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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.

lindalm | @lindalm | Nov 8, 2022
In reply to @toomanyquestions "Linlam I am crying with happiness that I found your post. I can’t find any docs..." + (show)
@toomanyquestions

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.

Jump to this post

Hello,
I had to ask for another surgeon at Mayo Clinic as the one assigned really felt a woman would be unhappy going flat. I was very fortunate to then get Dr. Minh-Doan Nguyen for my final surgery to go flat on one side.

I showed Dr. Nguyen pictures of "bad" surgical results and the smooth, good results that I wanted. She quickly grasped what I was asking and agreed to do the best she could and her best was really excellent. I healed quickly and now am so happy to not be worried about new tumors under or around an implant.

I checked and found that, Dr. Nguyen moved from Mayo Clinic to HealthPartners Plastic Surgery clinic in Woodbury or St. Paul, MN.

Best wishes to you!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 8, 2022
In reply to @toomanyquestions "Please help me. My doctors will not answer my questions. I even had a group of..." + (show)
@toomanyquestions

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

Jump to this post

@toomanyquestions, you'll notice that I moved your original message here to the discussion where you are connecting with others who get it.

- Bilateral Mastectomy without Reconstruction Recovery Timeline https://connect.mayoclinic.org/discussion/bilateral-mastectomy-without-reconstruction-recovery-timeline/

Have you considered getting a second opinion?

REPLY
1 reply
polianad22 | @polianad22 | Nov 8, 2022

How do you sleep after the surgery? Having my unilateral mastectomy on Monday. Any recommendations?

REPLY
toomanyquestions | @toomanyquestions | Nov 8, 2022
In reply to @colleenyoung "@toomanyquestions, you'll notice that I moved your original message here to the discussion where you are..." + (show)
@colleenyoung

@toomanyquestions, you'll notice that I moved your original message here to the discussion where you are connecting with others who get it.

- Bilateral Mastectomy without Reconstruction Recovery Timeline https://connect.mayoclinic.org/discussion/bilateral-mastectomy-without-reconstruction-recovery-timeline/

Have you considered getting a second opinion?

Jump to this post

Thank you. Yes, I saw a plastic surgeon who said, with disdain, that I was looking for a Goldilocks surgery. He doesn’t do those. My 4 other surgeon visits also proved that surgeons just don’t want to talk about mastectomy without reconstruction.

REPLY
toomanyquestions | @toomanyquestions | Nov 8, 2022
In reply to @lindalm "Hello, I had to ask for another surgeon at Mayo Clinic as the one assigned really..." + (show)
@lindalm

Hello,
I had to ask for another surgeon at Mayo Clinic as the one assigned really felt a woman would be unhappy going flat. I was very fortunate to then get Dr. Minh-Doan Nguyen for my final surgery to go flat on one side.

I showed Dr. Nguyen pictures of "bad" surgical results and the smooth, good results that I wanted. She quickly grasped what I was asking and agreed to do the best she could and her best was really excellent. I healed quickly and now am so happy to not be worried about new tumors under or around an implant.

I checked and found that, Dr. Nguyen moved from Mayo Clinic to HealthPartners Plastic Surgery clinic in Woodbury or St. Paul, MN.

Best wishes to you!

Jump to this post

Thank you for the name. I will reach out to Dr Nguyen for suggestions.

REPLY
toomanyquestions | @toomanyquestions | Nov 8, 2022
In reply to @windyshores "@toomany questions I am flat on both sides now. Recovery wasn't too bad. No concave scarring..." + (show)
@windyshores

@toomany questions I am flat on both sides now. Recovery wasn't too bad. No concave scarring r side effects. Feel fine. My only suggestion is to have a paravertebral block before surgery so you don't need pain meds.

What do you mean by not finding a surgeon to do surgery that leaves you flat?

Jump to this post

I saw 4 surgeons.
One wanted lumpectomy with radiation and AI. She would not discuss any other choice.
One said I asked too many questions and just need to choose without knowing details.
One only advocated reconstruction with saline filled implants.
One wouldn’t talk about anything until she had the imaging, a new mammogram and ultrasound at her hospital, AND the actual pathology slides which the biopsy doctor has sent to Decision RT without my permission.
I am out of surgeons.
And energy.
I am nervous about leaving the cancer growing since September. I have no choice but the lumpectomy later this week.

REPLY
1 reply
windyshores | @windyshores | Nov 8, 2022

It would be better, I think, to see an oncology surgeon, not a plastic surgeon, if you want to go flat. Maybe that is the problem: wrong kind of surgeon.

REPLY
bajalinda | @bajalinda | Nov 8, 2022
In reply to @drummergirl "Hello- you are younger than I was when I had a double mastectomy and chose, after..." + (show)
@drummergirl

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.

Jump to this post

Hello - I am newly diagnosed with DCIS and I am very happy to find this group.
Can you please provide more details about these statements: " I can be very comfortable and look very normal with the cosmetic help that is available...but I decided to keep this decision private."
Question: How can one look normal - or keep private - the flat status of one's chest after a mastectomy? I am clueless.

REPLY
2 replies
windyshores | @windyshores | Nov 9, 2022
In reply to @bajalinda "Hello - I am newly diagnosed with DCIS and I am very happy to find this..." + (show)
@bajalinda

Hello - I am newly diagnosed with DCIS and I am very happy to find this group.
Can you please provide more details about these statements: " I can be very comfortable and look very normal with the cosmetic help that is available...but I decided to keep this decision private."
Question: How can one look normal - or keep private - the flat status of one's chest after a mastectomy? I am clueless.

Jump to this post

I don't have any "cosmetic help" and I believe I look "normal." I don't wear any prosthesis either. It's all about clothing choices.

REPLY
drummergirl | @drummergirl | Nov 9, 2022
In reply to @bajalinda "Hello - I am newly diagnosed with DCIS and I am very happy to find this..." + (show)
@bajalinda

Hello - I am newly diagnosed with DCIS and I am very happy to find this group.
Can you please provide more details about these statements: " I can be very comfortable and look very normal with the cosmetic help that is available...but I decided to keep this decision private."
Question: How can one look normal - or keep private - the flat status of one's chest after a mastectomy? I am clueless.

Jump to this post

Looking normal: I was referring to wearing a prosthesis under clothing. Insurance covered bras and the prosthesis and there are boutiques that specialize in fitting you. I felt “safer” with a double mastectomy and that was worth going without my own breasts.
Privacy: I shared a lot with my friends, but elected to keep it private when they asked me what type of surgery I had. Even if I were changing in a locker room, with the right bra and prosthesis, nobody would look at me and know. There are even bathing suits made for mastectomies. Everyone has to assess their own situation with their male partner. I am 73 and may have reconstructed at a younger age, but my husband and I felt safer with this option and my TNBC diagnosis.

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