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August 2020 Surgery Group

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  • Ekojio
    Ekojio Member Posts: 20
    edited September 2020
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    Hey all... been awhile posting. Just been trying to heal..


    But just so everyone doesn't think a double mastectomy with Diep reconstruction is a piece of cake for all it isn't. So Thursday everything was okay. Pain finally tolerable but i did a little dancing with my boyfriend (3 weeks post op) nothing I didn't feel I could handle and anyways today I think I must of reopened internal stitches because pain back to how it was right after surgery. Also yesterday morning woke up to a scab being on my shirt... i only have scabs in a couple spots left on abdomen and mostly middle of belly so I looked there and it was about 1 cm open so I called doctor and he has me putting silverdene on it with pads covering twice a day. But visiting nurse came today said ifs 5 cm open. But yesterday plastic surgeon said he was covering another portion of scab that I guess looked like it was going to fall off which did on the guaze over course of time I had it on so now of course incision more open. Visiting nurse said it doesn't look good but you know everyone has own opinions.. of course no open wound looks good but how bad does it look? Ps told me not to pull skin up to look at it so I'm not going to look at it myself like that anyways.. maybe with phone later. But its just scary... everything was going so well..

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    So sorry Ekojio :( Hopefully this set back will be short lived!

    Week 3 hasn't been kind to me either. I realized that the fellow accidentally didn't pull 1 of my doppler wires, (it just looked like a piece of fishing wire) and was tucked under my boob so I didn't see it right away and neither did the surgeon. So they said that I could pull it out myself or go to the walk-in (my surgeon's office is a 2 hour drive away). Even though I am a nurse I was too chicken to pull it myself, so my mom tried with no luck(she was a nurse too). I went to the clinic and the wire snapped, so back to the surgeon's office 2 days later, where they opened my nicely healing scar to search. No go. 5 new stitches now that I have to get out on Monday, and the wire stays in until my revision, which will be who knows when. Because I am still on blood thinners I have a big hematoma now and the increased pain and pressure is putting me in a funk. Not to mention that it also is contributing to a lymphedema flare on that side. It's so hard to slow down and my husband's messiness is driving me crazy, which isn't fair to him because he is doing so much extra with the kids and cooking right now. I just want to skip this month.

  • Ekojio
    Ekojio Member Posts: 20
    edited September 2020
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    I definitely hear you. I cant believe they couldn't find the wire though. Luckily they took those out before moving me to rehab center because I made a big deal about them being in. But another surgery for you only to not find it again? That is ridiculous. And same here, my belly is super tight and I really feel like the pain I was in while at hospital. I'm sure some of it has to do with the open wound.. which is also making me scared and cry a lot. I hope our next couple weeks gets better. Or month can just pass by like you said.

  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    Well I got my OncoType score, it was 11, so no chemo for me!!!! Although to be honest looking at everyones stories about AI's, I'm not sure which would be worse, 3 months of chemo, or AI;s for 5-10 years.

    At any rate, on to radiation, I have my simulation on Monday, then she will want to start either the following week, or the week after. I am going to ask to wait the extra week then start.

    Hope everyone in this group is doing well, that recoveries are going great and all are feeling well.

  • dani444
    dani444 Member Posts: 215
    edited September 2020
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    great news on the low onco score. Hoping you have few side effects of rads. Just remember hydrate, hydrate, hydrate. And of course all the lube! 😁. I actually bought a pack of men’s T-shirts in a bigger size to wearat night because of all the lotions and such I was using. I used a cream with calendula after each treatment. Also found the camisole from Ana Ono to be super comfortable during rads.

  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    I REALLY want to order that camisole! I ordered a couple of cheap Hanes with a shelf bra, they are ok, but that AnaOno is really pretty!

    I tend to not drink enough so staying hydrated is going to have to be a top priority for me!! have already bought Jean's cream, and CeraVe Moisture Cream. The mens tshirts sound like a good idea, will have to look into that.

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    Feeling a bit better this week. My foobs feel fine, but my abd remains really tight although I know its getting better as I can stand pretty straight. I have so much numbness in the skin over almost my whole abd, so it feels supper weird with any movement. Hopefully the numbness shrinks or I get used to the sensations.

    I got my exploratory incision stitches out yesterday. Although I doubt anyone will ever see my scars, I started silicone tape on the incisions on my non-radiated side and abd scar. Righty (radiation side) still has scabs and the newer incision so not ready for silicone yet. My surgeon says only the silicone tape or sheets have any scientific results behind them and not to waste money on bio-oil or topical vitamin E, etc. What are your doctors recommending?

    I am happy but still impatient, trying to find the balance between doing enough but not too much and very bored at home alone for most of the day. I have finished the internet and every HGTV show. Hope everyone is doing well!

  • Jane2310
    Jane2310 Member Posts: 7
    edited September 2020
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    I am scheduling my DIEP flap surgery for this November. I see my PS tomorrow morning for my final consultation. Not sure what questions I should ask. I’m not afraid of the surgery as I have had MANY over my lifetime. I am 70 and had my double mastectomy in 2018. I’m tired of the prosthetics and I want to feel like myself again.

    I had a wound when I had my Mastectomy and it took 4 months to heal with the help of a wound vac for 5 weeks. This makes me a bit nervous with the blood vessels attaching, but my CT scan on my stomach was good.

    My PS has done over 1600 of these surgeries and has a 98% success rate. Having the surgery at Froedtert Hospital Medical college in Milwaukee.

    I read somewhere that you cannot move your arms for weeks. Not to wash your hair, use the toilet, etc. Has anyone experienced this? Do they put drains in your stomach incision as well as the new breasts?

    I am thankful for this forum as I have been reading post after post with information.

    Thanks in advance.
    Janie

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    Janie,

    I could use my arms after the first few days as long as I didn't move them above my head and I didn't move them much because ouch! I found the pain less than my BMX with immediate reconstruction (1 implant and 1 tissue expander) but I didn't have very good pain control then. The first few days I couldn't wipe my #2 😳 but I could by day 4 and I think I had extra issues reaching because of my lymphedema that flared and advanced scarring that they had to dig out of my chest wall.

    I had 2 drains from the sides of my breasts and 2 under the abd incision in the middle.

    I was allowed to shower after day 5 even with drains in but that depends on your surgeon. Husband washed my hair for the first couple weeks but I could do it by week 3ish.


  • abigailj
    abigailj Member Posts: 101
    edited September 2020
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    Hi Jane2310 - I‘m 63 and had a BMX with immediate DIEP recon June 23. I think your experience will be different in terms of arm movement since you had the MX a few years ago. But for what it’s worth I did have some wound healing issues at the abdominal incision (I’m a former long-time smoker, quit just 4 months before my surgery) so had an additional surgery and had the joy of silvadene in my life too and am still tighter in the abdomen than I’d like but keep improving. I am looking forward to fat grafting to smooth things out as soon as the reconstructed breasts are softened up sufficiently, hopefully early December. I could wash my hair after 3 weeks as long as I moved slowly and carefully. Definitely do the PT exercises unless it really hurts and be very careful with the incision- don’t bend or otherwise stress it. And don’t lift/stretch your arms too high. I found a lot of good info on the 2018 DIEP thread on this site - I definitely recommend reading through it. Despite the long recovery I’m so glad I choose to do this.Hope everything goes at least as well for you as it did for me!

  • Jane2310
    Jane2310 Member Posts: 7
    edited September 2020
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    Thanks so much to all for your input. It helps so much to hear other experiences. I am now planning on my surgery for Jan of 2021. Insurance will cover more if I wait.

    I’m glad to hear also that you are happy with your decisions. This is a hard one for sure, but I really feel it’s the right one for me.

    thanks again

  • Lovemyboys123
    Lovemyboys123 Member Posts: 2
    edited September 2020
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    Hello-new to the group. Had bilat DIEP flaps 10 days ago and getting frustrated with slowness of my progress. To the others with this surgery-when were you able to stand up straight and when did you actually go out??

  • moderators
    moderators Posts: 7,981
    edited September 2020
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    Welcome, Lovemyboys123! We're glad you've found and joined our community, and we hope this place can be a source of support for you. We know the urge to get back on your feet following surgery is strong, but it's so important to go at a pace you can manage and give your body time to heal! Everyone progresses at a different rate, but you'll get some great advice and guidance here.

    The Mods

  • DynamicIris
    DynamicIris Member Posts: 3
    edited September 2020
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    Just started my radiation this week. I have always dealt w/ depression and was in perimenopause (taking hormones) so having to take AI's or Tamoxifen sounds awful. I haven't been able to sleep at all- tried CBD oil (expensive bottle), gabapentin and don't want to take over the counter and my moods are all over the place. As I sat in the xrays and radiation appointment yesterday, I had tears running down my cheeks. I thought that how easy it seems to cut out my cancer and yet no one can help me sleep. My new oncologist said I my body would get used to not having hormones in a few weeks. UGH- I'm trying to find another oncologist.

    Sending healing thoughts to you all!

  • DynamicIris
    DynamicIris Member Posts: 3
    edited September 2020
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    Thanks for ideas about camisoles. I feel the bras are so scratchy on my scars.

  • marcs1234
    marcs1234 Member Posts: 3
    edited October 2020
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    Hi all! Hope everyone is doing okay! I had my double mastectomy with TE placement back in August and just finished my last TE fill. With this last fill I feel huuuggeee. My size is just bigger than I was hoping to be. With the weird shape of the TE I guess I couldn't tell till I was above where I wanted to be. I'm going to call my surgeon tomorrow to ask, but I'm eager to know if anyone else had this experience, and if it's possible to undo a fill or go down in size when exchanging to an implant? If yes, how far down in size can you go? This fill just felt like way too much - both cosmetically speaking and physically speaking - I have back and side pains again that had gone away. And the skin just feels really tight. I'm a bit nervous there's no undo option here.

  • Lovemyboys123
    Lovemyboys123 Member Posts: 2
    edited October 2020
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    Hello again, Can anyone tell me where to find info on exercises for post op bilat. MX with DIEP flap?? Just looking to improve ROM as best as I can.

    Thanks!

  • clarrn
    clarrn Member Posts: 160
    edited October 2020
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    Hi! Hope no news is good news for you all :)

    Had my 6 week follow up yesterday. Things are going well but my previously radiated side remains harder and higher. We will do a revision in 6 months (by then it should have settled as much as it will). So I will have these uneven boobs and 'dog ears' until spring. I am still swollen and my abdomen still feels pretty tight. My belly button looks much better now and it will live (we had a couple dodgy weeks). I habe been using silicone tape for a couple weeks and I think it helps with itching and maybe appearance too.

    I can start physio at 8 weeks so will call to book my first appointment tomorrow. I have been walking about a mile and a half daily but did do the 'Run for the Cure' on Sunday- which is 5 km. Mine was more of a shuffle for the cure lol! I was surprised how tired I was after. I also drove the 2 hours to my dr appointment and 2 hours back. That was also surprisingly tiring. I felt good and safe but could definitely feel that my radiated side is stiffer on the bigger turns like pulling out of a parking stall.

    So overall it's going fairly well and I am happy that I went through with this big surgery. Hope you are healing nicely:)

  • austx1
    austx1 Member Posts: 1
    edited October 2020
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    Anyone experiencing painful knots around abdominal incision area after diep flap. I am almost 7 weeks out, and am not sure if the knots have been their all along and the nerves are just restoring or if something else is going on. Curious if anyone has had similar experience.

  • juju-mar
    juju-mar Member Posts: 200
    edited October 2020
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    hello ladies,

    I had my lumpectomy Oct 2 and am more swollen today than previous days. Is this normal? The lumpectomy side looks exactly like it did pre op, even though she removed a 6cm tumor. Also a little swollen at the lymph node site where 4 were taken out. Just wondering if this is what any of you have experienced. Thank you.

    Julie

  • Lovemyyorkies
    Lovemyyorkies Member Posts: 43
    edited October 2020
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    praying everyone is staying healthy during these crazy times. My plastic surgeon said my 300 ml one and only fill is all I need before implant. MO says to wait 3 weeks after last Taxol. So I am scheduled for left gel implant and tuck and lift of right to get symmetrical on December 8. I went and was fitted for mastectomy bra and they put inserts in so I am now symmetrical 🤩. They said my insurance covers this. Little things can sure boost the spirit

  • arabiansrock
    arabiansrock Member Posts: 40
    edited October 2020
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    juju it is deff normal for swelling to increase a little, especially if you are perhaps using your arm on that side more. Remember, no lifting anything heavier than a couple pounds . My Dr said for 3 weeks, no lifting. Also ice at least 4 times a day for 20 min. It really does help bring down the swelling. The one day I disobeyed my lifting restrictions, I paid for it the next day with increased swelling and discomfort.

    If you are concerned, it your breast gets red or warm, def call your doctor to let them know. Better safe than sorry.

    Sending you good wishes for reduced swelling and an easy recovery.

  • juju-mar
    juju-mar Member Posts: 200
    edited October 2020
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    thank you for the reply. I have been using that arm pretty regularly. I feel good, no pain. But guess I should still take it easy. And thanks for the ice tip. Best wishes to you on this journey

  • SweetpeaJ
    SweetpeaJ Member Posts: 5
    edited October 2020
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    On June 30 I had my tissue expanders removed and my implants placed. Approximately seven weeks later I showed signs of infection. My right implant was removed, the pocket cleaned out, and a new implant inserted on Aug 18. Two days later I ended up in the hospital for six days on IV antibiotics to get the infection under control. I went home on oral antibiotics for the next three weeks. I have been off the antibiotics now for four weeks. Now I have developed a grade II capsular contracture in my right breast. My right side is really tight and I have a lot of pain in my armpit and into my arm. I’m not sure if it’s scar tissue but there is a lump in my armpit. The oncologist did an ultrasound on it a couple weeks ago and it did not show signs of malignancy.

    Can anyone share their experience with capsular contracture? Is the armpit/arm discomfort normal? And how did you fix your capsular contracture?

    Thank you

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