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January 2019 Surgery Support Group

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Comments

  • Jacy
    Jacy Member Posts: 8

    MACTAZ, great news. So happy for you

  • mactaz
    mactaz Member Posts: 592

    WandaLee, how many sentinel nodes did they extract? I had SMX with 2 sentinel nodes extracted. While my armpit is sore and stiff it isn’t that bad, Hope it gets better soon.


  • betterdazeahead
    betterdazeahead Member Posts: 37

    Hey all!

    survived my BMX on the 31st :) They were able to spare my nipples and so far they are doing well.

    Me on the other hand is having a harder time then I anticipated mentally and emotionally with all of this. I tried to take a shower and looked in the mirror it just felt so not me standing there. I know it will get better over time but in the here and now I am struggling.


  • mactaz
    mactaz Member Posts: 592

    Betterdazeahead, I understand how you feel. I had a SMX and was afraid to look. When they took off the bandages the first time, I didn’t look but that night I did. It is shocking, but I tried to concentrate on what that darn boob put me through and now I’m healthy. I think it will take time for full acceptance, but hang in there, we are here for you.

    Take care

  • Hongh
    Hongh Member Posts: 51

    MACTAZ, congratulations on the clean report ! I bought the same sports bra from amazon and they look great !

    I got my drain removed on Tuesday and started H+P yesterday, my oncologist will see me in 6 weeks, maybe we will talk about tamoxifen then.

  • WandaLee
    WandaLee Member Posts: 5

    4 lymph nodes were taken and drain tube in the area.

  • mactaz
    mactaz Member Posts: 592

    WandaLee,I’m not sure, but might be due to drain tube in that area. There are nerves there and the tube could be aggravating them. My tubes are in my chest, and since all nerves were cut for mastectomy, I don’t have much feeling. Sorry you are feeling sore, hope it gets better.

  • Cascadians
    Cascadians Member Posts: 72

    Still have 2 drains in, slowing down but putting out enough muck that don't want them out yet. Armpits very swollen and full of goop so massaging and trying to coax glop to drain out tubes. Going to go see Physical Therapist soon. Pressure of accumulated blood, lymph and clots above stitches is painful pressure and super itchy. Keep loaded with Norco and Valium to make it through each hour without losing my mind. Can finally feel it starting to heal. Q ball is out and those drains bled for days but have stopped. Doing gentle exercises regularly to keep function. Feel like Frankenstein with upper torso stitched to lower torso but am able to move arms and hands enough to do simple chores and be somewhat functional. Power recliner is real blessing. Still using all zip up clothes for ease of dressing. Sure going to celebrate when the 2 JP drains are removed, oh fabulous day in the future.

    Good wishes for all for nice complete healing, steady as we go.

  • alto
    alto Member Posts: 82

    Thinking of you, Cascadians, and wishing you more relief soon!

    WandaLee, your doctor should have given you instructions and/or meds for pain. If not, call and let them know what's happening and ask what they recommend. My doc prescribed meds and recommended Tylenol, too. Drains cause pain that is usually greatly reduced once the are pulled, and the armpit area can be very sensitive, but I'd think you'd notice some relief around 10-14 days without the drains.

  • applejuice
    applejuice Member Posts: 49

    I'm at home, all went well so far. I'm not in terrible pain and i think i could do it without the strong pain meds but i 'm rather afraid not to get into a big pain moment so i took first the first pain pill today. I wish i could sleep during the entire next week!

    I got one of the mastectomies bras from Nordstrom before the surgery, and good thing i tried it on before, it felt uncomfortable for me, the lower edge being too tight and to close under the boob, where i have the cuts on both sides, so I'm looking to get another one, perhaps i'll find the ones on Amazon, you ladies are mentioning.
    I had muscle relaxant in the hospital but the dr did not prescribe at home so i am not sure if i should ask for it?

    Sending good vibes and easy recovery for all of you going thru this!

  • jaboo
    jaboo Member Posts: 368

    applejuice, I didn't receive any muscle relaxants...

    my hematoma on the right side is still very much there and still colourfull. It looks almost as another boob under clothing. (Well, I'm skinny) The left side also has one, but quite small. I am not sure what to do about it, if anything. No pain.



  • mactaz
    mactaz Member Posts: 592

    Hi all, cascadians, I’m hoping you feel better soon. What is Q ball? I hadn’t seen this before.

    Applejuice, if you decide to try the Amazon bra, they are small fit. I ordered one size larger but think two sized would have worked also. Biggest issue I have is the band lays right at the bottom edge of where they excised breast tissue so between the nerves firing and TE I think in that area it does get sore throughout the day. Also, my PS dis prescribe muscle relaxers, I tried one and didn’t really do much. I think they will be more helpful when they start to add saline to TE.

    Jaboo, I’m hoping this clears up for you soon.

    My drains are still in and I’m not sure if getting them out early this week is going to happen. Need to be at 25ml on top drain in a 24 hr period before they will pull that one. He said top drain has to be first to go, theythey would pull 2ns drain a day or two later. My pain comes and goes, last night was first time since Tuesday I had to take pain killer. I also have been moving my arm around quit a bit, not sure if I aggravated it or not. BUT I HATE THESE DRAINS.

    🤗 hugs to all

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Drains sound like a drag but I am so happy to hear your pain is not too intense.

  • Ccaxt
    Ccaxt Member Posts: 60

    Hi ladies, I'm new to this group and have a question. I had a umx with alnd on Wednesday. Have had very little pain...thank god! But I dont feel as though my drain is draining as it should. My swelling is increasing and my drain output decreasing. I can barely put my arm down by my side as it's so swollen. I called doc friday and they said all seemed normal. But swelling has increased since then. Does swelling get worse before better? I'm so frustrated!

  • mactaz
    mactaz Member Posts: 592

    Ccaxt, I had a UMX on Monday last week and have two drains. They removed two sentinel nodes. Are you measuring your fluid? The drain output should decrease and I have noticed that the area closest to my arm has gotten a little bigger and a little more sore as time goes on. I know everyone is different, but my top drain started at around 45ml per day and is now down to about 30ml. The bottom drain has always had very little output - about 20ml or less in 24 hr period. My PS saw me on Friday and said everything looks good also, so I am assuming the swelling is normal.

    If I were you I would call them again Monday morning just for piece of mind. Some of the women have gotten hematoma so better to ask question again - ....

  • Ccaxt
    Ccaxt Member Posts: 60

    thanks MACTAZ! I'm an anxious person as it is, so this isnt helping. Haha. I only have 1 drain. The swelling is all around my armpit and down my side next to my non existant boob. Haha more sore. Maybe a 3 on a 1-10 scale. Drainage started around 50 and yesterday was about 25. I guess my main concern is the draining has slowed way down and swelling has increased so I'm super paranoid its fluid collecting. Also, my drain is still red with only tinges of the yellow and has voids in the fluid in the tube. Like fluid, than an inch or so of nothing, than fluid. Sorry for the lengthy post! I couldn't be more disappointed in my medical team. I called the on call resident about my concerns and she was nice enough but basically told me to go to urgent care or ER if things got worse. URGENTCARE?!?!

  • mactaz
    mactaz Member Posts: 592

    Ccaxt, that isn’t a very good response. I would say what you describe is similar to what is happening with me but if you are anxious about it don’t hesitate to call your doc again and ask to see someone or get some info on why you shouldn’t be concerned. I also have what appears to be coagulated stuff in my upper drain, but it is finally getting clearer. My tubes also aren’t solid fluid, I think that is normal.

    My biggest issue is pain on the lower part of the non-existent boob. It’s really hard in that area and seems any pressure is causing pain. I see my PS Wednesday so hopefully it is just TE or something that isn’t an issue.

    Take cRe.
  • borogirl
    borogirl Member Posts: 30

    Are you still stripping the drain tubes? I’ve heard some women may get a little clot in the tube so stripping it helps keep things moving into drain bulbs and keeps suction working. May not be the issue but just a thiught

  • Cascadians
    Cascadians Member Posts: 72

    Frankenstine reporting in, upper torso stitched like tight corset with itchy thorns to lower torso, ready to scream and rip it off, but it's uh there permanently now. Hope the pressure lessens. Drains are definitely slowing down, will get them out tomorrow unless the snow storm forecast for tonight is bad. Q-Ball was very large ball in neck pack of local anesthesia that dripped thru 2 tubes into incision area for over a week. Appreciated the pain relief but wasn't used to carrying around this big sack and forgot about it a few times so partially yanked the long tubes out so it was bleeding profusely for days. That's out and healed. Busy doing light exercises and massages and will be going to Physical Therapist soon to try to diminish the huge blobs of glop filling armpits. Just walked my Newf in the rain in the dark for 2 miles, painful but do-able. Getting the JP drains out and eventually being able to wear normal comfy clothes that lift over head will be ssssoooooo nice. Now able to rest in old recliner with manual stick so gradually gaining a little arm strength. Still taking pain meds, have to dull the maddening itchiness. Still feel phantom breasts but ignore them. Day 12 post surgery and body is moving from shock to dealing and healing. Still waiting for that bend around the corner when it all gets a whole lot better.

  • yogamom2
    yogamom2 Member Posts: 64

    Hi Cascadians, Sorry you're having such a rough go of it. Sounds like you are staying positive, looking ahead and slowly moving forward. Best of luck with the PT, they are a wonder. Hope they can help you feel less like Frankenstein. Sending you prayers and gentle hugs.

  • alto
    alto Member Posts: 82

    Cascadians, I found 'belly breathing' really helpful in reducing the feeling of chest tightness. 5-10 breaths was enough to calm the spasms for a time. I did belly breathing a few times a day, and whenever it felt particularly tight (like when standing up after sitting for a while, or when taking a walk)

  • mactaz
    mactaz Member Posts: 592

    Cascadians, I certainly wish that things begin to get better for you, you have been through so much. You are a strong lady, but it does get to be a lot to deal with even for the strongest. Not much I can say except you know I'm always here for you. Take care and sending you hugs and best wishes

  • Cascadians
    Cascadians Member Posts: 72

    Went back to surgeon's office yesterday afternoon in snow storm and got 2 JP drains taken out. Kaloo Kallay oh fabrulous day. Excellent nurse, minimal pain. Major relief to not have those things tangling and swinging around and itching like mad. 18" of tubing inside body on each side. Out! Drainage sponges sopping wet by time got home but it's slowed down. Will be able to take those off, alcohol clean, put tegamet dressings on tonight and shower. Starting to elongate time between Norco/Valium dosage. Got really cold here and surprised muscles spasming all through upper chest since they've lost their layers of fat coverings. Started looking at new types of clothing styles to ease the transition. Shopping therapy is always helpful, lol

    Have upcoming month of appointments with lymphedema breast surgery specialist Physical Therapist so hopefully that will fix any potential emerging problems and ensure return to full functionality,

    Been doing all the exercises slowly and methodically plus deep breathing. Started the intermittent fasting which is easy and studies show dramatic reduction in cancer recurrence. Really looking forward to beginning to feel more normal and be able to do simple normal activities of daily living. Want my old good life back. Would like a brand new 16 year old fresh energetic body in perfect health to swap out, ready for a new rejuvenating boost. Heal well everybody, it's already February and spring and renewal will be here soon.

  • alto
    alto Member Posts: 82

    Congrats, Cascadians! Wooo!

    I've been saying Yes to retail therapy, too. Pocket camisoles are my new weakness.


  • mactaz
    mactaz Member Posts: 592

    Cascadian, hooray and happy to hear you are gett8ng therapy - we all need some good retail therapy. I know what you mean about the drains, what a pain. I got one out today and the other comes out on Friday. Also got my first expansion in TE (100 cc’s) and will say I’m sore. When they pulled the drain it was not bad at all but it is sore now, I think because still have one drain in some hole and it is aggravating it. Also a lot of tightness due to expansion.

    I have to say I had a couple of bad days, sharp stabbing pain which made me reach for pain killers. I called PS and they said take flexeril as prescribed and supplement with pain killers, he said unfortunately the pain is from the TE, one of those things we have to endure with reconstruction.

    Next thing for me is go see BS, I need to ask about one part of my path report that said one node had scarring and probably due to cancer cells that got zapped during neoadjunct therapy. If it was cancer, how do you know it didn’t travel elsewhere? Hopefully she will say not an issue, we will see. Also get my last drain out. Then next week is my 9th infusion of H&P and another expansion appointment, I will go in weekly for more saline placed in TE, will be glad when this is over.

    Hope all are well and healing - take care. Hugs to all.
  • jaboo
    jaboo Member Posts: 368

    Mactaz, I know this stabbing pain, ugh. The whole day today, I get a sharp stabbing pain near my breastbone. It's definitelly the TE, I can feel the whole edge going around it. But this one small place gets stabbed so fiercelly! I discovered, however, that when I press the spot, the pain is gone. Just like that. So I'm going around pressing the spot, but when I need both hands, I know I get stabbed immediatelly! The joys of TE!

    I am amazed at your quick expansion. I got just 60ml at my operation and my next appointment is on the 20/2 for a check up. But we are waiting and seeing what does my hematoma do - hopefully it decides to let go sometime soon.

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Mactaz, the scarring is actually reassuring to them I believe, because they see that yes, there was C, but it all died. If they find only dead cancer, it is considered pCR. You never really do know that it did not travel anywhere.... but it would be relatively rare for a live cell to migrate and metastasize and thrive, when all the other live cells that they know about (with a head start!) all died. Especially with a high grade cancer.

  • mactaz
    mactaz Member Posts: 592

    Santabarbarian, thank you for the insight, that does make me feel better about the situation. It is scary when you find out it was ready to migrate elsewhere if you hadn’t caught it in time.

    Jaboo, now that you say that when you touched it pain subsided, I noticed that too but hadn’t put the two things together. I’m definitely going to use that in future-people will just have to get use to me feeling myself up, LOL.

    Thanks to all for their continued support......

  • FlowersBaseball
    FlowersBaseball Member Posts: 2

    Hello, all!

    I’m reading all the posts and so impressed by everyone’s courage with this craziness! I’ve decided that this whole thing is really weird! No way around it, it’s weird!

    Had my surgery on January 17th. BMX with expanders.

    Today, I am drain free. My radiated breast is handling everyting really well! Knock on wood. It has been twenty years so I hope those years do help. The other breast, non cancerous one, is so painful. I avoided an infection so I am grateful for vigilance with the neosporin.

    I have what feels like a rib tear? Feeling and it’s so painful. Sneezing and some breathing are ghastly! It’s all on one side. Do you all have more pain on one side?

    And what’s the deal with the armPits? They are way worse than when they did the axillary dissection twenty years ago and took out thirty two lymph nodes. Feel Uber sensitive, burning, painful, and I cannot wear any bra. Is this normal? My PS was useless as usual. I just want to know what’s typical.

    One side is definitely having a harder time than the other.

    I feel like I have two sandbags sewn into my skin. Anyone feel that? It used to feel like two bricks...so maybe I’m healing.

    Thanks!!!!!

  • Mamihen
    Mamihen Member Posts: 10

    Hello, all January sisters!

    I haven’t posted since the day before my surgery but starters reading all of your recovery posts since yesterday . It’s so good to read all of your posts!

    My surgery went well last Wednesday , it took 9.5 hours. I spent the first 48 hours in a step down unit to ensure that the flaps “took”. The 36 hours under the warming blanket gave me constant migraines, especially since I wasn’t allowed to have anything to drink until the morning after surgery ....

    Once the blanket came off, I started feeling better. I was glad the medical team worked with me and added Flexerill to my meds (prescribed for home by my PS but not given in hospital until I asked).

    My graft areas are looking scary: mid thigh front to mid thigh in the back, near the groin area, a bit lower. The plan had been to have an incision from groin and then down my inner thigh but changed during surgery. The incisions are 10 inches long each and look awful, almost like having been cut with zig zag scissors and then crudely sewn together, but who cares.

    My breast are looking a bit spooky, with the right very blue due to stress during the recon. The skin is blistering and I’m putting Neospirin on. I’m not allowed to wear a bra, only a loose camisole for now.The new aereolas were made from thigh skin. Left looks great, the right as if they ran out of time , it kind of sits awkwardly on the surrounding skin and is sewn from the outside instead of the inside . But it’s all good .

    Saw my PS on Tuesday afternoon and he took both breast drains out. Now I’m hoping to get rid of the 2 thigh drains tomorrow....the Marsupial pouch that I bought before surgery has been wonderful, all 4 drains had room. I still wear it day and night .

    I am blessed to say that my path report came back all clear, 4 LN and all tissue.

    Thank you to all you January sisters for the support. I hope your recoveries are going wel.

    Sending a gentle hug to each of you,

    Xo Liv


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