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December 2019 Surgery Group

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Comments

  • PTAmomTX
    PTAmomTX Member Posts: 49

    Kjl- I had a drains when I had a hernia surgery 5 years ago, it was almost 4 weeks before they took them out. And one should have been kept in, I had to go back in for surgery because I was filling up inside with fluid. And then had drains again for another three weeks. It sucks, but better safe than sorry. I would keep my surgeons office updated twice a week with the cc numbers per 24 hours. Maybe they will see a pattern.

    When I just had the 2 drains removed this week, the PA said that she could tell they were ready because of the color- they had gotten really light with yellow fluid more than red. Not sure if that’s scientific at all, but I’m guessing she sees a lot of drains

  • Kjl_hammie99
    Kjl_hammie99 Member Posts: 11

    Thanks so much PTAmom, I’m going to phone my nurse navigator when the office opens.

  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 55

    PTAmomTX, I’m definitely considering ovary removal as my main reasons are like you, my youngest is five and I’m obviously producing a ton of estrogen.

    kjl, I just called my PS office and they told me no again on my last drain. They prefer 20cc’s in 24 hours. Ugh. Will try again Monday.

    As I will see my PS and BS both on Monday, I’m writing down a ton of questions. Will they refer me to an oncologist? I know radiation could have been in the mix, but not sure after it not being in lymph nodes. What I don’t get is I see some younger women doing chemo, rads, etc wit low grade tumors. I want to do everything possible, but it seems everyone’s treatment is all over the board.

  • Kjl_hammie99
    Kjl_hammie99 Member Posts: 11

    Hi Badluckbday

    I just got off the phone with the nurse and maybe Monday...sigh. She has also told me to stop all my exercises that take my elbow above the shoulder. Cross my fingers for Monday

  • rlmessy
    rlmessy Member Posts: 97

    Drains came out this AM. It wasn't bad but a weird sensations. Mine were down to about half a teaspoon in each side.

    KJL... I know it sucks but rest will help slow down the drainage. When my mom had her mastectomy 13 years ago she had a ton of drainage compared to mine. She was big busted, I don't know if that mattered. But I do know I would rather have it draining than collecting in your body to cause issues. But big hugs for lots of patience.

    PTAmomTX and Badluckbdaygirl...I am 100% estrogen positive and 94% progesterone positive. I am 52 and in perimenapause. Ovary removal is on the table as a treatment option for me too. I opted for surgery first because I felt that was the one option that was not up for negotiation and gave me the biggest survival boost. In early January I will meet with the oncologist to firm up the plan. I am triple positive so I have a few different options I can throw at this.

    Big hugs, December sisters!! ❤️😊

  • texasmama
    texasmama Member Posts: 129

    Kjl hammiie- I can empathize with you. I had my surgery on 12/12 and I still have two of my drains. One looks like it could possibly be ready to come out on Monday. The other will probably be around to wish me happy New Year’s.

    PTAmomTX and badluckbdaygirl- I have a BRCA2 mutation, so I’m also going to get my ovaries and tubes removed sometime next year. I have to wait until I finish whatever treatment comes next but I’ll be glad to get those time bombs out!

  • rhodygirl55
    rhodygirl55 Member Posts: 30

    hi all,

    It looks like we all have similar but different experiences, and so many questions. My PS wouldn't take the drains out until they were below 25cc for two days in a row. The second one was out at two weeks. I have been having a new set of pains at the incision during the night, i had fluid added to the expander a few days ago so maybe it's related, or maybe phantom pains? I had skin sparing R mx so maybe all the nerves are readjusting. But boy does it hurt! I'm also still sleeping a lot, I'll assume that my body needs it and just go with it, but I didn't think after three weeks I'd still be sleeping 10-11 hours a night.

    bdaygirl, i think you will be referred to an oncologist after your PS and BS appts, that's what happened w me once the pathology report came back. I'm Waiting for the oncotype results, then i meet w both medical oncologist and radiation oncologist on the same day. Fingers crossed I don't need chemo.

    Anyone have suggestions for bras? I have carefix brand ones from the hospital, then bought a couple more from amazon which i hated. Just ordered a couple of mx sports bras from Athleta. I hate bras in the first place, so of course now have to wear them 24/7.

    Stay strong!! 💕

  • Flnana2
    Flnana2 Member Posts: 102

    Hi all,

    Maybe we could get a group rate for removal of ovaries...it seems the way we are all headed. I am post menopause so I really have no use for them and 99% estrogen positive so I am scheduled for early April to get them out. I need to get through radiation first.

    My second drain came out at two weeks pot surgery but then Christmas came along and even though my kids are adults I still pushed myself too hard, mainly cooking. I woke up the 26th with a hard knot about 2 x 2 inches two inches below my collarbone. I thought it was a seroma but after talking to the PS she said she thinks I did too much and it's actually a muscle that bulging and painful. I'm back on the ibuprofen and resting and after 24 hours it seems to be better. I still have 10 days before my first fill but I also have a schedule I want to keep so I don't want anything messing it up.

    I hope everyone has a restful weekend.

  • Kjl_hammie99
    Kjl_hammie99 Member Posts: 11

    rlmessy - thanks for the words of encouragement - patience is definitely not a strong suit of mine.

    TexasMama - I'm hoping for you and drain removal before the New Year , that would make it really Happy

    RhodyGirl - I'm wearing an Amoena Hannah, it is very comfortable and has removable pockets for the drains. I've been told that I will need to wear it for awhile even back to work before the incision is healed enough to be fit for a prosthetic. Maybe google the Amoena brand and check out some different options. I too am having phantom feelings, I feel like my nipple is still there and it is itchy, all the literature I've read seems to indicate that this is normal. Whatever normal means :)

    Thanks ladies - I really am glad I found you - hugs to everyone

  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 55

    Thanks everyone! I'm literally trying to not move and finally rest to get this damn thing out Monday. With Christmas, kids, etc. I may have been overdoing it. I did ask the nurse this morning as in the last few days these TE's have gotten bigger and had NO idea that they would look and feel like bricks as much as they do. She said normal (but I haven't even begun the filling process🤪).

    Rhodygirl, did your BS automatically order your Onco test or will the oncologist? I will pray for no chemo for you. I'm still wondering about radiation, but will find out Monday I guess. I've also had pains by the incisions at night and am not sure since mine were skin sparing as well.

    Texasmama, I know several friends that had the procedure (no cancer, but gene) and said it wasn't bad at all. I figured after this procedure, then what the heck and I do get a tad bit more estrogen when I enjoy wine (yes, I do😉).


    rlmessy, your stats seems similar to mine in regards to percentages.

    My mindset, is throw what I can (reasonably) at this now so I can hope and pray for no recurrence down the road. I was on the other side and cared for my first husband who had stage 4 colon cancer out of the gate when we were both 30. Cancer sucks, but I'm not letting it get me down! And, I'm getting new boobs in the process😀

  • PTAmomTX
    PTAmomTX Member Posts: 49

    Birthdaygirl- the one reason that I’m not concerned at all about the ovary removal is I went to a party, and a lady had a full vag hysterectomy and ovaries removed earlier that day. She was having a blast. Probably shouldn’t have been mixing champagne with the pain killers, but she said it was a cake walk compared to basically anything else. The next day she was fine too and we went to lunch. I’m 43 and have been asking for the removal since our daughter was 1yo, but no doctor would remove them even with my family history. My favorite quote from a dr was “what if your husband decides he wants more kids?” Really?

    I got one of the BROBE mastectomy bras and some other’s on Amazon. They felt fine to me, but the doctor decided to switch me to ace bandages. So it’s like I’m wearing an annoying strapless bra that slides down all the time. I can’t wait to switch back. I started knitting a bra top that has some support but isn’t constrictive at all. I’m hoping that will be a good compromise. And I’m bored and there are only so many fake boobs I can knit or socks for the family.

    Here is a question for everyone- who is still sleeping upright vs. laying down? I’ve tried napping laying on my back and the pain hurts too much, so I’m still sleeping propped up on loads of pillows. Anyone else


  • texasmama
    texasmama Member Posts: 129

    I tried sleeping flat last night, but I didn’t last long. I definitely still need the wedge.


  • rlmessy
    rlmessy Member Posts: 97

    Still sleeping in a wedge with a pillow and a pillow under my knees. Plus I have pillows on both sides so I don't roll over and it keeps my arms up. Tonight I will sleep drain free and without an ace bandage. We will see how it goes.

    Sweet Dreams!!

  • moderators
    moderators Posts: 8,744

    Welcome, kjl_hammie99! We're glad you've joined us here, and hope you find this to be a supportive place!

    The Mods

  • Teslafied
    Teslafied Member Posts: 11

    PTAmomTx, I’m normally a stomach sleeper, so it’s been a hard adjustment for me this week. I can’t sleep on my back or sitting up because I stop breathing and wake up gasping for air. So I keep switching from side to side.  I also have restless legs so I’m constantly getting up to stretch.  I’m going to try elevating my legs on extra pillows tonight to see if that helps.  The best thing about my hospital stay was these things they had on my legs to keep the circulation going while I was in bed.  No problems with restless legs that night.  All of these dumb little things we have to put up with-hopefully only for a short time. 

  • redhead403
    redhead403 Member Posts: 65

    Rhodygirl55:

    I was at my wits end buying bras camisoles etc. My RO second opinion suggested Make Merry. The bras are very soft and comfortable. and reasonably priced. Here is the link https://shopmakemerry.com/

  • rhodygirl55
    rhodygirl55 Member Posts: 30

    Good morning,

    Thanks for the tips on the bras, I will check some out today.

    Sleeping- I had started to be able to sleep on my side again which made me so happy (and well rested). But since i had an addition to the TE on Monday, I have been waking up with excruciating nerve pains :( or maybe I’ve been overdoing it a bit. I’m going to go back to sleeping upright to see if that helps. I was also off any pain relievers, so maybe I’ll add those back in too. A good night's sleep makes such a difference in the state of mind.

    Bdaygirl- my BS ordered the onco test after the pathology results showed more tumors than were seen in the imaging and there was vascular involvement. Looks like they take all of the data at the time and make a decision, that’s what I have found frustrating is that there is no clear path, and lots of waiting. But I guess in the end I totally trust her judgement, and everything is presented to a weekly group and discussed to come up with the best plan.

    Hope you all have a good Saturday, it’s as beautiful a day as we get here in December, so I’m going on my first long walk by the ocean today. That should help me sleep well tonight 😴


  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 55

    PTAmomTX, I can’t believe your doctor said that! Sleeping on my back is getting really frustrating, but maybe not as much as this drain that keeps producing!

    Rhody, I will ask my BS on Monday about that test. I definitely want it!

    I have yet another question.... I can’t find LVI anywhere on my final path or original biopsy report. Wouldn’t they have checked?

    Thanks ladies

  • PTAmomTX
    PTAmomTX Member Posts: 49

    What is LVI?

  • rlmessy
    rlmessy Member Posts: 97

    PTAmomTX...I think LVI is referring to lymphovascular invasion.

    Both my biopsy and final surgical pathology report showed results for it. My biopsy said none but my final pathology showed area suspicious for it. I meet with the oncologist on Jan 7 to find out my next steps.

  • PTAmomTX
    PTAmomTX Member Posts: 49

    Thank you. I meet with my onc/BS on Monday so I want to know what questions I should ask about the pathology reports. Then I meet with the PS on Tuesday for that side of things. Sometimes it feels like they want to pass my questions off to the other one. THey work together a lot, so when I asked the BS about the drains, she said ask the PS. I asked the PS and he said BS can take them out.... Same thing with pain meds. They both said to double the dose, but since its longer than I would normally see them because of holidays, I’m running out. I get why no one prescribes them anymore for fear of being seen as over prescribing and the risk of patients getting hooked. But there are valid reasons for them. I know they won’t take the pain away entirely, but I would like to be able to move and turn a page in a book without shooting pains in my armpits. Ok, rant over


  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 55

    rlmessy, thanks and yes, that’s what I was referring to since it seems so many people mention it. I guess it means it’s possibly in blood? Who knows.

    I will ask on Monday. I agree PTAmomTX, my two docs do the same. I had a meltdown day. I feel as though some days I take one step forward, two steps back. Drain never goingaway, pain is still pretty bad. I thought I’d be further along.

    Ok, pity party over!

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    Hi everyone, I just had surgery yesterday morning (single mastectomy staying flat, and 5 lymph nodes removed). I was discharged same day as outpatient surgery, so it's a little disconcerting not having a nurse to assess if things are normal or not. Yesterday I was fine, little pain or swelling, but as the day goes today my arm and chest are swelling quite a bit, and I worry that my binder is TOO tight or maybe pressing too much into my armpit. It all feels very tight and swollen and I keep having the urge to take the binder off (I only did so twice, for 20 mins). My partner said the nurse insisted the binder be tight and worn continuously, and that swelling is normal, but my arm and hand feel a little numb and tingly like nerves are being cut off (which I know nerve damage is possible from the lymph node removal). I'm just a little scared, I guess, unsure what's "normal", and since it's the wknd there's only an "emergency " number to call at my surgeon's, so I can't just check in and ask. Has anyone had a similar situation, with lymph node removal?

  • Kjl_hammie99
    Kjl_hammie99 Member Posts: 11

    Badluckdbaygirl, I understand your frustration after today’s measures I can’t see the drain coming out Monday, my fluid is still very red as well so I’m not sure what that means. I’m still sleeping upright and using a neck pillow not suif that is any help

    Thanks

  • PTAmomTX
    PTAmomTX Member Posts: 49

    Hi Heart! I’m not sure how tight it should be either. My dr kept saying “supportive, but not restrictive.” Obviously he’s never worn a bra. ;). The nurse is the one that said the post-op bra was too tight and moved me to a bandage. Right after, it felt REALLY tight underneath and on the right side. Like hard to breathe tight. It still feels tight on the right under the armpit. The swelling has gone down, but everything still feels tight, so I am thinking it’s pressure on bruising under the skin. Even though I can’t see it, I’m sure the muscles or tissue or whatever is left in there is bruised. So I think any pressure at all feels 200x worse.

    And everyone/every surgery is different, so who knows? I’m overly stretchy thanks to a genetic condition so I’m surprised that they didn’t bind me up in a corset to keep things from shifting around. My pain level this morning is hitting a 9. I swear my pain has gone up the further away from surgery I get. And I was told no ice packs or anything. I’m going to take a bunch of CBD oil and see if it helps. Can’t hurt

  • squatchmama
    squatchmama Member Posts: 16

    Thank you to all you ladies for posting about your surgery. I am in January surgery group and hearing your experiences helps me a lot!

    PTAmomTX- Let me know if CBD helps your pain.

    To all you brave ladies a big thank you and prayers for quick healing and a dose of calm and patience. Love to all.

    💖

  • nadinem
    nadinem Member Posts: 3

    I'm late to the party. I had my surgery on 12/20 and I'm so sore where the surgi-bra band is. The incisions feel and look fine, but the rubbing is rubbing me the wrong way. I'll look up the thread for bra suggestions, but one thing someone told me that sort-of worked is to put a maxi-pad, padding side against the incisions and held in place by the band. It's working somewhat. But when the heck have people heard that I might be able to sleep without a bra. I can't wait.

    Nadine

  • texasmama
    texasmama Member Posts: 129

    nadinem- The surgical bra is the worst! Mine hurt me also.I was allowed to wear a sports bra about one week after surgery. They want me to wear the sport bra around the clock for six weeks.

  • sugar77
    sugar77 Member Posts: 1,328

    TexasMama, can it be any sports bra or is it a special mastectomy one?

  • PTAmomTX
    PTAmomTX Member Posts: 49

    Just got home from the BS- all drains are removed!! Glory be. And she took me out of the awful ace bandages. I took in a bunch of post surgery bras and had her pick one and check the fit. It feels much better. She also called in pain scripts which I was very thankful for since I took my last one today and these puppies hurt like hell.

    The bra she settled on is a front zip from Amazon-sized up. Wanayou is the name- I think they are an Amazon brand. The fit is good with no uni-boob. A 2 pack is $16+

    I got a copy of my pathology report- all benign, but they ended up finding and testing a lot more masses than we thought there were. The lymph nodes removed were on the left side, but we still don’t know why the right has been so much more painful. Again, I didn’t feel the drain removed from the left, but the right was an ice pick on fire and doused with rubbing alcohol. I announced my drain removal to in-laws in the waiting room and three other women started cheering for me. It felt like a wonderful group hug

    I’m hoping everyone else’s day is going well.

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