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January 2021 Surgery Group

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124

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  • annsoptera
    annsoptera Member Posts: 27
    edited January 2021
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    Hello everyone,

    Much like GreenOutdoors, I'm joining this topic a bit late because I too just found out last week that my BMX (flat closure) is scheduled for Jan 25. I've spent the last several days scrambling to get ready for that especially with work. I've really appreciated hearing about everyone's experiences so far and the great wisdom and advice being shared here. Thank you!

    My surgery is scheduled for 12 to 4 pm, so they've told me that I should expect to stay overnight, but there's still a chance they'll send me home (!). As much as I'd rather be at home, I can't imagine being carted out to the curb a few hours after that ordeal. And speaking of which, due to covid, I will be in the surgery center alone the entire time. My spouse can drop me off in the morning and come back to collect me at discharge. And I have to get a covid test this Friday. As much as I'm relieved to be having the surgery in a (hopefully) covid-free facility, the idea of being alone when I wake up and for hours (perhaps many) after that is a bummer. I had a prophylactic salpingo-oophorectomy 2 years ago right after learning about the BCRA2+, and I was so glad to have my spouse there while I was in recovery.

    Best wishes to all of you, and I hope you're managing well at whatever stage of the surgery path you're on today! Take care.

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited January 2021
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    Thank you for adding me to the list Kimberly1981! I was told that I would be staying overnight, I can’t imagine outpatient surgery for this, and also cannot believe it is a thing. It must be so hard on the caregiver.


    AnnSOptera, I know what you mean about scrambling to get ready while keeping a job and going to pre-op appointments. At least being busy, I don’t have time to think about how sad it is to go to all these appointments alone, and then surgery with no one waiting for you in recovery. Just think that in 8 days we will both be past this one big hurdle and back home! (Well, as long as we test covid negative😬).

    • marie914
      marie914 Member Posts: 152
      edited January 2021
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      I had a left mastectomy and expander put in on September 14. I went home that evening. I thought it went fine and liked that I was home and my husband could take care of me. He was better than the overworked nurses bringing me pain meds, doing the drains, and bringing me drinks and food. However he said he was scared the whole time. :) The home nurse came the night of surgery and showed him how to do the drains so that was good and she came every day for about a week until both drains were out. I would recommend a home nurse if your insurance pays for one since it did help my husband feel better about the whole thing.

    • KnitNerd
      KnitNerd Member Posts: 19
      edited January 2021
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      AnnSOptera and GreenOutdoors — I did surgery yesterday alone and it wasn’t too bad. Husband dropped me off at 8am for wire placement and then surgery ran behind so I was sitting around until 2:30 before they finally took me in. Doctors and nurses were great and totally understanding of the situation. Maybe see if you can at least have someone in recovery when you wake up.

      So did my lumpectomy and reduction yesterday. Because this is DCIS, doctor opted to not take lymph nodes and will worry about that based on pathology of the lump she took out. If the DCIS was contained, we can skip it. Last night was rough but manageable.I didn’t sleep well because I was drinking lots of water to flush out anesthesia so was up to pee every hour. I bought a wedge pillow to sleep on and that helped a bit. Feeling much better today. Ibuprofen is doing fine so far and my butt is on the couch. I can’t take my bandages off until tonight so have no idea how this all looks. Hope they gave me sparkly purple boobs but doubt it. ;) Overall, it sucked but I’m glad it’s over. Moving on and digging into my binge TV list I’ve been saving for this.

    • jasmin2020
      jasmin2020 Member Posts: 11
      edited January 2021
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      Hi everyone,

      I hope you are all doing as well as you possibly can and for those whose surgeries are behind you--so glad you are now in the healing and recovery phase!

      We made it to NYC for my double mastectomy with immediate reconstruction/tissue expanders (I have high-grade DCIS with microinvasion, which I think is technically stage 1 but wasn't able to change it in my signature). The surgery is happening on Thursday. A couple of days ago I received an email from the the hospital saying that they are offering several types of regional nerve block procedures right before surgery if I choose to have them. They are supposed to help with both short-term and long-term pain and apparently women who do this nerve block stuff don't need to take opioids nearly as much. It all makes sense to me but I am absolutely terrified! I had a bad reaction with my epidural once and am worried in general about anesthesia... so this is just one more thing that I wasn't expecting to have to worry about.

      Are any of you opting to do this, too, or have you had any experience with it?

      Also, has any of you had your nuclear node mapping done already? I have it tomorrow, and I find that quite scary also, though not as much as the surgery itself.

      Thank you for all your stories and support!

    • Danavice
      Danavice Member Posts: 12
      edited January 2021
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      When I had my lumpectomy 2 years ago and my brother, sister-in-law, Dad, and two best friends all showed up for moral support (at 6:30 am) and stayed through to see me home that evening: I remember thinking, "holy hannah, too many people! we look like we're crazy!"... now, we don't even have our one person in recovery. So different! My only worry about being alone is missing out on instructions or feedback about the surgery (specifically the lymph nodes) whilst in the fog of anaesthesia.

      Jasmin: Denise ML mentioned the nerve block in her post on the previous page.

      Good luck on Thursday, Jasmin and Kimberly! And Happy Healing Vibes to everyone who's had surgery so far... Rockstars, the lot of you!

    • kimberly1981
      kimberly1981 Member Posts: 30
      edited January 2021
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      AnnSOptera - Welcome and your surgery has been added to the main post. The being dropped off and picked up curbside post surgery is one of the more shitty indignities of having cancer during a pandemic. Best of luck in your surgery!

      GreenOutdoors - I'm lucky to have my husband, mom, and sister all at the ready to help when I get home. Hopefully with three of them they won't feel so overwhelmed or scared. I was thinking maybe staying over in the hospital wouldn't be so bad until a friend who is a nurse there sent a picture of their new outdoor morgue, so thinking the less time with risk of exposure the better!

      marie914 - That's great you had a home nurse! You'd think it would be standard with all of us they're sending home. I've explained to my husband the drain tutorial I was given at my pre-op but I'm guessing it will be a comedy of errors the first few times while I'm still doped up and trying to help.

      KnitNerd - Ha!! Sparkly purple boobs would be amazing! I've decided rather than nipple tattoos I might just do a whole chest tattoo down the road. Thinking the universe with planets where the nipples should be would be pretty rad. :D Congrats on being done with this part of surgery and I hope you heal super fast!

      Jasmin2020 - I don't think I have any say in the type of pain meds they give me during the procedure - though I suppose they could always spring another decision I don't feel equipped to make on me when I get there. I also had weird reaction to my epidural - insane itching that felt like fire ants biting me - so hopefully it's not that! What time does your surgery start on Thursday? Mine's at 12:30pm PT.

      Danavice - Thank you! Very excited to get this part of cancer over with!

      Had my COVID test today - fingers crossed it's negative and then it's a go for Thursday. Already not sleeping worrying about it, but ready to get this show on the road. MEM127 & KBax8 - I hope your surgeries went smoothly today!


    • KnitNerd
      KnitNerd Member Posts: 19
      edited January 2021
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      Danavice — My doctor gave me a post-op rundown during pre-op and I wrote some things down. Also had him call my husband and give him mor directions. Either or both can work. Because yeah, recovery fog is real. I thought I was in recovery for 10 minutes but it was an hour.

      I definitely was having trouble sleeping before surgery but by the time the day finally showed up, I was just glad to get it over with. You guys got this!

    • Danavice
      Danavice Member Posts: 12
      edited January 2021
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      Knitnerd: Great idea on having surgeon call your husband. I am going to ask for same. So far it is still an overnight stay for the BMX, so hoping that the nurses will repeat anything I need to know, too. In Ontario we get a home nurse every day for drain management, whew! Btw, I think the home-nurses are amazing to come into anyone's home right now!! Super grateful.

    • deniseml
      deniseml Member Posts: 68
      edited January 2021
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      Hi Jasmin2020. I had surgery on 1/15 and did receive a nerve block after I was under general anesthesia. I was very happy with results. Taking Tylenol, Ibuprofen & Tramadol on a schedule which is controlling pain nicely. Feeling like my self so have to remind myself not to over do it. Nerve block worked for 1st 2 days, but, not finding pain any worse at this time. Good luck with surgery. Will keep you in my thoughts & prayers

    • KLMN
      KLMN Member Posts: 9
      edited January 2021
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      Hi Jasmin2020

      I did the nuclear mapping last Thursday before my BMX on Friday and it was no problem at all. Very easy!


      I also chose to have the nerve blockers so I could reduce the opioid use. It was 4 shots in my back. They did cover the risks but I felt it was very low. She also said it was not like an epidural - it would not go into spinal column. I think it helped with the pain for the first 3 days.

      I wish you great luck tomorrow! You will do great.

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      Checking back in. I had my lumpectomy/SNB R, excisional biopsy L on Tuesday morning. All went well. I was the first one scheduled and was back home by noon. Other than some soreness, I have to say I am surprised at how easy this recovery is. I was expecting to be a lot more uncomfortable, so I am very grateful. I hope everyone else is recuperating well. I know many of your surgeries were a lot more involved than mine. But if anyone has a lumpectomy coming up, don't be too nervous. It really isn't that bad. I thought the couple days after getting my gallbladder out was much more limiting.

    • kimberly1981
      kimberly1981 Member Posts: 30
      edited January 2021
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      I'm done and back home! I had some trouble coming out of the anesthesia fog and then puked so they kept me over night. Everything went fine and both surgeons were able to accomplish what we planned. I'm in pain today, but manageable with tylenol and ibuprofen so far. They gave me some type of nerve block before surgery so that might be helping too.

      For those of you still waiting on surgery - take bag with a few essentials just in case they tell you you might go home same day and you aren't able to (especially a charger for your phone!).

      Here's my schedule in case you find it useful to know what you're in for:

      10:00 am check in - this includes putting all of your clothes in plastic bags, wiping your whole body down with chlorohexidrine wipes, changing in gown/robe, getting blood drawn, then waiting

      11:00 am - sent to nuclear medicine to get injected with radioactive dye and xrays to help the surgeon find those nodes for the SLNB

      12:00 pm - Moved to the pre-op room to get IV, confirm you know why you're there, and see your surgeons (whole will mark up your chest) and anesthesiologist

      12:30 pm - Moved to operating room, starts putting you to sleep and if you're having a nerve block that happens first

      1:00 pm - 4:30 pm - lymph node removal and mastectomy with breast surgeon

      4:30 pm - 6:30 pm - reconstruction (direct to implants) with plastic surgeon

      6:30 pm - moved to recovery room - not idea what happened after that!


      One more note - where I am no one was allowed to come with you which sucked because it meant you had to wait for a nurse to come by (or ring them) for every little thing because you won't be able to get out of the bed easily or reach more that a foot away (for BMX, not sure on lumpectomy). It was pretty frustrating, but at least it was just one night!

    • KnitNerd
      KnitNerd Member Posts: 19
      edited January 2021
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      kimberly1981 — Glad you’re done and moving on! I had issues with nausea with the anesthesia for my first c-section so they gave me some anti-nausea medication in my IV. I still felt nauseous but no vomiting. May ask for a barf bucket in recovery for the next one just in case.

      I’ve switched to my sports bras, which has been good. Cutting back on my pain meds — I think they’re making me a little constipated. Still can’t sleep on my back well at all. I’ve now built a nest of pillows so we’ll see how this goes tonight. Chugging along and looking forward to my first post-op appointment on Monday.

      For those who did a lumpectomy/reduction, I’m assuming this stiff feeling and lumpy, uneven look is normal, right? At least that’s what I keep trying to tell myself.

    • annsoptera
      annsoptera Member Posts: 27
      edited January 2021
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      kimberly1981 - Thanks so much for letting us know how things went for you and that you’re back home and starting your recovery. I’m glad that the pain had been manageable so far. I particularly appreciated you sharing your chronology for the day, as that sounds very similar to what I’m expecting on Monday (I have a 10:30 and 12 noon surgery start). I’m not doing reconstruction so they expect to finish my surgery by 4:30. The difficulty getting assistance from the nurses (and having no one else there to help) does sound pretty frustrating. I hope you’re getting plenty of help now that you’re at home.

      MEM127 - I’m glad to hear all went well with you and that you’re not in too much discomfort so far.

      KnitNerd - I hope your pillow strategy brings you some rest and relief tonight!

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      Good luck on Monday AnnSOptera! I hope it all goes well and you can be on the couch with the rest of us soon.

      Kimberly1981 - glad you are already on the mend. Stay on top of the ibupfrofin and Tylenol.

      Knitnerd - I don’t feel too lumpy, but both breasts are very colorful. The only part that is bothering me is the incision for the lymph node, which is irritating.

      I just saw my pathology results online and unfortunately, I think I am looking at more surgery (I jinxed myself saying the recovery was better than I expected!). The doctor should be calling Monday, but from what I can reading, the DCIS was more extensive than they thought (the report says they couldn’t estimate the size because it was present on multiple samples and slides), the margins were positive, and they couldn’t rule out a microinvasion (it adds “suspicious but not felt to be diagnostic,” whatever that means). There are also two areas of DCIS where we thought there was only one. The grade 3 ER negative that we knew about and a grade 2 ER positive that is new. I don’t know what any of this means, but I’m guessing it means I am not going straight to radiation in a few weeks! The good news is the left breast was all benign. So that’s something.

    • NotAsCalmAsILook
      NotAsCalmAsILook Member Posts: 133
      edited January 2021
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      omg - I wore a t shirt today. Without buttons! I put it on and took it off by myself!!!! Yay!!!

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      Woohoo!

    • Danavice
      Danavice Member Posts: 12
      edited January 2021
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      NotAsCalm: Right on!!

      MEM127: When do you see your BS to discuss results?

      AnnSOptera and GreenOutdoors: Sending out good vibes for your surgeries tomorrow!


    • jasmin2020
      jasmin2020 Member Posts: 11
      edited January 2021
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      Hello everyone,

      I'm sorry I didn't give an update sooner. I had surgery on 1/21 with immediate reconstruction (tissue expanders). I opted to get nerve blocks prior to surgery. I was really really nervous about it all, but they gave me a "cocktail" of sedatives and as soon as that was in, things went very smoothly for me. I would highly recommend the nerve block procedure as it was really not that bad or scary and it helped a lot I think. I had mentioned to the surgeons that I had had severe nausea with previous surgeries, so they gave me a pill before the procedure and they also placed a motion sickness patch behind my ear. I had ZERO nausea waking up from the anesthesia and only minor pain thanks to the nerve block. I spent one night at the hospital where they taught me how to take care of the drains and had me walk as much as possible and start on food. The pain did get a little bit worse when I got discharged (probably as the nerve block effect faded) but so far I've been able to manage just with Tylenol (I can't take advil bc of stomach issues) and I haven't had to take any opioids. I think the "pain" is really mostly tightness in the chest. I've been doing my exercises religiously and it seems to be helping a lot. I'm now on day 3 post-op, very tired still but feeling positive. Yesterday I felt a bit sad--I was told that is completely normal and not to be alarmed if your emotions are all over the place.

      To those of you who are still waiting to have surgery: It wasn't nearly as bad as I thought! The recovery does take some time but there is also a lot of relief that the procedure is behind you and that the cancer is out.

      Wishing you all a smooth recovery and to those who have the surgery still coming up, feel free to message me if you have any questions!

      Lots of good vibes to everyone!!!

    • Alcie1
      Alcie1 Member Posts: 7
      edited January 2021
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      Second time around after 11 years. Same breast. ++-

      I got dropped off on the 12th and picked up after many hours. Hubby drive me home, but I had to take care of myself. Next morning I woke up with Covid. I ran a fever for a couple of days, told the calling nurse I was sick. Still had to take care of myself. Hubby got tested, positive, but no symptoms. I'm sure I got it from him since his office girl had it.

      I had to argue at length with my surgeon a couple of weeks before surgery that since I am allergic to sulfites he couldn't give me Isosulfan blue for lymph node tracing. He used methylene blue which has no sulfite. I had the same discussion with my previous surgeon 11 years ago.

      I really hate my new koala boob. I don't know how it happened. I am large, saggy on the right and the left matched after the first surgery. Now the left is a huge round ball with a koala nose. I can't live with it. I'll talk to the surgeon when I finally get to see him this week. He never told me anything about the new circumareolar incision that seems popular right now. My old incision was a straight cut at the site of the tumor, nearly invisible. The new incision is rough, nipple indented/retracted somewhere inside. The breast is swollen, hard and hurts a lot.

      Since I'm over 75 I think I will refuse radiation. I had it last time and it cause hardness and pain and lymphatic cording that has never completely gone away. The cording came back with a vengeance after lymph node biopsy and hurts a lot now. The lymph technician says they don't break the cords any more, just massage them. I had it crushed before and it helped a lot. This time radiation would hit my heart which is bad enough, so I'll follow the latest research that says don't do it. Unless oncotype ways different.

      Pain is pretty bad. I have a pain doctor from having several bad conditions, but nothing helps. I never responded much to opioids and now don't get any relief at all from them. Over the years I've tried about every alternative pain relief, but they don't really do much. My only option is distraction. Thank God for grandchildren. I teach them science, music and how to run the farm machinery.

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      Alcie1 - Covid on top of surgery, that is the pits! I hope you are feeling more comfortable soon. Maybe stay off the farm machinery in the meantime!

    • KLMN
      KLMN Member Posts: 9
      edited January 2021
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      Alcoe1 - I am sorry to hear about the pain and the COVID, but glad to hear your grandkids are helping to bring you joy. Hope you feel better soon!


      Jasmine2020 - sounds like you did great! Happy to hear that! For me some of the earlier days were better than the later days - but I think that is the healing process.


      MEM127 - I had the experience with lumpectomy where they found DCIS and had to do a re-excision (twice) Just wanted you to know that although it sounds awful to go back in and have them cut in the same place - all 3 of those surgeries went well and recovery was similar for all - so try not to worry!

      Also my surgeon said it is very rare to have to do more than one re-excision so I am hopeful that they will get it all for you if you do need it! Glad to hear the other side was benign. Hang in there.

      Update: I am 9 days post surgery - have not needed opioids since day 3 - managing with Tylenol only. I now understand what everybody means about it feeling like you have a really tight sports bra on 24/7 It is uncomfortable but tolerable. For me, the biggest issue is sleeping on my back. I think my back pain is worse than the front! And I have an adjustable sleep number bed. Still can’t sleep well on my back 2.5 more weeks to go...

      I still have my drains in, but fluid is dropping and I am hoping to get one out tomorrow and one on Tuesday. Have any of you taken your own drains out at home? I’m thinking of having my husband do it…once they give me the ok. He is worried I will not be happy about it - hahah

      Good luck to all who still have surgery coming up this week.You got this!!!



    • NotAsCalmAsILook
      NotAsCalmAsILook Member Posts: 133
      edited January 2021
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      Klmn: my daughter is an RN and took out my second drain at home (with the dr. Office ok). It was smoother than the one at the doctor ...


    • KLMN
      KLMN Member Posts: 9
      edited January 2021
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      NotAsCalmAsILook - that is interesting! She must be a great RN! Not sure if that makes me feel better or worse about doing at home Hahaha. It sounds awful but then again I am so ready to get them out I may be brave enough to go for it!

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      KLMN - Thanks for sharing your experience. I'll let you know what the doc says tomorrow.

      Is anyone else losing their mind with alllllll of their family home with them? I need this pandemic to end, and my kids to get back to school and college, and my husband to chill out. Or maybe I just need to move out. LOL

    • indahood
      indahood Member Posts: 122
      edited January 2021
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      jan 14, double mastectomy with DIEP flap rebuild.

    • indahood
      indahood Member Posts: 122
      edited January 2021
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      oops not sure if I'm in the right place. I just had a Bilateral Mastectomy with DIEP flap reconstruction. I stayed 8 days in hospital while they made sure my tissue was not rejected. Thought I'd breeze through since the lumpectomy I had in 2018 was pretty easy day surgery. This one was so hard. I was 14 hours under and the effects of the anestesia post op and for the remainder of my stay were my worst challenge. Feeling good now. Home, did a 1.5 hour walk today, not fast, not far but lovely. Same here in Canada, no visitors, curb side drop and pick up.

      Glad to be home.

      Laurie

    • MEM127
      MEM127 Member Posts: 18
      edited January 2021
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      Welcome indahood! That's a long hospital stay with no visitors, I'm glad you are home now. I'm also very impressed you went for that long a walk already! Curious - you didn't post a new diagnosis, why did you have a BMX now?

    • Susiemommy
      Susiemommy Member Posts: 46
      edited January 2021
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      Well, I'm almost 20 days past surgery (lumpectomy with mastopexy reduction and SNB), and things feel weird. I feel like I'm in the holding pattern waiting for something to happen, and I have no idea what. Finished with chemo, finished with surgery, waiting for radiation and hormone blockers. I think this pandemic might finally be getting to me. Anyway,,,I go tomorrow to have a PT assessment done to establish a baseline to watch for lymphedema. Has anyone else done this? I was fortunate that they only had to take one sentinel node (which turned out to be cancer free -so YAY!), but that incision and my entire left arm have really been the biggest source of pain, so I'm curious if that's just standard.

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