TNBC

AvagomumAvagomum Member Posts: 7
edited March 12 in General discussion
I was diagnosed 12 months ago with TNBC. During treatment I always thought of my boob as a shitty titty and now having completed treatment I thought about recurrence. I asked my Oncologist the % of  chance of return. He said I'm high risk (Gulp). Im now trying to come to terms with 50/50 chance of recurrence. I'm quietly shitting myself while trying to remain positive. But shit, shit shit!!! 
I'm not crying but my eyes are leaking. 

Comments

  • AvagomumAvagomum Member Posts: 7
    Thank you for your words of wisdom K.   You have given me some really great coping strategies which are much appreciated .
    🤓❤️❤️❤️❤️
  • kmakmkmakm MelbourneMember Posts: 6,838
    Stay in touch here and let us know how you get on. @SoldierCrab is a TNBCer I think. I'm sure she's got some useful wisdom! K xox
  • arpiearpie Mid North Coast, NSWMember Posts: 2,509
    Sadly, we all have the 'recurrence' damocles sword hanging over our heads @Avagomum .. the trick is not to let it govern your life.  

    Get out there & just do what you love doing (for me it is fishing and playing ukulele) .... or even trying some new hobbies as well.   I run the local uke group & we regularly perform at 4 Old Age Nursing Homes & attend other groups, spreading the joy of music & uke, so it keeps me busy with 2 x practises every week as well as the performances  .... it is all good fun & very therapeutic - best of all - it keeps me BUSY!  ;)  

    take care xx

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,149
    hi Avagomum, 
    sorry you find yourself in this shit fest called TNBC 

    I am away from work so typing on my phone which I am not good at... so excuse any mistakes. 

    Have you got a good Breast Care Nurse ? it might be worth sitting with her and discussing in depth the reason why the Onco has said high risk .... all TNBC is higher risk of Recurrence as I understand it ... 
    but Saying that I am now 6.5yrs NED (no Evidence of Disease) 

    Ask any questions.... 
    If you wish there is an Australian group for TNBC on facebook. 
    https://www.facebook.com/groups/1166665270079659/   I am part of the admin of that group. Lots of ladies some like me with NED some with Mets some with recurrence but a great supportive group. 


    I am presently away on holidays so hence my use of phone... 
    Happy to answer any questions if I can. 

    Soldiercrab

  • AvagomumAvagomum Member Posts: 7
    Thanks @arpie
    Keeping busy seems to be the key to keeping the worry away. Your Uke performances sound like they are lots of fun for all involved.  
     I think I was so focused on being positive throughout my chemo treatment,  that I didn’t acknowledge that it might come back until after my treatment was finished and then I thought, “what’s stopping the cancer!”.  Then I thought “shit”,I’ve got cancer😳, then I thought to myself “self, you’ve had cancer!”.   The thought of it returning is ‘blah’.
    Youre right tho Arpie, music is very therapeutic, I’m thinking I’ll put on some music and do some gentle boogie with my vacuum cleaner, that  will tackle the cleaning and exercise at the same time. 

    Thank you for your support arpie 
    🤓❤️❤️❤️❤️
  • AvagomumAvagomum Member Posts: 7
    Thanks @SoldierCrab,
    I feel pretty weird at the moment, sort of in between wanting to know but not wanting to know. On Friday I managed to rustle up some courage to ask the Onc about my chance of recurrence, hence my “oh shit” mode. 
    I still haven’t had the courage to look at my cancer results yet.  12 months ago I was told 75 mm, grade 3, stage 3, with lymph node involvement and that’s all I needed to know, oh , and also how do we fix my “shitty titty”.  I’m not really ready to explore why I’m at high risk. It’s way too confronting for me and even tho I’ve completed my treatment, I think I still have my head stuck in the sand. 
    The TNBC Facebook group is great. 👌

    Thanks for  your support SoldierCrab
    Have a fantastic holiday 

    🤓❤️❤️❤️❤️
  • KelleeKellee NSWMember Posts: 61
    I finished Chemo for TNBC in January and radiation therapy 2 weeks ago. I too often think about re-occurrence. I try to put it at the back of my mind. My first post treatment mammogram and ultrasound is not until May. I’m sure as I get closer I’ll think about it more. I keep reminding myself I was only stage 1 (grade 3) with clear nodes. But then a little voice reminds me the first time was a surprise, what if it’s somewhere else? I guess it’s natural to worry, it’s all so new too. It doesn’t help that they’re are reminders of cancer everywhere. I’m lucky that I have people around me for positivity. Xxx
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 114
    I’m TNBC diagnosed October 2018.
    Had a a partial mastectomy and two lymph nodes removed, clear margins and lymph nodes, Grade 3 stage 1.
    Currently having Chemotherapy, still another 13 Infusions to go then 6 weeks of radiation.
    We just have to try and stay positive, and knowing that we will be monitored closely for a few years, so if there was a reoccurrence it will be acted on quickly.
    No one knows what the future brings in life wether we have had BC or not.
    Lets just live life as best we can
    Sending everyone cyber hugs xoxo
  • GalGal Member Posts: 27
    I am TNBC diagnosed August 2018. Had a lumpectomy in September 2018, clear margins and lymph nodes. My tumour was 2cm stage 1B grade 3, had 6 cycles of  TC chemo every 3 weeks then 30 rounds of Radiation.  I finished my radiation on the 17th of April 2019. I handled radiation really well better than I thought I would. I feel really good not to many side affects just numb feet and sore knees and elbow. I think that is from chemo. I try not to think of a reoccurrence but it creeps in when I least expect it. I feel a little lost at times after treatment has finished due to not going to hospital etc. feels a little strange. I guess for me I feel like yes I have had my operation and I will get better but it's not like that it was cancer not a back operation if you know what I mean. I hope I am making sense.Xxx
  • kmakmkmakm MelbourneMember Posts: 6,838
    Totally making sense. Many of us feel that way. Including me.

    There's a whole section here for this. Have a look:  https://onlinenetwork.bcna.org.au/categories/now-what-the-highs-and-lows-of-survivorship

    Big hug @Gal. I'm told it gets better. One day soon I hope. K xox
  • AvagomumAvagomum Member Posts: 7
    Makes perfect sense to me @Gal
    I think we are in such a routine while receiving treatment and then after treatment finishes we go, umm, what do I do now.
    Ive focused on staying in the moment, enjoying the little things.  I paint 🤔 ( let’s just call it abstract painting), I put paint on the paintbrush then whack it onto the paper. 
    I sew clothes for my grandkidlings , I sing ( even tho I can’t hit the correct note) in a group twice a month, it’s a fun thing to do.  Mindfulness has been fantastic. I guess I keep myself comfortably busy, enjoying what I do. The occasional ( oh shit ) blimp does surface and this group is wonderful and very supportive during those moments. 
    Sending big hugs your way @Gal ❤️
  • smokie08smokie08 AdelaideMember Posts: 141
    Hi @Avagomum and @Gal I am also TNBC I finished active treatment in Jan 18 and only see the breast surgeon now every 6 months  and have yearly mammogram n ultrasound  and  breast MRI  every year.  It is very scary sometimes when a new ache or pain arrives I feel like my GP thinks I am a hypercondrac as I always go and see him when something new pops up . I find keeping busy stops the reocurrence  thoughts coming in to my head but they are still there sometimes.  Take care 😀
Sign In or Register to comment.