November 2018 Surgery Support Group

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  • Kstinekd
    Kstinekd Member Posts: 40
    edited December 2018

    Thank you, all. I called the doc and he didn’t have much to offer. My husband helped me adjust the bra and we found a spongy disc that was once around the insertion site but fell off. Once he put that in place for me it was better. Still painful occasionally but not as sharp.Whew. My family is becoming a top notch medical team. :)

    Mcbaker and Rosie red, I might add some fluffy gauze like you said to help protect the insertion area thanks!

    Heather autumn, thanks for the lidocaine idea. I want to pick some up to help with that left side. Hang in there. Let us know if you are able to eliminate a drain and how your nodes are this week.

    Evily, thank you for the encouragement each day is getting a little easier so I’m hoping the pains will be a distant memory soon


  • Mariett
    Mariett Member Posts: 45
    edited December 2018

    I had my bmx on November 23rd and haven't had a good night sleep since. I don't have pain and the drains are fine I seem to have restless legs and I can't get to sleep and when I do I don't sleep for long. I have taken a Percocet at night just to help me sleep but that only works for a couple of hours. I have tried melatonin and herbal teas but nothing is working. I have an appointment Thursday with the surgeon so I'll see if she has any advice.

  • evily
    evily Member Posts: 63
    edited December 2018

    Marriett, it's so weird you mention having restless legs. I had the same problem during the first couple of weeks post-op. It's gotten better now, but man, I would wake up every night feeling like my legs were going to come out of their skin. I would have to get up and walk around for a few minutes, which then made me feel wide awake, so getting back to sleep took forever. Very frustrating! The good news is I haven't had it for about a week (*knock on wood*), so it seems to have resolved. Hopefully you will find it goes away soon too!

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    :( Kstinekd - that doesn't sound right. I had my surgery Thursday arvo as well. I did wake up with a lot of pain at my right drain site, but once they brought it under control, it didn't come back again. In fact, it was comfortable enough that I could sleep on my side that same night. Is there a wound care clinic where you are where you could get it checked or something?

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    So, things are going great for me :) Four days post-op and I couldn't be doing better. I do have some very dramatic bruising, but got some arnica cream this afternoon that should help with that. My pain has be almost non-existent and I'm down to just taking paracetamol every 4 hours, not because I'm in pain, but because I'd prefer to have something on board, just in case, for the next few days. I've been sleeping well, able to side sleep from the same night as surgery. Today I got the right hand side drain removed, and hopefully the left one will go on Wednesday. My ROM is great and I can do all the exercises the PT gave me with ease. All the concerns I had about being able to look after myself have disappeared. Sure, I get a bit tired, but compared to some people, I am having an absolute dream run :D

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    KerriOz- I’m so glad to hear how well you’re doing! I can’t sleep on my side...I want to sooooo badly!!!!


  • Heatherautumn
    Heatherautumn Member Posts: 38
    edited December 2018

    3 of 4 drains removed today! Woohoo! I feel like a new woman! Tomorrow will be 3 weeks post surgery. Just in time to get a new drain on Wed! LOL!!!

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    Wigging, I feel so very fortunate at how my recovery is going. I think not having reconstruction is making it a whole lot easier. I hope you're back to side sleeping real soon.


  • Oya80
    Oya80 Member Posts: 42
    edited December 2018

    Just checking in... I'll be 3 weeks post-op tomorrow & had my last drain removed today! yay! With it gone I feel less like I'm "recovering" & more like myself. Tomorrow I also return to work, which I'm so eager. Being at home has me stir crazy. As an exec, the majority of my time is in meetings or in my office so I'm not concerned with over exerting myself. Working helps my sanity..lol.

    Regarding chemo, I've decided to hold off on making a determination until my oncotype score comes in. It just feels like we're jumping the gun. So much so that I left the oncologist (stressed/upset from the chemo recommendation) without a clear hormonal treatment plan. No literature on Tamoxifen.. no rx called in to the pharmacy.. like what gives? So I'm pumping the breaks, until I have my score I refuse to make a decision. This lets my body continue to heal over this month, allowing me to enjoy the holidays with my health & energy in tact. ...its the right choice for me.

    Continued best wishes to you all💕

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Good luck with return to work tomorrow, Oya80! I was thinking today that I felt ready to go back to work. LOL I am on post op day 3 and scheduled for another surgery on Friday, so I’m guessing I probably won’t follow through with returning to work right now!

    Any idea when the Oncotype score will come in?

    I am waiting to hear about “the nodes”.


  • Oya80
    Oya80 Member Posts: 42
    edited December 2018

    Thanks Wigging! I'm so ready to return to my "normal", even if it is temporary. That's awesome you're feeling so good after only 3 days! But your body will thank you for taking the time to heal. Good luck on your upcoming surgery... & fingers crossed for no node involvement.

    Luckily I connected with the nurse navigator at my BS office & she was certain that the oncotype dx test had been ordered. So I'll trust her word. But it sounds as if it was just ordered at my post-op visit last week, so at least another week or two for results... just great, more waiting. I also called the MO office to cancel my infusion & ask questions regarding the hormonal treatment. Never received a call back. I hope this isn't a trend of inadequate care with this unit of my care team. It seems once we jump on this bc train, it just goes on & on.

  • Heatherautumn
    Heatherautumn Member Posts: 38
    edited December 2018

    Whoa. My last drain is trying to leave my body!!! The black dot marker on the tube (skin level indicator for surgeon) was showing yesterday and now I can see a quarter inch of the white tubing! I'm skeeved out by it! I just hope it stays in until I get to the hospital tomorrow and they can deal with it. Eew!

  • MCBaker
    MCBaker Member Posts: 1,555
    edited December 2018

    that would be a great excuse for getting rid of it. My PS says he won't authorize for it to be pulled until it yields less than 20ml for two consecutive days. "But, Doctor, it just ran out of my body. It just didn't want to stay in there any longer😂!"

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Heatherautumn...yuckkkkkkkk! I am looking at my surgical sites as little as possible, lol. I hope they take your drain OUT!!!! Seems like it’s definitely ready to leave you!


  • evily
    evily Member Posts: 63
    edited December 2018

    Heatherautumn, I'm with MCBaker... if the drain is trying to leave your body, just let it! LOL!

    Oya80, enjoy getting back to work! I am looking forward to going back too, but it doesn't make any sense for me to go back before the holidays since we start new projects in January, and all my existing projects have been taken over by my peers during my absence. So I guess I'll just have a very extended holiday season! I'm REALLY going to want to go back come January, though.

    Kerri, so glad you are having such a wonderful recovery! You seem to be recovering similarly to me. I was off the pain meds at 4 days post-op.

    Wigging, sounds like you are having a great recovery too! Wonderful!

    I had my 3 week follow-up appointment today (can't believe it's been 3 weeks already!) and everything is looking and feeling great. Now I can turn my focus to my upcoming oncologist appointment. That's next week, so I guess I'll just occupy my time with cheesy holiday movies, and playing piano with my cats (they like to "help", lol!).

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Evily-so glad you are continuing to do so well!! I’m sure you are anxious yet excited to see your oncologist. I hope it goes well!


  • Cjzach10
    Cjzach10 Member Posts: 87
    edited December 2018

    Hi all!

    I went for follow up today and for my pathology report. The bs told me after surgery that when she injected me for sentinel node and got in their for dissection there was no sentinel node. And she saw no other dye uptake indicating any other lymph nodes. She took a section of tissue hoping to get lymph nodes. My report states there was no lymph nodes..only adipose tissue in the sample. So now I'm on to the oncologist for the oncotype dx. I know this test is suppose to be the tell all but it makes me very nervous that a lymph node wasn't sampled. She said its not common for this to happen but some peoples anatomy is that way. Either no lymph nodes or scar tissue blocked the path of the dye to that area. I just dont know how to feel about it. Trying to be positive...she could've gotten 5 lymph nodes and all be positive! On a positive note the ps said my healing problem was resolving itself and would just take longer than the other side to heal! So i was so excited to hear that! Good luck and continued healing to all my nov peeps!

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    MC Baker ... wow, you have to wait for less than 20ml in your drains to get them out? I only have to have 50ml or less for 2 consecutive days. I'm looking at getting the second one out today, though I'm a bit worried about having it out so soon. Initial instructions back in May when surgery was first scheduled were drains out after 30ml or less for 2 days, but has since changed to 50. How can it be so different? It's just weird, and a little disturbing. Are some surgeons over cautious? Or are some surgeons just trying to move their patients on from their care as quickly as possible?

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    KerriOz-my drain goal per discharge nurse was also less than 20cc/day. I’m having more surgery on Friday though, exactly one week after initial procedure, so my drains will stay in even though I’m under 20cc. I hope yours come out at just the right time for you. It seems that so many things (showering, drains, etc) are so dependent on the individual doctors’ preferences.

    Cjzach-the lymph node thing certainly sounds frustrating and confusing! I’m sorry you are dealing with that. I’m glad the healing is resolving. Hopefully you do not have to wait too long to see your oncologist. Oh the continual train of waiting!!!! So much patience is required!


  • evily
    evily Member Posts: 63
    edited December 2018

    cjzach, wow that's so weird about your lymph nodes, or rather, the lack thereof! Hopefully you can get some answers soon from the oncologist.

    KerriOz, my surgeon wanted 30 ccs or less of drainage for at least 2 days before removing mine. 50 seems like a lot! I wonder if the fact that you didn't have reconstruction is why they are able to pull your drains at a higher rate of drainage? Maybe there's less risk of seroma formation somehow?

  • Mariett
    Mariett Member Posts: 45
    edited December 2018

    FYI Stella McCatney is giving away free Mastectomy Bras. I got mine today, Check out the website stellamccartneycares.org free shipping too.

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    Evily - apparently it's a new gold standard here, introduced by some surgeon who has recently started working in the area. 50ml or less for 2 days, or 7 to 10 days at the latest. I really don't know the full reasoning behind it, and I didn't think to ask the nurse who removed my second drain yesterday if there other ladies who'd had them taken them out under the new protocol had reconstruction or not. Happily it's turned out well for me, but from reading other women's experiences, I imagine there'd be at least a few who would have problems with seromas and stuff.

    I'm really glad I did get mine out so early. The second one hurt like a bastard, cos it had kind of glued itself to my tissue. It would have been a lot worse if it had been left any longer.

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    HiAll! Had plastics today and we are a go for reconstruction tomorrow. I'm scared to start up with the pain again but it must be done! Got my drains out today (I'm getting 4 new ones tomorrow though...bummer).

    The best news of the day is my pathology report. Margins are clear, lymph node benign. No additional cancer surgery or radiation needed. My right breast was clear and my left breast has LCIS and DCIS in addition to the IDC that we already knew about...largest tumor size 1.7 cm. So, onward I go. Will not know about chemo until after they run the new tumor markers on the DCIS/LCIS. More waiting, but I'll be healing from Fake Boob Friday while I wait!

    Wish me luck tomorrow ladies!

    -Wigging

  • sugarmaple
    sugarmaple Member Posts: 55
    edited December 2018

    Wigging-great news on your pathology report! Good luck tomorrow, I’m sure it will all go well.


  • RosieRed
    RosieRed Member Posts: 257
    edited December 2018

    Good luck Wigging2000. Hope all goes well.

  • evily
    evily Member Posts: 63
    edited December 2018

    Great news on the pathology report, Wigging! Best of luck to you on Fake Boob Friday!

  • MCBaker
    MCBaker Member Posts: 1,555
    edited December 2018

    so glad to see good news for you, wigging. Been a long time since you chose that name, lol. I see the oncologist tomorrow.

  • Kerri_Oz
    Kerri_Oz Member Posts: 91
    edited December 2018

    Wiggin - All the best for the next stage of your journey, and congrats on the great pathology report :D


  • Mariett
    Mariett Member Posts: 45
    edited December 2018

    Got my drains out today and also got my full pathology report. I had one tumor measuring 4cm another 2cm and a couple of 1cm ones all in the right breast. I also had 3/11 nodes test positive on the right side. The one part that bothers me is where it says that the invasive carcinoma extends to the superficial margin, spanning 2.2mm. The surgeon was ok about this but would've preferred a bigger margin. I will be getting chemo but she thinks I should get radiation also because of this 2mm margin. I had radiation 12 years ago for dcis so I don't think I can get it again in the same place but she wants me to meet me the radiologist and see what they think. I have my MO appointment next week to discuss treatment so hopefully she will be able to give me a clear plan of action.

  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Hugs, Mariett. I’m sure you are so happy to be drain free! I am hoping for peace and clarity as you meet with your oncologist.


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