Calling all TNs

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

    cc4npg:  Sorry you had to join us here, but you will find loads of support.  The early days following a BC diagnosis are absolutely the worst -- and we have all second-guessed the next steps that are put before us. Your surgery date is just over a month from diagnosis -- I think you will find that to be a very common interval, plus yours is grade 2 so not as aggressive as most trip negs.  Take a deep breath, you will be okay!

    What do your doctors say about uni versus bi?  In the end it's your decision, but ask lots of questions and make sure you are comfortable with the path forward.

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

    OMG:  Sorry, have the flu, but Lynne YAHOOOOOOOEEEE!!!!!!  You got it going on I am so happy for you!!!

    MICHELE:  Stop working and go back to bed now dr. mary's orders stat!

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  • MonikaV
    MonikaV Member Posts: 201
    edited September 2010
    Lynne: So happy with the great news!!!! Smile
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    Lynne- wow, what an incredible relief. You must feel SO much better now.
    58FC8998-5F98-67A3-58AE-338395DBB2B1
    1.03.01
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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited September 2010

    Wonderful news Lynne!!

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

    cc4npg...October 7th isn't really that far away...September is flying by!  Just hoping that your doctors know how aggressive TN is and will keep moving things along for you...I found my lump in Jan..had surgery on March 20, 2009..so I went 8 weeks..my tumor was 1.8 cm.  It was my fault..not my doctors..I was hoping that it would go away but it didn't!  I keep thinking that if I would have got on it sooner it may have been smaller but can't change things now. ah well..still would have had to had chemo/rads anyway...

    And Lynne that is the most awesome news!  I'm sooo happy for you!  Ok..now go ahead and get that life back but be sure to check in on here now and then! 

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

    One year out and counting... .

    (Really glad to have you ladies around who understand)

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  • retrievermom
    retrievermom Member Posts: 522
    edited February 2011
    Lynne3:  Wonderful news!  Very happy to hear!
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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited September 2010

    Congratulations Luah...that's a great milestone.

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  • csheley
    csheley Member Posts: 6
    edited September 2010

    cc4npg - Uni or bi-lateral is clearly a personal decision that you need to be certain about..  Do your research and ask lots of questions - surgeon, oncologist, plastic surgeon, chemo, radiation, etc.  It's actually good to have a couple weeks to let this all settle in before you board the cancer/treatment train.  The answer will come - do what is best for you!

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  • riley702
    riley702 Member Posts: 1,600
    edited September 2010

    Congrats to the ladies with good news, and cc4npg, it is your choice on which surgery you're more comfortable with. Ask questions, do your research, and then go with your gut!

    On an unimportant note, how do I edit my signature to add my surgery date or add my name? When I hit edit, I just get the page with questions and no space to add anything. So I added my node info, but can't seem to add anything else. Help?

    Also, my incision itches like crazy, but it's still covered with steri strips, so I can't even put anti-itch lotion on it. Would orally taking a Benadryl help?

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  • kittycat
    kittycat Member Posts: 2,144
    edited September 2010

    Jw - I hope everything is okay with your lump.  Hopefully it's just scar tissue.  We are keeping our fingers crossed.  The power port makes chemo so much easier.  I got it in before chemo. 

    aprilh - I also went on dose dense AC/T.  The AC wasn't easy, but it is DOABLE!!!  I ended up being put on 12 weekly Taxol treatments because my counts dropped.  I hated the taste of a lot of things on AC, including water.  I found some drinks that were flavored - Gatorade G2, Sobe Lean, Sobe flavored waters, various juices and recently found some local lemonade at Trader Joe's.  Good luck on chemo!!! You can do it!! :)

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  • Meece
    Meece Member Posts: 19,483
    edited September 2010
    Riley, go to your home, then click on edit my profile on the left.  Go all the way down tot he bottom and there is an "edit my signature" area.  That should do it.
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  • PauldingMom
    PauldingMom Member Posts: 927
    edited September 2010

    Great News Lynne!!! Thrilled to hear>

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  • cc4npg
    cc4npg Member Posts: 764
    edited September 2010

    Someone asked if I'd talked to my doc about uni vs. dbl mastectomy.  I actually have not done that yet, and was just talking about it today.  I need to bounce this off of him as well as the plastic surgeon.  I honestly don't even know that my insurance (medicaid, state funded for those without insurance) would pay for an elective mastectomy.  I spoke to a lady last night who thought cancer in one breast might jump to the other if only one was taken.  I've researched many things, but haven't done that yet.  If anyone has any links to studies done unilateral vs. bilateral, please post.  Should I meet with the oncologist before surgery?  My doc hasn't even mentioned him yet.

    I'm currently trying to learn more about what to and not to eat.  I've started 2000 iu vit D3 now, and taking biotin (trying to work this in prior to chemo to help with nails), and omega 3, and a multivitamin.  Also trying to eat lots of veggies/fruits, and cutting back on a lot of things I've read not to eat (sugars, meats, milk).  Any suggestions are appreciated.  I've never been a good eater..

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited September 2010

    Thank you everyone, I am still on cloud 9 this morning, it was so nice to make "happy" phone calls to family/friends. Not accustomed to that.

    Meece, thanks for giving instructions on how to display info under your signature, I always wondered how to do that as well.

    Titan, While I intend to really start living again, I am not going anywhere, I have learned too much especially over the last two years that might in some small way be helpful to someone else. If for no other reason to show that you can have 4 primary cancer diagnosis involving 3 different types of cancer and still be around to talk about it!

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  • Meece
    Meece Member Posts: 19,483
    edited September 2010

    Just left myonc's office.  The areas I had re-scanned are stable (and in doctor-speak, that's good).  Must go in for follow-up in March, with my mammo in Feb, and rescan follow-ups in August.  My onc was not scheduled to be there so I had about a 35-40 minute talk with NP.  As the nurse was drawing blood for my labs, my onc came in, just before she had a meeting.  We talked for a couple of minutes, and she did a short little exam.  I feel very lucky to have them.  Got lot's of questions answered and topics discussed.

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  • csheley
    csheley Member Posts: 6
    edited September 2010

    cc4npg -

    You are right in that some insurances will not cover bi-lateral if not warranted or high risk. My doc recommended lumpectomy for .7 cm tumor but I pushed for bi-lateral due to risk and not wanting to walk this road again. I figured surgery and that's it...on with life! 

    Not so...7 years later with three reoccurances, I have never regretted that original decision.  But again, it is truly a personal decision and one that you have to live with. From what I have read, if you do decide on reconstruction, it might be best to wait until after radiation - if that is part of the treatment plan. Problem is that sometimes they cannot predict treatment until after surgery.

    Carolyn

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited September 2010

    Great news Meece!  Good doctors are a blessing. 

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

    Meece:  Great news!!!  Good doctors are so hard to find!

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  • Meece
    Meece Member Posts: 19,483
    edited September 2010

    The NP said something, though, that somewhat bothered me.  She said now that I am seven years out with NED, I can consider myself back in the pool for 1 in 8 women developing cancer.  I thought that was an off remark.  I guess I never considered myself out of the pool, but if I was, I wanted to stay out.  Maybe she just meant that my chances have been higher up to this point? 

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

    Perhaps she was making a distinction between TN and ER+ cancers? Perhaps she feels your likelihood of TN recurrence is down by statistical averages but, you still remain a 1 in 8 for ER/PR+?

    Either way it still sucks and, though medically possible to still be at risk, seemed a bit insensitive from a patient's viewpoint. I would have been bothered also.

    This doom and gloom, never out of the woods sh*t gets tiring.

    BYW- seems this alien code after my posts may be a problem with my browser (Firefox). I didn't get it when I used Safari for the Tom Brady pics. I hope the techies figure it out; they're working on it.

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  • Claire82
    Claire82 Member Posts: 684
    edited September 2010

    heidi - it makes you unique lol

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  • jlynnbain1031
    jlynnbain1031 Member Posts: 57
    edited September 2010

    hi all ! i am also triple negative and you can find me over on the IDC and so scared boards. i just finished number 2 AC. just wondered if any of you got a migraine the same day as chemo. i had one the first day of first treatment and on the 1st day of second treatment. it was so bad i litterally threw up. my doc is talking to every pharmicist she can to prevent it from happening again. thanks in advance and hugs and prayers to all of you. the side effects can be awful.

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Hi! jlynnbain10,

    I am now after 5 months done with AC+T chemo.   Misery.   You have a sinus infection?   I had a sinus infection caused by chemo the whole 5 months, and took antibiotics for 44 days, which were no match for chemo.   So many side effects.   I still have sores on my butt.   I hope you get help for migraines.

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

    Meece, I think she may have been referring to the BC risk in the general female population  i.e. you are not at additional risk anymore because of your past diagnosis - you're like someone who never had it. I long to be in that category! 

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  • riley702
    riley702 Member Posts: 1,600
    edited September 2010

    Thanks, Meece!

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

    Luah: I agree with you, I just think it;s a lousy way to look at it!  1 in 8 is too high for anyone!

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  • JenC
    JenC Member Posts: 382
    edited September 2010

    Well, went for treatment yesterday and my onc told me no chemo today due to the spreading neuropathy.  He is gonna play it by ear week by week from here on out and see if I can have treatment next week and if so they will drop the dose significantly and possibly not do the the full 12 or put it off another week depending if it gets worse or not.  I just want this to be over.  One thing after another.  I cant feel my feet at all at this point and my hands are getting numb.  Should have been done with everything including radiation 2 weeks before christmas now who knows depending on how things go.  I was so depressed i crying for two hours straight.  Not sure what that means with regard to TN but my onc seems to think that it is "no big deal with the minute increace in percentage of recurrance that may happen if treatment is not completed"  I guess I just dont get it either.  THey push so hard for all the chemo, radiation, etc, then they say stuff like that.  I am at a loss.  Thanks for listening.

    Jen

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  • starling
    starling Member Posts: 76
    edited September 2010

    Oh Jen, I can so relate to how you are feeling! These conflicting things we read and hear are so discouraging when we are trying to hard to be brave and get through all the treatment they have so carefully laid out for us. This morning I am going for a blood test to make sure my counts are right s I can take my next chemo on Wed of next week. If my counts are down, they may postpone chemo, or give me a blood transfusion or who knows what. I give myself those damn Neupogen shots every night and they hurt and I hate them and my bones ache from them and if they aren't working I just dont know how I can stand it. My love and lots of HUGS to you. My treatment plan has me fiinishing up right around the same time as you do so we are battling this side by side, don;t lose faith, we WILL WIN!

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