DIEP 2013

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  • Jubby
    Jubby Member Posts: 85
    edited August 2013

    lahela, the Tamoxifen is just pre and post op to stop clots like Jeannie says.  I start back on it next week (joy oh joy!).  

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  • klanders
    klanders Member Posts: 244
    edited August 2013

    Jubby - The oxy pain meds give me insomnia so in the hospital they gave me Ambien to sleep. I did okay with it the first night but the second time I took it it gave me nightmares, so I stopped.



    Goldie - I came out of surgery with smaller hips -it wasn't from the weight-loss. In the past year I had developed little love handles so they used my stomach fat and my love handles to re-create my breasts. I am able to wear all my pre-surgery bras which were B cups. I don't fill them out quite as well as before but that should change at stage two when they do fat grafting. I (vainly) thought I was pretty thin before the surgery so I was amazed at how much fat they were able to find. There is a forum board, separate from this board, that shows pictures of before and after if you want to see different women's results.



    Bluebird, no good words to say. Just know I'm praying for you.



    Deb - Welcome to the club Deb. It's a club that none of us want to be in, but it's warm and welcoming nonetheless! You will find a lot of good information here Including lists of what to pack. All you really need is a button-down shirt and loose pants. My hospital supplied everything else including underwear and bras but every place is different.



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  • Janet_M
    Janet_M Member Posts: 1,068
    edited August 2013

    Kristine (bluebird) - 

    I wish I could take care of you. I'm sure we all feel the same way, and collectively we could clean your house, make your meals, or help you wash your hair.  Please know that we are with you in spirit. 

    Yes - we understood going into surgery that 'there was a risk' but nobody ever believes that the worse will actually happen. Especially in a place of healing. And it should not have happened.  And the 'care' that you didn't receive is abysmal - at a time that you needed it the most.

    If and when you feel like it - come back here and check in. There are a lot of concerned ladies here, disbelieving of your unfair situation. And if you feel like venting, or ranting, or trying to figure things out there are no limits to the length of your posts, or to the amount of swear words you can use.

    Till then, I hope you can rest.

    Janet

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  • Tracy516
    Tracy516 Member Posts: 183
    edited August 2013

    Debwarrior!!!WELCOME

    Here is my list for home. My husband worked and I only had someone the first 2 days. I just had my surgery August 15th



    Recliner or couch

    Pillows!! - Lots for side, back and chin
    Wedge pillow

    Sheets/blankets

    Drain holder- hospital gave me 4

    Small table to load up next to you

    Gauze

    Tape - I didn't use because I wore a bra

    Thermometer

    Meds- any that dr recommend

    Heat pad - if dr ok'd

    Wipes - not perfumed

    Tissues

    Cosmetic bag - makeup & all supplies like deodorant, nail clippers, file etc

    Paper and pen

    Books/Magazine

    Any electronics/head phones iPads remotes etc

    Sport bras - or what dr recommend

    *Tongs or a grabber - this I found I need the first week because I couldn't reach everything in my table!

    Shower chair - if you can't get have a sponge bath. Don't try standing yourself!!!

    Walker - I used on a few days so you may not need!

    Water bottle to drink

    Lots of good food with protein in fridge

    Hard candy:)



    I hope this helps!



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  • Janet_M
    Janet_M Member Posts: 1,068
    edited August 2013

    DebWarrior - Kinda scared but moving forward pretty much sums it up. The waiting's the hardest part and I think a lot of us over-prepare. I certainly did. 

    To Tracy's excellent list I'd like to add - Wedge pillow

    I used it as a support base, and added other pillows depending on my mood. I also rented a shower chair, which I never used. I looked at recliners, but never bothered because I was okay with sofa and pillows (But, I did know where I could get one delivered at a moment's notice). And in terms of clothing, I lived in loose linen blouses and a loose stretch skirt. 

    Before surgery I went to Target and bought a whole lot of clothes in different sizes. I didn't know if there was going to be any swelling and I wanted to be prepared. After few weeks I realized I wasn't swelling much at all, and Jim (my DH) returned almost everything except for a robe and my skirt

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  • SheChirple
    SheChirple Member Posts: 954
    edited August 2013

    Bluebird:  I am so sorry to hear your recent setbacks.  I can relate.  You are not alone.  I know how hard it is to keep going back with promises or hopes of a better outcome.  I had my BMX in Nov, 2011. I woke up with two missing breast with small TE implants.  After months of expanding, months of waiting I was so excited to get my exchange to permanent implants in July, 2012.  Then, post op infection.  IV antibiotics, in the hospital for 7 days.  I went home with both breasts having my permanent implants.  I was back less than 12 hrs later with the other side (my non BC side) swollen and leaking fluid.  I went into surgery expecting, just like you, clean up and debridement.  I woke up with out my right breast.  I was truly in a bad place.  This is where you are now.  I promise it will get better.  It’s hard, but keep pushing through.

    PS wouldn’t even talk to me about what he would do, but promised we would fix it later.  That was August, 2012. After a few months being ‘uniboob’, I finally asked for a proper prosthetic.  It really helped me emotionally.  I thought “how shallow am I that I have to have a prosthetic boob to feel ‘right’”. With my implant I was DD on the left and flat/concave on the right.  It was not until Nov 2012 my PS talked to me about fixing my situation.  We were looking at December, 2012.  Then I had emergency appendectomy less than a week before my pre-op apt.  Grrrr…he pushed me back. Anyway, I finally got my DIEP in May, 2013.  I heal slow, so I’m still healing. But I am healing.  I have two fairly symetircal, natural looking breasts that are large, sag well and are shaped decently for a 49 y/o woman.

    We are here for you bluebird.  You are NOT alone. It is hard to keep going, but, please, keep going.  Push through.  Find your strength in the support you have here, and in your family and friends.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2013

    Good morning, gloobsters!  I slept all night on my back, with a little pharmaceutical help, and it's another beautiful morning in SoCal.  My DH is out tearing it up on his bicycle so I'm feeling a little left out, but I'll be riding again in a couple of days.

    My DS has a visiting lady friend, and we all went to a museum together yesterday.  They offered complimentary use of wheelchairs, so Jerry popped me into one and I saved my post-op energy while he pushed me around.  This worked great, and Jerry loved having a leash on me so I couldn't read too far ahead of him.  I also had the opportunity to examine people's shoes, which was fascinating.  Yeah, I love me some sexy heels, but why would you wear 8-inch platforms to hike around a museum?

    My PS just called to ask how I was doing, and explained why I was having a lot of pain under the breasts.  He had to do something complicated with the intramammary fold to shape the girls into breast-like extensions instead of hamburger buns.  He also asked me to call him after my first shower to let him know I'm OK.  He is an artist and a sweetie.  

    I think we should figure out a way to add a permanent list of pre-op needs and a hospital packing list to our thread.  Seems like it comes up a lot, and it would be helpful for our pre-DIEP sisters.  Nihahi?  Buehler?  Buehler?...

    Happy Saturday, everyone!  The other DS is bringing Aubrey over to watch the Michigan game today, so grandma will get some cuddle time!

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  • SheChirple
    SheChirple Member Posts: 954
    edited August 2013

    Sweetpickel : oh, no. colds are the worst.  The coughing still hurts my belly.

    Cherrie:  YAY – never thought you’d be happy to hear the word “fat” in any diagnosis, huh?  Good news, though.

    MRT:  Weeks to walk upright, compression bras until first follow up with ps at 10 days. I’ve been wearing sports bras since, with the occasional “real bra” when needed.   I still can’t really sleep on my side more than 12 wks out.  That is because the breast ‘flops’ and pulls on the incision lines.  It will depend on your incision. Different docs get different lines.

    Lahela:  I would lOVE to see pics of my surgery.  Heck, I’d like to see the video, or sit through one. I just saw that you had your DIEP just 6 wks after diagnosis!! Wow, I’m a little jealous.  It has been such a long journey for me, and still not over.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited August 2013

    Klanders, do you mean Timtams site?  If you have a different one I would love to see it. 

    SBE, I love how you used your wheelchair time to do serious research on shoes....lol

    Did anybody get their yoga dvd yet?  It's been days since I mailed them.

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  • klanders
    klanders Member Posts: 244
    edited August 2013

    Goldie, Yes, I just was having a "blank moment" on the TimTam name.

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  • FireDragonll
    FireDragonll Member Posts: 27
    edited August 2013

    Thanks Goldie, I got the yoga dvd.

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  • mrtw43
    mrtw43 Member Posts: 198
    edited August 2013

    Thank You to everyone that responded to my questions I am bummed it's going to take a little more time than I thought for walking upright but it's nice to know it will eventually happen. I was readings some of the posts about tamoxifen. I had noninvasive dcis and my nodes were clear since i had the dmx with deip recon why would i take tamoxifen? I am meeting with an oncologist in 2 weeks to discuss if Any treatment options are appropriate for me but I was just wondering what others experiences have been.

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  • FireDragonll
    FireDragonll Member Posts: 27
    edited August 2013

    I was told by BS that I don't have to take tamoxifen if I had BMX.

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  • mary625
    mary625 Member Posts: 1,056
    edited August 2013

    Well, if I could get an MRI every year, I might just do this surgery! Right now, despite my stats, I don't qualify and that's one reason that I got rid of my other breast prophylactically. It is really ridiculous, isn't it?



    Why can't you drink coffee after the surgery?

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2013

    Mary, many of our PS had us go cold turkey on the coffee a few weeks before the surgery, and a few weeks afterward, because caffeine is a vasoconstrictor.  It makes blood vessels tighten up a little.  For the DIEP, anything you can do to keep the blood supply open and flowing freely to the flap is a good thing, so no coffee for a little while.

    I don't know if it makes a difference or not, but most of us would have visited a shaman and sprinkled dried frog powder on our chests if we'd been told it would help.

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  • Morningsun1
    Morningsun1 Member Posts: 649
    edited August 2013

    Sbe, I'm going to email my ps with this opening: "according to my DIEP sister, we should visit a shaman and sprinkle dried frog powder to our chests..."

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited August 2013

    Hmmm, didn't know that about coffee but will use that info when I have a blood draw or IV scheduled. I need all the help there I can get!



    I am a little down today. The thought of recurrence pops in my head; I have such a scarred up chest from so many biopsies, drains, surgeries; my boobs are lumpy, my tummy swelly and I am bummed about Bluebird, my DIEP day sister, and Faith and everybody else who has open wounds, delays in surgery, pain. This journey sucks sometimes.

    I need to put my big girl panties on (over or under compression?) and snap out of it but I'm glad I can express myself here to people who understand. Or maybe I'll put my pink "Survivor" shirt on! Ha! Won't leave the house, though....

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  • klanders
    klanders Member Posts: 244
    edited August 2013

    You made me laugh, SBE! :-) thanks



    MRTW... Women who are ER negative don't need Tamoxifen. Doc wanted me to take it (I was ER + 98%) but after three weeks I couldn't take the side effects so I'm taking a chance by quitting. Instead I'm trying to eat healthy, take supplements and exercise. Some people don't have bad side effects - your experience could be fine.

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  • klanders
    klanders Member Posts: 244
    edited August 2013

    Jeannie, depression was one of the major side effects for me with tamoxifen. The doc wanted to give me more drugs to combat that (Effexor) and that's when I said no to it all. Feel good now, although I can't believe I'm heading in for stage 2 when I'm still sore and numb from stage 1 (four months ago). We've been through a lot - it's okay to have down days! I worry too about recurrence - I think that's what other people don't get - there's always this "elephant in the room!"

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited August 2013

    Thanks, Klanders! It helps to hear from someone else who's been through it/going through it.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited September 2013

    Aw, Sweet Jeannie, it's just one of those days.  It will pass.  You are doing great, and are allowed a day of not having to keep you chin up, and all that jazz.  You are our sunshine, you know that don't you?  Always there with something upbeat, and kind to say.  I wish there was something I could say to make you smile, or feel better. This too shall pass. I promise.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited September 2013

    Klanders, one of my best friends stopped her Tamoxifen too.  She felt awful, and her hair was falling out, and she knew 10 years of that was not something she could handle.  She had a bmx, and a total hysterectomy.  She figured her odds of the cancer coming back were very low already, and also decided to take her chances. Her husband did a lot of research (he is in the drug industry), and the conclusion he came up with made them comfortable.  It's a choice you have to make. One drug, leading to another drug, because that drug makes you feel bad, and on and on, until what?  You make the choice that is best for you. If my doc said,"if you don't take this tamoxifen you are going to die next year." Yeah, then maybe I would take it. But, if he said, "if you take this tamoxifen it will give you 1 percent less chance of a recurrence," then I probably would not take it if it made me feel really bad.

    I know you will do great with stage 2.

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited September 2013

    Hi Flappers-just too damn hot outside to be working in yard.......I am dusty, dirty, tired, and sore.....enough !!! Now stretched out on bed, letting the a/c and the moving fan cool me down.......def. NOT cooking for anybody, even myself, tonight!



    I was DCIS stage 0 grade 1.....Onc. said "no" to hormonal therapy (I'm 57 and past menopause), he didn't feel the benefit (for my situation) would outweigh the possible side effects. I was surprised, but am getting used to it......he told me I had done more than enough to reduce my chances of recurrence to that of the general population's chance of getting cancer in the first place. Liefie and Nihahi can attest to my difficulty adjusting to the fact that for me, treatment ended at the BMX......I am fine with it now, though.



    Sbe, am envious of your ability to recover so quickly......I am afraid I am having a very difficult time believing that I will probably NOT have post-op "issues"......you know the old saying "fool me once......". No reflection on my PS-he is great! Total reflection on my weird body and its quirks...... Trying to think positive.......fingers crossed..... Tuesday is coming......quickly! How is foob-area pain with the lifting and tweaking? I CANNOT imagine how this is going to all come together....... : /



    I am sure I am missing out on the gist of what is being discussed on here right now......brain is "cooked", and I am distracted, so I apologize........



    Sending a (((hug))) to our Bluebird........XO



    Love to all, and hope your weekend is going well! :)



    Namaste and God Bless - Jackie

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  • SheChirple
    SheChirple Member Posts: 954
    edited September 2013

    mrtw : as ER +, tamoxifen may be recommended to block the estrogen in your body.  ER + means your cancer feeds on estrogen.  Tamoxifen blocks that and helps prevent recurrence.  It is different for different folks.  Only your oncologist can recommend.  Ladies have differnt side effects, too.  Mine include one period every three months with 3 montsh worth of cramping and bleeding in a few hours!  Horrible blood clots being passed and cramps to match.  Sucks. But, recurrence would be a worse fate for me, so I'm pushing through, for now.

    See what your oncologist says.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2013

    I caught up....I can't possibly respond, but I caught up on reading! Thinking of you all....vacation is great... weather truly beautiful today....hiked out to a beautiful waterfall (Chapel Falls) ....hugs all around!

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  • Tracy516
    Tracy516 Member Posts: 183
    edited September 2013

    Smile and your stomach smiles with you;)



    Went to my cousins house so my kids could swim. We went to dinner and now I'm exhausted !!



    Day 16 and my

    Smile is tight but getting better. About an inch split lip. Meds on that.

    Boobs are still bruised and tight with tingles.

    My back hurts if I stand to long.



    I hope another day has passed with healing vibes for all!!

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited September 2013

    I really liked this video

    http://supportthefightagainstbreastcancer.com/stuff-breast-cancer-surviors-say/?utm_source=social&utm_medium=bcsstore&utm_term=20130831&utm_campaign=stuff-breast-cancer-surviors-say

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  • ssla01
    ssla01 Member Posts: 480
    edited September 2013

    (((Bluebird))) I'm so sorry.



    I have been on tamoxifen since January with small breaks for surgery. The side effects lessened a lot after a little time.

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  • SheChirple
    SheChirple Member Posts: 954
    edited September 2013

    Guess who went swimming today......Tongue Out to my PS.

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  • lahela
    lahela Member Posts: 515
    edited September 2013

    SheChirple - six weeks from dx to sx is a quick turnaround, but the rollercoaster was pretty intense! My PS asked me the other day if I'm happy with my noobs and didn't understand my lack of enthusiasm until I pointed out to her that I went from having (what I thought were) healthy boobs to noobs in such a short space of time - taking a while to get my head around it.

    Now I need to decide if I want nipple recon. And I need to decide fast because my PS is moving to Berlin in a few months, so if I want her to do it...

    Got my tamoxifen script filled yesterday to start later this week. I was scared after reading the adverse side effects thread, so now I just read the positive side effects thread instead. *grin*

    Bailey, glad to hear you're having a great time! SBE, you are always so positive - an inspiration. Jeannie and everyone {{{hugs}}}.

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