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Spring surgeries

wondering if there are any other April or May surgeries? Just recovering from my late April mastectomy.

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  • kellym
    kellym Member Posts: 1

    Hi. I'm new here. I'm having a bilateral matectomy in 2 weeks.

  • moderators
    moderators Posts: 8,740

    Welcome, kellym! We're so glad you've made your way here to our community at BCO. This community is a wonderful resource full of helpful advice, information, guidance, and most of all, support from other who have been where you are. We're all here for you, and we hope your surgery goes well and your recovery is swift!

    Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.

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  • bennybear
    bennybear Member Posts: 245

    hi Kelly. Hope all goes well. I’m 10 days out.

  • snm
    snm Member Posts: 135

    If you would like some Tips for your upcoming surgery I just posted Tips for Bilateral Mastectomy with immediate tissue expander with details about my journey.

    Hopefully you can find something useful in that post.

    I wish you good luck!

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    Hi ! How is everyone doing? I just now saw this thread. I am having a double mastectomy tomorrow, reconstruction planned for a later date. Anything I should know, recovery tips?

  • devoinaz
    devoinaz Member Posts: 40

    Hi!

    I think flowergirl1975 and I both had a double mastectomy (simple) on May 31! How did it go for you? If 1975 is your birth year, we're close in age, too. I'm 50. My surgery went fine, but I had one really rough night of vomiting from the anesthesia. It was rather shockingly bad for a few hours and I was super-weak afterward, but now behind me. I'm sore, but they gave me two different kinds of nerve blockers so I have only taken Advil and Tylenol so far to deal with the soreness. The nerve blockers will wear off in about a day, so I'll see how I feel then.

    One thing that's weird is that I actually have substantial pain from things they did during surgery that were unrelated to the actual procedure. They injured my lip when they intubated me, which hurts quite a bit, and they also seem to have bruised my abdomen with the "seatbelt" they used to attach me to the operating table.

    My surgery was largely prophylactic (I had "extensive" LCIS that was discovered in my lumpectomy to remove ILC 6 months ago), and I'm very happy that my pathology report this time said that I had no additional invasive cancer in either breast. I didn't have any lymph nodes removed this time - they took out 8 with my lumpectomy - so I only have the mastectomy incisions.

    I am not planning to do reconstruction, and I haven't looked at my incisions yet. I know I will need to do it soon, but I also know that it will make me feel a bit ill. Dealing with the drains makes me feel lightheaded, but fortunately, my husband is not squeamish and has been helping. This is by far the biggest surgery I've ever had.

    I can't offer any advice since I'm just going through it now (except perhaps to take some anti-nausea meds after the surgery!), but I thought I'd post about my experience so far and hope to connect with others who might be going through it as well. Here's to a quick and easy recovery for all!

  • triscuit
    triscuit Member Posts: 39

    I hope those of you with recent surgeries are doing well. I had my bilateral mastectomy and tissue expanders placed on March 21. Recovery went very well. There were some rough days in there (especially about day 7-8, but getting the drains out was the big turning point. I had two in for 2 weeks and the other two another week longer. It seemed forever and so irritating.

    I was planning for exchange surgery on July 26 as that was the soonest available date when they made the appointment. But suddenly this week they called me and offered up this coming Tuesday! I'm a bit thrown off by the change in plans, but looking forward to getting this over with and getting these expanders out. Everyone is telling me this is such an easier surgery than the BMX, so I hope that's the case. The biggest issue is the logistics of traveling 5 hours away to have the surgery. I'm very happy with my team and results so far but it would have been so much easier to have this done locally.

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    Hi All! Hope everyone is doing well and having a quick recovery :-)

    devoinaz- yes it looks like we did have our surgeries on the same day! We are close in age, I am 48. I was an emotional mess before the surgery. Broke down in the operating room and a sweet nurse held my hand. I would say overall I am doing pretty good. Spent one night in the hospital. I barely remember them giving me a nerve block, I am so glad they did! I dont have much pain as far as surgery goes and Im about 2-3 days out. Still taking advil off and on throughout the day and then tramadol at night. The drains are very uncomfortable! I had one in a few weeks ago with a lumpectomy, I was so worried I would accidentally pull one out. Since I have been dealing with this since March I did not want to prolong surgery/treatment and have to wait to get into a plastic surgeon, plus added recovery time for reconstruction. I just decided I would worry about having boobs later. The prosthetic bras I have seen look quite real, not sure how anyone would be able to tell the difference. I'm nervous about seeing my chest since surgery. :-( Not looking forward to that at all!

  • devoinaz
    devoinaz Member Posts: 40

    I agree that the prosthetic bras look fine. My aunt (who is now 73 and doing awesome) had breast cancer and a double mastectomy more than 30 years ago and has been wearing them for that long. She doesn't regret going flat.

    I'm kindof excited about not having to wear a bra if I don't want to! I had large enough boobs that I could never be comfortable without one before and I've always wished I could. I didn't really wish for totally flat, but I honestly think I'll be fine with it once the incisions heal up. My incisions from the lumpectomy and SLNB were barely there 6 months out, so I'm hoping for the same this time. I had the same surgeon, so fingers crossed!

    I've looked at the Handful bra brand and that seems like a great option if I want to look like I have boobs. Easy, versatile straps, and super lightweight. I haven't bought one yet, though.

    On the drains, definitely uncomfortable! One of mine was suctioning to the inside of my body when I stripped it like they tell you to do. It really hurt! The nurse said to wiggle it a bit and it might help, which thankfully it did.

    My nerve block is supposed to wear off sometime tomorrow, and I'm a bit nervous about that. I guess I'll just see how it goes. I have some strong meds if I need them for pain, but I'd really rather not take them.

  • devoinaz
    devoinaz Member Posts: 40

    Flowergirl1975, are you still doing ok? I'm doing ok and don't have much real pain, but my two sides are not at all the same. One is draining well and flattening out really nicely, and the other is pretty badly swollen and bruised and not draining well. I'm pretty sure I've developed a large hematoma there. I called the doctor over the weekend, but because it's not an emergency, they don't really want to talk to me.

    I hope that they will agree to see me tomorrow in the breast clinic and can do something to reduce the swelling. It's quite uncomfortable, and the bruising and swelling is expanding to other parts of my body as well - I have swelling and a big purple spot on the front of my groin area! The doctors are unconcerned, but I never knew that could happen and I want it to stop!

  • ms meow
    ms meow Member Posts: 6
    edited June 2023

    i had my surgery on April 25th. Left breast partial mastectomy, 8 lymph nodes removed w sentinel node biopsy.
    Surgeon thought she’d have to remove my nipple since my tumor was so close. She saved it. So now one nipple is higher than the other ha!

    Recovery has been smooth. My throat was SUPER sore for several days. My body is puffy and I’ve gained over 15 pounds.

    My armpit area gets so sore and I get zinger pains at the end of the day.

    I will have 30 rounds of radiation, hrt for 5-10 years and on Wednesday I’ll get information regarding chemo. My onco type score is 20, so they say the probability is high.

    Trying to be positive.

  • devoinaz
    devoinaz Member Posts: 40

    Updating again - I was right that I had a large hematoma - 250 ccs! I went to the breast clinic Monday morning, and was in surgery again Monday late afternoon to remove the hematoma. I'm so glad that my surgeon was available and able to fix it so quickly for me. I'm a bit more sore now because of the additional aggravation of the area, but both sides are flat now so I can heal properly. My surgeon said that size of hematoma would take months to heal on its own - and maybe never would.

    What I learned through this experience (that nobody told me before) is that if you have a bit of soft swelling after mastectomy, that's normal, but hard swelling, especially if it's substantial, is a problem. It's really hard to know when you've never been through it!

    ms meow - good luck with your radiation treatments. I didn't go through that, but I did have chemo, 4 rounds of TC because of my high Oncotype score (27). I finished 7 weeks ago. It wasn't fun by any means, but it is manageable. I kept working part time, and even took a combo business-fun trip in the middle for 5 days.

  • moderators
    moderators Posts: 8,740

    We're so glad your surgeon was available and able to resolve this for you so quickly, @devoinaz! Continued well wishes on your healing!

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    devoinaz- I am here :-) Oh my gosh I am so sorry you had to go through that!! Are you in any pain now? I am doing pretty good. I went to my post op appt today and was able to have my drains removed-thank god! I have been having an awful time sleeping so Im looking forward to sleeping on my side tonight :-) My chest is still pretty numb and feels tight under my arm pit. No pain though. I have not seen my new chest yet, just not ready. We have a medical supply place that you go and they will fit me for a prosthetic bra. Thats on my to do list. Tomorrow I have an ECHO before chemo. I should be starting that in the next week or two. I think chemo is going to be worse than the surgery by far. Sooooo not looking forward to this part. All I know so far is I'm having AC, 8 cycles every 2 weeks. So basically 4 months of feeling miserable? I sure hope not. Im really trying to look at chemo as its going to save my life….but its hard sometimes!

    Hope everyone here is doing good. Sucks we have to go through this crap. Stay strong!!!!

  • devoinaz
    devoinaz Member Posts: 40

    flowergirl1975 - That's great that you were able to have your drains removed already and you have no pain!!! I've got mine in at least until next Tuesday, due to the extra procedure. And unfortunately, yes, it hurts! They didn't give me another nerve block the second time around, and I can feel the open wound inside my chest. I've got some new pain meds as well, but they don't totally solve the pain problem.

    I did take a shower today, though, and saw my chest. Because of the hematoma complication, I've got purple marks everywhere in addition to the incisions, but my chest is now totally flat. I think it'll look pretty good after I heal.

    Sorry to hear that you need to start chemo soon, though. As I said in my last post, I did chemo this spring (different regimen, though), and it isn't fun. All the best to you as you go through it. For me, the worst side effect was the bad taste in my mouth. It was hard to stay hydrated because drinking water made me feel ill. But I figured that if that was my biggest complaint, I was doing pretty well. And yes, they say it makes the cancer feel worse than you are feeling, so that's what you want. Good luck!

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    devoinaz- ugh Im so sorry you are still in pain. Are you trying to ice it at all, not sure if that would help? Yes not expecting to be at my best the next few months. Im going to try to keep working, knowing that I may need to adjust my work schedule some depending on how I am feeling. I did look at my chest too this morning. I figured since I had to go have an Echo done today I wanted to see my chest in private beforehand. I feel like I took it pretty well, no tears were shed. I mean it is my new body and I will get used to it. Trying to get things started to meet with someone for a prosthetic bra fitting. Thats good that your chemo wasnt too awful, keep your fingers crossed for me that I have the same luck :-)

  • triscuit
    triscuit Member Posts: 39

    Hope everyone is doing well and having less pain.

    @flowergirl1975 glad you got your drains out! That's such a relief. Sorry to hear you are getting ready for chemo soon and I wish you luck with that and hope it will not be too miserable.

    @devoinaz wow about the big hematoma. Hope you are feeling less pain now. Good tip about soft swelling vs. hard swelling.

    I had my exchange surgery on Tuesday. My plastic surgeon told my friend it went beautifully but I didn't talk to her after. I had fat grafting done to fill in some gaps and step off in the upper chest that was there with the expanders. I am pretty sore from the fat grafting and getting some zings in my armpits as well. @ms meow. My throat was really sore too but it's getting better.

    I am worried that the implants seem big but kind of squished down. I hope it's the compression and the tegaderm kind of flattening them out. I'm trying not to judge much yet as it is only two days. This feels easier than the BMX recovery for sure, but I need to remember not to overdo. I really don't want to cause myself complications when it's a 5 hour drive to my surgeon. I can't wait to take a shower tomorrow night, I think that will make me feel more human. And I can take a break from these terrible compression shorts and surgical bra for a bit. I hope that I can ditch those after my follow-up appointment next week.

  • bennybear
    bennybear Member Posts: 245
    edited June 2023

    hello to everyone. I had posted this and checked numerous times and there wasn’t much action so nice to see a few more have joined. I am six weeks out and my incision is finally nearly healed. I had a mastectomy five years ago that healed quickly so I was pretty bummed out, but I am a lot older than most of you.

    Sorry to hear others had sore throats from the intubation. I have been told mine was difficult and now I need a medic alert bracelet. The anesthesiologist visited me in the recovery room to tell me nd give me a letter. A little disconcerting.

    @devoinaz i too get nauseous from the anesthesia, so they give me meds before, during and after. But I find the tramadol makes me nauseous. So I go on to just Tylenol asap and manage ok. But I do have a high pain threshold. I am sorry to hear about your hematoma. I had a hugeone last time from the biopsy and it took months before they could actually complete the biopsy.

    @flowergirl1975 not sure why it won’t light up, glad the drains are out, I was so happy about that! Hope your chemo goes better than you expect!

    @triscuit hope you heal well from the exchange. All these garments make things uncomfortable.

    @ms. Meow hope the rads go well, I had them the first time, and mostly found fatigue to be the issue.


    Because I’d had a lumpectomy and rads the first time I opted to just go half flat then rather than more major surgery, I was used to it after five years, but as a D it will probably be easier now that I match.

    I ordered some tank tops and bras from the busted tank. They’re inexpensive and made with some modal fabrics. When I am a bit more healed I will order another Amoena Adapt air, really light and comfortable.

    I see the oncologist next week to determine my next steps. I will be asking a million questions as the aromatase inhibitors did not go well for me last time.

    Heal well everyone!

  • devoinaz
    devoinaz Member Posts: 40

    Hi all! I'm finally feeling a good bit better today. I asked my surgeon this morning if I could stop wearing the post surgery compression bra, and her nurse said that would be fine. I think it's made a huge difference in my comfort level. It's a bit of a strange feeling to not wear a bra, but I rather like it even on my first day!

    I can't wait to get my drains out on Tuesday - just a few more days and then I think I'll feel a LOT better.

    Bennybear, thanks for the mastectomy bra suggestions - I'll get a few for days when I don't want to be flat. Have you ever tried the Handful brand?

  • flowergirl1975
    flowergirl1975 Member Posts: 59
    edited June 2023

    Hi Everyone! Hope everyone is doing well :-) The surgery bras are not super comfortable. Very tight around my rib cage. Im only a little over one week out from my surgery so I still have to keep mine on 24 hrs. A lady from a local medical supply place is supposed to be contacting me to schedule a fitting for a prosthetic bra. Anyone else here doing something along those lines? I guess its called Radiant Impressions, they are custom made foobs (fake boobs). Much of my chest is still so numb, such a weird feeling.

  • devoinaz
    devoinaz Member Posts: 40

    I hear you on the numb chest, flowergirl. But what's weird is that somehow, even though my chest feels numb, it also feels very sensitive to anything touching it - especially the skin above my incisions. Plus, the middle of my chest over my sternum is not numb (there's a break between my incisions there), and the end of one of my incisions still hurts quite a bit. Still taking lots and lots of Tylenol and Advil, and really looking forward to having the drains out - tomorrow!!!

    I'm curious about the foobs, too. I ordered one set of light foam ones from The Busted Tank (thanks to bennybear for the recommendation!), as well as a camisole that they will fit into. I'm quite curious how that will look/feel. I don't know yet, but I think I don't want the heavier silicone foobs, and I think I will be happy enough just going flat a lot of the time. It will give me extra incentive to keep my core strong and toned (so my belly doesn't stick out so much)! I'm very happy with the contours of my chest wall, actually. I have one weird indentation on one side under my arm (that was the side with the hematoma, so I think it might be related to that… maybe it will even out over time?), but my chest is contoured like small pec muscles. I have a 10-year-old daughter who hasn't yet grown breasts, and we look pretty similar in our tank tops now!

  • bennybear
    bennybear Member Posts: 245
    edited June 2023

    hello all, I haven’t tried the handful ones. I really like the busted tank modal camisoles. They’re very soft. Hope you like them too @devoinaz it is so great to get the drains out! Yay!

    Has anyone tried knitted knickers? They’re very soft knit foobs that are great early on. For when I was healed my favourite was the Amoena adapt air, it’s super light and adjustable, so I will get a second one of those. Though expensive they feel and look good.

    @flowergirl1975. The numbness is a thing for awhile. But I too don’t like things touching me, so strange


    I have nearly healed but then a new spot opened up when I slept on that side, yikes! Tomorrow I see the MO so will see what they say, such a journey!

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    Hi Ladies! Happy Monday! How is everyone doing? My sides are actually kindof sore lately. I have been trying to do some stretching exercises throughout the day to help. I have not heard of amonena adapt air @bennybear. I will look in to some online I guess. I feel like its going to be weeks before I get some floobs through this medical store if we are talking a consultation, fitting, and then ordering them. Anyone have a suggestion on where to purchase wigs? Synthethic or real? Today I learned that my DR is changing my chemo drugs from AC to TC thankfully. Instead of 8 cycles I will be getting 4. Change is based on my path results from mastectomy, dont feel they need to be as aggressive. Hope everyone is doing good!!!

  • devoinaz
    devoinaz Member Posts: 40

    Bennybear - your incision opened back up??? Ouch! Hopefully all is ok.

    Flowergirl1975 - I did 4 cycles of TC chemo from Feb-April of this year. I have lots of suggestions - mostly related to using ice! My biggest one is to ice your hands and feet during the T part of the infusion - actually start icing 15 minutes before and keep icing 15 minutes after. This reduces your chance of developing neuropathy, which sounds really not fun to me. I iced like this, and had zero neuropathy issues on my hands and feet. It's good to ice your nails as well, otherwise they can fall off or crack. You can get ice pack mittens and socks to accomplish this, or just use literal bags of ice.

    Most people apparently don't have this next problem, but the one place I did get neuropathy was on my tongue! I didn't ice my mouth during my first T infusion, and then my tongue felt like it was burning for 2 weeks! So after that, I iced my mouth as well as my hands and feet. It was a bit of a trick to do because I kept having to take my hand out of its ice to put more ice on my mouth... But it worked and I didn't have the burning tongue problem again.

    And my last icing suggestion is that you might want to consider icing (aka cold capping) your head. It's not necessary, but with TC, a lot of us are able to keep about half of our hair with icing and not need a wig. I was lucky that the cancer center I go to had a head icing machine called Paxman, and it also was partially subsidized. Cold capping can be a bit pricey. Anyhow, my hair is very thin in a couple of spots now, and once it starts really growing back (which has not yet happened in any obvious way, but soon!), I'm thinking I'll cut it all short. BUT, the thing I liked about not losing all my hair is that if I didn't tell people, they didn't know I was a cancer patient. I just adopted a hair style with wide headbands. I guess a wig works for this, too, but because I live in AZ where it's really hot, I thought that would be pretty miserable.

    In any case, best of luck with the chemo. I found that I felt truly bad for just a few days in each cycle, and would then mostly recover before the next one.

  • pjc5399
    pjc5399 Member Posts: 32

    @triscuit I had my exchange surgery last Tues (6/6) too. So much easier! I had some soreness from the lipo the first couple of days but nothing worse than if you exercised a lot. I had multiple fat grafting sites and I am bruised like you wouldn’t believe (no bikinis for me in the foreseeable future) but thankfully nothing hurts or is even sore at this point. Got my stitches out yesterday. Quite pleased with how my breasts turned out. Will be interesting to see how much of the fat takes. They are so much better than the expanders.

  • bennybear
    bennybear Member Posts: 245

    @devoinaz thanks for all the info on the icing. That’s the type of chemo toy Mo is considering depending on my oncotype score.

    The opening is small, just very unexpected, so hopefully I will be fully healed soon!

    Hope everyone is doing well!

  • flowergirl1975
    flowergirl1975 Member Posts: 59

    Hi Everyone! Happy almost Friday :-)

    @devoinaz - Wow thanks for all the tips. Im glad to hear TC wasnt awful. Im considering cold capping, I mean I would like to keep my hair if possible. If I try this do I highlight my hair before chemo starts, Im assuming I cant do it once I start chemo.I have been holding off thinking I was just going to shave it all off so what would the point be. Im still waiting for them to call me back with dates, didnt realize it was going to be so hard to schedule a chemo appt. I also ordered a bra from The Busted Tank!!!! I hope I like it. Thank you @bennybear for the suggestion.

    Hope you all had a good day!!!

  • bennybear
    bennybear Member Posts: 245

    @ flower girl. Hope you like it, I really like the soft modal ones, I am going to order some more as they are the most comfy right now,

    Who knew chemo would be so popular?

  • triscuit
    triscuit Member Posts: 39
    edited June 2023

    @pjc5399 glad you are doing well! I had my follow-up today. I'm still bruised like crazy too - she wants me to keep wearing compression until the bruising is gone. I'm worried about my results a little. One is definitely lower than the other and the shape/curve is different. She wasn't worried but wants me to wear a supportive bra 24/7 to really support the IMF on the lower side as it continues to heal and scar up. She assures me it won't keep slipping southward out of the capsule. They are definitely much better than the expanders, that's for sure.

  • devoinaz
    devoinaz Member Posts: 40

    @bennybear - sorry to hear that you might need to do chemo as well! I had to do it because of my Oncotype score. It was 27, and everyone was surprised when that result came back because my cancer was lobular, and those usually have low scores.

    @flowergirl - on the hair question, I didn't dye/highlight my hair before chemo, so didn't have to think about this. I think I'd do it now, though, if that's what you usually do and you're planning to cold cap. They say that if you cold cap, you're not supposed to color or really even do much styling of your hair during chemo and for the 4 months afterward. You hardly even wash it, actually! The chemo drugs reduce oils on your skin and scalp, so not washing is not really a problem, but not being able to do your normal styling can be an issue.

    I conditioned and gently brushed my hair every time I showered (so, most days). I have curly hair, so I never brush it dry anyway. Right after my second infusion, it felt like about half of my hair came out in one day. There were a few other days around that time when I lost substantially more than on a regular day, but that was nothing like my big shed day. It was quite alarming when that happened, but the shedding slowed down a lot after that, and I never had another big shed day through the rest of the treatments.