Calling all TNs

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Wow, this thread has certainly been busy.  For those of you suffering complications I am hoping you recover quickly so you can resume treatments and get past this.

    Laurajane: Sounds like you had a really lovely day.

    HeidiToo:  Can't wait to see pics!

    Lovelyface:  PM me and I can get you to the private picture forum.  Also, go to Exchange
    City and Breast Implant Sizing 101 where you will find a large support group of women either undergoing reconstruction or who are helping others through the process.  It is amazing what they can do!

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  • tnbcRuth
    tnbcRuth Member Posts: 454
    edited December 2010

    Amy-congrats on taking control of your day today!  You can get caught up in the stats, so read them once and then forget about them.  There is no way to know how you'll fare until it happens (or not!)  Stay strong and conserve your energy for the 'fight'.  You'll need a clear head and it sounds like you have already figured that out!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013
    Titan- my condolences on your team's epic fail today....CryLaughing
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  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    Our QB sucks...once we get our boy, Colt McCoy. back we will be OK...

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  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    I thought that chemo b-4 surgery was based on tumor size??? Or is it it different with tn's? My tumor was 1.8 cm..diagnosed on Wed., surgery on Friday, chemo 4 weeks later. They moved quickly with me.

    Everyone is different in how they want things done..but dang it..I wanted that thing OUT OF ME..now...!   It was right below my skin..I could see it...glad to have it gone.

    Good to hear from you Nanna, Amy and Michelle! 

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  • lrr4993
    lrr4993 Member Posts: 937
    edited December 2010

    Titan - my reaction to the preadjuvant chemo was just like yours.  I could not get that thing out of me fast enough.

    My onco is heading up a study on preadjuvant chemo and triple negatives.  She tried to convince me to do it.  I pretty much knew I wanted to cut that thing out right away, but I listened to what she had to say and there are certainly some good reasons to do it (mainly for confirmation of the proper chemo for your cancer).  However, one question sealed the deal for me:

    Me: Is there any chance of it spreading while on chemo?

    Onco: There is some chance.  That is the downside.

    Me:  Ya think?!

    Mine was triple negative with a 98% Ki67 score.  I felt like waiting the 6 days that I had to wait for surgery was too long.  After surgery the path report revealed metaplastic features (not a true metaplastic, but some features of metaplastic), which made me all the more happy to have it out of me.

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  • patty61
    patty61 Member Posts: 10
    edited December 2010

    I want to thank all that post as just reading this thread has helped me emotionally.

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  • Titan
    Titan Member Posts: 2,956
    edited December 2010

    Hi Patty...reading and posting on here helps me too!

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited December 2010

    ...ditto.  This thread is a great help to me too!

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  • 99Sporty
    99Sporty Member Posts: 24
    edited December 2010

    I feel like I've been waiting FOREVER for something to happen!!!  the people at the imaging center that gave me the diagnosis led me to believe it would be something like 6 days till surgery, but now its been almost a month - nothing has happened yet and surgery isn't even scheduled.  I'm getting nuts about it.  I can feel the damn thing - mine is right on the surface too, when I don't have a bra on the lump is visible.  And now I'm feeling little shooting pains and its tender. The surgeon met me quickly, but then wanted to take a lymph node sample and get the HER2 checked which was not done on the original pathology.  So good news - lymph node clear, bad news.. HER2 -,and here I am.  Meanwhile - waiting for all that stuff and then the surgeon was out for a week and the onc couldn't see me for 2 weeks. 

     BTW - GO STEELERS!!!!!

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  • dlcw
    dlcw Member Posts: 107
    edited December 2010

    99Sporty - I know how you feel.  I had my mammo on the 19th - the radiologist was pretty sure then.  Had the biopsy on the 22nd, got the news the next day - so it's now been 3 full weeks!  Have a chemo counseling appt. tomorrow morning, then meeting with the surgeon in the afternoon, but they don't have a surgery slot for placing a port until Friday - so that would make it a full month before I get the port - then hopefully chemo that following week (Merry Christmas to me!).  It's making me nuts waiting.....I already know it's in at least one lymph node and I can just imagine that it's getting further every day.  Anyway, I hope we boh get started soon! 

    Donna

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    I went almost crazy waiting for chemo to be done so I could have surgery.  After being on here for a year I realize how lucky I am that I responded so well to chemo--they wouldn't have been able to clear margins or get them out otherwise.  Just goes to show how each of us is different.

    I am so happy for this thread and to be able to come here and share.  I have been in a blue funk now for a month.  I think now that the biggest part is over I am now dealing with the loss.  Really want to get past this.

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  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    Ladies I need help and opinions...

    hmmm....not sure how to phrase the question.....for TN women is it best to get a BMX or just have a mx on the side of the BC...My team hasn't mentioned having both sides removed, but will that decrease the chances of recurrence. I go back to visit with my team Wed., but wanted to see what other TN are choosing and what they are being told..Thanks in advance

    Melissa 

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  • riley702
    riley702 Member Posts: 1,600
    edited August 2013

    Melissa, there isn't a 'one size fits all' answer to that. I suspect you'd get answers across the spectrum. A lot of it depends on the type, size of tumor, whether you have positive nodes, your age, your own personal level of risk you're willing to accept, etc. If you just want to gauge our own differing philosophies and then see what feels best for you, that's fine.

    For me, I chose BMX, but haven't decided on reconstruction yet. I went for the most aggressive chemo they offered me (a clinical trial), and opted for radiation, too, although it was borderline whether it would be helpful. But that's just me. I hate uncertainties and this is a biggie. I feel more at peace knowing I've done everything I could, but know that's not for everyone, so I'll let others chime in now with what they chose.

    Just know it's a personal decision that you need to feel comfortable with.

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  • Luah
    Luah Member Posts: 1,541
    edited December 2010

    Melissa: You may find this interesting, from a couple of the top doctors in triple negative BC. http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/#q20

    Riley702 is right... you will get all differing opinions from women here.  Get as much information as you can, and then make a decision that's right for you.  

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  • Luah
    Luah Member Posts: 1,541
    edited December 2010
    lrr493:  I am really glad to hear there is some research being done comparing outcomes from neoadjuvent chemo versus sugery-first in triple negatives. It's obvious that neoadjuvent can inform the onc about the effectiveness of a regime and that seems pretty important to a trip neg with no other systemic treatment options.  But does altering the regime make a difference in outcome? Does delay matter?  Maybe chemo is more effective on the cancer cells floating around the body than the tumour mass itself?  These are the questions I'd like to have answered (or would have liked to have answered when I was diagnosed).   
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  • 99Sporty
    99Sporty Member Posts: 24
    edited December 2010

    Melissa no one even suggested MX or BMX to me...  they felt lumpectomy w/chemo and radiation was the way to go.  So far it doesn't look like its in my nodes.  (but if we keep screwing around that will change!)  I have very large breasts, so they've got plenty to work with.. if I was smaller the size the of the tumor would likely dictate a MX.  Right now the plan for me is lumpectomy with matching reduction to the other side.  (My stats say 3cm - it measured 3.9.. )

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  • JenC
    JenC Member Posts: 382
    edited December 2010

    laurajane - Over the weekend the pain in my knee has seemed to go away so I think I may have pulled something or it could have been a delay of the Taxol who knows.  We put so many chemicals in our bodies with this crap that one can never tell. Hope yous stops soon:)  (HUGS)))

     Going in today to see if they  will restart rads.  Hoping so  only 7 left and the skin has cleared up really good.  Still some spots of red but NOTHING like last week.

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  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    Got another question?  Are rads given during chemo?  or is it completed separately? 

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  • Luah
    Luah Member Posts: 1,541
    edited December 2010

    Melissa: Rads are usually given separately, as the last phase of treatment... following chemo or following surgery if neoadjuvent chemo was done.

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  • PinkPeeCA
    PinkPeeCA Member Posts: 27
    edited August 2013
    on changing protocol in the middle of the protocol at http://pinkpeeca.blogspot  What a week. The one thing my three docs agreed on is neoadjuvant chemotherapy, then surgery, then?  Even the surgeon agreed.  I can't take Taxol (rash, knees, chest pain, difficulty breathing) but there are similar ones available.   So sad to see so many new names posting, do we all just go away after one or two years?  To the old timers (more than 6 months)  thank you for staying, this has been a huge help to me.
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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    I agree Pink Pee! Reading the posts of those "on the other side" is so comforting. I respect what you all have to say and enjoy your good humor! Thank you!

    Tiffany

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  • cc4npg
    cc4npg Member Posts: 764
    edited August 2013
    Melissa:  You've gotten some really good advice from the other ladies here.  Throwing in my two cents here.  BMX or MX or lumpectomy... it's all a personal decision, one that you must make based on all the information pertaining to your specific diagnosis.  Some women, such as myself, weigh unilateral mx versus bilateral mx based on our BRCA status.  I was positive, and felt it was a no brainer to have bmx.  I originally would have chosen unilateral, based on the fact I'm very small and my BS felt I would most likely be disfigured by lumpectomy.  These all carry the same prognosis... there is no difference in survival or recurrence between them.  The only difference would be if you find out you are BRCA positive.  Rads... I've read some studies where they have been given during surgery... like a spot dosage right in the area needed.  However, most often rads are done post surgery, and post chemo, if needed.  You are in a whirlwind of decisions right now, none of which are easy.  You're probably getting all kinds of info, which is good, but can sometimes (often) be overwhelming.  I recommend a second opinion, even if you love your BS.  It's never a bad idea to get someone else's opinion.  But ask your BS if lumpectomy will leave a good result for you.  Consider that you might not have to have rads if you have mastectomy.  Rarely you do, but most often you won't.  Rads are hard on the skin.  If you want immediate reconstruction and know you'll have to have rads if you get lumpectomy, ask your PS advice on this.  Some women choose mx or bmx because of the damage rads leave to the skin, or for symmetry purposes.  If you haven't checked out the picture forum here, I strongly recommend you do.  There are several women who can help you get to that site, and it will give you a wealth of info via pictures of what to expect! 
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  • gillyone
    gillyone Member Posts: 1,727
    edited December 2010

    I am almost 1 year out of tx - finished December 31, 2009. Hard to imagine I can be considered an oldtimer on this thread!!  :)

    For what it's worth, I had lumpectomy, chemo (DD AC/T) then radiation.

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  • cc4npg
    cc4npg Member Posts: 764
    edited December 2010

    Yeah Gill!  One year out!!  We need you "old timers"!  LOL  Keep coming back sometimes to reassure the rest of us!  I'm in the midst of chemo right now and feel it could actually kill me instead of the cancer.  Had neutropenic fever, got neupogen, and had a reaction to it which gave me tachycardia.  And my reports indicate I may have had pneumonia!  I thought I was doing so well with the first round.  Now I'm really anxious for the next one next Monday.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Long day today. Everything OK but lots of stressful doctor's exams & further testing that encompassed the entire day and three different locations within state (rescan of lungs showed previous questionable area resolved) If this damn cancer doesn't kill me these fricking tests (and the anxiety they produce) will. I'm *BEAT* and feel like I have *once again* dodged another d*mn bullet.

    On a lighter note, I have all the Dept. 56 video taken and am just putting it to some music (iTune isn't cooperating with my music choices for upload, even though it's my d*mn music CD!) And right now I am too pooped to work on it (maybe tomorrow-- after scanxiety overload has time to diffuse via a good nights sleep).

    Time to decompress---am I rambling? Two xanax earlier, 2 mint/peppermint schnapps ice cream soda like cocktails (very Christmasy and pretty to look at <Applebees>) and a pasta dish. All sinfully delicious and damn the calories--- I had clean scans and an excuse to celebrate!

    OK, I'll shut up and go to bed now. Tomorrow's going to be a better day.

    Heidi (warming her buns by the den fire and listening to happy pups chewing on knuckle bones)

    ZZZZZZZZZZZZZ

    PS- I'm with those who wanted their nasty-assed tumors out ASAP and both med onc and BS concurred (no neoadjuvant chemo). FWIW

    ZZZZZZZZZZZZZZZZZ (over & out)Funky post tonight, huh?

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Heidi - Hope you get to totally relax tonight and that all settles down for you.  I relate to your "dodging another damn bullet."  While I have not YET had to have any other testing since treatment ended (and I say that with both fingers crossed on each hand), I too feel exactly as you do and say it after each 3 month and 6 month vists with onc and BS.  It's as though I hold my breath after each visit until the next one.  I detest living like this, but then again, I am living so that helps!

    Can't wait for the video.  Now I'm going to lay down on the floor after a busy, busy day at work and chew on my knuckle bones - I go for my next 3 month with onc next week.

    Linda
     

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited December 2010
    • Heidi - glad to hear all is okay from your test.  You deserve to celebrate.
     
    Linda - here's hoping all wlll be good for your onc visit next week. 
     
    I finished chemo in Feb. and rads in April of this year so not sure if I'm an "old timer" get but I'm feeling well too. Still can't believe I HAD breast cancer (i'm preferring to use past tense)!  It's freezing cold here.  The doors on my car were frozen shut this morning when I was "trying" to go to work.  Now for a hot shower and a warm cup of tea and my pjs. Good night all.
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  • ebann
    ebann Member Posts: 3,026
    edited December 2010
    moe0279: I had chemo with rads. They do do it just it is usually done separately. Why do you ask?
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  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    Just wondering...the original plan for me was to have surgery, chemo, then rads.. now with my second opinion the plan is chemo..surgery, then rads...I have read in many different boards and some ladies have them together...I haven't thought to discuss with my onc..i really didn't know it was an option..and in what cases they do it..pros and cons.??

    Ultimately, im trying to get the most information so that i can make sure im covering everything...sometimes i think i may be worrying to much about everything...but i'm not sure how to stop...

    I appreciate all the info you ladies give me... i want to be well informed! 

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