Calling all TNs

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    Great news Lisa, very happy for you!

    To all the fine ladies here, hope the days are getting better for us all, SLV I was so glad to start my day with our group hug the other day. ((((HUGS))) to you all

  • sally9876
    sally9876 Member Posts: 27
    edited July 2014

    simplelife4- hi I'm just wondering how you're doing today in terms of your lumpectomy and wishing you all the best! 

  • simplelife4real
    simplelife4real Member Posts: 563
    edited July 2014

    Sally, I'm fine.  I found a lump right under my scar a few weeks ago.  The did a mammo and ultrasound on it and told me they thought it was fat necrosis.  They said I could have a biopsy on it if I wanted.  After thinking about it for a week or two, I decided I wanted to go ahead with the biopsy just to be on the safe side.  It's scheduled for Thursday and I'll probably know the results next Monday or Tuesday.  I'm a little nervous, but not much.  I tend to believe them that it's fat necrosis, but I also think TNCB is nothing to take lightly.

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited July 2014

    Simple, I'll say a prayer and will be thinking of you in the days ahead. I'm sure all will be fine. ((((HUGS))))

  • natL12
    natL12 Member Posts: 135
    edited July 2014

    Simple - keeping you in my thoughts. You're wise to get the biopsy to set your mind at rest. Nat

  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    I agree Simple, with getting the biopsy That way you can not worry.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2014

    Simple,  yep opt for the biopsy to put your mind at rest.  Here's hoping for fat necosis.  xxx

  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2014

    I agree with all of you.  Get the biopsy.  Fingers crossed for fat necrosis...

  • CanuckMom
    CanuckMom Member Posts: 173
    edited July 2014

    Simple...glad that they think it's nothing..sending positive thoughts for your biopsy.  I know it's still stressful for you. hugs.

  • Bunnygirl210
    Bunnygirl210 Member Posts: 2
    edited July 2014

    Has anyone had their cancer metastasize to spinal fluid? I am in that situation now and it seems quite rare.

  • JAN69
    JAN69 Member Posts: 947
    edited July 2014

    Oh BunnyGirl,  So very sorry to hear spinal fluid mets.  I've never heard of it so I have no suggestions.  Hopefully someone comes along soon with information.  Please take care and keep us updated.  Jan

  • simplelife4real
    simplelife4real Member Posts: 563
    edited July 2014

    BunnyGirl, I'm so sorry to hear this.  There is a triple negative stage IV thread that you might want to post the same question, or just start a new thread on the stage IV forum.  Hopefully, you will get a response.  Wishing you the best.  (((hugs))) Kay

  • jenjenl
    jenjenl Member Posts: 948
    edited July 2014

    simple...all will be well.  Happy you are doing biopsy.  I had the same thing happen a few months ago that was fast necrosis.  I didn't biopsy but it was removed during recon. Thinking of you. 

  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    Bunnygirl, like the others said, the spinal fluid mets are new to me too. What did your oncologist say regarding treatments? Try to stay postive, keep us informed. Thinking of you. 

  • natL12
    natL12 Member Posts: 135
    edited July 2014

    Thinking of you, Bunnygirl, and hope you will keep us posted. Sending (((hugs))) your way. Nat

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited July 2014

    anyone interested in reading Joan lundens blog the link is here. Dx with TNBC  and undergoing chemo now. I like her idea about the water intake and how to keep track of the amount and also her most recent post about her "breathing" meditation/reiki/stretching session

    http://blog.joanlunden.com/search?updated-min=2014...

    (I think you'll have to cut and paste the link. Not sure why you can't just click from here)

  • kathyrnn
    kathyrnn Member Posts: 393
    edited July 2014

    Hello Sisters,

    Forgive my absence but I'm almost never on the computer.  (Thank you Apple for destroying my phone's capabilities with your upgrade).

    I've scanned back to check back on everyone.  I'm sorry that another sister was lost.  (My condolences to FBB's family).  Other's back in treatment (hugs BAK).  And the best part, that most of you are doing well!!!

    You are all in my daily prayers.  I'm doing well.  Had a negative PET this month. (Very happy but not tap dancing.  It's only 6 mo. and my cancer raises it's ugly head at about a year.). My onc also chose my case to present at a breast conference because of my 99% AR results (I do love telling people that I actually have prostate cancer.) The info she got was discouraging.  First, my type of cancer is chemo resistant. (Nice to find out after two rounds of hell, lol.). Second, my best chance is to be placed on an anti-androgen prostate chemo (works similar to Tamoxifen for ER+ BC) but I can't get it because it's considered experimental!  GRRRRRR!

    Despite what I typed, I'm alive today and grateful.

    Hugs to all my sisters

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited July 2014

    Praying for you Kathyrnn! 

  • placid44
    placid44 Member Posts: 497
    edited July 2014

    Bunny,

    I have heard of someone who had mets to spine (not sure whether that's the same as spinal fluid) who did well with eribulin. Best wishes to you.

  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited July 2014

    Kathyrnn,

    I'm sorry to not be positive for you but I just feel like your situation is unfair!

    My dear friend had bc twice (over 10 years apart) then ended up with pancreatic cancer. She was not a candidate for most of the trials because she had already had breast cancer. Anyway, we all know how pancreatic cancer goes so she's having a tough time right now...

    I feel weird saying it, but thankfully yours is prostate cancer... it's still incredibly unfair and hit very close to home for me. Good luck and love!

  • CanuckMom
    CanuckMom Member Posts: 173
    edited July 2014

    Kathrynn,

    My drs ran some genome tests on my cancer and found it is also chemo resistant.  Not only that but I also have high AR receptors ( like yours also).  Do  you mind if I ask you if you finished the act tx or did you end up doing a different chemo?   Are you on an androgen blocker?  You can pm me if you'd like.

    Bunny, I  so sorry about your spinal fluid..I hope you find some positive answers.

    Hugs to all.

  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited July 2014

    My best friend since 1st grade's mom had been stage 4 for 5 years and fights every day. My good friend Naomi has had a tough battle with BC as well as pancreatic cancer. She is nearing the end of her time in my life. Her birthday is August 5th. I'm not even sure she will make it.

    One would think this would make me sad (and it does) but more importantly, it reminds me to live! Even if there were no such thing as cancer, I could leave this world at any moment. My friend Naomi taught me through the years that I don't need to live anyone's life but my own. I should always strive to meet and beat my own expectations, not those of others. I wrote a poem about the way I want to always live my life and have others remember me, no matter when my time comes. I am giving Naomi a copy as well because this was how she lived her whole life.

    With the loss of FBB, I thought it might be appropriate to share the poem here as well. I'm hoping it will remind us all to live our lives, and NOT in fear!

    image


    ...and it looks like you'll be reading it side-ways!!! LOL

  • adagio
    adagio Member Posts: 982
    edited August 2014

    radical - thanks for sharing the poem - it is so beautiful! You are an inspiration and I can learn from you to fully embrace and LIVE life!

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited August 2014

    radical, so beautiful. You will teach others with your beautiful words. You are a special person and your friend Naomi is lucky to have you and you are lucky to have each other

  • Allydp
    Allydp Member Posts: 520
    edited August 2014

    Radical, that is a beautiful and inspirational poem. As Lisa said, your friend Naomi is very lucky to have you in her life. 

  • lilyrose53
    lilyrose53 Member Posts: 216
    edited August 2014

    Radical - Such a beautiful and inspiring poem!  Your friend is fortunate to have you in her life.  FierceBlueBird would love this as well.

  • LLizz
    LLizz Member Posts: 70
    edited August 2014

    Hi, 

     I got my Dx today.  I am still waiting for my HER results, but my onc surgeon said that he expects that I have the "triple negative".  So, I'm doing some homework.  It's kind of freaking me out. 

    Just wanted to say hi.

  • lilyrose53
    lilyrose53 Member Posts: 216
    edited August 2014

    Welcome LLizz!  Sorry you find yourself here, but you will find lots of support here.  Try not to freak yourself out.  Make sure your dr explains your pathology report to you.  And get a copy to keep.  Let us know how you are doing.

    Hugs,  lilyrose

  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited August 2014

    LLizz,

    Welcome! Don't be too freaked! There are advantages to triple negative as well! You'd have a pretty clear-cut treatment regime and no worries about hormone replacement therapies!

    In the mean time, try to do your research here on bc.org. Between the forums for real life experience and the journal articles here, you'll find truth and support instead of a whole bunch of scary half information!

    Jen

  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2014

    LLiz, welcome!!!  You have found a wonderful place for information and support. 

    couple of pointers for you:

    Bring someone with you to appointments and have them take notes

    Get copies of ALL of your reports/results and keep everything in a binder/folder

    Do NOT do random searches on-line regarding Triple negative BC.  Stay on BCO or the Triple negative site.  Most of the things you read on-line about TN are outdated and inaccurate and will only scare the crap out of you.

    Always be your own advocate....You need to be comfortable and confident in your medical team.  Ask questions, get answers and be assertive when it comes to getting what you need/want  need from them.

    Come back heer often so we can help.

    I am a 5 year survivor and feeling GOOD!

    I am sure others will be along to offer support and answer any questions you may have.

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