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Any October 2011 Surgeries out there want to wait together?

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  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited September 2011
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    Good Morning Everyone~

    A quick check-in to let you know I'm thinking of you all.  I also wanted to change my "user name" to descibe how I'm feeling these days!   Still dealing with insurance issues here (as if there isn't enough to worry about!) 

    gamergirl~ When you have a chance, would you mind updating my name on the list?  Sorry to be a pain!  Thx so much!

    CLC- That full body massage will be wonderful.  Do it!   

    What you wrote re: telling your children really hit home with me.  I haven't yet informed my 11 year old son of my upcoming surgery.  I hope you won't mind if I share your verbage.  I just don't want him to worry all month--- but I don't want to pop this on him either. 

    Also, did you get any feedback re: approved foods for the hospital?  I am also a "Bring My Own Food Everywhere" person (which drives my family batty- haha!) 

     mardibra~ REALLY glad to hear the super news.  YAY!

    Be back later with more "personals."  I'm off to spend some time with my boy :)

  • CLC
    CLC Member Posts: 615
    edited September 2011
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    Dukes up...

    Please feel free to use the language.  I felt it was very helpful in being truthful without being unnecessarily scary.  I have not heard much on the food front, except that I probably will be allowed to eat anything and won't want to eat anything...  I am waiting to hear from the patient/hospital liaison on this for more...I will keep you posted.  I drive everyone batty on the food front, too.  My son is allergic to milk on top of that, so we all eat different things in my house.  It is like a diner every night...:)

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited September 2011
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    Hi all,

    My children are grown but I am a first grade teacher so I'm still very much in the world of young children. The American Cancer Society has a list of books about telling children that you have cancer as well as some tips on how to help children cope with this.

    Caryn

  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited September 2011
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    Caryn~ Wonderful idea!  I will look into some books for sure.   
  • Danadane
    Danadane Member Posts: 21
    edited September 2011
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    Boy, go away from the boards for a few days and so many new posts!



    Texasrose2127---- the American Cancer Society seems to have some nice post-op camis. My surgery is next week so I think I may go ahead and order a few. Will let you know how they work out.



    gotta run but hope everyone is hanging in there.

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited September 2011
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    Wow...just checked in and found so many posts that by the time I get to the bottom I forget who has said what and have to start all over again...chemo brain doesn't help!  Scribbled down a few things I'd like to say, and although I can't mention you all by name, know that I am thinking of all of you and really appreciate being able to come here to share what can only be described as a F****** awful experience... But we can support each other through this, and it's especially meaningful because we understand the rollercoaster of emotions we are all experiencing in a way noone who hasn't gone through this can.

    mardibra...great re U/S and belated happy birthday, and happy birthday to CLC as well... 

    rechelvk: was wondering whether you were ever offered neoadjuvant chemotherapy, as several TN women are...bear in mind this isn't always the case; in my case I probably had chemo first because of the size of my tumour.  Yes the waiting sucks!

    trainwithaj: hope insurance gets sorted out...it's really the last thing you should have to worry about at this time!  Fingers crossed for you!

    Kelleyod and rh85 are you still POW??? When do you see your bs?  I presume you will have to have made your decision by then.. Kelleyod and Dukes_Up, thanks for shrinking thoughts...please keep them coming; will know on Monday afternoon whether the second lot of chemo I had has really done the trick on my tumour...

    Like a lot of you I think I've been getting more anxious in the last couple of days..I think I've coped pretty well so far, and just carried on with things, but at the moment I seem to get anious over the silliest of things, and it's obviously related to the fear of the unknown and what's awaiting us in a week or so... My kids are older than many of yours, and that helps I'm sure (I have 3 kids aged 26, 20 and 18) as they can carry on with their own lives a lot more than your little ones..on the other hand, they are fully aware of what it is I'm going through and the risks of recurrence etc etc....HOWEVER, as survivor 11 so rightly says, let's keep strong, let's keep positive, let's think about getting through things one step at a time, we will fight and WE WILL BE FINE!!!

    Thanks Gamergirl for keeping everythnig up to date, wishing all of you here a good weekend!

     

     

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited September 2011
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    Danadane, I thought your surgery was scheduled for the week after..Oct 4th

  • Maria_Malta
    Maria_Malta Member Posts: 667
    edited September 2011
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    Dukes_UP, chemo brain definitely well-established here..only just realised you are ex trainwithaj..... hope your boy is doing betterSmile
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited September 2011
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    *** For anyone looking for post op camisoles, please check with your insurance company as they may cover the cost of one. I am a Kaiser Permanente patient and they covered one camisole and a front close cotton "sports bra". Caryn

  • gamergirl
    gamergirl Member Posts: 53
    edited September 2011
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    Oh, I will have to call and see if Kaiser covers that for me too.  I was given a binder full of breast cancer info, but nothing about a cami or bra.  I have Kaiser in Colorado, but I imagine that sort of thing would be standard across all plans.  Good info Caryn!

  • gamergirl
    gamergirl Member Posts: 53
    edited September 2011
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    So in the midst of wallowing in my pit of despair, my sister informed me she is paying for her housecleaning crew to come 3 times to clean my house while I deal with all this.  I've never had anyone clean my house for me before.  Part of me feels the need to run around and clean my house before they get here.  The other part of me feels like I should not clean anything at all until they get here.  

    It helps pull me out of the pit when cool things like that happen.  Anyone else have things that are happening to help them with the aftermath?  What are ya'll doing for meals?  Laundry?   Trying to dry hair with T-Rex arms?  

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited September 2011
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    Gamer girl,

    Do you have a breast care coordinator? She is the one who gave me a list of shops that work with Kaiser. Went to a shop, gave them my Kaiser #. The sales lady plugged it in to her computer and voila, I was measured, fitted and walked out with the two garments I mentioned.

    Caryn

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited September 2011
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    Hi again,

    I had more movement in my arms than I expected so I was able to dry my hair most of the way. I have curly hair and I had my hairdresser cut it a bit shorter than usual so I just put a bit of product in it and with a bit of blowdrying it did it's own thing. Families at my school set up a meal delivery calendar so I'm getting wonderful meals every other night. DD's did laundry at first but I can do it now, 31/2 weeks from surgery. Caryn

  • Kelleyod
    Kelleyod Member Posts: 125
    edited September 2011
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    Happy Saturday All. . . .

    Just doesn't feel like weekends are quite the same does it?    Is it just me or do y'all feel like you hear a little "tick, tick, tick" in the back of your head?  I guess I have to turn the coin and think, "no, time is NOT running out - the clock is moving closer to all of us moving FORWARD. . ."   And forward we shall move . . .   with strong positive thoughts. 

    Gamergirl:   TAKE THE HOUSECLEANING AND RUN. . . .   don't sweat cleaning for them.  Maybe a picking up by the DH and getting a floor clear to vacuum.  But don't sweat it.   I would definitely let the cleaning crew know what is most important to you (i.e. sheets, kitchen cleaning, whatever) so maybe that can always be covered.  What an amazing gift.    

    I keep wondering what to do "home wise" to prepare for dinners, etc.   And then I think I get a little stuck.   Any suggestions anyone?   ALSO - I've prepped with some step in tanks . .larger zip up bras. . . .   what's a must get?  I must get unstuck for one. . .but any must have's?  Wedge pillow?  Post Op Camis?

    Caryn:  wow you sound like you are doing great!    Good input on insurance, I'll check mine out.   I am also thinking of chopping the hair a bit more then usual to "cope" . . .

    CLC:   take the massage and RUN!   Get as naked as you feel comfortable with and exhale.  It's an amazing experience and very therapeutic on many levels.   Ease your soul a bit.  I think you'll be delighted.   How are you holding up?

    Maria_Malta:  I'm still in POWI. . . hahaha . . . .   My primary worry is similar to Gamergirl - waking up with a different diagnosis therefore have I done the right thing recon-wise.   I get BRCA results on Tuesday so I believe that will be huge in pushing me into the BMX route should it be positive.  I may see BS again this week - definitely a phone call with her is in order.  As well as with PS nurse . . .  I feel like I am "the bad / high maintenance" patient but they have been VERY nice about my many questions.   You have my small, shrinking, tiny, tiny, tiny prayers.   let's kick that tumor's butt!

    AJ / Dukes:  Good luck on the convo. . .  I know how hard it was with my very concerned tween daughter..... I reminded her of the many different levels of cancer and that this is a bend in the road.   I think being cautiously honest is huge . . .they have to know.  Here's to getting that insurance snafu straightened!  How is the sick fam doing?

    Dana Dane:  thanks for the cami lead!

    I keep chuckling at the comments to write on your chest pre-surgery - Bite me! - Goodbye Cruel World - hilarious.   I was thinking "My Boob is trying to kill me!" :) 

    I agree with the one step / one stage at a time.   I keep getting ahead of myself thinking, 'What if. .  .?  what if. . . ?"   Step back. . .breathe . . .   We will fight, we will be fine.

    I treated myself to a quickie 30 min massage today . . .said a prayer for my "october girls" as I'm thinking of y'all.   Hope you ALL are enjoying a nice weekend, exhaling and keeping positive!

  • survivor11
    survivor11 Member Posts: 430
    edited September 2011
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    Kelleyod-lots and lots of pillow (different sizes) and those gel ice packs (the large ones you put in for your kids lunches) are a must, must, must. If your like me you'll also spend alot of time in the tub or shower. Would be in a hot bath for my back (cause the strain of surgery and TE expansion) with an ice pack on my chest for the discomfort. Of course it's very hard, but really concentrate on the one surgery/procedure/treatment at a time. I always said that as long as I was around to worry about the next step in the process, then it would be all worth it. I hate to tell you, but that tick, tick, tick remains in your head always from this point forward, Whether it's waiting for BMX, diagnosis, TE fills, chemo to start, results to come back in, exchange surgery, losing hair, getting hair back, waiting for your 3,6,12 month check up. Thats one the of crappiest parts to BC, from now on, we are always waiting. We just have to be sure to not let it take our lives over and remember to live amongst the waiting.

    Thinking of you all.  Hope everyone had a great day.

  • rachelvk
    rachelvk Member Posts: 564
    edited September 2011
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    Gamergirl - I second the comment on the housecleaning. My bf is determined to hire a professional service while I'm in the hospital (okay, I may be a clutter nightmare, but that's not unsanitary). I was planning on moving at the end of the year because my rent will go up and I'd like to find an apartment with my BF, and I feel I still need to do that - so my sister has said my holiday and birthday present will be a contribution to hire professional movers.

    One of the hardest things for me is to ask for help (in general, long before this situation), mainly because it just doesn't dawn on me what it is that I could use help with. I'm a pretty independent woman. This is changing that. Not that I don't want to be independent, but I am learning the importance of asking for help and accepting help, and knowing down the line that hopefully I can be there for someone else. My co-workers chipped in on a gift card to a massage place for me, so that's definitely on the calendar.

    Kelley and survivor 11 - I like your thought on time. The waiting stinks, but just keep making those plans for after we all get past this.

  • rk85
    rk85 Member Posts: 80
    edited September 2011
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    Gamergirl,  you are killing me!  How are we going to do anything post BMX with T-rex arms!?  I laughed so hard my stomach hurt and I almost had to go change my underwear.

    Maria, I gave up hope of leaving the POWI (pit of waffling indecision) once I remembered that when I had my breast reduction surgery 5 years ago, my last thought AS THEY WHEELED ME INTO THE OPERATING ROOM was "do I really want to do this?".  What kind of a lunatic signs up for breast reduction and has this thought as she is being wheeled into surgery?  So there is really no hope for me.  

    I just don't know how my poor husband puts up with it because personally I have really had it with myself on many occasions.  My decision du jour, he charitably calls it. 

  • trinity927
    trinity927 Member Posts: 479
    edited September 2011
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    Hi Gamergirl!  Thank you for starting this thread ...and, "hi" to all the ladies on here as well ...

    I'm scheduled for surgery on October 3rd ... so, would you mind adding me to the list?  Smile

    I'm having insurance issues also, so I'm hoping and praying the surgery goes forward as planned, since I'm HER2 positive, and my ki67 test results indicated an extremely aggressive cancer ... I'm scared out of my mind ... I'm wondering if the surgery doesn't go forward on the 3rd if I should be started on chemo/herceptin before surgery?  Does anyone have any thoughts on this?  I would greatly appreciate any advice ... 

    I'm having a bmx with TEs (recon started at time of surgery), and DIEP surgery sometime thereafter ...

    As the time of my surgery approaches, I'm getting more and more anxious (and scared) ... my meltdown moments are happening more frequently ... :(    I can't seem to get to sleep tonight ... it's almost 2:30 AM, and I'm on here typing away ... I do feel blessed to have found this site though ... it's benefited me greatly ... sending out prayers and blessings to all!  

    btw, I almost spit out hot tea all over my monitor after reading the pre-surgery comments mentioned by Kelley... too fun-ny!  I needed that ... I haven't laughed in quite some time ...  :)

    Love~Peace~Joy

    Trinity

  • Clams
    Clams Member Posts: 34
    edited September 2011
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    On the topic of telling kids, our kids are 10 and 11 (girl 4th grade and boy 6th grade), and we've told them both pretty much everything that's happening.  We're lucky that there isn't any cancer involved, but it was essentially, this is what mom's doing (gonna have her boobs removed in an operation), this is why she's going to do it (to prevent her from getting breast cancer), this is how it's going to happen (one doc removes her boobs, another doc will take skin and tissue fro the belly and use it to build new boobs etc), it's a long operation, she'll be in the hospital for 4 or 5 days, then she'll be home for a few months and in the beginning it'll be hard for all of us but hopefully she'll recover quickly, etc.

     We figure that this way there aren't any secrets and there won't be any surprises.  We assured them that they are the #2 priority during this ordeal and that we'll still get them to school, sports, etc every day.  We told them that my mother in law will stay with them while I'm in the hospital and that a few nights they will stay with friends.  Hopefully getting it out in the open and reassuring them will work out for the best.  Kids can detect stress as well as anyone, so no sense in avoiding the issue. 

  • CLC
    CLC Member Posts: 615
    edited September 2011
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    Hi, Trinity!  I know what you mean about the meltdowns.  I burst into tears yesterday out of frustration with trying to order dance shoes and leotards for my children.  And, mind you, I rarely ever cry about anything.  And sleep...I'm getting less than when my children were born.  I am hoping that once the surgery is over, we feel more settled.  That, of course, must really be hanging over your head, since you have the insurance issues and aren't confident of your surgery date.  I will be thinking of you...I hope it becomes settled soon!

  • survivor11
    survivor11 Member Posts: 430
    edited September 2011
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    rachelvk-so know what you mean about being independent. Was so there myself at the beginning of all this that I had coonvinced myself I could do it all myself . Am a single Mom of three and have always been against asking for any help-saw it as a weakness. Fortunantly for me, my friends and family know me all too well and would not under any circumstances let me go through this alone. They forced their way in, by being there, doing things, etc. In the end I relented and was soooo appreciative of their love, support and help that after 40 years finally realized that we all need help sometimes and it doesn't make us any less of an independent women.

    rk85-you have the right to be confused about all the decisions you have to make right now. For God Sakes, who knows what their going to do one moment to the next. Be easier on yourself, you'll come up with the answers in your own time.

    trinity927-we share the same surgery date, although for two different phases in our journey. Even though I would consider this surgery for me to be a good one, I still feel the anxiety of the upcoming event, hang in there sister-it is nice to have someone to share the date with. Chemo before surgery really depends on the size of your tumor and it sounds like for you and what was for me, surgery is your best inital treatment.

    clarms-out your kids ages, honest is the best policy. My kids range in age from 5-10 and I to was very honest with them, even with the cancer involvement. I have found that it was totally the right decision for us throughout this journey. My kids believe me when I tell them something about a treatment, procedure, etc. They don't think, "well Mom is probably protecting us and not telling us everything." Good for you and your family. This really is no time for secrets.

  • Dukes_Up
    Dukes_Up Member Posts: 112
    edited September 2011
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    Good Morning Group!

    Hope everyone had a sound night of sleep last night.  I've always had horrible sleep issues so I really appreciate ones like night in which I slept for a solid 6 hours! :)   Thank you Melatonin!

    Question:  Does anyone know the likelihood of needing a blood transfusion during the BMX with TE insertion surgery?   I hadn't thought about this until now but I have a funky antigen in my blood that could create severe problems if I should ever need a transplant or transfusion.  I'm thinking I want to bank my own blood just in case... but not sure if there's time.  I'm calling my BS office in the morning but wondered if anyone had insight...  

    CLC~ I totally understand those tears of frustration.  I was never like this before starting down the "6 month let's see what happens" trail.  It just got to be too much and I was "losing" it entirely too often.   *hugs* 

    rachelvk~ I love the very thoughtful gifts!  Cleaning, moving, AND massage will be so very helpful for you.

    Trinity~ Welcome.  I'm so sorry that you're experiencing insurance issues too.  At a time when trying to stay as calm and rational as possible, insurance stress does NOT help!  I'll be hoping it all works out soon.

    Kelleyod~ Thanks for relating your experiences with telling your children-- and thanks for checking on my boy!  He's feeling much better and he'll likely be able to go to school tomorrow.  As for the "big conversation", I'm just waiting for my hubby to get back from his work trip tomorrow so we can discuss it together.     

    Clams~ Thanks for sharing how your conversation went with your kiddos too!  Oh and it looks like our boys are the same age. 

    Maria~ Ha!  Sorry for the confusion on my name change.  I promise, I won't change it again! :)

    survivor11~ I always appreciate your wonderful insight.  Thank you for sharing so much with our October group.  Also, thank you for the great pre-surg preparation tips.  I'm on the prowl for a surplus of ice packs :)

    exbrownxgrl~ Hi Caryn!  Excellent idea re: inquiring about a breast care coordinator.  I'm calling on this tomorrow. Thx!

    rk85~ Hey there!  I had to chuckle re: Decision Du Jour.  Yep, that's me in a nutshell re:most all important matters in life.  Strangely enough, having the BMX is the one choice that I haven't waffled on. 

    No big plans today.  I'll be around :)

  • kellyconboy
    kellyconboy Member Posts: 1
    edited September 2011
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    My surgery is October 7th. I am BRCA2 positive, so am haivng double mastectomy and double ooporectomy (including filliopian tubes). I am not looking forward to it, but it is necessary. I don't want to go through what my mother did with ovarian cancer. She got through the breast cancer fine but didn't get herself checked for possible ovarian. She suffered greatly from ovarian and actually died from a reaction to the chemotherapy. I have not seen the oncologist yet, am waiting until after the surgery to find out if I need to have chemotherapy. I hope and pray that I don't have to go that route, but am taking one thing at a time. I am in great health and in the process of losing weight (30 pounds so far) so I am hoping that I'll be able to get back to a "normal" life soon. I have a positive attitude through this journey, which I hear helps in better outcome and have my Faith, which really helps. I am here for anyone that needs encouragement and a friend!

  • stephanie33
    stephanie33 Member Posts: 4
    edited September 2011
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    ok so I have been reading here about post mastectomy needs and I unfortunately assumed it would be like my lumpectomy but I am seeing here it is not.  So can one of the more seasoned women tell me what I need after wards.  Thnaks

  • CLC
    CLC Member Posts: 615
    edited September 2011
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    Stephanie33...there is a great thread under surgery-before, during and after... it's called "shopping/packing/to-do list" and there are some good suggestions...check it out...it is the second on the surgery forum list...Laughing
  • stephanie33
    stephanie33 Member Posts: 4
    edited September 2011
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    thanks clc, i will definitely check it out

  • survivor11
    survivor11 Member Posts: 430
    edited September 2011
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    kellyconboy- wow, you really are having alot done at once. Keep up the positive attitude, even though it may be hard at times, it does make it go easier on you in the long run.

    Stephanie33-the BMX will be nouthing like your lumpectomy at all. First off you won't be feeling much of your chest at all, which is weird but helps with the pain. Stock up on lots of pillows (different sizes) and lots of ice bags (the soft ones that you put in kids lunch bags). Find a comfy chair, recliner or your bed (although wouldn't suggest your bed cause you don't want to sit in it all day then try to sleep in it later). You'll need a comfy little nest where you can get to the phone, remote, magazines, etc where you'll be sitting in a reclined position. Helps with mobility and comfort during the first few weeks. I strongly suggest surrounding yourself with flowers and nice smelling candels-it seems to help lift your mood during the boring first days.Hope this helps some.

    Have a good night ladies. Hope everyone gets a good nights sleep.

  • rachelvk
    rachelvk Member Posts: 564
    edited September 2011
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    DukesUp - I admire your organized approach to keeping up with people. I keep meaning to go back re-read from the start of this thread so I can really get to know everyone here.

    I remember seeing a reference to blood transfusions and bmx, but in general, any time you undergo surgery there's a chance they may need it. I'm sure it will be covered in your pre-op visits, but definitely bring your situation up soon. There is a possibility of banking your own blood if needed. I've been thinking about donating blood myself, more as a 'pay it forward' type of thing. My only question would be - since you're only allowed to donate once every two (?) months because your body needs time to regenerate the blood cells, is there a window in which you can donate blood before surgery without it putting you at risk if you do have blood loss during the operation?

    Trinity (and CLC) - Yes, the meltdowns do start blindsiding you.  Just keep focused on the end game - beating this lousy cancer - and try to make everything else a part of getting there, whether it's your surgery decision, preparation, or your emotional well-being. And I hope the insurance issues are resolved in a positive way for you. Seeing how quickly my insurance balked at tests they decided were not 'medically necessary,' I worry that they will try to limit reconstruction options.

    Kelly - You've got such a good attitude. I'll likely have an oopherectomy within the next two years. I'm probably beyond having children at this point, especially since chemo could well knock out my fertility for good, but I'm not completely ready to accept that. Too many other life-affecting decisions that have to come first. Good luck with your weight loss and your overall journey. Having faith is an important part of that.

  • kks_rd
    kks_rd Member Posts: 99
    edited September 2011
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    Sounds like many of you have already been through a lumpectomy/SNB, which is what I will have next month. There is surprisingly little on BCO about what to expect!  Would anyone be willing to share their experiences with me via PM?  I've been so focused on getting through chemo I'm now realizing I know nothing about this next step.

    (If it helps, I would be happy to 'swap stories' with you by telling you about my dose dense AC+T experience.)

    Thanks. Hope you are all well this lovely evening!

  • kcobb
    kcobb Member Posts: 7
    edited September 2011
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    Well it looks like you need someone to take October 13 so sign me up!

    I am scheduled to have pre-op on Tuesday (Sept 27).  Then I'm scheduled to check in to Vanderbilt Hospital in Nashville at 5:30 a.m. on Thursday, Oct. 13 with surgery to begin at 7:30 p.m.  I've been told to expect surgery to take about 10 hours; to be in the hospital for about a week; no driving for 3 - 4 weeks and off work for about 6 weeks.

    I was diagnosed with BC in January 2008 and hada mastectomy of the right breast followed by 16 rounds of chemo and 37 rounds of radiation -- throw a blood clot in there and you have my 2008.

    So now the plan is to do a prophylactic mastectomy on the left and a double DIEP.

    Every day it seems I come up with something else I need to get done before the surgery...need to make a list and get to work on it -- I'm 18 days and counting!!