Calling all TNs

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    Hope - So sorry you are going through this...... Hearts and prayers are with you.

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited July 2012

    Hope so sorry - sending ((((hugs)))) and lots of them.

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited July 2012

    Bernie how funny!

    Hope60 lots of hugs and prayers your way!! 

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  • bak94
    bak94 Member Posts: 1,846
    edited July 2012

    Oh Hope, we must have been posting at the same time and i just now saw your post. Please dont worry about upsetting us. We are here for you. Thinking of you.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Hope - (((hugs)))  I know how you feel, I sometimes have the same fear.  I think I am every TN's nightmare and not exactly a shining example of how metformin prevents recurrences.  We're here for each other, regardless of what our individual circumstances might be.

    Inmate - are you OK?  Haven't heard from you in a while, and I'm hoping all is good with you.

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  • OBXK
    OBXK Member Posts: 791
    edited July 2012

    Hope60 - I am so sorry you have been dealing with this. I would be pretty freaked too. I also think I would be taking round the clock Ativan. Calming thoughts your way. We're in your pocket.

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2012

    Hope60 - praying for you and so so sorry you are going through this.

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  • TifJ
    TifJ Member Posts: 1,568
    edited July 2012

    Hope - we are here for you no matter what. This thread is for the good, the bad and the ugly. Never be afraid to reach out. I am so sorry this is happening.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    Hope thank you for letting us know so that we can send our good vibes to you.  HUGS to you and I am really sorry you must deal with this.

    Tomorrow is my 3 month follow up  and I am a nervous wreck!

    Maggie

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  • Titan
    Titan Member Posts: 2,956
    edited July 2012

    dang this laptop!

    Cocker..I meant to say I love the pic of your homeland...just beautiful....and good luck with rads...I know everyone is different but rads should go well with you...maybe a little tired..maybe a little burning...but just me..but rads was easy compared to chemo....quicker, no drugs..just being zapped and you are out of there...like the others have said take good care of your skin...and if you need to let the girls go free do so...bras can really chafe the skin...

    Oh Hope...I hope that your MO is WRONG!  

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  • Titan
    Titan Member Posts: 2,956
    edited July 2012

    Navy...sounds like a wonderful time at the cherryfest...!   I'm jealous...need a vacation big time..

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  • DorMac
    DorMac Member Posts: 155
    edited July 2012

    Hope - I am so sorry to hear your news - I am sending prayers and hugs your way!

    Doreen 

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited July 2012

    Hope, praying for you and big HUGS!!!

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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Mags - good luck on your follow up - positive thoughts!  

    Hope - (((HUGS)))

     CS - glad no more chemo for you- we should be starting rads about the same time! WE we rock it! 

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  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Hope,

    Praying for you.

    T

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited July 2012

    Maggie - good luck tomorrow



    Hope, I am so sorry. Please don't stay away. especially when you need support and comfort the most. I will be praying for you.

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  • naan1004
    naan1004 Member Posts: 520
    edited July 2012

    Kathrnn, no rads for me, both BS and onc feel my pathology was so good no need.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Hope60 - I am so very sorry you are going through this.  I can only imagine how frightened you feel and that wouldn't be enough.  After all that you have been through and now this. Don't ever stay away for fear of upsetting us, we are all here for each other.  I am hoping and praying that your MO is  wrong.  Sending you my hand to hold tomorrow so you won't be alone. I will be thinking of you all day and hoping things are ok for you.  Sending lots and lots of huge big warm hugs.  Annie      

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2012

    Hope: We will all be here for you.  Giving you strength for todays appt.  

    You too, Babs.  Sending good vibes your way.

    I hate this freeking disease.

    Trying to learn something new here....some are mentioning Oncotype numbers.  I thought that when tumor was TN an oncotype was not done/needed/useful.  Anyone who can shed some light please help me understand.

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited July 2012

    My understanding is that the Oncotype number may be used for cases with ER Positive, not TN. It would be interesting to learn more this was not part of my report either... I also never had a PET scan. I'm asking my Onc about both on Tuesday.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    I had an oncotype test because my initial pathology indicated I was ER+ at 8% and my sentinel node biopsy was all clear.  The Oncotype came back high because it showed 6.2% ER+ which fell below their cutoff of 6.5%.  Subsequent biopsies have all come back TN.  Generally speaking, oncotype testing isn't performed on TN tumors.  It's an expensive test, about $3500, and there is just one lab that performs it (at least that was the case two years ago).

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited July 2012

    Hope60:  Thinking of you and sending positive thoughts and wrapping you in white light.  Keep us posted and don't feel you need to stay away.  We're all in this together and we're all here for each other.  Holding your hand as you meet with your MO.  Try to breathe and remember that it could be lots of other things.  xoxox

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited July 2012

    Naan1004 - I hesitated in making this post, but I hope you will realize it is just my humble opinion and comes from concern. I may be wrong, (others will chime in soon and straighten me out if I am) but radiation after LX is almost standard in all cases. The way my BS explained it to me was, that even though my margins were clean, that was no guarantee that there weren't small cancerous cells left elsewhere in the breast.

    Your MO has gone from "you need more chemo" to now everything is fine and you don't need radiation.

    I would suggest you ask them what specifically it was about your pathology report, that led them to believe you didn't need radiation. You've also had such conflicting answers, that I would really suggest getting a second opinion (from a MO not affiliated with them)

    If you really don't need rads, I'm thrilled for you. I just don't want you to hear a couple years down the road, "gee, maybe we should have". What I'm trying to say is that I don't want you to have to live with regrets, and maybe a second opinion is the best way to get both peace of mind with their recommendation, and avoid the "what if I hads"

    Hope my post doesn't offend you and again it's just my humble opinion.



    Hope and Mags - I'm praying for you both this morning.

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  • LM50
    LM50 Member Posts: 18
    edited July 2012
    JazzyJ:  I had the oncotype because my initial path report showed ER- but PR positive at 3%.  The oncotype came back with ER of <3.7 (positive would have been 6.4) amd PR- at 4.4 (positive would have been 5.5).  If your initial path report was ER and PR -, your ONC would not have ordered the oncotype.  I hope that helps. Wink
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  • Tookybum
    Tookybum Member Posts: 38
    edited July 2012

    I am new to your exclusive club.  I just found out today that I am TN.  And to be honest I am more scared now than when I first found out I had BC.  I am trying to keep the positives in mind but today that just ins't working.

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  • KSteve
    KSteve Member Posts: 486
    edited July 2012

    Tookybum - Remember, while TNBC is more aggressive, it usually responds better/quicker to chemo than other types.   I understand your fear and once you have more information and time to digest it, your fears will calm some.  I was stage IIIa and am over a year a half out of chemo.  I can honestly say that I'm in better shape physically than I was when I was diagnosed.  Just take it one day at a time, and know that you're entitled to all of the feelings you're having.  And trust me, we all understand the ups and downs that come with a breast cancer diagnosis.

    Hugs,

    Kathy

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  • naan1004
    naan1004 Member Posts: 520
    edited July 2012

    Kathrynn, not offended at all and understand your concern, perhaps my onc wanted me to have more chemo because I didn't qualify for rads for the same reasons u gave. I'll take what u said into consideration, since I do plan to find a new onc.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    Tookybum--welcome to our family.  I had a major panic attack when I realized that TN was "so Horrible".  My family calmed me down and helped me get control of myself.  I did push for basically what was an immediate BMX because mine was also metaplastic and i wanted the factory off of me.  Now with the TX behind me looking I am getting on with my life.  You will feel so much better when you get the plan of attack in place an know what is coming next.  TN is VERY treatable as you can see from this thread.  You have come to the right place.  Ask anything of these fine ladies and they will be along quickly with an answer

    My 3 month follow up went AWESOME-- No circulating tumor cells in my body!!  YES YES YES  happy dancing.  I hate the anxiety that comes along with an appt to the doc now.  She did not at a spot on my bakc that she thinks may be pre-cancerous.  Fantastic..but have an appt for next week to have it looked at by a dermatologist.

    Hope --I am thinking of you and pray for you.  Keep us posted as best you can.  We will be here waiting to check on your healing.

    Maggie 

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  • JAN69
    JAN69 Member Posts: 947
    edited July 2012

    Tookybum,  I totally agree with KSteve.  Any cancer is scary, especially the type we have.  I'm 70 years young, also in better shape than when diagnosed a year and a half ago.  You will come to a point of acceptance, and then you'll put one foot in front of the other.  Somedays the steps may feel like stopping or going backwards.  But this journey keeps going and soon you'll be an ol' pro like many of us.  We survive, find a new normal, and live a good life.  The women on here should give you comfort and support like no others can.  We can all have fun with jokes, stories, and banter.  It gives me proof that we survivors are just as vital as ever.  Keep checking in here ---several times a day, if you can.  You are now part of our family and we care very much for you.  Jan

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  • JAN69
    JAN69 Member Posts: 947
    edited July 2012

    Hope,  So sorry you are living everyone's nightmare.  You are in my thoughts and prayers.  I sincerely hope that all this worry was for something far more benign.  Whatever you have to face, we are here for you to support, listen, and comfort.  Please keep us informed.  We care.

     The best things this week so far, and it's only Wednesday,  DH's leukemia is stable, come back in 6 months; I don't need a hysterectomy (!); and I'm spending the day with my nearly 12 year old granddaughter.  PB&J for lunch.  Life is good.

     Thanks Bernie and Annie for keeping our spirits up.  Laughter and happy tears = good medicine.

    Annie, do you take your work with you to the lodge?  I hope you can just kick-back and be lazy.

    So many posts, but I read them all.  Blessings for a carefree day to all.  Jan

     

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