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.

I had a double mastectomy in 2004 at the age of 50 with no reconstruction. Recovery was pretty quick and I was ready to take walks and begin slowly to get more active before too long. The drains were the most annoying part of recovery but not that bad and they are taken out within a couple of weeks. Agree with the responses that recommend getting your arms moving as soon as your doctor says it's OK.
I wore prosthesis while I worked but have gotten used to wearing nothing and love the comfort of no bra. There are lots of us "flat" women out there to connect with online. Everybody is different so do what feels best to you. For me personally, I never have regretted no reconstruction.

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@annie65

I had a double mastectomy in 2004 at the age of 50 with no reconstruction. Recovery was pretty quick and I was ready to take walks and begin slowly to get more active before too long. The drains were the most annoying part of recovery but not that bad and they are taken out within a couple of weeks. Agree with the responses that recommend getting your arms moving as soon as your doctor says it's OK.
I wore prosthesis while I worked but have gotten used to wearing nothing and love the comfort of no bra. There are lots of us "flat" women out there to connect with online. Everybody is different so do what feels best to you. For me personally, I never have regretted no reconstruction.

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Thanks for your meaningful story, I begged my doctor for this all those years ago. I fell into that time when they had just discovered that lumpectomies provided the same outcomes or at least that is what he believed to be best for me and refused. When I hear your story, I sometimes dream that I have that simpler life now, lol.

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@annie65

I had a double mastectomy in 2004 at the age of 50 with no reconstruction. Recovery was pretty quick and I was ready to take walks and begin slowly to get more active before too long. The drains were the most annoying part of recovery but not that bad and they are taken out within a couple of weeks. Agree with the responses that recommend getting your arms moving as soon as your doctor says it's OK.
I wore prosthesis while I worked but have gotten used to wearing nothing and love the comfort of no bra. There are lots of us "flat" women out there to connect with online. Everybody is different so do what feels best to you. For me personally, I never have regretted no reconstruction.

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Annie, thank you for sharing. I'm encouraged by everyone being so helpful!

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I agree about no reconstruction. Unfortunately, I had silicone implants which ruptured, spilling silicone throughout my body which caused a myriad of health issues. I was in the Dow Corning Settlement. I had them removed and have struggled a long time, but I am finally getting a hold on better health. I also wear no bras except for very special occasions.

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@sandyjr

This does not really answer your inquiry, but…..I had bilateral mastectomy with diep reconstruction last summer (2020). That was pretty lengthy surgery. It was a piece of cake. I had very little pain. It took the wind out of me and I was moving around pretty slowly, but was back up to speed in about a month. I was very careful about moving my arms and I protected my stomach area where the tissue was harvested from. My experience was no pain and tiredness probably because of the extent of the surgery. I did get up and move around while in the hospital and when I got home. I get tired of laying around. I got up and walked around outside of my house…just kept moving. Take it easy and follow the doctor’s instructions and you should be recovered in a month or so. You will be fine and I wish you the best.

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Hello, I have a question. Did u take anti-hormones (exp tamoxifen) following your bilateral mastectomy?

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@charbelghafari

Hello, I have a question. Did u take anti-hormones (exp tamoxifen) following your bilateral mastectomy?

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Yes. I am taking anastrozole. I started taking it in 2018 after lumpectomy for IDC.

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Please help me. My doctors will not answer my questions. I even had a group of doctors escort me out of their clinic and told not to come back. For asking too many questions. I am the most polite person. Can they do this? I ended up in the E.R. after fainting in their lobby.
My question is: I’ve had 4 breast biopsies in 20 years. LCIS, ADH, FEA, and now DCIS. Tamoxifen 5 years. Raloxifene 7 years. Osteoporosis. Some Heart blockages. Mitral valve prolapse. Complete hysterectomy at age 43. I want a double mastectomy . Maybe No reconstruction. I’ve seen 4 surgeons. They all want to do lumpectomy, radiation, AI again. Can someone tell me if a mastectomy is as horrible as they are telling me? They say I will have more side effects. I’m 60 and active. They said I will have to give up sports. Tennis, pickleball, Newcomb.
I need advice from real women who have been through it.
I want to be done with this breast business.
Thank you

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@lindalm

Choosing to go flat or to get reconstruction is such a personal decision – no right or wrong. I had a mastectomy last year, decided to go flat. NO regrets! My surgeon discouraged me 3 times, saying that women are psychologically much happier with reconstruction and are unhappy with going flat. That was his medical experience speaking but after reviewing all reconstruction options, I was quite sure going flat was best for me.

It wasn’t easy to ask, but I got another surgeon who listened, understood and believed me. I showed her pictures of good and of really bad surgical results for women going flat. I was clear in letting her know I wanted a smooth scar with no puckering, “dog ears”, etc. My goal was to be able, for a lifetime, to easily examine that side of my chest. Happily, my surgeon did exactly as I asked. My scar is smooth and I can easily do my self-exam.

It helped me to visualize what going flat may look like. Here are a couple of websites that show women who decided to go flat. These are good results. There are websites with pictures of poor results too. https://www.flatandfabulous.org and https://www.thebreastandthesea.com

Best of all luck to you!

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Linlam
I am crying with happiness that I found your post. I can’t find any docs to help me with flat beautiful busy surgery.
I am done with frequent lumpectomies and stress and want to move on. All I get are nightmarish stories of side effects and concave scarring. Your links won’t work for me. Are there any other sites you recommend with images? Information?
Thank you.

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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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@keiracancer

I am a 54 yr old female considering a Total Mastectomy without any breast reconstruction. Divorced for 10 years and have not pursued men since the divorce. That Sexual phase of my life is over. I have been Ccup-busty since 5th grade…DD cup by 8th grade. Has anyone reading this been thru this and feel good in their flat chest? Or did you look back and regret your decision? I see no purpose for them in my life any longer. Thanks for any reflective feedback.

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Hello- you are younger than I was when I had a double mastectomy and chose, after much discussion with my husband, not to reconstruct. I knew I could choose to do it later, but two more surgeries and all that recovery time never sounded good to me. I can be very comfortable and look very normal with the cosmetic help that is available. I was pretty well healed in a few months. The decision is controversial and many friends will not understand. My friends were wonderful through treatment, but I decided to keep this decision private.

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