August 2014 Surgery

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited October 2014

    Violet, you sound so wise!  My thoughts are with you.  I hope you are treating yourself. XXX

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    couture is so jealous!!!!  My time will come. I don't think he wants it to be so close to my sisters engagement too now. Damn her! 

    So- the study- it's a double blind- but it's 75% get the drug and 25% don't. You get to know your biopsies results- also you get to know bc if they come back clean - you're not in the study! It's only a year long trial- and since I'm not even engaged- I can "afford" the year not to have kids. They don't foresee any problem getting pregnant after the study. 

    Also- after the biopsies and the results-  I can choose not to participate. 

    I'm going to ask about the insurance coverage though when I go in! Good question. 

    My anxiety level has gone down knowing I have dates for appts and plans. I hate the waiting! 

    I'm thinking of going for another opinion about my scar though. It's still tender and sore sometimes. Almost 2 months out now! 

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Lipglossmommie-   Wishing you and easy and successful surgery tomorrow!!!   It'll go great this time!!!

    Ganzgirl--  What's happening? --- Is it still swollen?    Were you able to get a check?    

    Bobogirl-  Has your fever gone down?

    ml-  How are you holding up with Chemo?

    Couture-  That study sounds like a good deal!  I'm glad you're feeling a bit less anxious!

    VioletKali-   Love your attitude!   I hope you have lots of good days!

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  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Imheretoo - thanks for asking about me.  Friday was chemo #1.  Saturday was an eh day.  Kind of queasy.  Sunday was a good day.  Not too queasy and had energy.  Today, I didn't go to work and basically slept on an off all day.  I have to go to work tomorrow so I hope I will be better.

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  • Allydp
    Allydp Member Posts: 520
    edited October 2014

    Just popping in to let everyone know my hysterectomy was denied by my insurance company. I'm in the process of appealing it and getting all my doctors to write letter of medical necessity. It's officially been postponed, which will throw my exchange surgery off too. Needless to say, I'm beyond upset. 

    I'm frantically working on the appeal letter today since it's really all I can do at this point. I LOATH my insurance company!!!!!!!

    I'll be back to check up on everyone! 

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Oh for Crying Out Loud!!!    

    So now you've got to wait for the whole stupid appeals process to take it's course AGAIN?!

     I hate your insurance company too, but I'm also extremely beyond frustrated that your doctors don't clearly explain the medical necessity of all these things on the first insurance coverage request.     

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014


    Alley, I can't believe this. I can't believe that they did this to you. Grrrrr. Hope this will change soon. Hugs.

     

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  • Sunflowercat
    Sunflowercat Member Posts: 177
    edited October 2014

    allydp - I'm speechless! WTF? I hate your insurance company too!!!  I'm sorry you dealing with all the hassle again.  this is the last thing you need.  Boo!

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  • cateyz2
    cateyz2 Member Posts: 419
    edited October 2014


    Ally I don't know if I am too late in posting this but this website has some great Sample Appeal Letters for all sorts of reasons, hope it helps

     

    http://healthsymphony.com/appeal_letters.htm

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014

    Omg ally !! Im so sorry ...I cant believe an insurance company  can dictate our future, IM just speechless

    Imheretoo....sorry..I just needed to step away from the cancer stuff for a few days. But, I went to the er sunday..they did a chest xray ?? Why they did that I will never know...I told them I wanted an u/s but whatever. Atleast I know my lungs are fine lol ! Anyway, saw the ps Tuesday..I got my 2nd fill, he put 200 cc's in each side !! Beyond excited ! I am definetely sore but I can handle it. He said I can be done with the fills if I want to be. He scheduled my exchange for January 7th..I am sooo dam excited to get thse TE's out of me !! I will see he 2 weeks before exchange and if I want another fill I he will do it then, which I probably will ask for another 100cc in each side. He also Looked at the swelling and didn't seem concerned about it so Im just going to wait it out for now. Im trying to Not assume every little thing is cancer coming back, I drive myself crazy doing that so Im trying really hard not to any more. Im seeing the light at the end of the tunnel    Happy

     

    Hope everyone is doing ok today !


     

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  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Ganz - glad you got a bit of relief from the worrying.  Sounds like you are well on your way to new implants come the first of the year!

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited October 2014

    Hi everyone!  Ally, thinking of you -- and so glad for your relieving news, Ganz!  Just popping in to say fever is down -- I am pretty beat, back to work yesterday -- and I will catch up in a day or so.  Hugs to everyone.

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  • angelfaith456
    angelfaith456 Member Posts: 83
    edited October 2014

    Ally - So sorry for your insurance company treating you like that..BOO!!!

    ml - hope your queasy stomach cleared up..Hang in there..I had 22 rounds of chemo before my surgery..Stay positive and strong..

    ganzgirl - glad you got checked out at the er and got an exchange date! 

    coutoure - glad you are feeling less anxious..stay positive-it will all work out just fine :)

    I went to my PS for checkup - all is healing nicely..Still didn't get an exchange date cause the surgeon has to get approval, which can take up to 2 weeks..then they will call me with my date..My insurance requires 90 days in between surgeries. So, my first surgery was Aug.19th, so that puts me after Nov. 19th..I will update you once I know..

    Having trouble with my legs - feeling week and sometimes in pain. Called oncologist who will refer me to physical therapy. Chemo wrecked havoc on my body! Waiting for the call to start PT..I want to be better so I can start riding my bike again..

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Ganz, Good to hear you sounding more relaxed!    I think since all those docs took a look at you, even if they didn't do the ultrasound, you can trust that it just must not look like those scary things you were imagining it was look like.    Heaven knows, with all that the surgeons did to you, you've got reasons to be swelling there!   

    Bobo, Very glad that the fever went away!!!!!!!!    NO INFECTION!!!!!!!!!!    I bet you're still feeling pretty ouchy and tired, though!!     

    Angelfaith, So sorry to hear about those post chemo problems!   I sure hope the physical therapy helps you!

    Ally---   Your surgery wasn't rejected for the reason Angelfaith mentioned-- was it?   (for being too close to your other surgeries)???????     (And if so, can the rule be bypassed if your doctors declare it necessary to do things sooner?)

    Today I did day 2 of my radiotherapy.

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  • Milaandra
    Milaandra Member Posts: 271
    edited October 2014

    And how did it go?

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  • Allydp
    Allydp Member Posts: 520
    edited October 2014

    Ganz - glad you're feeling more relaxed about the swelling. Will you be seeing your BS soon about it? Yay for fills! One step closer to exchange! 

    Anglefaith - chemo has done on number on my joints. I'm very stiff and very sore, so I feel your pain. I've been told it can take up to a year to subside. Glad you're getting your exchange date soon! 

    Imhere - how is radiation going? No, my surgery wasn't denied because of the timeframe. It was solely denied due to them saying it was medically unnessesary.

    Well, I don't really know what to say at this point. I've written a 4 page appeal letter and had a few people who work in insurance read it, so I know I'm good there. I also got a letter of medical necessity from my genetic counselor, gynecologist and BS. But guess who refuses to write me a letter…my onc. Damn her is all I can say. She is the freaking head of genetics at my hospital as well. If anyone should be writing me a letter, it's her. When her secretary first told me no, I reiterated the fact that I have EVERY single one of my doctors writing me a letter. Her response was "those letters will be fine then." I've HAD IT with her. She is obviously not my advocate in any way, shape or form. I'm also waiting to hear from my gyn onc who's actually supposed to do the surgery. Like I said before, he's in surgery all week, so I knew he wouldn't be dealing with this until tomorrow, but still. That's frustrating too. So anyway…I submitted the appeal today with what I had. If I'm denied, I'm going to call the press, write congress, and scream from every rooftop I can. I am mentally exhausted though and really beat down, which is why I haven't been around lately. I don't know how much more I have in me to fight not only cancer, but fight for my care, fight my insurance, fight for a baby…it's too much sometimes. I'm sure I'll pull myself up like I always do, but right now I want to crawl in bed and pull the blankets over me and sleep this fiasco away!!!!

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014

    ally...I don't understand how they can deny the hysto/ooph....you are trip negative and brca positive !! Don't stop fighting ally, god I wish there was a way to help you I feel so bad for you. Did they deny the surg because of your age ? I know last year when I wanted to have my ooph the doc's wouldn't consider it because of my age and Im 40, well at that time and because Im brca negative. Even tho many women in my family have bc and oc and no brca mutation. I will keep praying for you, dont give up ! And I will go to congress, the media and wherever else you need me to go with you hugs girl keep your chin up xoxo

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  • Milaandra
    Milaandra Member Posts: 271
    edited October 2014

    I've seen my oncologist once, for about a minute.  She doesn't know what I look like.

    I put in a call to her secretary on Monday, to find out the next steps now that the surgery has been scheduled. No reply...

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014


    Milandraa same here..I met him twice, once for consult and once post op. My BS has given me so many different measurements of my tumor that I don't know what to think ..I THINK im going for a second opinion to be honest. I went to see her last Thursday about the swelling I had, actually, I had an appointment with her NP. Any way I ran into the BS in the parking lot and she asked why I was there, I had a tank top on so I showed her the swelling..she said it looked like fluid..what doc does a diagnoses in the parking lot !!?? Then I went in to see her NP for my appointment and SHE said it was the chest muscle that was swollen. I waited a few more days to see if it went down but it didn't so I eneded in the ER...still without a reasonable answer as to what it is, but atleast point, kinda like allydp, Im a little beat down over it. Ive kind of given up on it..and im just trusting what they all say. Hopefully Im not making a mistake !

    Wow I just went way off topic there...but my whole point is...these doc's don't give a shit, we are all just a number to them. Atleast that's how the've made me feel

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Even though they've (also ) done some important and very good things, I totally hate Ally's onc, Bobo's PS, (plus whoever it was responsible for giving Bobo that awful infection in the first place) Ganz's BS (and if I recall correctly, Ganz's PS is a repented bastard too), and Milaandra's substitute underonc, and looks like Milaandra's real onc isn't any more available now that she's come back from vacation than she was when she was away.     (Her orthopedic surgeon is a good guy, though :) )  Did my share of hating my own BS, too-- As for my onc-- who knows, but fortunately don't really need him right now and my medical therapy is on autopilot-- 

    My radiation treatments are going fine.    But unlike what the American bco'ers describe, I didn't get a mold made for my back arm and head to hold me always in the same position--- Wish they did that here.      There's just a cup to put my head in, and I have to hold onto a bar over my head, and be careful not to move or twitch (I'm pretty twitchy) or let my elbow drift up or down.   And on the first day, they repeated the test x-ray at least 5 times, shoving my body this way and that, trying to get me in a position  so that things would line up the way they were when they did the CAT scan.    They said they were putting my body straight-- problem is, my spine is pretty crooked...   So they never got things right.    Finally they just said "lie so that it feels straight to you".    That seemed to miraculously put me in the right position (or maybe they were just tired of fidgeting me and gave up?--  The rad onc seemed ready to give up on the position fidgeting and just start treatment several trials earlier, but the assistant kept insisting "but it's too cranial, it's too cranial!")       Today I think they just did 2  X-ray trials (with a minor position change)  before the treatment.     They told me next week it will be quicker.     I wonder if that means they aren't going to do x-rays??   And they'll just trust that I always plop down in the same way??     Oh well--  gotta trust them.

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014

    Hello Ladies, I have a question for you. I got the flu shot on Wednesday and the pneumonia shot on Wednesday and yesterday had a fever. Has anyone else had a fever after the flu shot and mastectomy. I am wondering if this is the new normal too. I have asthma so I get it every year.

    Thank you, Hugs to all


     

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  • angelfaith456
    angelfaith456 Member Posts: 83
    edited October 2014

    quilt - Oh no! I just got home from getting my flu shot..I, too, have asthma and I get it every year..Sometimes people do get a fever after getting the flu shot..I usually just feel bad a few days later but not a fever..I hope you feel better soon..

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Lipglossmommie????????              Hope all is OK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Ally - What did the Gyn Onc surgeon say about the insurance rejection?   Will he write a letter?  Or at this point does it not make any difference since you already submitted the appeal?

    Quilty- Is your fever down today??   Hopefully it was a one time thing and not a new normal for you!    Maybe you went into it with a super stressed body this time, due to the recent surgery that your body is still putting energy into dealing with.    (Or maybe this year's vaccine version s just nasty??)     Hope you're back to feeling OK soon.    

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014

    Thank you everyone. Fever was 101 on Thursday and was gone by Friday morning. I have had flu shots in the past and slightly warm with them, but this was a higher fever. I was thinking that with the surgery too that maybe that was the reaction.

     

    Thank you everyone

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  • Allydp
    Allydp Member Posts: 520
    edited October 2014

    Imhere - how has radiation been going? Were they able to get you in a good position? That has to be nerve wracking not knowing if they're hitting the right spots. With something that crucial I'm sure they're being careful. 

    Well, I'm very relieved to report that after 24 hours in appeal, my insurance approved my surgery!! They said my letter and evidence was overwhelming. I am so so relieved. I already spoke with the hospital and they're hoping to get me on the schedule the week after next. Phew!!!

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014


    Ally that is great news that it is a  go.

     

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  • Sunflowercat
    Sunflowercat Member Posts: 177
    edited October 2014

    oh ally!  I'm thrilled for you!  Keep us posted on your new surgery date.  

    Hi to everyone else.  Life has pretty much returned to normal for me which is really busy.  I'm still trying to get my super high BP under control trying different medications. Some of the side effects were really awful or even debilitating, but I think we're getting closer.  I am getting a cardiac CT scan tomorrow to determine my calcium score before my cardiologist can decide what treatment route we choose.  HBP and heart disease are very prevalent on both sides of my family.  My mom had bypass surgery in her early 50s followed by a stroke.  I do NOT want to go down that path and Tamoxifen increases my risk. I'm hoping that it's mostly just due to stress of cancer dx and treatment and only partly to do with my crappy genetics.  

     I don't post much, but I do enjoy reading everyone's updates.  I hope everyone has a great weekend.

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited October 2014

    Sunflower, thinking of you.

    Ally, hooray!  We will be in the bag for you.

    Quilty, how is your fever?  How are you Mil?  And Imheretoo, how is rads?  Angel, how are your legs?

    I am thinking of all of you.  Busy and rough week after procedure.  As you know we are expected to soldier on as usual.  Really tired.

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Ally, I'm so relieved that your appeal was examined and approved immediately!    And they're going to immediately re-schedule you!   Too bad they had to put you through all that stress in the first place (again!!) though.

    Sunflowercat, I'm so glad you're seeing a cardiologist and getting these heart and BP issues under control!     You do NOT need that too!    

    Angelfaith, D you have a PT start date yet?    How are you feeling?

    Bobo, I hope you were able to sleep a lot on Sunday at least (?)      

    Milaandra, Did your onc ever get back to you???   

    I had day 4 of rads today.      A real quick hop on and off the table today.  (and didn't even have to wait  at all for my turn, either)    No x-rays this time.      I guess they really are able to line up the beam correctly on my two tattoos as long as I plop down in what feels like straight to me and they don't fidget me.    I've decided to trust them!        Friday was a bit weird though, because since they were an hour and a half behind schedule (I think they had a big machine problem that morning) they were really rushing-- and I had some doubts about how carefully they checked the beam-- but that's just me being paranoid.     One misplaced zap won't hurt me anyway, I don't think.   (But I sure hope THEY don't reason that way!   I'm sure they're careful , I should stop being silly) They practically pushed me out of the room before I had my shirt back on, and I'm a really fast dresser!    

    Feeling a bit eeky creaky in my back and hip, and wondering if that's the anastrozole.  (I've been on it a month now)    If it is, good.     (I was starting to wonder if it was doing anything at all, so some kind of side effect is "reassuring".)    Might have a lot to do with helping my large handicapped dog get up a hill, too though.    

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  • angelfaith456
    angelfaith456 Member Posts: 83
    edited October 2014

    Ally - So happy for you and the good news!!!  Yea!!!!

    Sunflower - prayers for you are going up! Glad you are feeling pretty good!

    Quilt - hope that fever went down..

    Bobo - Rest? I hope you get some rest for me too..My sleep is not too good some nights..

    Imheretoo - Sorry you are feeling creaky, take it easy..

    I finally got the call for my physical therapy! Yippee! I go on Nov. 3rd..And they had a center that is 5 minutes from my house! Can't wait..No call yet for my exchange scheduling..did get notice in the mail that the PS have submitted for approval..still waiting for the call..

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