Illinois ladies facing bc

17217227247267271180

Comments

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    Katie....first off, big hugs to you!!!! I know it's so hard to make all these decisions! I think first you need to talk to your surgeon at Evanston and than take all the information and decide. I met with Witt before my BMX and the only reason I did not go with him was I live way out in the western burbs and being close to home was very important to me with my terrified 8 yo. I had all of my chemo at rush though. Honestly, none of us can tell you which way to go....you have to go with your own gut feeling. But know that we are all here for you and you have two excellent choices so either way, I think it's going to all be ok!!! Hang in there!!!!!! (((((hugs)))))

  • spunkyboobster
    spunkyboobster Posts: 563
    edited February 2012

    Katie-So sorry you're having to make this tough decision. I know it feels like you have to make this choice yesterday, but if you don't make the currently scheduled surgery dates, you can change them to a later date when you are comfortable with your decision. Perhaps a third opinion? I've heard nothing but goodf things about Dr. Witt, but you have to go with whomever you're comfortable. It'll work out, even if it doesn't feel like it right now. Hugs and positive thoughts being sent your way.

  • lago
    lago Posts: 11,653
    edited February 2012

    Katie My opinion is biased since I went with Dr. Witt and believe it or not didn't get a 2nd opinion. I was on board with him from the start. Remember this is the BS that initially said when I was considering doing a BMX that he doesn't  like to removed healthy tissue but would support what ever I wanted to do… and then we got the MRI results and he changed his recommendation. He doesn't remove stuff  if he doesn't feel it's necessary. 

    But I too have read that residual cells can be left on a biopsy scar. I know there are a few women (in think binney is one) that recommend you tell your BS to remove the entire biopsy track including the scar. (My track of course was deeper since my tumor was in the posterior region) I have been Dr. Witt does have a reputation of taking more breast tissue than others. As you know even with MX they can't possible remove all breast tissue.

    Dr. Witt noted where my scar was at preop so he was sure to remove it.

    And I've said this before: scars fade. And if they don't fade they can use a laser to lighten them. I too was concerned about the long scar but I see it continue to fade. The reddest one is the one from October's revision.

    Maybe you can ask the Evanston BS to removed the scar. Call me if you need to talk.

  • Katiep1388
    Katiep1388 Posts: 44
    edited February 2012

    Thanks you ladies.. Ive had so many other opinions, and i did ask the BS at evanston about removing the lower half where the area was, heres the problem..



    - my lumpectomy margins were spectacularly clear, typically removing the scar is when they are not.



    - my scar is huge literally goes vertically up the entire side of my breast, thr BS at evanston said removing the entire thing could cause blood flow issues and at worse cause necrosis of the flap, which is horrifying because then its not a thin clean line anymore... Witt basically wants to do the usual horizontal cut with it extending up the whole side... OR just remove the bottom but then radiation is definite.. And has other complications since i sont want a flap surgery at 23...



    Im hoping i can get the other surgeon on the phone today ...



    I got 4 hours of sleep last night and had a nightmare that i was walking around Rush with my heart cut out of my chest and in my hands... I brought it to dr. Cook(the PS) to put it back in... Could it have been more symbolic?!

  • Rene23
    Rene23 Posts: 290
    edited February 2012

    Katie - I'm so sorry to hear how torn you are about all these options.  I'll be honest with you though, if I was told there was increased uptake anywhere in my tissues, that area would be gone as soon as I could make it so.  But that's me.  It's hugely important that you are well-informed and as comfortable as you can be with any of these decisions.  I know that NONE of it is anything you want to hear.  We've all been there.  This is an especially tough time because so much is being thrown at you, and when some of it involves surgery, that can be especially frightening.  Maybe you need to discuss with someone (DH, a good friend, the ladies here, your MD) what your long-term concerns are about each option.

    I know it feels like the clock is ticking, but if you feel like you need a third opinion, then by all means, get one.  Those surgery dates CAN be moved back, trust me, surgery dates are changed all the time. I think it's more important that you have a good understanding and acceptance of what you are choosing to do, even if none of it feels positive now, keep in mind that you are doing all this to help yourself beat back, and hopefully eliminate this disease from your body.  

    Big hugs to you... 

  • lago
    lago Posts: 11,653
    edited February 2012
    Katie I would also talk to Dr. Cook again and see what he feels about the necrosis risk if you went with Dr. Witt's plan of removing more tissue. He's usually in Chicago on Wednesday's. I'm sure you can get him on the phone instead of coming in.
  • buddy1
    buddy1 Posts: 529
    edited February 2012

    Onward , Thank you for the youtube link.

    Spunkyboobs  no Tamoxifin here but I do take Arimidex.

    I loved the picture of you all.  Your all so beautiful.  If you ever decide to go back to Orland Park for lunch like we did a few years back please let me know.  I would be thrilled.  I remember Donna set that up,

  • hawk
    hawk Posts: 255
    edited February 2012

    Katie, I agree with eveyone else.  Making the decisions is the absolute worst worst part.  I also agree to go with your gut.  You have to feel that once your decision is made, you are at peace with that decision. About the biopsy track and the lumpectomy scar... my RO is giving me 26 regular tx that include my biopsy track and 9 boosts that specifically hit the tumor bed and the lumpectomy scar.  I don't know if that info will help you or not but PM me if you have questions or want to know what my RO said about it.  Big hugs to you.

  • NancyJill
    NancyJill Posts: 127
    edited February 2012

    I don't know what increased uptake means, but I am going with recommended radiation after my lumpectomy, which had clear margins. Also had chemo. My scar is horizontal and looks pretty good. 6 months later I still have tingling along the incision sometimes. Good luck making your decisions. I go with the advice of my BS, whom I trust.

  • joan888
    joan888 Posts: 711
    edited February 2012

    Katie... You have gotten alot of good advice from the ladies here.  I can only second everyone else's opinion.  (((Hugs))) to you as you go about arriving at your decision. Wish we could just lift the weight off your shoulders.  Really weird dream!

    I seem to be caught up in tests and LEPT this week.  Did a DEXA on Monday and don't have results yet, but sort of hard to get too nervous over that one after all I have been through already.  Yesterday I had a lower back MRI which I am more concerned about.  I have some pinched nerve issues for sure which have been plaguing me for a long while.  Now that I can take a breather from BC stuff, it is time to deal with that.  Whatever!  I have also been trapsing back and forth to my LEPT to get my arm wrapped.  She did alot of MLD yesterday before wrapping and things are looking really good.  Hopefully, tomorrow is my last appt.

    So, after stopping the exemestane (Aromasin) for a couple weeks, I am feeling tons better.  My ONC was successful with his appeal to MEDCO to put me back on name brand FEMARA so I started that again on Monday. And MEDCO reduced my co-pay to $180 for 90 day supply.  Still pretty pricey so hopefully I will be able to tolerate it better.

    Now, if that darn SUN would show its face around here, we would all feel better!  Sun????? Rita, send some up here ASAP.

  • illinoislady
    illinoislady Posts: 46,506
    edited February 2012
    "We all possess something called "intuition". It's an inner "knowing' which, when paid attention to, will help us make decisions and even prevent us from making mistakes!"
    ~Anita Foley
  • kater
    kater Posts: 447
    edited February 2012
    FDA ALERT http://www.drugs.com/fda/avastin-bevacizumab-counterfeit-product-fda-issues-letters-19-medical-practices-13085.html

    Avastin COUNTERFEIT FOUND

     Avastin is an injectable medicine used to treat cancer and is administered to patients in clinics, hospitals, and doctors' offices. Roche is the company that manufactures Avastin approved for marketing outside of the United States. Roche conducted laboratory tests that confirmed the counterfeit version of Avastin. Packages or vials may be counterfeit if they:

    are labeled with Roche as the manufacturer
    display batch numbers that start with B6010, B6011 or B86017

    The only FDA-approved version of Avastin for use in the United States is marketed by Genentech (a member company of Roche). The FDA-approved version does not include the Roche logo on the packaging or vials. FDA approved versions of these medicines are available in adequate supply to meet demand.

  • lago
    lago Posts: 11,653
    edited February 2012

    OMG  kater people are so evil.

  • makmak
    makmak Posts: 374
    edited February 2012

    Weird or good... I just realized I just passed my 2 year mark!!! :) totally forgot about it.. :) 

  • lago
    lago Posts: 11,653
    edited February 2012

    Keep in going Makmak. 2 years and counting many more.

  • spunkyboobster
    spunkyboobster Posts: 563
    edited February 2012

    Makmak-the first two of many, many more. Way to go!!!!!!!!!!

  • zap
    zap Posts: 1,850
    edited February 2012

    MakMak, I remember meeting you for the first time on this thread.  You are one strong and determined woman and have really  been constant when advocating and being aggressive to get what you need to get healthy.  I know it takes more than attitude as many have it without your great results...but good for you and keep your eye on the prize! 

  • wendyk13
    wendyk13 Posts: 1,458
    edited February 2012

    Mak.....Happy #2! Let's try for 102! Slow and steady wins the race....

  • onward
    onward Posts: 229
    edited February 2012

    Big belated birthday wishes for Susan, Big 2nd year congrats to Marina, and Big, giant hugs for Katie. I cant sway you one way or another, but I am sending prayers of discernment your way. I'm with the Anita Foley quote,, when we remove the noise around us, there is a quiet voice telling you which way to go.....follow it and question it not.

    Am I sick to be looking forward to watching Survivor tonight???????? What is happening to me. Onward

  • lago
    lago Posts: 11,653
    edited February 2012

    Sorry onward I'm watching Top Chef tonight.

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    Onward.... Is it sick I've never missed one episode of Survivor?? I seriously haven't.... Crazy right? I'll be watching my DVR later tonight and excited about it being back for sure! :)

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    Robo...you and I could probably share the same bottle of shampoo for a year and still have some left.... This is a much slower process than I expected. We are what, 9 weeks pfc now? and I still look very bald. I do have more peach fuzz but seriously?? I'm nowhere near being able to go "topless". My goal was by my Mexico trip (April 13) but the way it's going I'm thinking not. BOO!!! I'm getting very impatient!

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    I was hoping so but unless my head really starts sprouting I'm gonna fall short. I really expected a little more than what I have by now. :( And my hot flashes and s/e's from the tamoxifen....two big thumbs down!!!



    I have my exchange surgery on march 5th... I guess I'll just look forward to that?

  • illinoislady
    illinoislady Posts: 46,506
    edited February 2012

    Doesn't hair usually grow an inch a month.....so 2 ins. of fuzzy....it could work.  Seriously, I know it is hard -- you have been thru so much and you want it now.  If I could lend you mine for a few weeks I would....but the minute you could you give it right back.  I still have my same old thin, fine hair.....only have an Arimidex ( thin--nearly bald--- spot ) where my cowlick is and I'm forever peeking the the mirror trying to see if I need to attempt to cover it up.....for the 100th. time.  Don't know why...it's just going to do it again.

    Yay Mak.....

    Hugs, Jackie

  • Katiep1388
    Katiep1388 Posts: 44
    edited February 2012

    Ladies i only got fuzz too! I feel like thats just getting longer and i look like a warewolf or something... Im only a month out.. I read about ppl using ladies rogain... My mom wont let me lol! Maybe you ladies could try it ? They gotta invent a hair growin juice!

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    Katie, maybe we should try to invent that??? I'd be buying cases of it if there was such a thing!!!



    Jackie, you are the sweetest to want to lend your hair if you could! :) and if my hair would do the one inch/month I would be SO content with that!!! A nice full buzz cut for cancun will be ok with me!

  • Madismommy719
    Madismommy719 Posts: 377
    edited February 2012

    Effexor didn't work for me, either dose. :(



    My biggest s/e's are the hot flashes and than joint pain and headaches.... And now I'm totally paranoid about any pains I get so I immediately convince myself it's a brain tumor and/or bone cancer. :(



    My last fill was before my 1st chemo....I'm so ready to get these turtle shells off my chest. But, I'm also dreading my surgery.....I don't like general anaesthesia at all!!!

  • wendyk13
    wendyk13 Posts: 1,458
    edited February 2012

    Morning! 35 and drizzling...could be worse tho...think if last nights downpour had been snow.



    Hair! Gosh I so remember waiting for my hair...it grows about 1/2" every month so I plotted how long it would take to have long hair. Well....yeah. Did not work like that. My last chemo was 5/9 and I did not stop wearing a wig until January and my hair was still verrrrry short. By March tho I needed a haircut very badly and by summer it was hanging past my ears. It will come tho...just not fast enough. I guess it takes awhile for the follicles to get back to work. :(



    Katie....you got so much good advice so I have nothing to add but a hug!



    Zap....how's Violet??????



    Hope you all have a lovely Thursday!

  • lago
    lago Posts: 11,653
    edited February 2012

    Jackie I do believe hair grows 1/2-3/4" a month.

    Katiep I do use Minoxidil but that's because I used it before. My hair started to recede. I don't believe it speeds up hair growth. In my case I believe it helps it from falling out and I did get a little regrowth in the areas that it rece  d ed. All those places that receded before chemo actually re-grew. So if your hair is growing (granted slowly) I don't think the Minoxidil is going to do much. I didn't use it when I was on chemo and started back on it well after my hair started to grow so I could keep what came in.

    Madmom I know what you mean about bone pain. I'm sore on the lower rib under my left boobie prize. But I know I just had a revision in October. It's just still healing. I also have a little pain in my left hip… figured out it's muscle not bone. Yeah we're going to get aches but I agree that regular headaches would concern me too.

    General anaesthesia and I don't get along at all. I get so nauseous. The last time (exchange) my PS made a note of it and I had a discussion about it with my anaesthesiologist. He said "no gas" for me. Not sure what else he did with the cocktail but I wasn't one bit nauseous.  You need to let them know so they can do something for you.

    Robo, I'm on an estrogen sucker not the estrogen blocker, but I too was scared. I mean look at what Joan and Onward have been through. Thing is the first 3 months I had no SE and my hot flashes from chemo calmed down. I do have  joint stiffness but not to bad so far.  I'm 2 weeks shy of being on this for a year. My feeling was give it a try, I can always quit if it's that bad.

  • mdg
    mdg Posts: 1,468
    edited February 2012

    Hey girls!  Congrats MakMak!  Yea!  Love hearing these anniversaries ladies...keep them coming! 

    Mad and Robo on the hair front...I did a ton of reading about hair even with using cold caps.  I did read that if you are deficient in Iron and Magnesium it will effect hair growth.  Biotin and Silica also help with hair growth.  I was anemic after chemo and started on iron and magnesium.  I think it helped.  Just an idea.   I hope the hair comes in quick.....

    Hope all of you are doing well.  My sister just called yesterday - she is coming with her kids for the weekend!  Can't wait.  I am missing my family a lot since moving here.  I am off to the gym now.  Hugs to all!