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Outpatient masectomy becoming the norm in Covid times?

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olympicmtgirl
olympicmtgirl Member Posts: 29

Had 1 of 2 surgery consults and learned my great local hospital is doing "elective" surgeries outpatient only (with max 24 hours observation from entry to exit). With no support person allowed in facility, wondering how drain training even happens. Just sharing my trepidation.

Also another unrelated learning, I should have started genetic testing STAT? Now asking for counseling to help me with decision on unilateral or bilateral, and learned it would be helpful to have genetic testing results for that discussion (plus for insurance approval if I go bilateral).

Waiting 4 more weeks for the second consult with a breast cancer oncology surgeon at the university (where I will likely get my care). No idea what their surgery capacity will be sd 4 weeks is many lifetimes in Omnicron!

Just a ramble but it felt like a bad day.


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Comments

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2022
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    Many facilities have been doing mastectomies as an outpatient procedure for years. I was lucky that both times I had overnight hospital stays but I don't think that's been the norm for a while.

    Not having someone with you at the hospital stinks, but with regard to drains...you are the person who needs to be trained - I think most often patients do their own drains. I did and never had a problem. If you want someone else to do them for you, you can show that person how to do it. It's actually pretty easy

    Genetic testing... are you young and/or do you have a family history of breast cancer? Those are usually the criteria for testing. And in the end, only about 15% of breast cancers are caused by genetic mutations; even many people with extensive family histories of cancer are often found to have no genetic mutations - that was the case for me.

    A bilateral is something you may choose for reasons other than genetics, and to my understanding, in the U.S. it is the law that your insurance company has to pay for surgery to the contralateral breast. With regard to the mastectomy vs. bilateral mastectomy decision, this thread might be helpful:

    Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX https://community.breastcancer.org/forum/91/topics...



    Sorry you've had a bad day! The whole situation is overwhelming and sometimes it just hits you. Hope tomorrow is better!




  • 2019whatayear
    2019whatayear Member Posts: 468
    edited January 2022
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    that is what I had for my BMX in 2019

    :-)

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Heading to the link you suggested!!

    I met the criteria for genetic counseling with family cancer and one first cousin deceased from breast cancer. The local surgeon's scheduler said that genetic counseling is useful in getting a prophylactic breast removal approved. I don't know if it's US law? Will see what I can learn

    Okay going to woman-up if the drains are my job!

  • dancemom
    dancemom Member Posts: 404
    edited January 2022
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    I was "outpatient " for my masectomy last week. Dr office said that is normal for billing purposes, even pre- omicron. Generally you go home in 23 hours if there are no complications. (Kind of like child birth) I went in for nuclear injection at 9am mon, surgery at 1 and was cleared for discharge at 8 am tue, but the paperwork takes time. I actually left about 11. It was fine. I had put in a call the social worker at my cancer center a few weeks prior and asked what services are available to me and basically requested them all. So I had a visiting nurse come the following day to do vitals, check the dressing, set up a PT request for when drains come out, and answer any questions. If you have access to a care coordinator or program like that, use it! It is very helpful.

    I was allowed to have a fully vaccinated pickup person. Also, masks are strictly required.(I was allowed to take mine off to sleep once my nurse left the room. She very gently put it back on me to do vitals and IV every couple of hours). My daughter learned the drain stuff ( it sounds much worse than it is) then helped me dress and pack up. You Do really need help with the drains because especially the first few days it is just too hard to reach around to the site to strip the drain, the hand on that side was too weak to squeeze hard enough to strip or to squeeze the bulb, and it was a 3 hand job until I hang of it, the mobility and strength around day 5. Also, she wrote down all the measurements on a chart and kept track of and set up all my meds. (Antibiotics 4x/day until all drains come out, pain management depending on your needs, stool softener, plus continued on letrozole) . I could not have kept track of it all or been able to open the bottles especially the first 3 days when I was exhausted. They do have good videos about the drains so it wouldn't be too hard to learn in case someone is not allowed in to pick you up. It's just squeamish.

    My surgical onc sent me for genetic testing right away. Also, millions of scans. Those changed ny course of treatment which is why I just had the mastectomy last week.

    I keep writing too many details about all this because I was SO anxious going in. It really was no where near as terrible as I feared. You got this!

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Thanks. I really appreciate you taking the time to share your experiences. While the first radiologist that saw me said a mastectomy was likely, I think I somehow internalized all the people that immediately say to you no, don't think that way.

    I will have this. Thank you for reminding me.

  • sarah_78
    sarah_78 Member Posts: 119
    edited January 2022
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    Thank you for starting the thread. I am facing something similar to this. I had surgeon's appointments this week (2 more to go) and seems like they will take lymph nodes and left breast. They said probably I will be in hospital for 4 days. I am located in Germany and the city I am thinking to have the surgery has very strict Covid regulations. No visitors at all (as opposed to some other close by city who allows 1 visitor for 1 hour daily).

    First surgeon drew how the wound will look like and since my tumour is very high up in the inner quarter of my breast, it looks terrible. I already dread I am not ready for the procedure psychologically and seeing that and learning not even my husband can be with me while dealing with the aftermath is leaving me sleepless. I had never been so down since I started treatment, when I went through the diagnosis and chemo.

    I can't seem to get to a point and pull myself together. When it rains, it pours. BC wasn't enough so covid on top and the worst timing for surgery. I am so stressed I can't find words when I talk or think straight, I don't think i can manage the stuff written above alone.

    Any experience of how I'll manage to go through this is appreciated.

  • dancemom
    dancemom Member Posts: 404
    edited January 2022
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    Sarah, if you stay in the hospital 4 days you won't need any help. The first few days are when its nice to have someone keep track of your meds for you, and get you food and help strip the drains. By day 4 that is all easy to do alone. Here, my test for discharge was to be able to walk to the restroom 2 rooms down SUPERVISED.

  • typhoon
    typhoon Member Posts: 59
    edited January 2022
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    Olympic - My BMX was outpatient in Dec 2020 during the height of COVID, before the availability of vaccines; I'm single and live alone, so the brother who came to stay with me and help out was only allowed to drop me off and pick me up. Surgery started at half past noon, was finished by 5 pm, and I was cleared to go home by 8 pm. The decision to allow me to go home was based on a quick recovery from anesthesia, the ability to eat & drink (I was starving!) without throwing up, the ability to walk around steadily and dress myself, and on a lack of any brain "fogginess" from the anesthesia. If I hadn't been able to do all of those things, they would have kept me in outpatient observation until the next morning. Drain management training took just a couple of minutes (it's actually pretty easy), although training to manage the wound vac system my PS used took a little bit more time. They pack your chest full of painkillers, so pain at home was never an issue; I did go home with a day's worth of codeine (which I didn't need at all), and three days of gabapentin (also not needed beyond the first day). Extra-strength Tylenol for the first few days, then the Tylenol plus Advil after that, was more than sufficient to manage discomfort. I was very, very happy to go home, and it was a joy to wake up the next morning on my comfortable recliner, next to the fire in my family room, with the smell of fresh coffee brewing and a full breakfast being cooked by my brother.

    Sarah_78 - My PS showed me some post-surgery pictures to give me an idea of what I might look like immediately after surgery, and I was kind of freaked out. That said, and one year on, I'm very happy with how it all turned out, and the scars are barely noticeable to me.

    I hope you are both able to find the best arrangement for your needs and to ease your concerns, and I wish you both an easy surgery and quick recovery!

  • laughinggull
    laughinggull Member Posts: 516
    edited January 2022
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    24h was already the practice when I had my mastectomy (with complete axillary lymph node dissection) pre-Covid. I was freaked out when I learned this, because we lived in a small, cramped apartment, and I had two kids and a blind dog (who was always on the worst possible spot), so I dreaded the idea of going home so soon after surgery. I totally understand the trepidation, because I was there myself. I couldn't sleep with anticipation of catastrophic scenarios like tripping on the dog and falling, and worrying about how I would do this or that. I begged the surgeon to do something, anything, to keep me at the hospital for a few days. The surgeon explained to me what kind of shape I would be in after a day; he reassured me that I would be ready to go home in a day, and that they tried to limit the time patients spend at hospital, to the strictly minimum necessary, for good reasons -hospital bugs etc. I would say there are even better reasons now. I recommend that you discuss with your doctors your specific fears and concerns about going home the next day: support, pain, mobility, one by one. They have a lot of experience and should be able to give you guidance and reassurance.

    In the end, the surgeon was right and I happily went home the next day. I was in much better shape than I anticipated. I was much more comfortable in my own bed, in my own place (cramped as it was), getting organized to start my exercises and physical therapy, going for walks and fresh air, eating and doing whatever I wanted. And getting ready to fully move on from the surgery phase. The drains are easy to empty and you learn that in like, a minute. You don't need days of practice to master that. And after they remove the drains a few days later, you start feeling much more normal and comfortable.

    Also, after three breast surgeries, my personal experience is that the opioid painkillers they prescribed me were completely unnecessary. I needed them the day of the surgery, and after that I was fine with the OTC stuff -dont remember if it was ibuprofen or acetaminophen. All in all, these were easier surgeries than I anticipated the first time when I was heading to the operating room.

    You can do this!

    Heart


  • threetree
    threetree Member Posts: 1,427
    edited January 2022
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    OlympicMtGirl - I had my surgery in 2019 (pre-Covid) at a neighborhood/community branch of the university that I believe you say you are likely to go to for treatment. I was initially admitted as an outpatient and was told that it was for insurance billing purposes. I got the distinct impression that they did not expect to send me home that day, even before the surgery. Like DanceMom above, I went in in the morning for the dye or whatever they did (they did it under general anesthesia at my request thank goodness, as I'd heard horror stories), and the surgery was around noon or so. Long story short, I wound up spending several days in the hospital, but had no complications. The surgeon simply knew that I lived alone and would have to go home alone to my apartment afterward. At one point (3rd day?) he asked me how I felt about going home that afternoon and that if I wanted to stay another day, he thought he could arrange it. We went with the final extra day. I think I spent 3 or 4 nights there. I can't remember anymore! I had a friend who took me there and stayed until I went into surgery, then she went back to her office to work. Since it wasn't Covid times, I was able to have visitors, so both my friend and some extended family came to see me a couple of times in the evenings. I was supposed to be discharged around 1 pm on that final day and the surgeon came and asked me if I had a ride home. I told him my friend was at work waiting for the call and that she was going to come get me, take me home, and then go back to work. He moved my discharge time up to 4:30 pm, so she could stay at work longer, and not have to go back. I was pleased with the whole thing. She walked me up to my apt, but then I felt totally fine being alone at that point.

    The nurses had showed me how to do the drains and it was easy - an easy 5 minute lesson/demonstration. I think you'll do fine, and I seriously doubt that you will be sent home same day if you have a mastectomy, and certainly not if you have any grogginess from the anesthesia or will be alone, etc.

  • tb90
    tb90 Member Posts: 281
    edited January 2022
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    Waaay back in 2013 when I had my mastectomy, I was the last surgery of the day and was in a lovely hotel room recovering that evening. Experiences are very individual, but to balance some of the horror stories, I experienced only discomfort post surgery and the dye injection was like a Covid vaccination. Nothing worse. I had such relief that evening, propped up in my queen luxury bed surrounded by fruit baskets, etc provided by the hotel. The room had been sanitized at my husbands request so they knew about my surgery. Despite everything, I had such a nice evening. But I had a very attentive husband and certainly would be different either alone or with young children.

  • bcincolorado
    bcincolorado Member Posts: 4,701
    edited January 2022
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    When I had mine pre-COVID was last surgery of the day and sent home within about 6 hous with meds and instructions. Doctors said the big bad germs live the hospitals and not in your house and figured with meds and instructions could recover better at home with help at home. Was scary but survived.

  • dancemom
    dancemom Member Posts: 404
    edited January 2022
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    It also depends on your surgery. Lumpectomy is generally out within a few hours. The general anesthesia of full mastectomy requires longer surgery and longer observation. Immediate reconstruction is a whole other thing depending on whats being done and tales more time.

    Basically though, its terrifying and confusing going in, and the nurses make sure you are comfortable going out!

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Thanks to everyone. You all reminded me "I got this."

    Set aside today to flesh out my doc questions and recovery plan/supplies and even visiting the local post mastectomy store for a field trip! This will calm me down. Then I will set aside this issue and distract myself for a month while I wait for the next surgeon appointment, and hopefully a lessening of the strain on the healthcare system.

    But may need to go into therapy to help me STOP googling breast tattoos - not needed for years :)

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    I laughed about the googling of tattoos. I did a lot of that too and ended up opting for nothing. But it was fun to look!

  • moth
    moth Member Posts: 3,293
    edited January 2022
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    ERAS: Enhanced Recovery After Surgery is from way before covid. It is a clinial approach which has been shown to improve outcomes. It is patient centered & multi-disciplinary; some of its key components are to get the patient moving as fast as possible (I had patients walking the halls as soon as their anesthesia wore off) and discharged to home as fast as possible. In my health regions mastectomies are often outpatient - they're <24h. They come in in the morning & are home by dinner.

    Maybe it's because our surgeons are preparing pts for early discharge & self sufficiency but our breast drains are placed such that the bulbs are in the front & easily accessible to the pt. Most clinical guidelines advise against stripping or milking the tubing - normally, just the bulbs of the drain need to be emptied into a little measuring cup and the then the amount noted in the little sheet we give pts. The nurse demonstrates it once for the pt, then the next time, the pt does it themselves... and then they go home.

  • threetree
    threetree Member Posts: 1,427
    edited January 2022
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    Moth - that's all interesting stuff to know. Even though I stayed in the hospital for a few days, they did want me up and moving asap, and I was. The "drain training" was just as you said, and it was easy to get the hang of. I don't doubt that I could have managed at home, but since I would have been alone, it was very nice to get that extra support and company from everyone at the hospital. As others have mentioned though, the hospital is where the germs are and I was well aware of that. Because of infection control practices, I found the hospital not nearly as comfy and homey as it was all those years ago when I had my kids. They've pretty much gone back to the old spartan super sterile everything. No comfy cloth covered chairs, pictures on the wall, etc. Nothing more than what is absolutely necessary, and it is all cold, hard, plastic type stuff that can be easily cleaned. And I'm talking before Covid.

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022
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    Back in 2018 when I had my original surgery I was only in for roughly 24 hours as well. I actually think they would have sent me home sooner but I developed a hematoma and they wanted to make sure that stabilized.

  • gb2115
    gb2115 Member Posts: 553
    edited January 2022
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    That's interesting that some places don't have you milking the tubing on a JP drain. We were told to do that twice a day.

  • Unknown
    edited January 2022
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    I just had my DMX on Tuesday. I was sent home 8 hours later. I was worried about that but I’m managing ok with support from my husband. I did not have reconstruction. The hospital said that if I had had reconstruction and needed to spend the night, they would have had to reschedule me. There are no beds available due to covid surge.

  • ava55
    ava55 Member Posts: 42
    edited January 2022
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    Hi all,

    Can I ask what’s the recovery time after bilateral mastectomy with implant reconstruction? How soon were you all able to go back working?

    Any tips for a speedy recovery?


    Thanks

  • dancemom
    dancemom Member Posts: 404
    edited January 2022
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    interesting about the drain "milking". My hospital calls it Stripping. I do it twice a day. THAT is the part of the drain management i couldn't do alone the first few days. I didn't have enough mobility to twist & reach up on my side with both hands and also not enough squeeze power in that hand.

    I had just one removed and an expander put in on mon jan 3. First drain came out after one week. Second drain still in until Tuesday (output on fri & sat is low enough, but holiday weekend)

    I can't lift, push...do much with that arm yet. Not supposed to, plus if I forget, I feel it pulling on the drain. Apartment is a disaster, lol, as my young chefs are making sure we eat, but not so good at the cleanup part. I have been able to sit at my computer for short bits after day 5 to help with our family business. I switched the mouse to my left because that action bothers me a lot. I keep my right arm propped up on pillows on my lap and do only a few minutes at a time. Using my phone has been no problem since day 2! (When I was awake). The first few days post surgery I mostly slept. I think once the drain is out and you can work on mobility, working is more plausible. I mean, until I'm allowed a real shower I can't think about it! (I am still doing spongebaths and my daughter finally washed my hair for me.) I do laps in the hallway because it's been so cold its hard to bundle, and the idea of the tube freezing freaked me out. Fri was warmer so I walked about a mile.

    Going back also depends on your job. I took 6 weeks off because my job is very physical. NO WAY could I pretend to do that next week. But by the end of next week, after the drain is out, I could probably spend more time at a computer so for a desk job 3 weeks would probably be doable if i take it easy. Bilateral might be longer I'm guessing. Your body needs time to heal. Each day feels totally different. If you have a nurse practitioner at your plastics office, that would be the person to ask. They deal with the details of recovery. Surgeons are more about the site itself.

  • ava55
    ava55 Member Posts: 42
    edited January 2022
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    thanks so much for your reply Dancemom that’s very helpful!

  • typhoon
    typhoon Member Posts: 59
    edited January 2022
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    Ava55 - I think it's highly individual. In my case, I was pretty much fine, with full range of movement and mobility, the day after surgery. I was able to wash and dry my hair, without lifting my arms above my shoulders, by hunching over and using my hand-held shower attachment (and then hair dryer). My plastic surgeon allowed me to start showering the second day after surgery (still hunching over to do the hair washing), because she applied a wound-vac system (held in place by what seemed like miles of Tegaderm), rather than traditional bandages, so there wasn't any concern about getting bandages wet. The wound-vac system was removed six days after surgery, at which point my incisions were all completely healed, and my drains came out at 12 days after surgery.

    Both of my surgeons took the approach that I could do whatever I felt up to doing, except for lifting more than 5 lbs for about a month. I was out and about two days after surgery, resumed walking 5+ miles a day, drove myself to the appointment to get my drains out and then went to the office that same day, and was generally back to normal pretty quickly. Of course, I did have a couple of weeks of soreness from the implants (which goes away as the post-surgery inflammation reduces), and a couple of months of nerve twinges as the nerves healed, but otherwise it was all pretty easy for me.

    There are so many different factors that will play into your recovery - how far up your sides the incisions go, placement of drains, size of implants and your body's reaction to the implants, your overall health situation and fitness levels going into surgery, whether there were any complications during surgery, how your body reacts to anesthesia, etc., etc. - almost all of which are outside of your control. As Dancemom said, the NP at my plastic surgeon's office was a fantastic and helpful resource for me.

  • ava55
    ava55 Member Posts: 42
    edited January 2022
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    thank you so much typhoon that info was very helpful and gives me a good steer on what to expect.


  • miriandra
    miriandra Member Posts: 2,102
    edited January 2022
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    "Also another unrelated learning, I should have started genetic testing STAT? Now asking for counseling to help me with decision on unilateral or bilateral, and learned it would be helpful to have genetic testing results for that discussion (plus for insurance approval if I go bilateral)."

    My dad's side is Ashkenazi, so I was very much encouraged to get genetic counseling for BRCA (mine was negative - yay!). My counselor told me that if I was screened for the entire gamut of cancer-related mutations, it was the same as far as billing and work for the lab as if I just screened for the two BRCA mutations. If anything came back positive, health insurance is not allowed to change your premiums or your coverage due to increased cancer risks. However, life insurance companies are allowed to change the terms of their policies should any positives come up.

    Also, health insurance is obligated to cover procedures to create symmetry - whether that's for reconstruction or going bilateral after a unilateral mastectomy. So at least insurance approval is one less thing to worry about. I hope that helps some! (((hugs)))

  • Maria_m79
    Maria_m79 Member Posts: 5
    edited January 2022
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    I know how overwhelming this can all be. I had my surgery 2 weeks ago. Nuclear die was at 9:30 AM, surgery was at 1 PM, got out of surgery at 3 PM, was sent home at 7 PM. I couldn’t have someone in the hospital with me and through the grogginess I had to learn how to mill my drain and aftercare. I did end up going to clinic for aftercare (no at home visits are permitted right now) and they have been helping me monitoring everything.

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Per komen.org, no United States federal laws require insurance companies to cover prophylactic mastectomy.

    Some state laws require coverage for prophylactic mastectomy, but coverage varies state to state.

    Washington state doesn't mandate coverage. I will go ahead with it and fight the insurance battle later.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2022
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    Is Komen referring to a prophylactic mastectomy without having a cancer diagnosis?

    I'm in Canada but I thought that when a patient with breast cancer has a MX, a contralateral MX and reconstruction is required by law in the U.S.. That's how I interpret the Women's Health and Cancer Rights Act, which is federal law: https://www.cancer.org/treatment/finding-and-payin...

    Under the WHCRA, mastectomy benefits must cover:

    • Reconstruction of the breast that was removed by mastectomy
    • Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
    • Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction
    • Any physical complications at all stages of mastectomy, including lymphedema (fluid build-up in the arm and chest on the side of the surgery)
  • miriandra
    miriandra Member Posts: 2,102
    edited January 2022
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    Komen must be referring to mastectomy without a diagnosis. If one breast has been diagnosed with bc, insurance must cover surgery for the other side too.

    Mind you, if you opt for reconstruction, but try for bilateral breast augmentation rather than simply making one side look like the other - that may raise and eyebrow or two.