Triple Negative

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  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Kellee Big hug  :)
  • primek
    primek Member Posts: 5,392 ✭
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    @SoldierCrab can you share your wisdom. 
  • SoldierCrab
    SoldierCrab Member Posts: 3,446 ✭
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    hi Kellee, 
    I am nearly 6 years out from diagnosis of TNBC and I had bilateral mastectomy and lymph node involvement.
     I had 9mths of chemo and then 6 weeks of radiation and I am CANCER FREE  with no evidence of disease. 
    Take it one step at a time ...... we eat an elephant one bite at at time  look at this the same .... 

    here are some links for you 

    Below are a couple of links to help you find your
    way around the forum and also how to find a breast care nurse and how to order
    a MY journey Kit if you haven't got one yet. 



    It can be a whirlwind when we first get a
    diagnosed.... Breathe and take it one step at a time. 



    Navigating the online community
    formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other
    resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further
    information or support please call 1800 500 258. BCNA’s helpline will now be open from
    9am-6pm Monday to Thursday and 9am to 5pm Fridays.  


    Happy to answer any questions if I can 

    Soldiercrab

  • Kellee
    Kellee Member Posts: 73 ✭
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    Thank you @SoldierCrab this information is greatly appreciate xxx
  • Kellee
    Kellee Member Posts: 73 ✭
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    Hi @SoldierCrab I was just looking back at my triple negative post and noticed you had a TNBC. I visited the radiologist today to prepare me for radiation therapy, I don’t see the chemo oncologist for another 2 weeks. I must say I’m feeling very emotional as I learn more about triple negative. I think, at last, my diagnosis is starting to sink in. I’m still experiencing a lot of pain from surgery (4 weeks ago) and I’m booked to have another ultrasound in 2 days to make sure there’s nothing going on inside. The radiologist wasn’t happy with my surgery scar as it is puckered and pulling my nipple. She thinks I might need surgery to correct it before radiation. She’s going to discuss it with my surgeon. I don’t have radiation until after chemo, she’s worried about surgery before chemo and I’m worried about surgery after chemo. She concerned that if I’m still in pain the radiation will amplify it.
    My cancer was only stage 1 but the cancer itself was grade 3. She loaded me with figures and odds on it returning, reassuring me of course, I’m not sure if reassurance works on the brain of a cancer patient cause now I’m more concerned. She said if it returned or if the chemo fails the next step will be a mastectomy. All this knowledge is making my brain sink in that this is very serious. Being in pain for 4 weeks isn’t helping. Did you have any reoccurrence after your first diagnosis.
    its hard because you want to know everything than wish you didn’t know. Every 5 minutes the cancer test breakthrough keeps coming on the tv. My bloods starting to boil each time I hear it. 
    I know no two cancer or experiences are the same but hearing from someone with TNBC would be more reassuring (I hope) then the doom and gloom on Google for triple negative :( xxx
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @onemargie
  • Kellee
    Kellee Member Posts: 73 ✭
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    Thank you @kmakm I’ve been talking to @onemargie via message. Such a wonderful woman. Silly me didn’t realise she was triple negative, thank you for bringing it to my attention xx
  • Sister
    Sister Member Posts: 4,960 ✭
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    Our Margie IS a wonderful, caring woman!
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Kellee She's been chatting to me as well. Dead set legend.
  • onemargie
    onemargie Member Posts: 1,264 ✭
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    @Sister @kmakm @Kellee awww you guys are amazing!! cheques in the mail for all of you!! i LOVE YOU GUYS TOO!! trust me its a big DITTO from me too. 

    Hey @Kellee

    I thought I told you about me lol probs had a massive brain fart!! 

    I was diagnosed may 2016 aged 43 no family history stage 2a grade 3 (3cm tumor) L boob, no lymph nodes involved and all  scans all clear, had a mastectomy so I only had to have chemo and no rads, had 8 rounds of chemo 4 AC and 4 paclitaxol 2 weeks apart over 16 weeks, (dose dense) then took the R boob off as a prophylaxis as my guts told me too, await recon..... STILL!! (story for another day). I think we should chat, feel free to text me first as im working and we can work out a time for a chat. its going to ok lovely..  @SoldierCrab is absolutely right ... as always lol  big hug. ive PM you my mobile in my previous message to you.  Margie xxxx 
  • RachaelBB
    RachaelBB Member Posts: 9 ✭
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    Hi @Kellee
    I was diagnosed with Stage 1, Grade 3 TNBC last April. Had surgery first then 4 cycles AC (3 weekly) and then 12 cycles Taxol + Carbo (weekly). Then 5 weeks daily radiation. I've read a tonne on TNBC and unfortunately chemo is essential, but it works well. I worked all the way through my treatment with some time off esp during the AC. (eg. One week off, two weeks on during AC). With taxol, I would have it on a Friday or Saturday. A lot of the side effects for the AC can be controlled through drugs your doc will give you. Also, keep yourself hydrated. Your hair will fall out. I bought a wig, but then it seemed like too much hassle, so I work head scarves : http://www.buffwear.com/ They arrive pretty quickly if you order online. One other tip is to wear the frozen gloves and socks during taxol. It's a bit of a pain, but studies show they work to prevent the nerve damage. You will get through it and come out the other end x
  • SoldierCrab
    SoldierCrab Member Posts: 3,446 ✭
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    hi Kellee sorry I have been really busy at work and catching up on BCNA stuff today....
    I am 6 years out from diagnosis on 6th September. Cancer free and reclaiming my life 
  • kmakm
    kmakm Member Posts: 7,974 ✭
    edited August 2018
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    @onemargie  :*
  • onemargie
    onemargie Member Posts: 1,264 ✭
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    @Kellee do you want all my cool bandanas? They are all really bright and colourful and have been used by me then I sent them to Sheryn in Newcastle then they’ve been used by @Salpal in Melbourne and she’d be happy to post them on to you. Rest assured we are all here for you. Xxx

  • Kellee
    Kellee Member Posts: 73 ✭
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    Thank you everyone @kmakm @Sister  @RachaelBB @SoldierCrab @onemargie you are all awesome xx
    I had an ultrasound yesterday to see if there were any issues other than what’s expected created my pain, my ducts are all clear but there is still fluid in various parts of my boob. I haven’t got any results yet but as far as the ultrasound went everything looks as expected. So that leaves either nerve damage (also expected) or the way I was stitched after surgery, which is puckered and pulling my nipple towards my arm. The surgeon has asked to see me again after my chemo appointment if things don’t change.
    i must say I had a mini heart attack when I seen a small round mass on the screen. Apparently it’s a cist. The nurse was really lovely and low and behold a breast cancer surviver x3. We had a good laugh about baldness and the reaction of others. She put me in a good frame of mind ❤️
    i have also learnt, as I am not menopausal, and being 51, There’s a 60% chance that chemo might trigger menopause, good grief, is there anything else, yay me. What’s the bet I don’t fall into the lower percentage this time

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