Bilateral Mastectomy without Reconstruction Recovery Timeline

Posted by sheilaray @sheilaray, Sep 24 2:40pm

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.

I know there are a few people here that had bilateral and didn’t get the reconstruction immediately. When is your surgery?

REPLY
@auntieoakley

I know there are a few people here that had bilateral and didn’t get the reconstruction immediately. When is your surgery?

Jump to this post

Thank you, Chris. I haven’t scheduled the surgery yet. I anticipate it’ll be in the next couple weeks.

REPLY

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.

REPLY

Hi – sorry for your reoccurrence of cancer. I underwent a double mastectomy in Sept 2019 – cancer in both breasts and lymph node involvement. Knew going in if that was the case, would postpone reconstruction because of believed need for radiation. Month later found out I was stage 4 so no need for radiation. Yes – recovering from the surgery was a bit easier without the reconstruction of any type. Did spend the night in the hospital b/c of extensive involvement but next day walking outside and kept that up thereafter. Drains a pain – got colorful ribbon with safety pins or tied to hold bags in place. Special shirts were okay. Back to work in 3/4 days. Weaned myself off heavy duty meds during day – only took at night to help sleep – helped to elevate myself. I need a nerve blocker the most. Drank lots of liquids and kept foods healthy. I had drains in a bit longer than the normal 1-2 weeks, again b/c of extensive involvement. Also insist that they give you waterproof bandages so you can shower at home ASAP (some people say saran wrap but I was happier cutting out fresh covers). That made me feel better immediately. You have to keep a record of your drainage amounts. Make sure you do your therapy exercises to get full range of motion. Yoga and swimming allowed me full motion but I do have some missing upper arm skin feeling and some lymphoedema in my arm. Fast forward to December 2020, Verzenio and Armidex have me stabilized and I started the reconstruction process with expanders. Uncomfortable for a longer period of time, drains again but manageable. Did on a Friday so only missed work that day. Cancer came back in early May, got expanders out and elected to not do any of my own tissue filling etc. 18 months of no reconstruction suited me just fine and I got very used to no breasts or just putting on a bra with inserts. But my husband and friends thought I was too young at 57 and would question it later. I will say I am very glad to have down the reconstruction surgery – it does not cost you more as insurance is mandated to cover it. Good luck with it all – if you need more specifics don't hesitate to reach back.

REPLY

@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.

REPLY

Thank you @keepmoving2 , and @sequoia for your stories. That is so meaningful.

REPLY

I had both breasts removed with no plans for reconstruction, in 2015 (still flat). I was in the hospital for one night. Recovery wasn't too bad or too long. One recommendation: you can get a paravertebral block before the surgery. This blocks pain for the first few days and greatly reduces the need for pain meds (which make me nauseous).

REPLY
@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.

Jump to this post

Thank you for sharing, Sandy.

REPLY
@windyshores

I had both breasts removed with no plans for reconstruction, in 2015 (still flat). I was in the hospital for one night. Recovery wasn't too bad or too long. One recommendation: you can get a paravertebral block before the surgery. This blocks pain for the first few days and greatly reduces the need for pain meds (which make me nauseous).

Jump to this post

Thank you! I appreciate hearing your experience.

REPLY
@keepmoving2

Hi – sorry for your reoccurrence of cancer. I underwent a double mastectomy in Sept 2019 – cancer in both breasts and lymph node involvement. Knew going in if that was the case, would postpone reconstruction because of believed need for radiation. Month later found out I was stage 4 so no need for radiation. Yes – recovering from the surgery was a bit easier without the reconstruction of any type. Did spend the night in the hospital b/c of extensive involvement but next day walking outside and kept that up thereafter. Drains a pain – got colorful ribbon with safety pins or tied to hold bags in place. Special shirts were okay. Back to work in 3/4 days. Weaned myself off heavy duty meds during day – only took at night to help sleep – helped to elevate myself. I need a nerve blocker the most. Drank lots of liquids and kept foods healthy. I had drains in a bit longer than the normal 1-2 weeks, again b/c of extensive involvement. Also insist that they give you waterproof bandages so you can shower at home ASAP (some people say saran wrap but I was happier cutting out fresh covers). That made me feel better immediately. You have to keep a record of your drainage amounts. Make sure you do your therapy exercises to get full range of motion. Yoga and swimming allowed me full motion but I do have some missing upper arm skin feeling and some lymphoedema in my arm. Fast forward to December 2020, Verzenio and Armidex have me stabilized and I started the reconstruction process with expanders. Uncomfortable for a longer period of time, drains again but manageable. Did on a Friday so only missed work that day. Cancer came back in early May, got expanders out and elected to not do any of my own tissue filling etc. 18 months of no reconstruction suited me just fine and I got very used to no breasts or just putting on a bra with inserts. But my husband and friends thought I was too young at 57 and would question it later. I will say I am very glad to have down the reconstruction surgery – it does not cost you more as insurance is mandated to cover it. Good luck with it all – if you need more specifics don't hesitate to reach back.

Jump to this post

Thank you. I wish you well with your latest recurrence. Are you in treatment again now?

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment