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 | @bcwarrior | Nov 8, 2022

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!!!

toomanyquestions | @toomanyquestions | Nov 8, 2022

In reply to @lindalm "Choosing to go flat or to get reconstruction is such a personal decision – no right..." + (show)

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.

toomanyquestions | @toomanyquestions | Nov 8, 2022

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

sandyjr | @sandyjr | Sep 27, 2021

In reply to @charbelghafari "Hello, I have a question. Did u take anti-hormones (exp tamoxifen) following your bilateral mastectomy?" + (show)

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

Blox (darkangelsigning@gmail.com) | @charbelghafari | Sep 27, 2021

In reply to @sandyjr "This does not really answer your inquiry, but.....I had bilateral mastectomy with diep reconstruction last summer..." + (show)

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

basslakebabe19 | @basslakebabe19 | Sep 27, 2021

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.

sheilaray | @sheilaray | Sep 26, 2021

In reply to @annie65 "I had a double mastectomy in 2004 at the age of 50 with no reconstruction. Recovery..." + (show)

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

Chris, Volunteer Mentor | @auntieoakley | Sep 26, 2021

In reply to @annie65 "I had a double mastectomy in 2004 at the age of 50 with no reconstruction. Recovery..." + (show)

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.

annie65 | @annie65 | Sep 26, 2021

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.

sheilaray | @sheilaray | Sep 26, 2021

In reply to @sequoia "@Sheliaray, I had just one breast removed August 2019. One thing that helped me was physical..." + (show)

@sequoia

@Sheliaray, I had just one breast removed August 2019. One thing that helped me was physical therapy. I went to the therapist prior to my surgery. She took range of motion measurements, as a baseline. She discussed what therapy & exercises I may be doing depending on how I was feeling. She specializes in PT for breast cancer patients. The stars were lined up when I spoke to a gal in our local cancer services facility. She was local too - 20 minutes. My surgery went very well. I stayed in hospital over night as I was an hour away from home. My surgeon ❤️ Was great. I did not have any pain. The first night home I took a pain pill just in case but did not after that. I had one drain, & like others have said it was a nuisance but all was ok. All in all not a bad experience. 3-4 weeks later I started PT & it was such a great experience. It helped me tremendously. I did the exercises, so I gained all of my range of motion back. If I had to say recovery time , it different for each person but if o worked o could have gone back to work proving a week if not sooner. I never felt bad just ‘different’ as experiencing some new. It is so important to do the exercises to keep the muscle & tissue pliable snd moving. I thank God everyday that it went so well. I also am thankful I handled it emotionally so well. Doing the massage on the chest is important & it was difficult for me touching the scar- but little by little I handled it. Give yourself time. 🙏🏼
I did go to a plastic surgeon and he explained the procedures & options. I was going to do reconstruction, as I was under & there. Well it turned out that my surgeon and him couldn’t get a schedule together for 6 weeks. My surgeon said there weren’t any studies that showed that waiting the 6 weeks would be bad but he did not feel good about waiting. I did not feel good about it either. We went forward with surgery only. It gave me time to think about reconstruction. I really had not gave it much thought. I chose not to do reconstruction now. It’s another surgery and what they - doctors - thought was safe today as an implant may not be 3-5 years from now. Then another surgery. I was 66 yrs young and married for 44 yrs. My husband & I discussed & I opted not to do reconstruction. I’m happy w/ prosthetic & it works fine. Good decision for me.
Best of luck to you.

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Thank you for sharing this. I’m happy to hear how well you are doing!