breast Cancer, diagnosed at age 48. Thought I was “too old for it” WRONG!!! NEVER TOO OLD. BE WISE, BE ALERT AND BE PROACTIVE.
We have an electric recliner, highly recommend for getting up and out without any help. Rolled soft blankets to place under my arms. My advice? Be patient. It is a long, slow process….but YOU can do it. We are WOMAN!!!!
Carol did you have reconstruction?
I’m having bilateral mastectomy 9/24/2020. 66 yrs. small, athletic. Excellent health otherwise. Considering going flat. Surgeon on board with a clean flat look. Kind of like Barbie’s little sister Skipper lol. Need feed back from women who went this Rout.
Wow, your preparation suggestions are awesome! I’m BRCA2+ (tested in 2009) and have finally scheduled my Prophylactic DBL mastectomy for June 2019. My father died of breast cancer in 1997 and six months later my mother got breast cancer. She’s a 20 yr survivor. I’m an only child and haven’t heard of anyone else having BOTH parents get breast cancer. So I kinda feel like a unicorn 🦄
I’m very grateful for openness to share your experiences with all of “us”!! I couldn’t locate the Stella McCartney bra you mentioned…any other alternatives you could suggest? I’m a seamstress and I want to sew-up-solutions in advance…lemme know if you have ideas! 💞
And you’re an extra special unicorn at that! Check out my bra post – also under the Health section 😉
Hi Lesley,
Your’s was the most informative blog that I found!! Thanks for all the great info. I’m 5 weeks post op from a bi-lateral mast, for cancer. Here are a couple tips that I used. I was able to shower at 72 hours post op! WOW!! It was the best! Since I couldn’t really lift my arms to do anything, I put an outside, yard chair in the shower and sat down, while my BFF washed my hair. It worked great. A couple weeks later, when I was more mobile, it also worked great to be able to sit down and shave my legs!!! 🙂
Instead of button down shirts, I bought several cute, jersey knit tops and cut them up the middle, then added velcro to close. We even put some cute trim to cover the velcro. Worked like a champ, and I still felt “cute” when I left the house. The plastic surgeon’s nurses loved em too!
Best of luck to all. It does EVENTUALLY get better. Be gentle with yourself!! Love to all the beautiful warriors!!
I had my bilateral mastectomy 5 years ago. I had the immediate reconstruction with expanders, and implants to replace them a couple of months later. I do wish I had waited. It was quite painful. The thing I remember the most was the nerve pain running down each side – from my underarms to my waist. I couldn’t stand to have anything touch me. So daughter found some knit thingamajigs – serapes? – that didn’t have any sides and that’s what I wore for several months. Of course, I didn’t go anywhere dressed like that. Bras were out of the question for several months after, until I found some that didn’t have any side seams. The pillows were a must have. What I am dealing with now, is back pain – right between my shoulder blades – and I am wondering if the implants and their weight are the cause. I will seek the opinion of a breast surgeon, since nothing I have tried helps. If it is the cause, I will opt to have them removed. Your article is so right on! Wish I had read it before my surgery. I hope you are all better now and able to do all you want to do!
Amen Sister!!
I had my bilateral mastectecomy in April and while physically I am feeling fine, emotionally
I am not. Lots of women seem to rally on but it has been a struggle for me. God bless us all.
This information was great and helped me not to be so nervous. Happy your recovering. I will be seeing my Surgeon tomorrow regarding to have a double mastectomy. God bless you.
Thank so much for sharing your journey, I am having a single Mastectomy in 2 weeks and I feel less anxious after reading all your stories. I was diagnosed in December HER/2 Neg/Positive Estrogen. I now feel inspired and mentally prepared for this!!!! Thank you ladies again for sharing, and I hope everyone is well and I wish you all the best.
Thank so much for sharing your journey, I am having a single Mastectomy in 2 weeks and I feel less anxious after reading all your stories. I was diagnosed in December HER/2 Neg/Positive Estrogen. I now feel inspired and mentally prepared for this!!!! Thank you ladies again for sharing, and I hope everyone is well and I wish you all the best.
My surgeon was a bit genius. I woke up wrapped in wide flesh colored stretchy bandages. Dr had squeezed the drain bulbs do they’d work right, then ticked them into the bandaging – right where my girls used to be. They were small, but they were lumps!
I also had a special pink heart shaped pillow made by a local church that they donated to our cancer group for breast cancer patients. I could sleep partially on a side with the heart pillow tucked in place.
Hello,
I am scheduled for double mastectomy two weeks from today… I am scared, but find your blog very helpful. Was diagnosed resently …with absolutely no family history…naver thought ME…oh well…but getting ready for the big change… reading your blog and comments by everyone is giving me strength.
THANK YOU….
I love your blog and all the time you took to share valuable information. I did a nipple sparing procedure when my daughter demanded I undergo prophylactic double mastectomy with reconstruction. She was terrified of losing me after being tested positive for a Breast cancer gene, mostly because not only did I have three generations of paternal breast cancer (lost my great grandmother and grandmother) but the ages got younger 😲. Great GM was 60 when she was dx, GM was 50 and my mother, a TWO time survivor 🤩was 47😥😫. With nipple sparing you will get instruction to only wear lose clothing, and no hot or cold on the breast area, so the new blood flow will be free to work through new and longer pathways to the nipples or risk the nipples going necrotic…DYING 😲😔 I was terrified when they scabbed! I was told that was normal and I followed all my doctors orders…THIS is a ONE TIME shot 😯😓 all went well this far😎 I am going on my 5th week of healing and FINALLY feeling some relief. Leslie is SO right! My electric recliner was a God send!I slept in that thing for two, nearly three weeks because even with a wedge, it was difficult/painful getting out of bed 😭 This surgery is the toughest surgery I’ve ever had! And I’ve had 5 children, 4 by Caesarean, a Hysterectomy and a tonsillectomy…This by far takes the cake! After my final surgery I am going to pay it forward by giving away my three snap front shirts with pockets for holding my tubes, my special mastectomy LIFE SAVER pillow and whatever else I have that helped my through this life changing/life SAVING procedure. Let’s not forget, there is a huge loss to our bodies when we make this choice, among them are: we will never again fill our boobs, and nipples… if you were lucky enough to have them spared, scars where there once was none, just to mention a few 😢 among my favorite gifts were a pink jersey that says “Yes my boobs are fake, my real ones tried to kill me!” Peace
Hi Ladies,
Having double masectomy on August 29th, 2019. Getting over leg infection first. Daughter here to help me as long as needed. Love everything you have said. Thank you. Getting a few items you suggest.
I am 72 and no reconstruction going to happen. Wish me luck. I am a very strong woman but this is a life changer. Going to do all that I want to do after I am finished radiation and anything else that gets thrown at me!! I will survive!!!
So it’s been 12 weeks since I’ve had my double mastectomy. I still have some scabbing due to the glue that’s over them. When I sleep in my recliner I have no problems sleeping if I go to bed I always wake up aching all over feeling like I have a fever with chills has anyone else experienced this it’s happened over and over as I try to go to bed
Thank you All for sharing. My wife was been recently diagnosed with triple positive breast cancer and is just under fourth. Being the information gathering stage is hard and I’m trying to get some handle on what I can do to make it all easier her. Your responses are helping me to take a breath!
Hope your wife is doing well! This is also such a hard journey for the husband. My husband suffered so much seeing me go though all of this. I pray to all of you!
I was diagnosed with grade 3 infiltrating duct carcinoma of the left breast last October. I am ER+ and PR+ and Her2-. Since my diagnosis, I have been researching and reading everything I can get my hands on! This blog has been one of the most helpful informational reads, by far! My mastectomy and beginning reconstructive surgery is in two weeks. I am pretty well prepared with all of the details, although I am dreading being uncomfortable and inconvenienced post surgery. Fortunately, I am filled with shalom peace because of my strong faith. I know God has already given me victory over this disease! Faith also requires knowledge because knowledge is strength too! Thank you for sharing your experience and wisdom! Much love!
This is truly helpful and the only thing for me is that am sad I found your page a year after my surgery. This would have help so much so thank you for sharing!
I had my double mastectomy on 1/31/20 . Was not able to have nipple sparing because the cancer in my right boob was to close. I did have the skin sparing in prep for reconstruction . Since then the skin has broke down 3 times and I have managed to contract an infection and each time I have to go in and the skin has to get cut away. I’m scheduled for surgery again 3/16/20. Now the doctor wants to take a muscle from my back that has its own blood supply . Wondering if anyone else has heard of this?
Thank you for the post, tips and for the comments, it’s really helping me getting through all this right now and so I’ll share my experience… I’m 33 and I was diagnosed with breast cancer last august and went to a double mastectomy with immediate reconstruction last week (3/6/20). For me the worst part are the drain bulbs (hopefully they are removing them on 4 days), even with the apron (which is a must) the mobility is uncomfortable and limited. I have a very thin pale and irritable skin (I’m ginger-blonde) so all the skin zones with dressings and adhesive tapes just burns and it’s very VERY uncomfortable. For the shower they gave me clinical sponges with soap at the hospital so while I hold up the drain bulbs my husband help me get washed. I have no problem to wash my hair because I have had 6 month of chemo before so I don’t have any (it has just started to grow again). I wear a sports bra 24/7 as instructed by my surgeon and the recliner is my new BFF. I can’t literally lie down completely right now, it hurts so much. (Even if for the the pain they have prescribed me antibiotics and tylenol every 8 hours.) Despite all of this I’m fine. The chemo is over and the surgery too so I glimpse the end of a difficult stage in my life… wish me luck!! Have faith and courage. We can!!! LOVE
I’m scheduled for 2weeks from today. I’ve known for awhile and have been lackisadical and sarcastic about it, but when the doctor called today to confirm the surgery, my brain said okay smart ass it’s real now. With the quarantine, I had to cancel my tata party which is disappointing.
But I know this is the best decision for my health. Logic tells me this is right. But now it’s real.
Thank you for the advice. Must appreciated.
Preventative Double Mastectomies coming up on Tuesday, July 14th. I’m ready to just get it done. I think my mindset is good and I know I’m doing the right thing. Bought button down pjs, gonna order the mesh belt and I have a pillow on its way. Not sure what size sports bra to buy bc I have no clue how big the expanders will be at first?!?! Any recommendations on that? I’m a very small A now and will likely be a small C once it’s all said and done. Thank you Leslie for giving all of us the assurance that it all works out great in the end!! It’s worth it!
Fantastic list. Agree with absolutely everything. Someone sent me two things that literally saved me. The first, this pillow: https://www.amazon.com/Leachco-Pregnancy-Maternity-Contoured-Pillow/ made sleeping a possibility. Yes, it’s huge, but I used it each time I had any refinement surgery and now my son has claimed it. The second was this reacher: https://www.amazon.com/X-Long-Flex-Cable-Pick-Up-4-Finger-Retriever/
Made it easier to grab things that we slightly far away. Also recommend this eye mask from Heaven – NodPod. Helped in the hospital and home. The weight and the eye/ear coverage truly helped. Good luck to anyone going through the process. Be brave. You are taking the reins. It gets easier each day. Leslie, you’re amazing!
This is so helpful! I am trying to work out how to help a friend and this is the best advice, and very practical.
Just stumbled upon this site! So good to know I’m not alone! I had bilateral mastectomy 2.5 weeks ago and expanders put in place for implants. The pain is unbelievable even with painkillers ! 😬. Looking forward to feeling better, I must learn to be patient!!!
This covers all the necessities. Great article. I went through a bilateral mastectomy in 2016. I found Shower Pockets Drain Bulb Holders for showering after surgery so incredibly helpful. (https://www.amazon.com/Shower-Pockets-Holder-Mastectomy-Surgery/dp/B07WJZZKLY) I gift this to every woman that comes to me for help or questions.
I love your last tip of relaxing and letting your body heal. Such great advice. Wishing anyone that has to go through this or has already gone through this, all the best for a healthy, happy survivorship!
Hi, a great read, thank you.
I’m 42 and 6 days after my double modified radical mastectomy. Due to covid I also lost my job so I haven’t been able to buy anything to assist in recovery so a cheap trick for my drains (3) was to have a small hessian shopping bag. I’m a single mum with a 3 year old and 2 very large dogs and I found this stopped her trying to grab at them and the dogs from being too excited. It cost me nothing as already had and when I pop to the shop I always have a bag he he
Stay strong ladies and best of luck to everyone xx
Thank you for this post—was super helpful prepping for my double masectomy two weeks ago!!
The only thing I would add to the hygiene list is that it’s tough to clean yourself after using bathroom too— both 1 and 2 couldn’t bend or twist to wipe😧 Peri bottle and / or flushable wipes and tongs (I used peri bottle mostly) are life savers! My mom was helping me shower up until yesterday (day 11 showered myself woo!) but felt next level to ask her to also WIPE ME. Hahah Get a Peri bottle pre-surgery!
Hi there – I’m 60, two weeks post prophylactic double mastectomy. Good tips above. I recommend investigating whether anyone is doing same-day (outpatient) removal and reconstruction in your area. Adam Riker at Anne Arundel Med Ctr in Maryland is a pioneer in this. No hospital stay, only three hours (total) for both procedures (I had implants). Less risk, faster recovery.
Also, double check all of the above tips & experiences with your doc. Mine was very different on a number of points (ie, I was told not to shave any part of the body beginning a week prior to avoid infection risk, to shower daily, only take motrin and Tylenol, etc).
I had no trouble raising my arms post surgery, no trouble getting in and out of bed. I slept in a recliner the first night – was very glad to have it!
Hi I was just diagnosed last week with breast cancer @ Baptist Breast in Little Rock. My journey is just beginning… I was wondering If you could tell me what general surgeon you used in Little Rock as well as reconstruction surgeon.
My breast surgeon was Dr. Daniela Ochoa from UAMS and plastic surgeon Dr. Eric Wright from UAMS who I believe is now in private practice.
Thank you for this beautiful post. I don’t have the surgery scheduled yet and I’ve been slammed with work and not doing proper research. The list is so helpful as well as all the comments. Thank you and all the posters here for sharing! Best wishes to you!
I never took into account the fact that it will be difficult to lift your upper body even one week after the surgery, such as getting out of bed just why you might need someone to help you out. I will share this information who is my best friend show that you will be ready for the things that she has to expect when she goes under the knife. It’s because she has decided to finally go through the surgery after gathering courage for a couple of weeks, and I hope that I can show my support by looking for post-mastectomy contacts that I can give her to make her life easier once she is going through the recovery phase.