December 2017 Surgery Group

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  • ps0705
    ps0705 Member Posts: 122
    edited January 2018

    Welcome fembot and jjsmom! Sorry you have to be here.

    JJ's mom - I'm in awe of you. You are already going in for your 2 fill up? My surgery was a week later and I haven't had any fill ups yet. Weds I probably will but am super nervous about it since my chest muscles are aching and cramping up frequently.

    BTW- My left TE's/booblet is about 1/2 inch lower than the other. Will that be a permanent thing or do you think it can be straightened out when I have the exchange?

  • Tracy1972
    Tracy1972 Member Posts: 8
    edited January 2018

    Moth

    Wondering if you'd gotten your Oncotype back yet. I have mostly been lurking on here rather than posting. What happened with your Seroma?


    I am 5 weeks post op today. Had 4 seromas drained last Thursday, they were small. My right nipple is completely dead, but isn't flaking or acting like it is going to fall off. It looks REALLY ugly, wish it would come off. I am still very swollen, my breasts and my abdomen. Can't stand up straight (ugh) and am still sleeping in a recliner. Now I have found a “cord" under my left arm (lymph node removal side), afraid I have Axillary Web Syndrome. Seeing my Oncologist on Thursday, will ask for a referral to PT.

    Keep your chins up ladies! Remember, you've GOT this!! 👍🏻

    Tracy



  • moth
    moth Member Posts: 4,800
    edited January 2018

    Hi Tracy, oh poor you! That sounds really tough with your nipple, and not being able to stand straight or lie down properly! You're really had bad luck with the seromas too.... I hope things start improving quickly. Definitely sounds like PT would be a good idea.

    My seroma is now so small and insignificant that I hardly notice it unless I'm poking around in there. I saw my surgeon today & he said everything is healing fine. I got the post op pathology results & I've been re-staged to stage 1 as the tumor ended up being 1.7 cm.

    No news on oncotype yet. I'm in Canada so I guess it takes longer for it to get sent across the border. I'm meeting my oncologist on the 24th & I hope they have it then. Have you got your oncotype results?

    Hang in there Tracy & I hope your Thursday appointment goes well!

  • ps0705
    ps0705 Member Posts: 122
    edited January 2018

    Wow Tracy, I hope things settle down for you. I'm sorry you've had such a rough go of it. In my opinion, PT's are miracle workers.

    Good luck and really hope you can get some relaxing, comfortable sleep in your bed soon.

  • jjsmom1221
    jjsmom1221 Member Posts: 8
    edited January 2018

    Thanks for the welcome PS, it sucks to be here but at least we all have each other to lean on! Super excited for tomorrow's fill even though I was really sore for a day and a half last time, I try to focus on the fact that it's one step closer to this whole thing being over and moving on. I think they will be able to make adjustments during the exchange maybe it's just the way your te is laying. Keep me posted

  • Ghionik
    Ghionik Member Posts: 101
    edited January 2018

    jjsmom1221, glad you’re doing well. I had the same surgery on 12/4/17 and had a fill a few weeks ago. I went for another fill last Friday but decided my size was already good enough so didn’t do it. I don’t have to see my PS again until right before exchange surgery. I can’t wait to get rid of these TE’s

  • jjsmom1221
    jjsmom1221 Member Posts: 8
    edited January 2018

    How many cc’s have you had each fill? If you don’t mind me asking what size were you before and where are you looking to be after? I was a 36C. I currently have 250cc’s in each side after today’s fill and am nowhere near back to my pre- surgical siz

  • Ghionik
    Ghionik Member Posts: 101
    edited January 2018

    I actually didn’t even ask my PS how many cc’s she used at the one recent fill (she did a pretty good size fill when she put the expanders in during surgery). I was a 36B before and am a little bit bigger than that now. I don’t want to be any bigger. I can’t imagine having to replace clothes because they don’t fit. Also I’ve been anxious to be able to workout again. Now that I’m done with fills, she’s released me to start back my running! It’s felt so good to get back to some normal activities.

    I saw my medical oncologist this morning and was told officially no chemo or radiation. I will have to start taking tamoxifen soon though.

    Hope you’re not too sore from your fill today.







  • jjsmom1221
    jjsmom1221 Member Posts: 8
    edited January 2018

    Good morning,

    I only had 50 cc at surgery, my skin was too tight for any more. I saw the oncologist last week and also no chemo/ radiation/ no anything, have to see her in a year and then hopefully never again! I’m sore this morning but I don’t think it’s as bad as last time, I’ll see as the day goes on. Going into work for a few hours today, hope you have a great day

  • bn4gvn
    bn4gvn Member Posts: 4
    edited January 2018

    Hello all...I had bmx 2 days after Christmas , not doing reconstruction. This past Monday all the nerves seem to be waking up and they are not happy with their new homes! Tingling, burning, pressure...any idea how long this will last and are there ways to alleviate it? Not excruciating but uncomfortable to say the least....

  • jjsmom1221
    jjsmom1221 Member Posts: 8
    edited January 2018

    Hi bn ... I’m on Gabapentin for Siatic nerve pain , 390mg 3 Times a day, but have only been taking it at night, after my surgery I was getting sharp stabbing pains and was told it was nerves regenerating, I increased the meds to 2-3 times a day and it has really helped. Some people have commented that Valium has helped them. Good luck with your recovery

  • Tracy1972
    Tracy1972 Member Posts: 8
    edited January 2018

    Hey there Moth! My Medical Oncologist called me about 5:15pm on Friday to tell me they had my Oncotype back and it is 9.3 (low risk). So the plan will be endocrine therapy. Tamoxifen is her plan. I have an appointment to see her in 2 weeks so I am going to do a little bit of research before then so I can ask appropriate questions when I am there.

    If anyone has any experience about endocrine therapy I would love to hear it. I am 45 and peri menopausal. Have some hot flashes and irregular periods. I have never had any GYN surgeries

    I, like everyone else, am just ready to finish healing and move forward. I am thankful that I was able to avoid both radiation and chemotherapy. However, I think I was unprepared for the emotional roller coaster that was going to come along with this disease.

    Please let us know when your Oncotype comes back. I am praying for a low number for you.


  • jjsmom1221
    jjsmom1221 Member Posts: 8
    edited January 2018

    Good morning , hope everyone is well this Sunday morning

    Thinking ahead, as I usually do, was wondering if anyone here is in the Orlando/Daytona area and if so, do you know / recommend someone who does the 3D nipple tattooing? My ps is talking about surgery to create a nipple from skin harvested from somewhere on my body but I’m not sure if I want to go through yet another surgery after exchange and concerned about “ the headlights” being on all the time! Any advice, experiences, recommendations would be greatly appreciated. Thanks in advance

  • moth
    moth Member Posts: 4,800
    edited January 2018

    Oh Tracy I'm so happy for you about the great oncotype! That's awesome that you don't need rads or chemo!

    With the tamoxifen hun, be careful googling because at first all I read are the horror stories but then I found whole threads where people were saying they have low to no SEs. Of course you know how it is, healthy people living their lives don't spend their time on boards telling everyone how normal they feel :) If you're strongly ER+ then tamoxifen is imo, a lifesaver. I'm pretty sure I'll be put on it and I'm planning to just assume I won't get SEs and hope for the best.

    Thank you for your good thoughts & prayers about my oncotype. Honestly, I'm expecting it to be high & even if it isn't, I've looked at the chemo criteria in my province and I'd be super surprised if it wasn't recommended. I'm Grade 3, and barely ER+ (Allred 4 on biopsy; pathology dropped it Allred 3 with 10% staining) which might be close to functionally triple neg. We'll see, I guess. Either way, I know radiation is for sure in my future.

    I have a final exam outstanding from last semester (I bailed on some of my course work in Dec) so I'm busy studying which means less time to obsess about this :D

    Stay in touch!

  • Tracy1972
    Tracy1972 Member Posts: 8
    edited January 2018

    Moth-

    Good luck on your exam. Please keep us all updated on your progress.


    Tracy

  • Tracy1972
    Tracy1972 Member Posts: 8
    edited January 2018

    PS0705-

    Thank you for your support. The bed situation is getting better already. I am kind of pushing myself a little more each day. Some days that is good, some days it's not. But I can't live like this forever, so I am moving forward!!


    Tracy

  • FaithWalker22
    FaithWalker22 Member Posts: 46
    edited January 2018

    Hi! just wanted to check in. I am six weeks post DIEP surgery. I am still doing well! The incisions have all healed and my new breasts are still nice and warm. They are not as swollen or tender as however there is still some tenderness.

    I think it was about week 4 for I was able to stand up straight and around the same time I was able to lay in the bed. 😊💃🏽💃🏽 I still had to put a pillow beneath my knees to release a bit of tension but for the most part I was flat. What a wonderful feeling to be in a bed and not in a chair! For those of you who have recently undergone surgery, keep the faith! It gets better. It really does.

    I had therapy at home once the drains came out (mine were out at 2 weeks) and at week 5 I trNsito outpatient therapy. I can definitely say that stretching makes a huge difference! It is key to regaining your range of motion so don’t overlook its importance. If you can’t get a therapy, ask your breast surgeon to give you a list of allowable stretches.

  • Ghionik
    Ghionik Member Posts: 101
    edited January 2018

    That’s great news Faithwalker! Glad to hear you’re doing so well.

  • Madre9295
    Madre9295 Member Posts: 9
    edited January 2018

    I have this same question about nipple reconstruction and tattoosbut for the Atlanta area. Not sure if I want the look of 3D or want to do a physical one with a good tattoo. I'm an artist and picky about colors🤪 weird but true. I saw the video about the guy in Baltimore that is amazing and now I want someone that good!


  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited January 2018

    Moth, any news yet on your oncotype score? Hope you are healing well and feeling better.

  • moth
    moth Member Posts: 4,800
    edited January 2018

    PrincessButtercup, I'm meeting with the oncologist on the 24th. I hope to finally find out then! I'm so impatient.

    I'm physically feeling ok; I see a PT tomorrow just for a check up and to make sure my range of motion is where it should be. Mentally I'm getting a bit frazzled with feeling like I'm in a holding pattern.
    I wrote my exam today and the prof emailed me in the evening that I did fine & she's submitting my final grades to the registrar so that's one thing I can tick off my list.

    I saw on the Jan chemo board that you've started. Hope you keep the nausea and hiccups at bay! Hang in there. Would sucking on ice chips help at all?

    Tracy - how are you doing? Is the sleeping and getting comfy in bed thing better?

  • moth
    moth Member Posts: 4,800
    edited January 2018

    booo :( I still know nothing. The oncotype hasn't been done yet - I needed to meet with the oncologist and sign forms to allow them to send my tissue to California. Ugh. I guess the BS couldn't do that before because that's not their department....

    There is a waitlist for chemo & she's put me on it but officially there's no decision until we get the results back from Oncotype. Follow up on Feb 9. Back to waiting /sigh/

  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited January 2018

    Moth, I'm so sorry that you have to keep waiting! The good news is that once it gets shipped out there, they get it done pretty quickly. That was my experience. Be strong, not much longer.

  • moth
    moth Member Posts: 4,800
    edited January 2018

    Thx PrincessButtercup. It was sort of anticlimactic yesterday... but I'm ok with it now. The restorative yoga class I went to last night helped to relax me and on the walk home I realized this meant I get essentially a 2 week holiday now to do other stuff.

    I'm feeling totally fine physically so I might as well enjoy this time! The MedOnc explained that since the surgery was successful and my nodes are clear we don't have to rush around for the next step. (& it actually isn't that this step is late; it's that my surgery was early. Was supposed to be Jan 3 and got moved up to Dec 12).

    I'm just going to pretend I'm not sick at all for a bit

  • LMichele
    LMichele Member Posts: 165
    edited February 2018

    Just found this group, had DIEP reconstruction in December. The 2017 DIEP group seems to be winding down but I have quite a way to go till I am done! I have had a few set backs. Some fat necrosis. An open wound at the moment. Stage 2 surgery not till end of May... ugg. I know I am supposed to be patient and optimistic but I am kind of anxious and bummed out. Hoping to compare notes with anyone else having had DIEP.

    Tracy 1972: hi, just wanted to say regarding Tamoxifen, I have been on for 6.5 years and for me it is a non-event. In the very beginning I had some headaches vaguely like a mild hangover, I think that was just an adjustment to cells not receiving estrogen. No instant menopause, no flashes, bone pain, nothing. Good luck!!

  • Sopho
    Sopho Member Posts: 41
    edited March 2018

    Months out and I am still not fully healed. I am very tired of this and want to just move on with my life. I hope everyone else is well and healed.

  • moth
    moth Member Posts: 4,800
    edited March 2018

    Sopho, I'm sorry to hear that. That is a long time to recover. Did you have complications or is it just a bunch of little things that are still resolving?
    I hope it is all back to normal soon.

    I'm fine but my boob is still blue from the tracer dye.

  • ps0705
    ps0705 Member Posts: 122
    edited March 2018

    Has anyone had their exchange surgery yet? I'm scheduled for mine in April and am wondering if how your recoveries

    went.

  • Ghionik
    Ghionik Member Posts: 101
    edited March 2018

    ps0705 - yes I had mine done on March 12th. It was a breeze - so much easier than I thought it would be. It’s nice to be rid of the expanders too. You’ll be happy to have this surgery behind you. Good wishes for your upcoming surgery!





  • ps0705
    ps0705 Member Posts: 122
    edited April 2018

    Thank you Ghionik.

    I go in Tues 4/24. We fly across the country 2 weeks late on 5/9 for my niece's college graduation. I'm second guessing that little trip. Ugh.

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