Double mastectomy: Anyone have major side effects and/or regrets?

Posted by mitch3194 @mitch3194, Dec 21, 2023

Anyone have a double mastectomy have major side effects and/or regrets?

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@ssmab

I had my bilateral mastectomy at Mayo Rochester. I was released about 6 hours after surgery and went back to the hotel my husband and I were staying in. I had a call the next morning from the surgeons assistant to see how I was doing. I was surprised how well I was doing after surgery, I had that paravertebral block also and all I needed was Tylenol and ibuprofen. Never took the opioids. I'm sure each case is different and hospitals have their own protocols but the surgeon's nurse told me that during the first year of the pandemic they couldn't keep women overnight in the hospital and it turned out patients had less infection, and they recovered faster and better when they were sent home the day of surgery. So unless there are issues present, patients are released that day of surgery. Sending love and healing wishes to you❤️

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I have never heard of the Paravertebral block. What is this?

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@jane2024

Many thanks! Much appreciated.

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Thank you

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@mitch3194

I have never heard of the Paravertebral block. What is this?

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I believe I have the right term for the block they give us for anesthesia during the mastectomy surgery. ( but I am not a nurse or health care worker so I'm not certain that is the correct name of the block) It controls the pain for 3 days. I didn't need any opioids after the surgery, just Tylenol and Ibuprofen.

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@jane2024

Thanks for sharing. I am going to have a double mastectomy and am not sure if I might need help at night.

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@jane2024 - I had double mastectomy and in prep I moved all the items I'd need for at least the next week to shelves that I could reach without raising my arms above my shoulders. I also made a pillow that prevented me from rolling over and spent the first couple nights sleeping in a recliner as it was extremely difficult to get out of bed after the surgery. I got myself plenty of shirts that were front closure and very loose fitting. I also found a way to pin the drains into the shirt. There are a number of people that have You Tube videos that explain their prep or things they wish they new before double mastectomy that I used in prep for the surgery.

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@bpknitter53

@jane2024 - I had double mastectomy and in prep I moved all the items I'd need for at least the next week to shelves that I could reach without raising my arms above my shoulders. I also made a pillow that prevented me from rolling over and spent the first couple nights sleeping in a recliner as it was extremely difficult to get out of bed after the surgery. I got myself plenty of shirts that were front closure and very loose fitting. I also found a way to pin the drains into the shirt. There are a number of people that have You Tube videos that explain their prep or things they wish they new before double mastectomy that I used in prep for the surgery.

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Super helpful. Thanks so much!

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@bpknitter53

@jane2024 - I had double mastectomy and in prep I moved all the items I'd need for at least the next week to shelves that I could reach without raising my arms above my shoulders. I also made a pillow that prevented me from rolling over and spent the first couple nights sleeping in a recliner as it was extremely difficult to get out of bed after the surgery. I got myself plenty of shirts that were front closure and very loose fitting. I also found a way to pin the drains into the shirt. There are a number of people that have You Tube videos that explain their prep or things they wish they new before double mastectomy that I used in prep for the surgery.

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Thank you! Very helpful!

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@jane2024

Thanks so much to everyone for sharing your experience as I am seriously considering having a double mastectomy instead of a lumpectomy plus radiation as initially suggested by the surgeon. I would like to know if you had the aesthetic flat closure at the same time as the mastectomy and if you have a good surgeon in the greater NY area that you can recommend. It looks like there is little information on going flat on the websites of some major breast cancer centers. Many thanks!

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My goal was also aesthetic flat surgery. My warning for you is find a surgeon who will PROVE to you he/she/they have performed this surgery successfully. Make sure you SEE photos. I saw 10 plastic surgeons before my mastectomy. I chose a surgeon who assured me he could do it. But he couldn’t understand why I would not want to try a skin sparing mastectomy and let him use rhe skin to create an “A “ cup. It would be like a lat flap surgery but easier because the skin was already on my chest. He talked me into it. I am so so sorry I didn’t see photos of his successful surgeries. I showed him pictures of what I wanted and what I absolutely did not want. I told him I wanted one and done. No fat grafting or future surgeries. He said he could do it the surgery went fine. Recovery was fine. But when he unwrapped the bandages to show me the results, I collapsed on the floor in horror. Now I can’t find any plastic surgeon who can fix the mess he made. It’s been a year. I am trying not to look at myself.

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@toomanyquestions

My goal was also aesthetic flat surgery. My warning for you is find a surgeon who will PROVE to you he/she/they have performed this surgery successfully. Make sure you SEE photos. I saw 10 plastic surgeons before my mastectomy. I chose a surgeon who assured me he could do it. But he couldn’t understand why I would not want to try a skin sparing mastectomy and let him use rhe skin to create an “A “ cup. It would be like a lat flap surgery but easier because the skin was already on my chest. He talked me into it. I am so so sorry I didn’t see photos of his successful surgeries. I showed him pictures of what I wanted and what I absolutely did not want. I told him I wanted one and done. No fat grafting or future surgeries. He said he could do it the surgery went fine. Recovery was fine. But when he unwrapped the bandages to show me the results, I collapsed on the floor in horror. Now I can’t find any plastic surgeon who can fix the mess he made. It’s been a year. I am trying not to look at myself.

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I am so sorry to hear that and hope you will eventually find a surgeon who can fix that. I discussed with my surgeon, told him that I just want to have a flat and smooth chest and nothing else. I showed him photos of flat and smooth chests. He said he can do it although the incision may not be the same as shown in the photos. I did not see a plastic surgeon, my surgeon said it would not be necessary. Should I insist that he bring on a plastic surgeon which the cancer center does have? I do not want to upset my surgeon. I am getting nervous now. Thanks for sharing.

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I had an oncology surgeon. I said I didn't want reconstruction and wanted to go flat. What I ended up with appears to be what is being referred to here as "aesthetic flat closure" and when I googled images, that is what I have. I had no discussions at all about leaving skin. Or scar shape. I wanted as much breast out as possible and on one side, there is a very small sort of puffy area that the surgeon said she left for a bathing suit. Which was just silly. It is 98% flat there and 100% flat on the non-cancer breast. It worked out fine. There will always be some degree of numbness and odd sensations and sometimes almost a phantom limb kind of thing. I am sorry to read others have not had good experiences. Maybe it helps to avoid plastic surgeons?

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I think California, southern mostly follows the stay one day. Honestly, the drains were done by my sister for 2 weeks after my 1st surgery. After she left i had them 5 days or so and could do it.

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