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2018 - February Surgery Support Group

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Comments

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    also the gave me an expanded compression bra.. it has Velcro too anyone wear that

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    I was just given a much too loose tube top from the hospital. I was never told I had to wear anything which I'm really not wearing anything most days. However I'm on day 10 and I'm still having too much output for these drains to come out anytime soon. Were any of you told to wear something with compression? I'd imagine that'd be very uncomfortable but also wonder if it would decrease my drain output.

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018

    On one of the threads, I had read that Nordstrom’s has certified fitters for post mastectomy. I had an appt just today with her. I had bought a Hanes Cool Comfort the other day at Walmart that was extremely uncomfortable for me. The Nordstrom fitter was great. They will also bill insurance directly, if your insurance offers this as a benefit.

    I was nervous about having someone other than hubby, BS, and PS see my chest, but she was very professional and understanding of the situation.

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018

    I had to wear the Aomena post surgical compression bra for 3 weeks. My PS wanted the compression.

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    my bra is Velcro shut compression but straps are too long and don’t really do anything...

  • Strengthandjoy
    Strengthandjoy Member Posts: 51
    edited February 2018

    I have to wear a Velcro front compression bra too. The straps Velcro and around near my drains Velcros too. I think I wear this for 3 weeks as well. They gave me two. It isn’t uncomfortable. It is fine.

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    thanks armpits are getting raw guess I will put some neosporin there..

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    my discharge nurse neglected telling me that I’m to wear some kind of bra but at first post op PS said just something for support, non underwire, to help keep things in place while things heal up. Just found something at Walmart until after fat grafting gets done and I know exactly what size things end up being.

    On that note, I’m going to a wedding this summer not long after I should be recovered from everything and am ready to rock some kind of dress that I can get away with no bra ;) hoping some of that liposuction comes from pesky places!

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited February 2018

    jt3- miralax did it for me .. or maybe it was my mom (a former nurse) threatening a suppository that gave me the extra boost 😉. She also did a toilet check to verify I wasn’t fibbing lol

    The surgical compression bra only until drains are out then I switched to a surgical cami which I had on hand because I was supposed to have immediateDIEP reconstruction. I love the cami! It’s really soft and comfortable but gives support and goes pretty high under the arm to contain swelling.


  • 32b
    32b Member Posts: 188
    edited February 2018

    My PS said not to wear anything too tight so I've just been sporting tank tops and no bra.

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    Anyone almost 2 weeks post mastectomy and still having the burning lead chest feeling? I don't know if it's the tissue expanders or if it's the fact that I started out with small wimpy pec muscles, but I am uncomfortable all day and night. My back and sides are even starting to ache when I sit. I feel like I did when I was 9 months pregnant and just uncomfortable plus the added boob pain. It's getting to the point where I think I'm becoming depressed and pathetic-like. I knew this wasn't going to be any picnic and I feel like I shouldn't whine since I don't have to do chemo and radiation like others. But then I read how others are doing so good and I feel like a wimp.

  • 32b
    32b Member Posts: 188
    edited February 2018

    Hi Nursepatient,

    I'm 16 days out and feeling worse today for the first time in a week and a half. Tightness in the chest mostly, and just general discomfort. Tender/raw/irritated skin on my underarm. Occasional phantom twinges from the nipple I no longer really have.

    Sometimes I feel like I'm almost back to 100%, other times I worry that something's wrong, but I think this is just a long process that's different for everyone. Hang in there. Just realized you had a BMX. You're not a wimp; you're an epic trooper! I'd have gone nuts day 1 if I didn't have one "good" arm.

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    32B,

    I'm sorry you're feeling crappy too. I do however thank you for responding and making me feel like I'm not alone. My family and especially husband have been awesome but I have been in such a funk this weekend. I was feeling so good and was so upbeat as I was feeling better throughout the week but then the weekend hit and I hit a wall. I guess we just have to remember this is all going to take time. I also don't think it helps that I haven't left the house other than Dr appt for almost 2 weeks. And although it should feel like a dream that my husband and kids won't let me do any chores around the house, I feel completely bored and useless.

    Here's to better days for all of us. Wishing you a painless, sleep full night and again thank you for your support.

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    I hope everyone is doing well And has great distractions from what ails you! I called Dr because 4 Days is too much constipation and the Fleet Enema provided relief. Adding this to the post surgery checklist

  • ValentineBMX
    ValentineBMX Member Posts: 5
    edited February 2018

    Hello Sister warriors! I hope everyone is doing well in their individual journey. Sorry for the delayed post. They had a difficult time in the hospital controlling my pain after my bilateral BMX and lymph node dissection. This continued at home but as of today I'm pushing through with only Tylenol and Ativan. These expanders still feel as if I am wearing a hard plastic bra or top. Not comfortable! I only hope it improves a bit after the other 2 drains are out tomorrow. I have to wear the TEs through radiation treatments too. Scared

    I also needed time to come to terms with the metastatic cancer found in 12 of my axillary nodes. I'll have a PET scan 4 weeks after surgery (approximately 3/14). Wednesday, we are driving about 2 hours to a top, regional cancer center, The James Cancer Center at Ohio State University, for a consultation/second opinion appointment and to discuss clinical trials. Is anyone familiar with this cancer center?

    Thanks for all the great tips I've read on this site. They have been a big help Before, During and After!

    Keep fighting the fight, ladies! My husband says I'm the warrior and he just carries my shield!


    Blessings to all!

    Heart

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    Hi VBMX,

    It’s good to hear the pain management has gotten better and so sorry to hear about all the nodes as well. What a blessing to have such a supportive husband! I am keeping you in my thoughts and prayers

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    Hi 32B, does neosporin Help? It helps around this compression bra line

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    Some healing humor ...

    Ido often appreciate that I’m recovering from this in the middle of winter and don’t feel like I’m missing out on summer fun and not worrying about shaving because my reach won’t allow. But sitting by the window this morning and catching a little bit of sunshine this is how I felt ...

    image

  • itsstillme
    itsstillme Member Posts: 48
    edited February 2018

    Tomorrow is my surgery. I think I am the last one in this group. I have done all my checklist preparation, but I’m really getting anxious. I just want this to be over with. It’s been such a long road so far. Thank you all for sharing your experiences along the way.

  • SarahB57
    SarahB57 Member Posts: 2
    edited February 2018

    I am so glad I found this topic! I have stage 2 hormone postive HER2 neg cancer and just had surgery Feb 6th. My doc recommended lumpectomy and removal of lymph nodes since cancer cells were present. He was able to get it all in the one surgery! I had 21 lymph nodes removed and 4 contained cancer. While I have a good Onco score (8) I will end up doing chemo because of the 4 lymph nodes. The cut off was 3 for no chemo. I am terrified of chemo but am thinking of myself as a warrior and going into battle to get this DONE! Still sore from surgery. My left arm feels some days like a knife is sticking in it but Dr. says that will lessen over time.

    I hope everyone is doing ok post op ........prayers for all. I watched my mom make it through double mastectomy/reconstruction 30 years ago and she was a champ! I plan to be too! Hang in there ladies! Hugs and prayers to all!

  • SarahB57
    SarahB57 Member Posts: 2
    edited February 2018

    And the whole bra thing? PAINFUL! I was able to go to a cancer bra shop in the hospital and got two fairly comfy bras that zipped up the front and had a pouch for the dreaded drain. Different department stores like a Dillards have bra fitting specialists that can also help with all kinds of bras needed. My mom had different size "boobs" as she called them for her bras depending on what she wore!

  • HopefulAC
    HopefulAC Member Posts: 46
    edited February 2018

    hi friends. I’m almost 19 days post BMX and still my PS is not wanting me to wear any kind of bra whatsoever. The drains did come out on day 11.

    I still have pain under my arms (left worse than right because they took 3 nodes instead of 1) but it’s definitely improving. Is anybody’s upper arm numb still? It’s just a very odd sensation . I find myself guarding my chest/limiting arm movement and end up with some back pain.

    Had my second fill today and at least I didn’t get the sharp chest pain I did for the first. This has definitely been a lesson in patience. Seems like I take one step forward and then when least expected it feels like two step backs but I’m starting to realize that may be my normal so day by day it is.

  • Donnamz
    Donnamz Member Posts: 5
    edited February 2018

    Hello. I had my bilateral mastectomies with TE on February 12th, but just reading this thread now. It's so encouraging to hear how others are progressing. I just got the 3rd of my 4 drains out yesterday, but had lots of leakage from the drain site overnight. It didn't happen when the first 2 drains were removed so it sort of scared me. Anyone else experience this? Thanks

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    HopefulACv— I have some arm numbness too. Haven’t quite figured out if using my arm or just trying to rest makes it worse, it might just be that I’m more aware of it when I do? In general I find that I’m pretty tense and to remind myself to take a big breath and exhale, making sure I drop my shoulders back down ...it’s funny how they sneak up without realizing it.

    Donnamz— I had one of my drain sites leak a little for 2 days after getting the tubes out. I just kept it covered with some gauze until it stopped. The other side closed up right away but this one took about 5 days

  • HopefulAC
    HopefulAC Member Posts: 46
    edited February 2018

    mountainmama- agreed those shoulders just creep up — I just took a long deep breath reading your message:)

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    ValentineBMX

    It's good to hear from you, but dismayed about the negative nodes. We'll be thinking of you as you pursue treatment.

    I've been musing as to why some are told to wear bras while others are directed to avoid them. Could it depend on the type of reconstruction and their foob size, that larger implants equal more weight and stress on the suture? And different surgical approaches? Hmm.

    SarahB57 and Donnamz, Welcome to the group!

    Mountainmama406, I love the comic you posted!

    ItsStillMe, I hope you're resting and medicated ; )

    JT3, is the neosporin helping for armpits? I read that cornstarch can be used as a powder to reduce friction soreness. Apply with a makeup brush.




  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    Had my 2 week post-op visit today and came home with 2 drains still in place :( He did give me some Bactrim though to ward off any possible infection, so guess bring on the yeast infection now-yippy. Seriously though, when are people getting these drains out? I have a small chest and the output is not decreasing daily. I empty them twice a day and milk the drains everytime. Other than that, I'm having more good days than bad.

    Hoping everyone on here is starting to mend and those that have to do more treatments, my prayers go out to each of you.



  • 32b
    32b Member Posts: 188
    edited February 2018

    Hi ladies,

    itsstillme, thinking of you in particular today. I hope you are relieved to have surgery over with and that your pain is well managed. Please check in when you feel up to it.

    Nursepatient, have someone go to the health food store for you and pick up some probiotics. The good ones will be refrigerated and they sell specific compounds for women. They're expensive, about $40, but worth it. I've had good luck with "Renew Life Women's Flora." You can probably also find it online. It comes in a blue bottle with a sun on it. I'm very prone to yeast infections, but got through my last two rounds of antibiotics without one thanks to the pro-biotics. They replace the good bacteria in your system that naturally keep the fungi under control.

    mountainmama, thanks for the cartoon. We need more laughs around here.

    Fembot, thank for the tip about the cornstarch. I've still got a clear bandage under my arm that's creating a lot of friction.

    ValentineBMX, I'm on the East coast, so I don't know anything about the cancer center you mention, but make sure you get the best care! I certainly wish I'd asked for a second opinion sooner. Wishing you the best. I hope your pain levels are continuing to improve.

    I've gotten some mixed news over the last couple of days. My pathology report came back and there was no cancer in the lymph nodes or blood vessels. I am also negative for the BRCA gene mutations. I feel very grateful and lucky to have received this news, but there were unfortunately several very small areas of invasive cancer, bumping my diagnosis up from Stage 0 DCIS to Stage IA IDC. I have an appointment next week to go over the reports in more detail. It looks like some of the margins were close, but there's nothing else to surgically remove, so I'm not sure what that means for next steps and risk of recurrence. Also with the upgrade to Stage 1, it means that chemo is back on the table. The invasive cells are ER+ and PR+, so it's unlikely, but I'm still nervous. I had also originally been told that I could wait a few years to take tamoxifen and try to have a baby first. (I'm 32, no children, getting married in September.) I'm hoping the new diagnosis won't make the tamoxifen more urgent.

    Thanks for listening :)

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    32b, thank you. I will get some. I've done probiotics before but usually do the cheap ones. Not going to cut corners this time.

    Another question for everyone. I definitely want to get genetic testing done. I have no family history other than 1 aunt who had BC and really no other risk factors for this disease. Plus I have a 9 year old daughter. At what point did anyone get tested? I do see an oncologist for the first time March 12th so figured I'd ask him then but curious what anyone else did or if there's other tests I should ask about or if insurance covers them??

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    32B, Let us know how it goes and what treatment you choose.

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