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July, 2022 Surgery- Tips, Words of Wisdom, Others Scheduled?

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Hi everyone,

New to this site, and I'm already feeling much less lonely reading all of your posts.

39 y/o, scheduled for bilateral mastectomy on July 6, nipple/skin sparing with expander placement. I am absolutely stricken with fear for the surgery and anxiety about the pain. I heard that the drains are very painful, and I can't seem to stop thinking about that.

For those of you who have been through this, any words of wisdom, encouragement, tips, or quotes/mantras you relied on would be SO welcomed.

Also, if anyone else has an upcoming surgery scheduled, I'd love to hear how you are coping. Taking morning walks, visiting the beach, mindfulness/gratitude, and adjusting my diet have helped me to have something to focus on that are in my control. Feeling like I'm setting my body and mind up the best I can for this has been empowering. I know I/we will get through this... it's the 'getting through it' part that's tripping me up!

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Comments

  • serendipity09
    serendipity09 Member Posts: 769
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    Hi there! I'm sorry you have found yourself joining the club no one wants to be in. You have come to the right place for support though.

    I had my BMX 9/2020 and I was very surprised how tolerable the pain was, I only used Tylenol when I came home. I was up and probably overdoing it two days after surgery. With regards to the drains, I didn't feel they were painful, but they were a little uncomfortable. The only time I had any discomfort with them was when I'd pull on them too much when clearing them. In all honesty, I felt they were a nuisance more than anything else. I am scheduled to have surgery in August and will have 5/6 drains placed. Hoping that this time around it will be just as doable.

    All this being said, everyone is different, but I really hope that your surgery and recovery go smoothly. I suggest you go back and look at some of the previous months surgery threads, they are very helpful. It's what helped me prepare (somewhat, cause who is really completely prepared for this surgery.) I'm sure others will chime n.

    My best to you!


  • Blinx
    Blinx Member Posts: 82
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    Hi cupcake, thanks for starting this thread. I'm scheduled for a bilateral mastectomy + axillary lymph node dissection (?) same day as you -- July 6. Was at the hospital this morning to have Savi Scout locators inserted where the biopsy clips are in the left and right lymph nodes. Took the forever to find them, since chemo really reduced the size of the nodes.

    I go back on July 5 to have the dye injected. The fun never ends! Right now I'm just trying to get through all of my projects at work so I don't leave anyone in the lurch. I'm also wondering what to do about a toothache and/or gum issue that popped up. I'll try to stick it out until after surgery -- don't want anything delayed!

  • zeebs2022
    zeebs2022 Member Posts: 2
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    I had a bilateral mastectomy two weeks ago after a finding of DCIS in the same breast I had it 14 years ago. Since I had radiation back then, in consult with my oncologist and surgeon, I decided to have both removed. Like you, nipple and skin sparing with expanders. At some point in the future, reconstruction with DIEP flap

    The surgery was fine. It was a long day, but I was home and in bed by 11pm. All I needed was Tylenol for a few days for the minimal pain, gabapentin for the first week, and a two week course of antibiotics. No pain killers at all this week.

    The drains are the worst/annoying part. Just two, but ugh. No showers. Double ugh. I bought a couple of camis with removable pouches to hold the drains and sewed ribbons on the post-surgical bra from my lumpectomy earlier in the year to attach to the o-rings on the bottles to match the bra from this surgery. Having two bras is a necessity so I can wear one and wash the other. I believe I have to wear these bras for awhile. Sigh. For daily cleansing I bought “Scrubzz” no-rinse cleansing sponges. I sewed my own pillow using a pattern I found online. I can rest my iPad or book on it and it makes nice padding so I’m able to lean over the kitchen sink to wash my hair.

    The big annoyance is not being able to get anything out of upper cupboards. I moved everything down in the bathroom, but in the kitchen I expected my husband to keep things in the counter for me. He hasn’t 😡. Having a few plates, mugs, glasses, and bowls left out is a necessity.

    Good luck with the surgery. I can’t stress enough that the pain was no big deal. Maybe it was the nerves being cut, I really don’t know. Take care

  • beechcat
    beechcat Member Posts: 7
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    Stage 2 with node involvement to be determined during surgery. 68 years old and scheduled for bilateral with expanders on July 6. It all started April 11 and there have been many call backs for testing that probably should have all been done at the beginning. Also,I've been waiting for this surgery for over 6 weeks since diagnosis of tumors so plenty of time to build up some massive anxiety, which is apparently a real skill of mine. I am pretty fit for my age group... kept up my gym workout regimen until a week ago and added extra upper body workout as was recommended by a friend. With Covid cases rising here in my area, decided to self quarantine because I don't think I can handle any further delays in surgery. But I'm still working out at home. I am grateful to see comments that indicate this won't necessarily be full on misery post-op. I wish you all good things in your recovery.

  • moderators
    moderators Posts: 8,285
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    Zeebs, welcome and thank you for sharing your experience with others! Sharing the lack of pain will surely encourage all that surgery and recovery, while challenging, is also doable. We are sending healing thoughts to you!

    Beechcat, welcome to you also! Your fitness will surely help you make a quick and full recovery. We're sorry to hear of your diagnosis, but we're glad you found us and we're sending healing thoughts your way as well. Please keep us posted on how you do after surgery, to help encourage others with upcoming appointments.

    We look forward to hearing from you both in the future, and welcome again! Let us know if you need anything at all.

    --The Mods

  • icouldreallyuseacupcake
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    To everyone who has responded... THANK YOU for sharing your experiences and your support.

    @serendipity, your experience with the drains has quelled some of my anxiety surrounding that, so I appreciate you taking the time to respond.... over and over again, I'm amazed and inspired by the strength of everyone who has gone through this! It has been something that has kept me moving forward, baby step by baby step, to getting this wretched disease out of my body for good.

    @blinx, these last weeks have been such a blur with balancing work and not leaving so much for my colleagues to have to deal with for the next month while I'm out, so I hear you on that. I even had a panic attack for the first time ever last week while trying to get stuff done (as you said, good times!). Everything feels like pure adrenalin at this point. I hope that today went smoothly with your dye. I fully passed out during a clip re-placement during my last surgery, ugh, haha. I keep remembering the quote along the lines of, "Get knocked down 9 times, get up 10."

    @zeebs, thank you, too, for your encouragement on the pain. And yes, I've rearranged my closet, bathroom, but didn't even consider the kitchen cupboard point (my favorite room in the house at that, duh!). Adding that to the pile of last-minute things to do today.

    @beechcat, I have also been self-quarantining, and what a relief it was to get all of the pre-surgery tests back to know that the waiting game is over. I don't know about you, but I was a little surprised that I'll be home the same day, but what they're saying about the risk of infection makes sense. Going to do my last little yoga session today, big sigh.

    My fellow July 6th ladies, GOOD LUCK TOMORROW!! This still feels like such a blur, so surreal to me. I will be sending thoughts of strength, healing, and solidarity your way tomorrow from that pre-op room. Sending virtual (air) hugs... we've got this.

  • Blinx
    Blinx Member Posts: 82
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    Hi cupcake -- hope things went well with your surgery. Mine was long -- 6 hrs for a flat closure and axillary dissection! Even after the Savi Scout, they couldn't find one of the lymph node clips so the took them all out. Not sure how many that is. I'm staying 2 nights in the hospital. My blood pressure went very low so they're giving me fluids. But my forearms and hands are swollen. Not much pain except for where the drains are attached.

  • beechcat
    beechcat Member Posts: 7
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    Hi, Cupcake! Hope you are rocking your recovery. I'm doing remarkably well in this phase. Not much pain, just itching in some areas under bandages. I'm walking around my house about 20-30 minutes every 2 or so hours to keep all the internal organs happy and busy. Now I'm just waiting for sentinel node path and the post-op treatment plan. We got this!

  • icouldreallyuseacupcake
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    Hi blinx and beechcat!

    blinx, are you discharged from the hospital yet? I hope so, as it's so good to be recovering at home. I also was so swollen, joint and back aches, raging headache until today. I went home same day but was in recovery for 3-4 hours due to feeling like was going to pass out whenever I tried to get up. My right drain has been a little more finicky, but they are not nearly as bad as I anticipated. Whew!

    beechcat, that is such wonderful news on your recovery! I've been doing some "laps" around the house and hope to make it up the block today. Been having some pretty nasty breakthrough pain, but as long as I'm staggering the pain meds, it's been manageable.

    I have post-op tomorrow, pretty nervous for them to take off the dressings. The drains have been going in the right direction so far, which is good. There was one area of skin that wasn't getting the best blood flow, so I'm sooo hoping that the skin is surviving. One day at a time... and yes, since we got through this part, the data suggests that we sure got this! :)

  • Blinx
    Blinx Member Posts: 82
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    Hi Cupcake -- Hope your followup went well. Yes, I'm home. 2 nights in the hospital, 2 nights at my brother's house. I'm glad I could take things gradually. Had my followup with the surgeon today. All 4 drains will stay in another week. Bummer. They're mostly irritating. Found out one of the painful areas in my underarm was caused by the bra! When I showered and put the new one on I didn't adjust the should straps and it rubbed me under the the arm and left a red mark. Fixed it and felt much better. Came home from the appointment and hours later noticed I was wearing mis-matched shoes! Same style in different colors. The surgeon gave me an extra week of disability (going back on Aug 8 now). I think she took one look at my shoes and thought this girl could really use it! 😁

  • beechcat
    beechcat Member Posts: 7
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    Blinx, sounds like you had a awful lot going on and I'm sorry for that. Are you home yet? Wishing you a better-than-expected recovery.

  • beechcat
    beechcat Member Posts: 7
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    Blinx, not used to message boards.. ya know, 68 and all. Glad you are healing. Maybe mis-matched shoes are your new signature style? Keep getting better!

  • beechcat
    beechcat Member Posts: 7
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    Have my follow up with plastic surgeon today. He already told me the drains won't come out this week, so my hopes of that were dashed prior to surgery. Oh well! Path on sentinel node was negative but one of the three tumors was concerning. The next step is for the oncologist to look at the mammoprint to determine any post-op treatment. I am incredibly lucky I paid out of pocket for annual MRI, because the largest of the three would have changed my outcome significantly if it had continued another 6 months.. Wishing everyone nothing but good news moving forward.

  • Blinx
    Blinx Member Posts: 82
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    Thanks for all the well-wishes. I found out 2 things. One reason the surgery took longer than expected (besides the lymph nodes) was because I had whole breast radiation on one side back in 2007. It really changed the texture of the breast tissue, making it more difficult to work with. The other thing is that the tumor was T4a, meaning that it was large and went into the chest wall (still considered Stage 3 cancer though). I didn't quite realize that. Otherwise, I'm doing well. I've been home for a few days. Happy that I can sleep on my side. It's the small things, right?

  • dani_p
    dani_p Member Posts: 36
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    I guess I'm joining the July club.....my BMX with tissue expander placement is scheduled for 7/29. I have pre-op with the plastic surgeon next week. It's been encouraging to read your messages. Hope everyone is recovering well!

  • icouldreallyuseacupcake
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    blinx, late to the party on your shoes mismatch debacle, haha! If it helped get you those extra few days off work... hey, whatever it takes ;) I'm able to consistently sit up on my own now, too, so I hear you on the "little things" being a big deal. I'm also able to start to space out the pain meds more, which is very welcomed.

    beechcat, same here on the pesky drains! Have another post-op on Friday, so I'm hoping they can come out prior to the weekend. Wow will things be easier once those are out. The surgical bra has been causing skin irritation, too, which has been difficult to differentiate if it's been the bra that's been a little painful, the drains, or an area of skin nearby that's not getting the best blood flow and we're hoping will survive. We shall see.

    Dani, welcome to the chat! ...and sorry to welcome you to the July club. I must say that this whole process has been FAR more manageable than I anticipated. My number one recommendation is to get a wedge pillow, if you don't already have one. It's been a game changer!

  • dani_p
    dani_p Member Posts: 36
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    Cupcake-

    I did just order a wedge pillow from Amazon, as well as a few other things I may or may not need. I do have a question about the drains. Are they at all manageable on your own? My husband is SUPER squeamish about stuff like that and I feel like he's really going to struggle (hahaha). I've been trying to ease him into his upcoming role as nurse - but I know the drains are going to be an issue. Did you (or anyone) have enough range of motion to do the milking/emptying yourself?

  • icouldreallyuseacupcake
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    Hi Dani- If he can stand it for the first three days or so, I would recommend that. I think that you would have the range of motion, but it would be much easier if he could do it for those first few times, especially for the milking part toward the entry point. We asked the nurse for extra alcohol wipes, which helps with gripping the tube, and I also ordered a box of surgical gloves online, which have been useful. We labeled each cup top with an "L" and an "R", and my surgeon provided us with a simple output sheet to log everything.

    I also made a little notebook to keep track of medications, with columns for date/time, type of med, and amount. Since there is soooo much to keep track of, that has been so useful; needless to say, both of our memories are pretty shot to keep track of such details!

  • spartybuckeye
    spartybuckeye Member Posts: 11
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    Hello! I had my BMX on Friday July 8. Recovery is going well. My fun started back in April with a routine mammogram. I had been called back twice before so wasn’t too concerned. Three biopsies were positive and the node negative. That led to MRI and more biopsies on the other side, those were benign. Just got my pathology back and had two nodes positive and they labeled two tumors as one because there were areas of IDC/DCIS in between. So I will find out my staging when I got for my post op, but I’m most likely looking at chemo and rads.

    Dani, I agree with cupcake, it would be easier if your husband could milk them the first several days. It isn’t that bad. We use the alcohol pads too , so you may want to pick some up so you don’t forget to ask.


    I hope everyone who has already had their surgery are feeling well. I am so looking forward to losing the drains. One side is really annoying

  • Blinx
    Blinx Member Posts: 82
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    Cupcake -- I hear you on the bra irritations, especially in this heat! The bottom of the bra keeps rolling up and then digging in on the left side drains -- I have to keep unrolling it and tugging it down. The pads they gave me to fit over the incisions kept moving around -- the surgeon said I could ditch them if they weren't working for me. The visiting nurse suggested wearing a cotton cami or cut up an old Tshirt to wear under the bra -- might cut back on some irritation. I haven't tried it yet, but I think I have an old cotton tank top I could cut up the middle. Well see.

  • beechcat
    beechcat Member Posts: 7
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    Dani, it really would help if your hubs could manage the drains. Also, my surgeon gave me apron-like belts with pockets for the drains and they were quite helpful. As Cupcake said, keeping a spreadsheet for meds was a great.help. No one has mentioned this but both the nausea and pain narcotic will cause dreadful constipation. My RN friend laughed at me for getting magnesium citrate (said that was like using a nuclear weapon instead of a firecracker) but I ended up needing it. I was concerned about the 'big reveal' when bandages were changed. It was a ewww-moment, but not a huge deal. I am scheduled for drain removal on Tuesday and I think that will be a big accelerator in the recovery process..Plastic also plans to start filling expanders and I'm a little concerned that is a bit premature. However only one of us went to med school so I'm trusting his judgement, Best wishes to everyone on this thread!

  • Blinx
    Blinx Member Posts: 82
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    Surgery was 2 weeks ago. I had my 2nd followup with the surgeon today -- everything is looking good. As expected, I only had 2 drains removed. Hoping to get the other 2 out next week. My surgeon must be a wizard or something. She was talking to me, telling me to breathe in/out, and whoosh! The drains were gone. I didn't feel a thing! I'll be able to sleep on that side tonight -- yeah!

    Pathology report had no surprises. No new tumors, just evidence of dead ones where the chemo killed them. So that's good.

    I got permission to use different bras and to sleep without one if I want. I've had a lot of trouble sleeping, so this should help. Hope everyone else is doing well.

  • icouldreallyuseacupcake
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    Happy to read that others had drains out! Such a game changer!

    I also had the left drain removed early last week, and the right one removed a few days later. My surgeon stitched and used a lot of glue on the left, so it took an RN and a PA to get it removed. The right drain was holding steady at 29mls per day, but they went ahead and removed it on the basis that risk of infection was riskier than getting pooling. Removal was a breeze.

    Beechcat, I had a similar reaction when they took the bandages off; I thought it would be hard to see, but I felt totally fine and at peace with it. I felt more a sense of relief that the worst was over and thinking of the day that I can move on with my life and not have this dictate everything.

    They found more LCIS on both sides, which reaffirmed that it was the right decision for me to go through this now versus later. My mom, grandmother, great grandmother, and great aunt all went through this, though I tested negative for all genetic markers. I'm convinced it's a mutation that has yet to be discovered.

    Beechcat, please do keep us posted on your progress/experience with the expanders; I'm curious what that's going to be like.

  • emmaleah
    emmaleah Member Posts: 17
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    Hi all, happy to hear of generally not-terrible pain and generally manageable-ish hassles post-op. I'm having a lumpectomy surgery tomorrow 7/27 for a 3mm biopsy-diagnosed DCIS plus a 6mm nearby mass found on MRI. I have a Savi-Scout in place, about which my neighbor said "Beeping boobs are so 21st century!" which made me laugh.

    Having an ebb and flow of emotions right now ranging across anxiety about findings, fear of surgery and pain, a kind of sadness/grief, yet thankfulness for catching it early stage, plus a more matter-of-fact let's-get-it-done energy. Hope to be resting back at home in 24 hrs after a successful surgery. Solidarity, healing, and all the best on next steps to all of you.

  • Blinx
    Blinx Member Posts: 82
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    Hi Emmaleah -- Hope everything went well with your surgery today. I had the SaviScout placed and you're right -- it's so high tech!

    I'm 3 weeks post op from my BMX. Had 2 drains removed last week and 2 removed today. Phew!! So glad that they are gone. I didn't feel like going anywhere with those in. Now I might do some food shopping or mall walking. I have a week and half before I go back to work.

    My surgeon was on vacation so the drains were removed by the nurse practioner. I asked her when my next follow -up will be, and she said that once the drains are out it might not be for 6 months! They're going to check on that -- seems like a long time to me. I also asked for an Rx for prostheses, but they said that since I'll be getting radiation, it wouldn't be until after that, since the skin and/or appearence may change. I was also wondering about some of the lumpy parts of the incision near my sides, but that will probably need to wait too. I have chemo next week and will be seeing my main oncologist -- she can let me know what the order is for everything.

  • emmaleah
    emmaleah Member Posts: 17
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    Hi Blinx- Thanks! Congrats on getting your drains out. Sounds like good signal of healing in addition to being free from the hassle, yay!

    Maybe the incision questions like about the lumpy part could be answered by the surgeon's office via phone sooner than six months out. Not sure if relevant to this, but I had thyroid cancer surgery nine years ago and had a weirdly lumpy and hard part of my overall incision area, involving muscle layers, which all smoothed out slowly but completely.

    My lumpectomy surgery went as expected yesterday and I got home by early afternoon. So far managing ok with OTC pain meds and an ice pack. Taking slow walks and that feels good.


  • emmaleah
    emmaleah Member Posts: 17
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    Dani, all the best tomorrow. Hope surgery goes just as expected and that the recuping is as easy as possible. You got this. Sending strength from your July surgery sisters.

  • spartybuckeye
    spartybuckeye Member Posts: 11
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    emmaleah - I hope your recovery is going well!

    dani - Thinking of you! For me it wasn’t as bad as I thought. Not fun, but manageable.

    I am just about three weeks out and feel pretty good. I got the drains out about 10 days after surgery and was extremely grateful. I have had the tissue expanders filled three times. This has honestly been the worse part. My plastic surgeon wanted to be aggressive because of radiation, but it looks like I’ll have to have chemo so we can back off on expanding.

  • dani_p
    dani_p Member Posts: 36
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    Thanks, everybody! I can't believe it's the night before already. I'm just trying to get everything as ready as I can. I've been happy to read that everyone has seemed to be recovering well.

    Sparty - the expanders is maybe what scares me the most. I have an appointment with the plastic surgeon next Thursday for a fill, and he wants to be "very aggressive" with the first fill, because he says the more "pressure" is put on the things that may be leaking, the sooner I can get my drains out.

    I've never in my life had major surgery. I just don't know what to expect, and my Type A brain is going nuts over the "what ifs."


  • happyhiker1
    happyhiker1 Member Posts: 26
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    Trying to find advice about a blocked drain after mastectomy day before yesterday, saw a nurse today but she didn't seem able to resolve the problem. Only other option is long wait at emergency where they would have the equipment to 'deblock' the drain higher up. Anyone else have or hear of this problem?? Really annoying, bad enough to endure the surgery, only to have another problem to resolve.

    Thanks!