Bilateral Mastectomy without Reconstruction Recovery Timeline

Posted by sheilaray @sheilaray, Sep 24, 2021

I'm going to be having a bilateral mastectomy without reconstruction and I'd love to hear from others who have gone through this about your recovery time. How long were you in the hospital? What could you do when you went home? How realistic is it to do desk work for limited times after going home?

My background, I had invasive adenocarcinoma of the left breast in 1997 with lumpectomy, lymph node involvement, chemo, radiation and tamoxifen. I've been in remission since then. I'm now diagnosed with invasive ductal carcinoma of the left breast and will not know if I need further treatment until after the mastectomy.

Thank you for sharing your experiences.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@bcwarrior

toomanyquestions I did not read all the posts in this thread as they're very dated. I am here for any questions I may be able to help with. You are not alone. My short is ER/PR positive stage 1 - 2007 lumpectomy. Had the complete package of chemo, radiation, and 10 years of Arimidex. Fought my insurance after 10 years for screening only mammo and had 2 before Yep, it was back. I wish I had had the double back then. This time I had no questions about bye-bye girls on 05/25/2022. If I understand you are looking for images that you most likely won't find. I suggest you work with your breast surgeon aka general surgeon along with a plastic surgeon that will provide your goal of a beautiful flat chest. I hate to say that insurance may not cover most of the work that needs to be done to achieve this goal without multiple surgeries. I am just now getting my strength back without reconstruction. I'm living with keloids, numbness, swelling, and 2 ugly scars since both incisions healed differently. While surfing the net I did find a young woman 30+/- that had navy blue surfer shorts on at a beach playing frisbee. No top and free for the world to see. However, I find it hard for a person to expect such a thing unless they've had multiple surgeries and years of healing. Hope I'm wrong!!!

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Hi @bcwarrior -- I hope I haven't responded to you before. I was just searching keloids and see you have them. I had bad keloids after my double mastectomy in 2013 that were not only unsightly, but very painful all the time. My dermatologist talked me into kenalog injections directly into the scars. I did up to 15 at a time about every 6 weeks, then 3 months then 6 months until the pain didn't come back. It really flattened out the scars, turned what was left pink instead of red. I rarely get pains in them now. The injections smarted to be sure, but so worth it. The pains I was getting every hour for 2.5 years before that were level 10 that would wake me up or stop me in my tracks when awake. Hopefully, your keloids are not causing pain. Zebra

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Great family @gina5009. I give you the credit for staying in the game. You did all the work.

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@gina5009

Like you, I never think to do the massage. Thank you for all your kind thoughts. I am so sorry your little dog had to endure and attack by such a large dog. This must have been very difficult for you. I have many reasons to be greatful to God. It seems like I have been trying to leave this life for many years. I had Whooping cough at 8 months and double Pneumonia at 18 months. No antibiotics, nothing to treat this illness (1932). The doctor told my monther I would be dead by morning. Good old gradma was not about to accept this. She called her doctor who told her to pack me in ice. If she could keep my temp down until morning, I might have a chance. As you can see, I am still here. God just decided it was not my time, and threw me back. He has been doing that all my life to date. So if it takes another new part, or med, or whatever, I am first in line and I will be here for as long as God decides it should be that way.
Gina5009

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Gina5009, sorry to hear about your rough start in life. Way to go Grandma!!! She's a hero. Now we have something else in common. When I was growing up, I always had these crazy high fevers with even mild illnesses. So did my son. When I was 3 (1962), I had a kidney infection and my fever was 105/106 for a week. (My funny brother always joked that that explains a lot.) I was in the hospital for a week. They couldn't break the fever. I was constantly being packed in ice and receiving penicillin shots. My mother told me I was hallucinating spiders and lions in my hospital room and she ran to wherever I pointed and fake smashed them to bring me peace. Finally, the doctor said they were giving me an experimental medicine (widely accepted today) that would either cure me or kill me. I'm still here! Events in the hospital and seeing my mother cry when the doctor was talking to her are my earliest memories. I remember my brothers smashing their faces against the hospital window trying to make me laugh. Finally, I remember coming home and running to the cookie jar (a sweet tooth trumps all) and the Christmas cookies were all gone. That was the most devastating of all. 🙂 I'm sure Mom made me more.

I'm glad God keeps throwing us back in the game. He must still have plans for us here since we've been allowed to stay.

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@californiazebra

Thank you for the response @gina5009. Very nice that your son moved in with you. You raised him right. Relax and enjoy his help and company. At 92, you deserve to be spoiled!

Ouch with the shoulder. It must be a right of passage. I fell and broke my right wrist while I was recovering from the mastectomy and ovary/tube removal double whammy surgery. My 20 pound schnauzer totally fought off that 45 pound dog attacking in the dark. I should have stayed out of it cause I'm the only one that got hurt. With my right hand/arm now in a cast, that's when I learned my left hand and arm are just for looks and balance. Haha

My lymphedema isn't bad anymore, just the tightness and ROM issues. They never suggested diuretics. It mostly flares up if I do heavy house cleaning and overuse that arm. I'm supposed to do the daily lymphedema massage at home myself. But do I? Guess. It all flared up again when I had recurrent breast cancer removed my from chest wall and another lymph node.

I had to look up your TN and MGus. Neither sounds fun! I have HNPP (hereditary neuropathy and pressure palsies) and am one of the more extreme cases. Like you, I have a substantial collection of varied disorders. My brother once told me I should just get a body transplant. Sign me up!!! I hope you don't need any more new parts and just have lots of new joys!

When my great aunt hit 90, she was featured in Woman's Day magazine along with others in their 90s. It was one of those articles asking what they did to live a long, healthy life. I think a positive attitude, helping others and staying active for her. They should be honoring you too for powering through! You're like my little schnauzer who never let the big dogs take her down. It was all about attitude. She survived hemorrhaging at 3, mammary cancer at 10 and lived to be 16! She loved life and had a will to live. She was the love of my life! Keep enjoying those bright days!

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Like you, I never think to do the massage. Thank you for all your kind thoughts. I am so sorry your little dog had to endure and attack by such a large dog. This must have been very difficult for you. I have many reasons to be greatful to God. It seems like I have been trying to leave this life for many years. I had Whooping cough at 8 months and double Pneumonia at 18 months. No antibiotics, nothing to treat this illness (1932). The doctor told my monther I would be dead by morning. Good old gradma was not about to accept this. She called her doctor who told her to pack me in ice. If she could keep my temp down until morning, I might have a chance. As you can see, I am still here. God just decided it was not my time, and threw me back. He has been doing that all my life to date. So if it takes another new part, or med, or whatever, I am first in line and I will be here for as long as God decides it should be that way.
Gina5009

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Great laugh for today.....you are right flat chested women do not have to worry about getting hit in the face or that wonderful boob sweat. And so much for me loosing like 20 lbs with my double mastectomy - just not fair that the scale barely registered my loss. I was surprisingly fine with my flat chest - scars were minimal and just not scary. I feel like I can appreciate either side of the coin - and interestly I was only 1 of 2 women that my reconstructive doc did a "smaller" replacement chest on.

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@keepmoving2

Hi - jumping in here and replying to a couple of topics. I had a bilateral mastectomy back in Sept. 2019 with lobular in right breast, and ductal and lobular in the other. I had hoped to start the reconstructive process during that surgery but since I had most of my lymph nodes removed, reconstruction was delayed with the expectation of chemo & radiation. I developed a "dog ear" or "dog tag" - it looks like a mole or pimple in my case. It was at the very start of the incision on my back and was explained to me that it was not unusual and it was as a result of the start of an incision healing itself - back fat, muscle softness, etc really were not the causes. Yes drains are a hassle. You can find shirts on Amazon with pouches but I found a ribbon with 2 safety pins worked great and I could take showers. I ended up never doing radiation (and no chemo at that time) because my cancer was found in my skin so I was bumped to Metastatic - so glad I didn't cut my hair short, etc. I worked very hard to regain complete arm movement and strength, and to keep lymphoedema at bay with swimming (I hate), starting yoga and lifting weights. My surgeon was very adamant about the swimming as it works the muscles while the water provides gentle compression. I also bought compression sleeves which I still use, especially when flying. As for bras, I tried a few mastectomy bras with a proper insert. Personally couldn't stand them as I am very athletic. I ended with some great Hanes bras and various athletic bras that I took out their padded inserts, and slipping in a silicon or gel insert that normal flat chested gals use - loved them because they would worn up to my body temp and different shift. When I started my reconstruction in Dec 2020, I was told that they could take care of the "dog Ear". In fact they did, but I developed another dog tag on the other side after that surgery which we didn't deal because we rushed in May 2021 to finish the process as my cancer returned. Fast forward to now, I am very happy to have done my reconstruction even with my "reminder". We didn't make nipples - might get them tattooed. Kinda fun that I don't need to wear a bra. Most important - major kudos to those warrior gals who handled their breast cancer in the many years before now. Identification, treatments, surgery, clothing, health etc has advanced so far because of you and your loved ones advocating for everything to be better. Just Keep Moving everyone every single day!!

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I do wear a compression sleeve when flying. Good info on the Hanes and athletic bras. They sound more comfortable. Glad you're doing well. I loved your comment that you don't need to wear a bra now. Going flat has it's advantages too. Not only no bra, but no boob bounce or sweat when exercising. Thanks for sharing.

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Hi - jumping in here and replying to a couple of topics. I had a bilateral mastectomy back in Sept. 2019 with lobular in right breast, and ductal and lobular in the other. I had hoped to start the reconstructive process during that surgery but since I had most of my lymph nodes removed, reconstruction was delayed with the expectation of chemo & radiation. I developed a "dog ear" or "dog tag" - it looks like a mole or pimple in my case. It was at the very start of the incision on my back and was explained to me that it was not unusual and it was as a result of the start of an incision healing itself - back fat, muscle softness, etc really were not the causes. Yes drains are a hassle. You can find shirts on Amazon with pouches but I found a ribbon with 2 safety pins worked great and I could take showers. I ended up never doing radiation (and no chemo at that time) because my cancer was found in my skin so I was bumped to Metastatic - so glad I didn't cut my hair short, etc. I worked very hard to regain complete arm movement and strength, and to keep lymphoedema at bay with swimming (I hate), starting yoga and lifting weights. My surgeon was very adamant about the swimming as it works the muscles while the water provides gentle compression. I also bought compression sleeves which I still use, especially when flying. As for bras, I tried a few mastectomy bras with a proper insert. Personally couldn't stand them as I am very athletic. I ended with some great Hanes bras and various athletic bras that I took out their padded inserts, and slipping in a silicon or gel insert that normal flat chested gals use - loved them because they would worn up to my body temp and different shift. When I started my reconstruction in Dec 2020, I was told that they could take care of the "dog Ear". In fact they did, but I developed another dog tag on the other side after that surgery which we didn't deal because we rushed in May 2021 to finish the process as my cancer returned. Fast forward to now, I am very happy to have done my reconstruction even with my "reminder". We didn't make nipples - might get them tattooed. Kinda fun that I don't need to wear a bra. Most important - major kudos to those warrior gals who handled their breast cancer in the many years before now. Identification, treatments, surgery, clothing, health etc has advanced so far because of you and your loved ones advocating for everything to be better. Just Keep Moving everyone every single day!!

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I had double mastectomy last year (no reconstruction) and I have to say I didn’t hurt at all. I was shocked how there just wasn’t pain. It seems like it would be painful, but it’s such a superficial surgery that the pain just isn’t there. Drains were the most annoying part of it. They come out about 1-2 weeks after surgery. I felt good the day after surgery. I spent one night in hospital. You can definitely do some desk work no problem a few days from surgery. I stayed really hydrated, went for walks, ate lots of vegetables, took collagen tablets, and got great sleep and I had a great recovery. And side note: I absolutely love that I “went flat”, no regrets whatsoever. Praying for you!

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@gina5009

I am really surprised to hear of your arm difficulty. I never had a bit of trouble following my simple mastectomy, and only had trouble with that arm after I fell and broke the head of the shoulder joint in three places. I now have an artificle shoulder replacement. The only time I seem to have any edema is when I have blood draws. They have to use this arm, because the left mastectomy is off limits. When I had the Valve replacement they also had to use this arm, but very little after event even though they had to enter an artery in my wrist. Much easier then the groin. Interesting you have a nerve disorder. After all these years, I have Trigeminal Neuralgia. That is how they found the MGus. Routine testing. I have pretty much quit driving. My son has moved in to my home, and he takes me to all my appointments. I have gotten very lazy. I can still drive and have a license (eye sight is quite good), but I think it is smart not to drive unless I really, really need to. I do take high blood pressure medication which has a diuretic. My ankle swells considerably since I had the cancer removed from my leg, but I also have the hip and knee surgery and you cannot have that much surgery all on one side without some disruption of the circulatory system. The diuretic keeps the swelling down considerably. Have they tried any diuretics for your edema? Your kind words and good thoughts will brighten my day, and I look forward to my next "New Part".
Gind5009

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Thank you for the response @gina5009. Very nice that your son moved in with you. You raised him right. Relax and enjoy his help and company. At 92, you deserve to be spoiled!

Ouch with the shoulder. It must be a right of passage. I fell and broke my right wrist while I was recovering from the mastectomy and ovary/tube removal double whammy surgery. My 20 pound schnauzer totally fought off that 45 pound dog attacking in the dark. I should have stayed out of it cause I'm the only one that got hurt. With my right hand/arm now in a cast, that's when I learned my left hand and arm are just for looks and balance. Haha

My lymphedema isn't bad anymore, just the tightness and ROM issues. They never suggested diuretics. It mostly flares up if I do heavy house cleaning and overuse that arm. I'm supposed to do the daily lymphedema massage at home myself. But do I? Guess. It all flared up again when I had recurrent breast cancer removed my from chest wall and another lymph node.

I had to look up your TN and MGus. Neither sounds fun! I have HNPP (hereditary neuropathy and pressure palsies) and am one of the more extreme cases. Like you, I have a substantial collection of varied disorders. My brother once told me I should just get a body transplant. Sign me up!!! I hope you don't need any more new parts and just have lots of new joys!

When my great aunt hit 90, she was featured in Woman's Day magazine along with others in their 90s. It was one of those articles asking what they did to live a long, healthy life. I think a positive attitude, helping others and staying active for her. They should be honoring you too for powering through! You're like my little schnauzer who never let the big dogs take her down. It was all about attitude. She survived hemorrhaging at 3, mammary cancer at 10 and lived to be 16! She loved life and had a will to live. She was the love of my life! Keep enjoying those bright days!

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@californiazebra

@gina5009 thanks for sharing your amazing survival/success story. You are like the bionic woman now with all those replacement parts. So glad you're still with us and enjoying life. My great aunt had uterine cancer in her 30s, had controversial cobalt treatment at the time, and then went on to live a wonderful healthy life to 93. I'm glad they don't do radical mastectomies anymore. Sorry you lost use of your arm for a year. My cousin had a single mastectomy, and like you, had issues with symmetry after that. She told me she advises people either none or both. The lady that fitted me for prostheses said even with reconstruction symmetry is an issue with a single mastectomy.

My double mastectomy was 10 years ago and I lost a lot of range of motion (ROM). I've never been past 85% since, but it's good enough for daily living. Initially, my arms froze a little more each day until about five days after surgery I couldn't move my elbows away from my side. It scared me. It was challenging driving to my appointments or anything else. I've had 2-3 months of PT on three occasions over the years to regain ROM and reduce swelling and tightness (lymphedema). I still have pain issues, but I have a nerve disorder so that is no doubt the reason. Each body reacts so differently. Like you, I'm just happy to still be here. I'm already imagining what your 100th birthday celebration will be like! 🙂

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I am really surprised to hear of your arm difficulty. I never had a bit of trouble following my simple mastectomy, and only had trouble with that arm after I fell and broke the head of the shoulder joint in three places. I now have an artificle shoulder replacement. The only time I seem to have any edema is when I have blood draws. They have to use this arm, because the left mastectomy is off limits. When I had the Valve replacement they also had to use this arm, but very little after event even though they had to enter an artery in my wrist. Much easier then the groin. Interesting you have a nerve disorder. After all these years, I have Trigeminal Neuralgia. That is how they found the MGus. Routine testing. I have pretty much quit driving. My son has moved in to my home, and he takes me to all my appointments. I have gotten very lazy. I can still drive and have a license (eye sight is quite good), but I think it is smart not to drive unless I really, really need to. I do take high blood pressure medication which has a diuretic. My ankle swells considerably since I had the cancer removed from my leg, but I also have the hip and knee surgery and you cannot have that much surgery all on one side without some disruption of the circulatory system. The diuretic keeps the swelling down considerably. Have they tried any diuretics for your edema? Your kind words and good thoughts will brighten my day, and I look forward to my next "New Part".
Gind5009

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