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Calling all TNs

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Comments

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2012

    Congrats, Sugar!!!

    Tina - ouch!  So sorry your port placement caused so much trouble.  Hopefully everything is resolved and you are feeling better!

  • ksmatthews
    ksmatthews Member Posts: 743
    edited January 2012

    Tina so sorry you had problems with the port placement.

    I am feeling 75% better.  This muscle thing is something else.  Did go to my primary and he did alot of bloodwork, results will be back today.  So should know more, he said even after chemo this muscle weekness is not normal..  So we will see whats going on. 

  • TifJ
    TifJ Member Posts: 804
    edited January 2012

    Yay Sugar!!

    Tina- how crappy is that! Hope you get to feeling better soon!

    ks- hope the muscle thing is nothing major and your blood work is all good.

    Suze- are you home yet?

  • Luah
    Luah Member Posts: 626
    edited January 2012

    Sugar: Congrats on the good check-up. Next week, I think my onc will say the same thing about metformin. My family doc did bloodwork at my annual physical and my blood glocose level came back at 4.7 - so very normal. 

    Tina: That sucks, but yes, there are so many little hiccups along the treatment journey; hope this passes quickly for you.  

    Ladies, I've often wondered if TN's pattern of coming back sooner (if it recurs) happens for any  innate reason other than we are not on hormone therapy - does anyone know?

  • sugar77
    sugar77 Member Posts: 1,328
    edited January 2012

    Luah, good question about the pattern.  My uneducated guess would be a combination of the fact our tumours are generally grade three and faster growing coupled with no hormonal treatment.

  • christina1961
    christina1961 Member Posts: 450
    edited January 2012

    Luah,

    I agree with Sugar - I think the risk for more rapid recurrence has more do with the grade. I'm basing this on some study I read somewhere that said after 5 years the grade 3 risk factor was no longer a risk factor.  The oncologist at Vanderbilt told me if I didn't have a recurrence by three years that would be a very good sign and if I didn't have one within 5 that I was most likely not going to have one ever.  I have 5-10% ER receptors and am going on tamoxifen (although the Vanderbilt oncologist didn't think the tamoxifen would do much for me.)

  • michelleo13
    michelleo13 Member Posts: 116
    edited January 2012

    I also get a cloth gown when I see my MO. In fact, the one time the nurse forgot to get me to change into a gown, the doctor actually left the room to give me time to get changed. 

    Great news Sugar. Long may it continue!

    Tina, hope you feel better soon!

  • khs113
    khs113 Member Posts: 15
    edited January 2012

    Hi Everyone---Thanks to all who have been posting their follow up schedules. I feel alot more reassured that this is the normal protocol. When I first was diagnosed with TN some of the reading suggested that we would have more frequent exams,etc because of the Grade. I'm also starting to appreciate the fact that I don't have visit the hospital for another six months.

    I have to say that I had a good experience all round with my hospital I'm lucky to live in a town with two great hospitals. The university hospital is known for treating the out of the ordinary situations. My husband was treated there for a particular kind of throat cancer this past year and he often had long waits and impersonal staff. I went to the other hospital that most breast cancer patients go to and never had to wait and the staff, on the whole, was very attentive. I only had one rad tech who initially was very aloof, but I killed her with kindness and after about two weeks she cracked. In fact, I finished before Thanksgiving and bought the staff mini cupcakes and she was the most appreciative.

    I love the t-shirt gown idea. Wish I had known about it for the rad treatments. I usually got the biggest gown I could find and the ones with velcro closures. Never did figure out the ties.

    Kymn-I know I'm new to this strand but I'm so happy for your 1st anniversary. My doc said to start counting the day of diagosis and I'm counting the days. Your news brought a smile to my face. My 65th birthday is tomorrow and I'm just glad to still be here. I'll try to never complain about how old I am ever again.

  • TifJ
    TifJ Member Posts: 804
    edited January 2012

    Happy Birthday KHS!!!!

  • MIchelle67
    MIchelle67 Member Posts: 42
    edited January 2012

    Hi all,

    I dropped off the planet back last winter/spring while I was doing chemo. Then did the daily rads. Then took a couple of months to catch my breath.

    I'm really out of the loop and have been away so long that I guess I'll never catch up but I never stopped thinking about my bc.org pals, so I wanted to jump back in to say 'hi' and try to reconnect.

    I hope everyone is good and had nice holidays. I'm hoping 2012 will be a great year for us all!

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited January 2012

    Hi Michelle,

    What part of PA are you from?  I'm originally from the area. 

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited January 2012

    Hello to all....Suze hoping you are home soon.

    I have been busy settling into our new house and doing the long commute.

    My sister is taking me ot HAwaii Saturday so I am looking forward to the beauty and change.

    HAppy Birthday KHS

    And I hope everyone has a wonderful day.

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2012

    HeidiToo- great explanation, thanks, except I don't understand the P53 marker.  How can I get to check my levels?  I have never seen that term in any of my reports.

    Sugar & Luah - Love to hear that ER negative tumors are "front loaded" - light at the end of the tunnel!  You know I always mix up the terms "recurs" and "mets".  About ER negative tumors - do they recur or mets sooner than our counterparts?  Isn't there a difference?  Recur would be either in the same area or the other side and mets could be anywhere, including distant.

  • KSteve
    KSteve Member Posts: 190
    edited January 2012

    Paintingmywaythru - So glad it's finally time for your Hawaii trip!  I'll be living vicariously through you.  How's your hair doing?  Please tell me that you're going topless to Hawaii (LOL - That sounds funny, doesn't it??).  I hope you have the time of your life!!

    Kathy

  • ksmatthews
    ksmatthews Member Posts: 743
    edited January 2012

    khs happy birthday!

  • christina1961
    christina1961 Member Posts: 450
    edited January 2012

    Tina,

    I'm so sorry you had the awful problem with the port placement!  I hope you are feeling better soon.

    Christina

  • Hope60
    Hope60 Member Posts: 150
    edited January 2012

     Tina,  I hope you're feeling better soon!

  • Luah
    Luah Member Posts: 626
    edited January 2012

    Lovely: I've always thought of recurrence as the same cancer showing up anywhere - locally (same breast), regionally (nodes or other breast) or distantly (which is mets). A new primary could occur too. From what I've researched, TN tends to recur earlier than ER+, distant recurrence is higher than for ER+, and more likely in soft tissue (not bone) than ER+. But even as some of our wonderful sisters are gracefully managing their way through such scenarios, most TNs thankfully don't recur.   

    Painting: your sister sounds awesome! Laughing 

  • Lovelyface
    Lovelyface Member Posts: 563
    edited January 2012

    Luah, thanks so much for the explanation, it is so good to know.  Interesting to note that you mentioned "nodes" separately from other breast.  I hadn't separated those in my mind. The part which is disturbing is that distant recurrence is higher than for ER+.   And I had no idea that it is more likely to recur in soft tissue than the bone which at least for this weekend makes me worry just a little less.  I have had persistent pain in my neck/head area, was thinking what if it has come back in the bones.

    I love the part "most TNs thankfully don't recur".  Thanks again.

  • ksmatthews
    ksmatthews Member Posts: 743
    edited January 2012

    I really need you all to say alot of prayers for my friend Janet. They just found out Wed. that she has lung and liver cancer and they have only gave her days. I went to visit her today and she was unresponsive :( this breaks my heart that Cancer is going to win another battle..

  • Babs37
    Babs37 Member Posts: 320
    edited January 2012

    My doctor told me that if I were to have a lump in the other breast, it would be a new primary, not a reccurence, even if triple neg....

  • Babs37
    Babs37 Member Posts: 320
    edited January 2012
    So sorry ks.......Frown
  • tracie23
    tracie23 Member Posts: 214
    edited January 2012

    praying

  • Titan
    Titan Member Posts: 1,313
    edited January 2012

    Hi Michelle!  Glad you stopped in...this thread is here when you need it..glad you stopped by...it's great hearing from people that have been out of here for awhile...that's a good thing!

    saw the Optometrist today,,I am horribly nearsighted..but no need for the bifocals..yet..OMG...I don't want them...it's amazing..with BC..sometimes its hard to remember to see the dentist and eye doctor and the ob gyn...its like everything is about my boobs.

  • Suze35
    Suze35 Member Posts: 559
    edited January 2012

    Got home today, still feeling awful but at least I'm home. Found out a lung tap really isn't all that bad, at least mine wasn't.



    I'll catch up tomorrow hopefully. Love you all!



    Susan

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2012

    Welcome home, Suze!

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited January 2012

    As of today I have officially finished 20 months of treatment including my last rad.  I am so very done!!!

  • karbarn
    karbarn Member Posts: 8
    edited January 2012

    @Lovelyface and @Mccrimmon - NED is a term when examinations and tests can find no cancer in a patient who has been treated for cancer of any stage. One does not have to have been diagnosed with mets to be considered NED. Essentially it is remission. If cancer is no longer detected, we are considered NED.

  • Huskerkkc
    Huskerkkc Member Posts: 471
    edited January 2012

    Glad you are home Suze and congrats Luv. Great news for both of you!!

  • inmate4232010
    inmate4232010 Member Posts: 288
    edited January 2012

    LuvRVing.....yeah to being done!  I too finished my last chemo today after 20 months.  Ain't it great!

    Suze....awwww home.  enjoy your own bed tonight!

    Still haven't heard from Bak.  I she still in the hospital?

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