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Bilateral Mastectomy + Breast Reconstruction experiences?

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beebee22
beebee22 Member Posts: 45

Hi everyone. I am 42 yo. I have been newly diagnosed with High-grade DCIS on my left breast. The initial treatment options are lumpectomy and mastectomy. The lumpectomy treatment will follow by radiation, which I am not into. I understand mastectomy is a painful decision but I am in favor, as I don't have to worry about having to go through all this again =( or at least the chances of having it in future are much lower.

I would be grateful if you can share with me your experiences with bilateral mastectomy and breast reconstruction which did at the same time. How long has your pain lasted? Is the drain a sure thing to carry? Can you take care of yourself alone or do you need someone to be with you post-op at home? Where's the scar - is it big? Do you get your breast sensation back after some time? How do you cope with everything? I have too many questions to ask...anything you can share with me is valuable...thank you.

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  • specialk
    specialk Member Posts: 9,233
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    beebee - I had bi-lateral mastectomy with immediate placement of tissue expanders under the pectoral muscles, and my surgery was a skin and nipple sparing type with incisions in the fold underneath the breast. After surgery I looked much like I did before, just a bit smaller until I was able to start fills. I had two drains on each side, but they were removed relatively quickly - less than two weeks after surgery. I found that I was in pain that needed to be medicated with prescription strength pain meds for about a week, then I just used Tylenol to manage it. I felt pretty normal at about the 5-6 week point. I had surgery on a late Monday afternoon, came home from the hospital on Wednesday morning, and my husband was off work for the rest of that week and returned to work on the following Monday. I could pretty much do everything for myself except I needed a steadying hand to shower, and he did wash my hair for me the first time. I found that I lost all breast sensation and it did not come back - I feel that is the experience for most people. There are some for whom sensation does return, but I doubt it feels like it did previously. If any of this information prompts questions, please feel free to ask me. Wishing you the best.

  • beebee22
    beebee22 Member Posts: 45
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    Thank you so much Specialk. Thank you so much for your sharing. Glad that you have nipple and skin-sparing surgery. How long post-op now? Can you go back to normal daily activities including gym or exercise? What bout showering? Is your breast feel pain some time? I read somewhere that the pain can last years and u may feel itchy or tingling but just can't stop it...I wonder why can't they be sure to spare the sensation too.

    I am awaiting my appointment with my breast and plastic surgeon to clarify things. I have a long list of questions I wanted to ask them...any specific questions you think I shouldn't miss?

  • specialk
    specialk Member Posts: 9,233
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    beebee - my mastectomy surgery was in Nov 2010. I have required subsequent surgery for some skin healing issues, but I can indeed exercise and did regularly go to the gym up until the beginning of Covid. The question of showering differs from doctor to doctor, it is best to ask yours specifically. I don’t have ongoing pain, tingling, or itching but had all of those after surgery as I was healing. Feeling can’t be spared because as the breast tissue is removed the nerves are severed. For some, some level of nerve regeneration can restore some skin sensation but I don’t believe it is at all the norm.

    I would ask at your appointments the questions posted in your header about their patient experience with drains, discomfort, etc., and also what are their restrictions, drain removal parameters, and schedule for reconstruction as far as fills and timeline.

  • typhoon
    typhoon Member Posts: 59
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    beebee - I had a bilateral mastectomy, skin & nipple sparing, direct-to-implant, in Dec 2020. I was released from the hospital a couple of hours after the surgery, and I did have a family member with me that night, but never really needed any help. I was up and about the next morning without any major issues -- took gabapentin for discomfort for two days, then found extra-strength Tylenol to be more than sufficient. I had a lot of nerve twinges the first couple of weeks, but the Tylenol made them manageable. My PS used a wound-vac system and wrapped me up in tagaderm film instead of traditional bandages, so I was able to shower normally the second day after surgery; the wound-vac system came off 6 days after surgery, at which point the incisions were nicely healed and no need for bandages. I had two drains that stayed in for a total of 12 days, but they were pretty easy to care for, and I didn't really notice them most of the time (and removal was painless). The only "hard" restriction that my doctors gave me was to not lift anything heavier than 5 lbs for about 2 months after the surgery. Other than that, I was back to exercising (mild, at first), driving, working, and other normal activities within 2 weeks after surgery.

    It's been 16 months since my surgery, and the scars are very, very faint. I've regained at least some sensation everywhere except for a couple of square inches at the tops of both breasts, and still get mild nerve twinges every now and then. I'm super happy with the way everything turned out.

    Happy to answer any questions you might have!


  • beebee22
    beebee22 Member Posts: 45
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    Thanks again Specialk. Yes, I will put those questions in my list. I have a long list! I also wanted to ask if you have only one surgeon who did both mastectomy and reconstruction for you, or a different one for each procedures?

  • beebee22
    beebee22 Member Posts: 45
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    Thanks for sharing this with me Typhoon. I appreciate the details given. I think it is really important for me to know the details so I can be ready to fight this with more confidence. I will definitely ask about the Wound Vac! Did you use any post-op scar removal cream? Is your scar underneath the fold of your breast? I need to check with my surgeons if the implant can be used straight away instead of expanders...or what's the main differences between them.

  • typhoon
    typhoon Member Posts: 59
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    beebee - I didn't use any special creams, just my regular moisturizer (Aveeno). The scars are primarily in the inframammary fold and about 1.5 inches up outsides of my breasts.

    I was able to do direct-to-implant instead of tissue expanders because of the skin-saving aspect of the surgery (didn't lose any skin), because I wanted to stay the same size (32C), and because my implants are fairly small -- Allergan, 345cc's on each side.

    The plastic surgeon gave me the option to use the Prevena wound vac system since I'm quite lean, she thought it would ensure a tight surgical seal, and she uses it frequently in her cosmetic plastic surgery practice with fewer post-surgical complications (in her experience). I decided to go with it because it would mean less time with bandages; it did cost me an additional $350 that was not covered by insurance, but it was worth it.

    My surgery was performed by two surgeons - a breast surgeon who did the mastectomy part, and a plastic surgeon who did the reconstruction part. I saw the plastic surgeon for all of my post-surgery appointments, drain removal, etc.

    Couple of random thoughts - I used a little apron thingy with large pockets that I bought on Etsy to hold the drain bulbs during the day and at night. I used two lanyards with clips to hold the drain bulbs when showering (finally found a use for the lanyards that United has been sending me for years as a MileagePlus member!). I did buy one of those pillows that fits around your chest and under your arms, and absolutely loved it. I used it for several weeks while driving and sleeping, and it was a lifesaver. My plastic surgeon sent me home in one surgical bra and gave me a second surgical bra for back-up; that said, I did buy a couple of post-mastectomy bras (there's a huge choice online) to bridge the @ one month gap until I could start wearing my regular bras. There's a whole cottage industry selling breast surgery paraphernalia, but I found that I didn't need most of the stuff.

    Hope this is useful to you!!

    (Edited to add - my implants are pre-pectoral, i.e. placed above the pectoral muscle. The post-surgery pain levels, ranges of activity, and recovery times are significantly different, I believe, if the implants are placed under the pectoral muscle. There are pros and cons for each option.)

  • beebee22
    beebee22 Member Posts: 45
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    Thanks Typhoon. I am still unsure what I will get. My surgeon can't tell if it can be skin saving and nipple-preserving, it all depends on my further MRI investigation later this week. I am yet to speak to my plastic surgeon too...I am very unsure at this stage what to expect after surgery 😑

  • specialk
    specialk Member Posts: 9,233
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    beebee - sorry for the delay in answering - have not been online much while dealing with a pending oral surgery! I did want to answer - yes, as with typhoon above my surgery was done by two surgeons - an oncological breast surgeon (does breast surgery for cancer patients only, and no other types of surgery) did the mastectomy part, and simultaneously a plastic surgeon started on expander placement as soon as the first side mastectomy was done, with the PS finishing up and closing incisions. I did see the BS for several post-op visits, he removed my drains, and he is the one who checked on me post-surgically in the hospital. My continuing post-op care was from the plastic surgeon, and I saw him much more frequently and for a longer time period. My implants are sub-pectoral - they were done long enough ago that pre-pectoral was not yet being done - but I would not be a good candidate for implants over the muscle in any event due to very thin skin and a slow vascularization of the skin after surgery. I did switch plastic surgeons years later and her office recommends a scar mediation product called Biocorneum. I have had an excessive number of skin cancers in addition to breast cancer and I use the Biocorneum on those as well - it works very well. I got it at my plastic surgeon's office but I think you can get it online, like from Amazon, as well.

    I also used a nail apron from Home Depot to hold the drains, or pinned them to the side seam of a boy's tank style undershirt that I could step into and pull up. I woke up in a mastectomy camisole from my initial surgery but I was allergic to the fabric. In subsequent surgeries I have had a surgical bra that I had to wear until cleared to remove, but then wore stretchy bras like Genie or Coobie after ward. I still mostly wear those, but did have a bra fitting at both Nordstrom (they are trained for mastectomy and reconstruction patients) and a mastectomy shop locally. I didn't buy much before surgery - there is an onslaught of products that are mostly not necessary, in my opinion. Some people like the padded velcro thing that wraps around the seatbelt. I have recommended a few things over the years here, including a lamp dimmer which I still use so I don't have to reach up to turn off my bedside lamp. Also, an inexpensive plastic outdoor chair can be nice in the shower, as well as a handheld shower head. I used a clean shoelace to string my drains on and wore them like a necklace in the shower. FYI, some plastic surgeons won't allow you to shower until drains are removed, but mine did. I wore pull-on loose fitting track pants, flip flops, and lightweight zip up hoodies or button front pajamas. Here are some links:

    https://www.homedepot.com/p/The-Home-Depot-Canvas-Tool-Apron-HD324655-TH/310338162

    https://www.homedepot.com/p/Lutron-Credenza-Plug-In-Dimmer-for-Incandescent-and-Halogen-with-Locator-Light-White-TT-300NLH-WH/100145680

    https://biocorneum.com/

    https://www.target.com/p/hanes-men-s-comfort-soft-super-value-10pk-tank-top-white/-/A-54478498?preselect=54449359#lnk=sametab

    https://shopcoobie.com/

    https://www.amazon.com/Automotive-Authentic-Sheepskin-Shoulder-Protector/dp/B07GJCXHSJ/ref=zg_bs_318324011_6/134-7454451-7830451?pd_rd_i=B09V7JTRTD&psc=1

    https://www.32degrees.com/products/womens-ultra-light-full-zip-hoodie?variant=39688454832217

  • beebee22
    beebee22 Member Posts: 45
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    Thanks again specialk! Hope ur oral surgery went well. I will go through the shared link one by one to see what I can get. The pre pectoral and sub pectoral are sth I need to study too...

  • orchidgal8
    orchidgal8 Member Posts: 3
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    Hello, I appreciate all of your posts here. I have a surgery date for my third reconstruction on June 17th. The first was in 2010, a skin sparing double mastectomy with TEs, exchange three months later, subpectoral. There was a lot of loose skin so the PA convinced me to let me do another with slightly larger implants. It turned out badly for me as it was so tight, although having lots of deep tissue massage and doing fascia release for several year myself there has been little relief. Am having the old ones removed now,and they developed capsular contractor so scar tissue removed as well. I'm concerned about which implants the PS will use. These will be placed prepectorally, with a new incision made in the infraary fold. The PS said my original scars in the middle are too small to do all of the work he must do. I've heard from a couple of women who had their implants replaced with the new cohesive ones, both Natrelle Inspira and Mentor Memory Boost and they say they love them. My PS isn't aware of the new coheaives and doesn't have any samples. Not sure what to do as if he uses the regular ones there will be loose skin. Apparently the coheaives go far in addressing that issue. Any ideas or comments? Thanks so much!

  • snm
    snm Member Posts: 95
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    Hi Beebee, please see my post "Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange". I wrote about my journey; hopefully this can give comfort and helpful info to others.