anyone starting on similar journey ?

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i have been diagnosed with triple negative breast cancer and have my second oncology appointment on Wednesday, hoping i will be given a date to start treatment then, just reaching out for any one else's story or starting treatment soon, feeling really negative that its triple negative, ive been told its extensive and aggressive which makes me feel completely doomed, just looking for a bit more of a positive outlook, any help or advice would be greatly received 

thanks xx

  • Hi, I've also just been diagnosed with Triple Negative and have my second appointment with my consultant on the 12th of June. I'm trying to keep a positive mindset and distracting myself with work and socialising but it is a very difficult wait. Do you have a good support network around you? 

    X

  • Hi there,

    I was diagnosed with TNBC just before Christmas - and I know that scary place of diagnosis. Everything was slow moving because of the christmas/new year period and the wait for all the information was the worst .

    Then first thing i want to say to you is that you are not completely doomed.

    Treatment for TNBC is now so much more progressive. Mine has had a complete response to chemotherapy half way through treatment. Have they told you the size of the lump or whether there is lymph node involvement ? Regardless, they will devise a treatment plan bespoke to your needs and monitor you really closely.

    The second thing I want to any to you is stay away from google. The information is outdated and you will scare yourself with things that probably aren't even relevant to your particular situation.

    Your care team are the best people to talk to - the breast care nurses will be really helpful. Always jot everything down so you can revisit your conversations.

    The third and final thing I want to say to you for now is you can do this. You will find strength you didn’t know you had and you will learn things about yourself you didn’t know existed.

    I am five months into treatment and have surgery to come. The treatment has largely been ok for me. I have cold capped and kept my hair, eat a really good diet, get outside every day for a walk in the woods, talk and think about things other than cancer, build in treats for myself, practise yoga (for mind and body), allow myself to feel what  I feel but not wallow, take pleasure in the simplest of things (morning coffee in the garden for example). It’s all made a difference.

    Cancer will not destroy my spirit - it might have a good go at times, and it might succeed in chipping at the edges but I know a focussed and graceful mind contributes hugely towards how this journey is trodden.

    Don’t get me wrong, my first month after diagnosis i was in bits, but I turned it around and you can too.

    Sending love

    Jan x x

  • I was diagnosed with TNBC in March 2022. I am now 6 months after finishing chemotherapy. There is an end and a new beginning.

    All what Jan says is so true.

    Take one day at a time and use all the support on offer. I found Macmillan and Breast Cancer Care very helpful.

    You will figure it out but it takes time.  I still am working out. With good and bad days.

    Take care

    Ricki

    ricki
  • Try not to feel doomed, there are more treatments available now than even a year ago, and more are in clinical trial. My journey hasn’t been straightforward but I do retain hope. Please have a read of my blog. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

  • Hi, i was diagnosed a year ago, with lymph node involvement.  Have done IV chemo, op, radio and now on xeloda for mop up. I was a mess at first, but you do get used to it and having a treatment plan helps. I got counselling, spoke to others with tbnc and did on-line classes in once yoga/art therapy/sound therapy. Never did any of these before (and not sure I excelled at any!), but they kept me busy chatting to others and kept my mind off things. Also met friends for coffee once a week which kept me going. Family great too.  Best of luck on your journey. X

  • i hope you all get this reply and sorry for it being late, i couldn't understand why i wasn't  getting any replies and then realised that for whatever reason my notifications were not set on.

    thank you for all of your messages.

    i have struggled since my diagnosis not sleeping or eating, anxiety through the roof, i am i little better now, i didn't really realise what they meant when they said 'we just need to check for your receptors to see if they are - or+ and then the penny dropped and i realised what triple negative was and that was my diagnosis, hit google and terrified myself so much, i am normally positive however ive had a horrendous year already and this just hit me so hard when i was already so down. since my post ive had a phone call to say im staring 8 rounds of chemo this Wednesday , im so scared, 8 rounds seems such a lot and im panicking about side affects, am i going to be able to do it, the fact that its 8 rounds to me means its bad, they have told me it is extensive in the breast and its in lymph nodes, will require full mastectomy, ive got nurse ringing me today and picc line being fitted tomorrow, i am just so scared mum to two older children one whom i help so much as he has crohns, adhd and asd, just recently became a nanna and all i can think of is that im not going to me here in six months or so                                                                                                                                                                                                                                                                                                                    thank you again all xx 

  • sorry to hear you are going through the same, i have done a full reply at the end of this thread, yes i have a brilliant support network, my problem is sleeping if i could sleep properly id feel so much stronger but i constantly wake early hours with the most awful anxiety and doomed thoughts

    i am starting chemo on wednesday 

    hope all goes well for you, please keep in touch if youd find it helpful

    xx

  • hi yes i do a bit of yoga at home following utube and i do try to get out for a walk every day

    thank you for your reply 

    i am now starting 8 rounds of chemo on wednesday picc line going in tomorrow

    xx

  • thankyou so much for this jan, so inspirational and has given me a lift, i too try to get out for walks and do a bit of yoga but feel totally useless at it and not sure its helping.

    i eat very healthy too i thought if there is one thing i can control in all of this its my diet to give me the best chance of recovery, i just wish i could sleep its draining me 

    thank you again

    xx

  • thank you i will have a look at it 

    xx