Is tnbc always terminal?

I feel quite hopeless today, everywhere I turn tnbc seems to come for you eventually even if you are at stage 1 nodes clear. Due to its aggressive nature and high recurrence level, have I any hope for the future long term?  

  • Hello Optician

    I'm sorry you're feeling like this and I really get it. I do. We all have moments - sometimes long ones - feeling hopeless, but we have to pick ourselves up and push forward and that is hard. There are people on here who will tell you they have a future and are embracing that future with both hands. I hope they see your post and come and tell you. I'm traveling my journey; have yet to finish chemo and then have surgery. So I'm with you in yours as are many.

    If no one sees your post, it is quiet on here, re post on the general breast cancer group. I know someone will be beside you straight away. They are a great, inspiring lot.

    Take care and keep picking yourself up. I think of the 1970's toy Weeble - Weebles wobble but they don't fall down.Slight smile

    Floss b
  • Hello

    I have a friend who had tnb 4 years ago. She had a 35mm tumour and 3 lymph nodes but she is ok and living a full life. She doesnt come on Macmillan as doesn't like cancer chat rooms but I just want you to know she is great 

    Julie x

    Charlieandlola
  • Hi

    I was diagnosed October 2013 Invasive ductal TNBC and now living my ‘new normal’ life to the full. There is light at the end of the tunnel, and it’s common to feel the way you do at times but stick with this site as it’s a wealth of information and support. All the best in your journey. You can do this :)

  • Hello, 

    This was how I felt before diagnosis too - I knew I didn't want Triple Neg because google says you die. When the doctor said TNBC I was so cross it had to be that one. 

    But then actually, if we make it through 5 years we have a really good outlook. If we make it through 3 years it a reasonable outlook. 

    So how I decided to deal with the hopelessness is to give myself an expiry date so to speak, and pick a point in my life that I simply had to be here for and if I did that then anything else is a bonus. For me, it is my daughter's 21st I have to be here for. If I had had no treatment I might not have seen her 18th this year. So I would like to see her 21st, by which time I will have seen my 50th birthday and my husband and I will have celebrated our 25th wedding anniversary. So I am aiming for September 2023 which will be 3 years after my treatment ends. If I make it that far, then who is to say I won't make it further, but if I don't, then those are the things I wanted to see and are doable. 

    And to get to there, I had a mastectomy instead of a lumpectomy as mine hit at lockdown so they weren't sure I would get surgery and chemo wasn't considered the safer option then. I had a grade 3 4cm lump removed with clear margins removed and pathology found 1/5 lymph nodes and vascular involvement. That meant I had to have chemo, so I have had 8 paclitaxel and am waiting to see if I get number 9 as we are not getting to 12 due to side effects (peripheral neuropathy) and then I will have 4 EC over 8 weeks and then I will have my daughter's 18th either before or after 15 sessions of radiotherapy. 

    You will meet many women on these forums, some will be alive many years later, and some will have a recurrence and some you will see have died. No one tells you how rubbish cancer is until it hits you and I personally think TNBC is it's own little tornado. But my advice to you is to do whatever you can to keep it at bay, find the day you need to live for and plan on how you will get there. And in among all that - live for today xxx

    G x
  • Hello Gistaline,

    Thank you for being so honest. Mine is a hurricane, but like a tornado it has an eye. I'm trying to stay in the calm of the eye through my chemo, having recently found it, and hopefully the eye will expand and burn itself out. Then I will tackle the surgery. Not sure until after my mri what that will entail, but my gut instinct is to have the mastectomy and remove as much as possible. When that is done and radiotherapy I will set my goals like you. 

    Take care xx

    Floss b
  • Hi to another TNBC lady 

    I didn't know anything about different types of breast cancer before my diagnosis but with TNBC it does seem very doom and gloom.  I don't know what it feels like with other types but I certainly feel quite pessimistic that I will live a full life span.  

    I recently heard a friend of a friend received her 5 year all clear with TNBC, so there are good news stories out there I'm sure.

    Lots of love 

    Z

  • Good Morning All,

    I have TNBC, had 2 surgeries in Feb and March finished 4 cycles of T & C , radiotherapy at the end of July, then who knows.

    i can’t set definitive goals and I was a total control freak.

    My life will never be the same, I will never be the person I was, but the new me is learning to live for the moment, to take a day at a time, to be kind to myself and try to be kinder to others, our families and friends people who love us.

    Life is a journey there will be bumps and wrong turns but I’m learning to enjoy the scenery on the way.

    good luck to all, stay safe

    Mimi121

    Mimi121
  • Hi Mimi 

    Glad to hear you’re doing well! Good luck with the radiotherapy, I didn’t get that because of the stroke but I started on the Zolendronic acid infusions at the end of June and felt a little unwell for about a week afterwards but I’m on the mend again. I’m with you on taking each day as it comes and seeing the good around us. 

    onwards and upwards

    best wishes

    flora21

  • Hi Mimi

    I had a mastectomy in May 2016 when I was 66 followed by 4 cycles of TC chemo then 15 days of radiotherapy similar to you. I am still all clear and getting on with enjoying my life. We have been on holiday to Australia and New Zealand and touring the UK in our motorhome. It took me 6 months to get my energy and my hair back and to stop feeling angry at having this cancer when I have never been ill in my life, no family history of cancer and don’t drink and smoke.  Sending best wishes for a full recovery but please do look after yourself and don’t rush your recovery. Next year you will look back and realise you are over it and back to enjoying life.

    Elle

  • Hi Elle,

    Thank you for your post,

    it’s great to hear that you are doing so well, I’m going to take your advice and recover at my own pace, I sure that when the time is right I’ll get some of the old me back, but maybe it will be for the best if the newer Barbara stays around, I certainly didn’t appreciate what I had, I was always busy out work before everything else, with hindsight what for.

    i hope that I will recover fully and beat the odds, and I will be able to enjoy myself, one thing about having BC at the moment is with  covid 19 I am content to poodle about at home, but as you say time is a great healer, and I’m sure that there are still good times ahead of me, I hope so anyway.

    stay safe and take care

    Mimi121

    Mimi121