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 have similar question. Recently diagnosed, 100% ER positive, I would prefer to do bilateral now and not wait for recurrence to go through it again.

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Hi lauraho,

I was 50 when I first heard the C-Word for breast cancer. I'm telling you like it was...hubby was on speakerphone with me and did not hesitate to opt for a lumpectomy. I had not even had time to process How the Heck do I have BC. So, that's the path I went. If you ask me now No breasts are worth the years, years, and more years of all the different Dr appts. not to mention every 6 months 2-3 hour diagnostic mammos. 2007 right girl lumpectomy chemo, radiation, and 10 years of Arimidex. Jump forward to 2021 another biopsy suggests a lumpectomy on the left girl this time. Because for me IMO OVERLY Cautious. I was very fortunate to find a breast cancer site that helped me get a 2nd opinion. I have never heard of a Radiologist coming into the ultrasound room to say "I Highly Suggest" I am happy to say I Am a Warrior/Conqueror but there are many many questions to ask a surgeon Before a bilateral surgery is completed. #1 Have the surgeon get approval for a Wound Vacuum approved by your insurance BEFORE Surgery!!! Demand it I say my opinion only. My bilateral was on 05/25/2022. Weekly visits to the surgeon over 4 liters of needle drainage @ ER+ surgeon's office. The attached photo was 3 weeks post-op right before my dehiscence. The last time I was in the surgeon's office on 09/15/2022 he told his assistant/nurse to order a wound vacuum. No one contacted me even though they all knew I was doing 2-3 times daily wound care myself. I went to our family GP and he was very concerned. Long story end. In the 1st week of Nov, my phone is blowing up with calls from the surgeon's office the Insurance Approved the wound vacuum. WooHoo, where was it back in May, June, July August, Sept and even October when I needed it most?

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I just has a surgical biopsy
Left breast lower side outfer

The surgeon said it looked benign is this mean I don't agree the pathology waiting ? Or can they be wrong

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@bcwarrior

Hi lauraho,

I was 50 when I first heard the C-Word for breast cancer. I'm telling you like it was...hubby was on speakerphone with me and did not hesitate to opt for a lumpectomy. I had not even had time to process How the Heck do I have BC. So, that's the path I went. If you ask me now No breasts are worth the years, years, and more years of all the different Dr appts. not to mention every 6 months 2-3 hour diagnostic mammos. 2007 right girl lumpectomy chemo, radiation, and 10 years of Arimidex. Jump forward to 2021 another biopsy suggests a lumpectomy on the left girl this time. Because for me IMO OVERLY Cautious. I was very fortunate to find a breast cancer site that helped me get a 2nd opinion. I have never heard of a Radiologist coming into the ultrasound room to say "I Highly Suggest" I am happy to say I Am a Warrior/Conqueror but there are many many questions to ask a surgeon Before a bilateral surgery is completed. #1 Have the surgeon get approval for a Wound Vacuum approved by your insurance BEFORE Surgery!!! Demand it I say my opinion only. My bilateral was on 05/25/2022. Weekly visits to the surgeon over 4 liters of needle drainage @ ER+ surgeon's office. The attached photo was 3 weeks post-op right before my dehiscence. The last time I was in the surgeon's office on 09/15/2022 he told his assistant/nurse to order a wound vacuum. No one contacted me even though they all knew I was doing 2-3 times daily wound care myself. I went to our family GP and he was very concerned. Long story end. In the 1st week of Nov, my phone is blowing up with calls from the surgeon's office the Insurance Approved the wound vacuum. WooHoo, where was it back in May, June, July August, Sept and even October when I needed it most?

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Great advice on the wound vac! I see my first surgeon next week. Stay strong!

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@lauraho

I have similar question. Recently diagnosed, 100% ER positive, I would prefer to do bilateral now and not wait for recurrence to go through it again.

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It’s all a whirlwind at the time of diagnosis, and it’s not easy to make all those decisions so quickly. I chose to have a bilateral after a TNBC diagnosis. Though I was asked if I wanted a lumpectomy (discussion held several times), my surgeon understood my decision. I’m grateful for the choice I made, because I can sleep each night knowing the ducts are gone. I no longer have to feel my dense breast tissue, that normally felt lumpy, and wonder if a lump was ok or not. It gave me peace of mind.

It can certainly be a longer and sometimes harder road to choose a bilateral mastectomy (if you follow up with reconstruction), but this choice was the right one for me. I will soon reach my 3-yr milestone after diagnosis (Christmas Eve Day), and my breasts feel normal too me. I’ve grown to appreciate what I have, and am so thankful for the surgeons who cared for me through this process.

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I had a bilateral mastectomy in October 2021, with no reconstruction, after my triple-negative diagnosis. Same situation in terms of doctors trying to talk me out of it (especially the radiology oncologist), but after agreeing to go ahead with it, my surgeon finally admitted that members of his own family would be making the same decision. I had an inch thick stack of medical articles backing up why I felt strongly about it. In terms of timeline, I was only in the hospital one night. Fortunately my daughter came and was with me for two and a half weeks, which was incredibly helpful. Chemo started exactly a month after the surgery. I started driving two weeks after the surgery — with seat belt pillows in place! (Driving independently was the biggest thing before my daughter felt like she could leave!) The hardest thing for me was the pain at the site of the drains; that was more excruciating than anything else. And of course, the business of the drains was a mess, too, but that was doable, as long as I could get to the surgeon’s office about twice a week for his attention to the drainage. Looking at my calendar, ten days out I felt like I was actually recuperating. If I hadn’t had such trauma at the drain exit wound on one side it might have gone faster. I was still lying down part of the day most days at two weeks, but otherwise I was functional at least a good part of the day. I was freaky insistent about walking every day. Hopefully this information helps? I am just about to turn 70 and retired, but most people think I am ten to fifteen years younger than that. There are many other cautions I have about what to watch for and request *after* surgery — no one warned me about what I could do to lessen my risk of lymphedema 😣😩😳 — a very unwelcome surprise! And after six months I had to throw a fit in order to finally get to see a physical therapist. Apparently my particular situation fell into a black hole in the system since I had no radiology after the chemo. Anyway, all of that post-surgery is another story entirely and probably not needed right now!

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Thank-you for sharing your stories. This is a wonderful forum for us to help each other.

Going flat after mastectomy is not for everyone but more women are choosing that and it was absolutely the right decision for me.

My first plastic surgeon did not support my decision to go flat so I was fortunate to find a one who fully supported it. She listened carefully to my reasons and asked questions to be sure I understood my other options.

I showed my surgeon pictures of "bad" results with going flat. Surgeons tend to leave excess skin in case you change your mind and want an implant in the future. I felt the extra skin was not only unattractive but also may make it more difficult to later check for any new lumps. I was very sure I would not need the extra skin for later reconstruction. So I showed my surgeon pictures of the clean, smooth chest result I hoped for. I asked for a "one & done" surgery, not wanting to have more surgeries later to correct dog ears, etc. She agreed to do her best and three years later, I am still happy with the results.

On the web there are lists of questions to ask your surgeon, pictures of good and poor surgical results as well as communities of women who have faced the same decision. I wish you peace of mind and a healthy, happy future!

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@lnlowe70

I had a bilateral mastectomy in October 2021, with no reconstruction, after my triple-negative diagnosis. Same situation in terms of doctors trying to talk me out of it (especially the radiology oncologist), but after agreeing to go ahead with it, my surgeon finally admitted that members of his own family would be making the same decision. I had an inch thick stack of medical articles backing up why I felt strongly about it. In terms of timeline, I was only in the hospital one night. Fortunately my daughter came and was with me for two and a half weeks, which was incredibly helpful. Chemo started exactly a month after the surgery. I started driving two weeks after the surgery — with seat belt pillows in place! (Driving independently was the biggest thing before my daughter felt like she could leave!) The hardest thing for me was the pain at the site of the drains; that was more excruciating than anything else. And of course, the business of the drains was a mess, too, but that was doable, as long as I could get to the surgeon’s office about twice a week for his attention to the drainage. Looking at my calendar, ten days out I felt like I was actually recuperating. If I hadn’t had such trauma at the drain exit wound on one side it might have gone faster. I was still lying down part of the day most days at two weeks, but otherwise I was functional at least a good part of the day. I was freaky insistent about walking every day. Hopefully this information helps? I am just about to turn 70 and retired, but most people think I am ten to fifteen years younger than that. There are many other cautions I have about what to watch for and request *after* surgery — no one warned me about what I could do to lessen my risk of lymphedema 😣😩😳 — a very unwelcome surprise! And after six months I had to throw a fit in order to finally get to see a physical therapist. Apparently my particular situation fell into a black hole in the system since I had no radiology after the chemo. Anyway, all of that post-surgery is another story entirely and probably not needed right now!

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I also had a double mastectomy and went flat. No regrets. I was 72. My recovery was amazingly easy. I had day surgery and came home with lots of energy (the steroids, I expect) and played pool with my husband and made dinner. No pain. Eventually took Tylenol at night for a couple weeks. Agree that the drains are annoying. Mine came out in 10 days or so, but I did develop a seroma, which I had drained by syringe several times and then had a procedure to drain it, which worked. I did develop mild lymphedema. Important to treat with lymphatic massage right away, while you can still resolve. This took about three months 2x/wk for me. I can play golf and do anything I want. Not limiting in any way. I too have nice flat skin on my chest, which does make it more comfortable to wear a bra.

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@toomanyquestions

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.

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Saline implants were recommended for me, but that was a huge mistake. They ruptured and were Infected. I was really sick and didn’t know why.

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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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@annie65

Did you take any hormonal treatment after double mastectomy?

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