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August 2017 Surgery Group

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  • Sweet_Pea
    Sweet_Pea Member Posts: 90
    edited September 2017
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    Toughiebird, what does your plastic surgeon say when you have gone in for the fill or other revisions? I'd ask for an appointment if your next fill isn't soon because it sounds pretty bad and the burning feeling...maybe they have an easy answer to that or maybe someone needs to look at that for you. Tomorrow I'll be three weeks out and I don't have burning, I don't think...lots of other weird pains from the TE, like there's a huge paper clip all bent out of shape in there hahaha. I wish I could help you!

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    hi bird i went flat and feel all that too. My surgery was the 23rd. Hugs it is getting better n better each day.


    So my surgeon just called. I guess not all my results werent in... I am her2+ so i will need Hercepton and chemo. And inhibitors. I am so sad and shocked... Ffs. So frustrated i wanna cry.

  • AliceAgnes
    AliceAgnes Member Posts: 44
    edited September 2017
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    Mrs. Winnie, for encouragement and information, join the TRIPLE POSITIVE GROUP on these message boards if you haven't already. The Her2+ piece does add a whole new dimension to your treatment program. I started Herceptin in March and it will continue until March of next year. Have been tolerating it well. Chemo also started in March and ended on July 10. Two out of the six treatments were difficult for me, but everyone's story on that is different. Her2+ is an aggressive cancer and must be treated aggressively. Hence, the need for chemo. Eventually I will be put on an inhibitor and that will be for life, I am told.

    Doctors do try to space things out for you without compromising your overall treatment plan. The important thing is that the cancer is TREATABLE. Just try to take things one step at a time. Going through treatment is better than the alternative!

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    thanks Alice i kinda knew i had aggressive from the mammo to the byo no lump by the time surgery came i found the tumer. Im feeling very let down. I been hearing caught early. Small tumor. All is good. Probably no chemo. And this morning all has changed. Very disapointed.

  • AliceAgnes
    AliceAgnes Member Posts: 44
    edited September 2017
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    I hear you, Mrs. Winnie. I would be so very disappointed, too, if my case had sounded simple in the beginning, then suddenly got complex.

  • mommyerin
    mommyerin Member Posts: 99
    edited September 2017
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    Beachmama- I would definitely look into a third opinion! Ask them to request your pathology slides so they can look them over. I had a close margin which has added 2 (possibly 3) days to my total radiation treatment. So far radiation has been a breeze (granted in only 2 days in). Definitely consider all your options and weigh the pros and cons of each. It suck being in limbo (I was there for a while surgery and radiation wise). Get all the info and opinions you can!

    Mamabear80- So sorry you're joining us! I hope your surgery went well. I have a crazy family history too and am BRCA1+. I was diagnosed this past March at age 31 (youngest in my extended family). Cancer sucks at any age, but being in the under 40 club definitely brings its own unique challenges and stresses. I am taking femara now (tamoxifen for post-menopausal) since my MO is shutting down my ovaries with zoladex and I'll be having a oophorectomy/hysterectomy later this year. Despite it only lowering likelihood of recurrence by a small percentage, being so young, I'm willing to try anything to keep this disease gone!

    Rokel- Great news!

    Sweet_Pea- Hang in there! I'm no help in the TE department, but hoping it gets easier for you soon!

    LisaBS- Glad you're through your second surgery! I totally feel you on the never ending roller coaster. Big hug! I hope you get good news!

    Rljessu- Add me to the "never watched GOT club," lol.

    Mrs.Winnie- So sorry to hear that! I'm Her2+ as well and have been through chemo. Feel free to PM me if you want to talk treatment SEs and whatnot. It's not fun, but it's tolerable. I'll be thinking about you.

    Well, started radiation on Thursday and it's a breeze compared to chemo and surgery. 6 weeks to go though, so we'll see. Big hugs and positive thoughts to all of you

  • WellWishes
    WellWishes Member Posts: 15
    edited September 2017
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    Hi everyone. I am really sad to hear that MrsWinnie. :( I have an appointment with the surgeon and oncologist on Thursday; a little nervous about that but hopefully all goes well.

    My big thrill for today is that I am FINALLY cordless!! Thankfully, I got my drain removed first thing this morning. I was so sick of dragging that thing around, I could scream. It didn't really hurt at all coming out; just burned a little when he snipped the stitch but it has been burning SO bad non-stop anyway... it didn't really matter.

    I would definitely get that checked out Toughiebird. My surgery was Aug. 25th and I don't have the burning (other than that drain tube issue mentioned above) that you described. Poor thing. I do have pains, crazy skin sensitivity, odd/numb parts, soreness and stiffness, etc.
  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    Thanks darlings. Today i still want to to be a 5 year old and have a hissyfit on the floor lol. Today i hope the rain holds off so i can get a walk in to de stress. I wasnt mentally preppared for Herceptin.. Was the alway back of my mind chemo and AI were probably going to happen. I honestly cant get out of my mind tho.. They got it all.. Why do i need all this crap... Ugh!!!

  • MarilynIllinois
    MarilynIllinois Member Posts: 50
    edited September 2017
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    MrsWinne, sorry your doctor gave you disappointing news. Can you get a copy of the pathology report to read before your next appointment?

    Hope you can get a good walk in today. I think a hissy fit is a good idea. Lol! Best wishes

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    Marilyn probably.. I see the oncologist month end will learn more then.. Sigh lol. Got a great walk in before the rain.. Went further then yesterday woot go me. Next time bring water lol and i could go even further.

  • Sweet_Pea
    Sweet_Pea Member Posts: 90
    edited September 2017
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    MrsWinnie, so sorry about your bad news. But good for you for going farther on your walk today! I feel tugs still every time I take steps so I have to take my walks short for now :( I also think the hissy fit is a good idea.

    WellWishes you are DRAINLESS! Congratulations! That's a huge step. I remember for 2 days after I kept reaching for the cords when I would get up (even though they weren't there). Too funny. Phantom cord syndrome.

    I can't remember which of you mentioned Knitted Knockers but I got in touch with the women who make them in Spain where I live. They're sending me some! I can't even wear a bra yet, so they'll probably get here just in time for me to be able to try them out. I'm so excited. Thanks for the tip!

  • WellWishes
    WellWishes Member Posts: 15
    edited September 2017
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    Oh yeah, forgot to mention that I had my first fill yesterday; 50cc which brings me to 250cc (half-way there if I understood the paper correctly). It hurt a bit when he put the needle in but couldn't feel much else. Last night though, I guess as the weight was re-adjusting, the whole TE side was pretty achy and still is somewhat today. Not terrible... just somewhat annoying, like it is reminding me that it is there.

    Highlight today... SHOWER!! Holy mother of glory, the water felt both amazing and creepy at the same time. It hurt a little when the water hit the "reduced breast". I assume because that thing is tied up tighter than a balloon. The mastectomy side just felt really weird when the water hit it; it has an odd combination of dead spots and hyper-sensitivity. I was trying to make sure that the water didn't get in the drain hole too much but I also needed to shave my armpits. That is the highest I have raised my arm in over 3 weeks!

    Driving is strange too. I was able to drive for the first time yesterday and I usually always tuck my seatbelt under my boob. Well... that doesn't really work anymore cause I don't have much boob on that side to tuck under. lol... I also can't really use my left arm much to steer; just kind of to assist my right arm with turning the wheel. *I am sure that is not the safest thing in the world but it was like SWEET FREEDOM, I can drive again!!!

    Hope everyone is feeling better today. One day at a time... hugs. :)

  • cyclegal
    cyclegal Member Posts: 49
    edited September 2017
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    MrsWinnie - a hissy fit is perfectly acceptable! At the very least, it would help to get some anger out! I have a five year old, and it seems to work for her :)

    MommyErin - glad the radiation is relatively easy. You deserve some aspect of your experience to be easy, right?!

    WellWishes - big congrats! Showers are glorious, although I can't relate to it the hyper sensitivity...I just have mostly numbness. I'm hoping some feeling comes back -I was holding a laptop between my chest and arm the other day, and I couldn't feel that the laptop was even touching my boob! Felt so strange.

    I hear ya on the seatbelt, too - I tend to use one hand to pull the seatbelt slightly away from my chest, otherwise it uncomfortably digs into both of the TEs and doesn't feel good.

    I have AirXpanders, so I do my own fills at home with remotes, just 10cc at a time, so they aren't painful. I can do up to 3 fills a day, 3 hours apart, but I've only done 2 fills on one day once. Other days, I've only done 1 because I'm still getting used to these things. I had small breasts before surgery, and it's really strange to have my boobs getting bigger and bigger, but I am looking forward to the end product.

  • beach2beach
    beach2beach Member Posts: 245
    edited September 2017
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    rljessu,

    On my incision they were dissolvable stitches that had a gummy glue on them. Once it peeled off I started using the cream. Was about 2 weeks when it started to come off. I just bought Vit E. capsules to use also.

  • rljes
    rljes Member Posts: 499
    edited September 2017
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    I had my MO appointment a few days ago and seemed indecisive on their decision for chemo.  On one hand they said it might help my Skin Disease and on the other hand I might not need Chemo at all.  The tumor was Smaller than originally thought. But i'm still high risk.  / MO is going to talk to my RO and Rheumatologist.   MO was suggesting Cytoxan & Taxotere and of course Herceptin. Then again said just the Herceptin and Radiation might be enough.  Then mentioned Carboplatin instead of Cytoxan.  I was so confused I needed a chart.    I asked if I just had Herceptin for the HER2, if that would help, Dr answered Yes.  No mention of anti-estrogen pill in this mix. 

    I asked if I could drive myself if I took Chemo, and answered yes.  If the SE were bad enough you could not drive, then we would stop the Chemo. 

    MRSWinnie, I'm so sorry you are HER2+/  I found out after 4 tests, and the thought of having IV infusions every 3 weeks for an entire year was overwhelming.   Didn't you say you had issues with your drain tubes because you were so small?  I can't remember if it was you or not - someone did and I have the same problem - protruding tubes so I am really worried about a port.  But of course, my Dr when asked, assured me a port would not hurt and I really didn't have to have one.    ????????????????? 

    I feel the same as you MRSWhinnie.   Why go thru more when they got all the 'crap' out in surgery.

    My Pet Scan is Clean.  Yeah Me, 

    Maybe my RO appointment tomorrow will shed some light, but probably just make it more confusing. 

    Any thoughts which Chemo treatment is less invasive? : Cytoxan or Carboplatin // Taxotere or Taxol ? 

    And one more question :  What is the chemo treatment "AC" ?   
    Well, one more question - I want to know how SheLabela is getting along with your Proton radiation?  

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    yeah that was me i still have marks and bruising where my drains were. But a pic line tube is much smaller... Heres hopping it all goes well. I so not looking forward to a year of this yet.. Ugh. Im happy being flat... I had no troubles deciding for the surgery couldnt happen soon enough. But chemo, AI pills and herceptin.. Bleck. I cant even take pain pills with out them being to strong.. Half beer for this girl.. What am i going to be like on all this shit... 1 coffee a day or my heart pounds for days. So dont want to go through all this. Sorrry i lost my cheerful self.. Cant seem to find me..

  • rljes
    rljes Member Posts: 499
    edited September 2017
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    thx Beach2beach.  maybe I should make a concoction of Vit E/Coco butter/ Aloe Vera/ and everthing else - I have a huge scar on my shoulder from accident 40 yrs ago and never did anything to it, now it has scar tissue and gets red and hurts a lot.  I don't want to make that mistake again.  

  • rljes
    rljes Member Posts: 499
    edited September 2017
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    MRSWhinnie, I hear your pain and frustrations. Where my protruding tube was still is bruised and hurts.  The BMX was the easy choice with no reconstruction.  I am so frustrated with the decisions I have to make now.  It feels like the very beginning.  Well, it is. Its week 4 with 48 more to go. I am hoping the both of us get clarification to be able to make intelligent decisions. Take care

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    hugs ladies hugs rljessu. Raining today bleck so much for my walk. But feeling better this morning. Big virtual hug from me 2 you.

  • beach2beach
    beach2beach Member Posts: 245
    edited September 2017
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    Rlj..great news that the pet scan was clear!!

    MrsWinnie, have that fit. Over and over if that releases some of the frustration. You are doing all you have to do to beat this thing. Keep that in mind. You'll do it!!! You'll find a new you in there with girlpower that you never knew you had.

    You will both move forward and get through this. xo

  • KatjaNL
    KatjaNL Member Posts: 7
    edited September 2017
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    Hugs all, thought I would post an update for me - since August 31 lumpectomy came with two positive margins, I have another one scheduled for 3rd of October. I'm fighting to keep my breast... I pushed my OS to send me to additional scan - BSGI test - I have read a number of researches who agree that this one is very sensitive especially for ILC. Will keep you posted on how it goes - have it booked for this Friday. Strength to all!

  • mommyerin
    mommyerin Member Posts: 99
    edited September 2017
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    MrsWinnie- I know the thought of a year (or years in my case) of infusions every three weeks is super frustrating, but herceptin is really an AMAZING drug! It (and perjeta, which I hope you'll be getting as well for 6 infusions) have done wonders in increasing survival rates for Her2+ BC. Because I'm metastatic, I'm receiving herceptin and perjeta long-term, but my infusions of just those two drugs are a breeze now that I've dropped the taxotere and carboplatin. I drive myself to and from the infusion appointment, go to the gym that same afternoon. If you haven't already, look up some of the statistics on herceptin and perjeta. You have every right to be upset, and believe me, I've had many a meltdown, but thinking about how beneficial herceptin is has definitely helped me come to terms with it

  • mommyerin
    mommyerin Member Posts: 99
    edited September 2017
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    katjaNL- Oh no! I hope you get positive news from your scan

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    thanks Mommy. Oh dear katja good luck with second surgery.

    Feeling better now about upcoming treatment just had to wrap my head around it. Hugs to all. Hissy fits help as long as the witnesses understand... Yep thata a biggy. Hugs for understanding.

  • beach2beach
    beach2beach Member Posts: 245
    edited September 2017
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    bump

  • Dodes
    Dodes Member Posts: 18
    edited September 2017
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    hey all. i had my surgery, and then crawled under a rock. i've been keeping up with you all by reading, i just haven't posted. i hurt for you with the difficult news, and rejoice for the good news.

  • beach2beach
    beach2beach Member Posts: 245
    edited September 2017
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    Dodes, hope you have been recovering well and hiding because your recouping.

  • KatjaNL
    KatjaNL Member Posts: 7
    edited September 2017
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    Thank you all for good wishes! Did my MBI/BSGI scan today - although they say the pressure is less than during mammogram, it's been totally same (but now after the operation on Aug 31 it was horrible)...One round of pictures took 8 minutes when you have to sit still with a squeezed boob... They made three projections of the left (where I had a lumpectomy) and two of the right (nothing found there so far). The doctor was not there and now I have to wait till Monday for the results.. Fingers crossed nothing new and more clarity for the next steps. Hugs and strength to all!

  • beach2beach
    beach2beach Member Posts: 245
    edited September 2017
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    KatjaNl...Nothing like having to wait some more!

  • MrsWinnie
    MrsWinnie Member Posts: 119
    edited September 2017
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    drove today wooo lol i coulnt drive far but that felt great.. Went to guy frenchies (used n new clothes kinda like salvation army store. But brand names with some times tags) anyway made out like. Bandit 80 bucks worth.. 3.25 average each lolol. Gotta dress different now lol old clothing just dosnt fit properly. Even found a jacket vest and new jacket. Not to mention shopping on my time alone... Soooo nice