TNBC Newbie

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Hi Everyone Raising hand

This is my first time ever writing on something like this so bare with me. I'm Laura, 35 years old. Diagnosed 28th April. TNBC Invasive Ductal Carcinoma, Grade 3. 2 nodes involved.

I first felt my lump back on 1st April, contacted Doc straight away and was referred to Breast clinic for Ultrasound. Went along to end up having the Ultra, then biopsy, mammo then to be told, most likely cancer. My whole world turned upside down, you will all know the feeling! The tumour was originally thought to be 33mm but turns out its more like 70mm in the widest area and 3x2mm at the auxiliary tail. I'm not sure if that means I have 2 tumours or if it's like a tadpole shape lol! Anyway, I was told I would need to do Chemo first so 4 rounds of EC then 4 rounds of Paclitaxol and Carboplatin. I've had 2 cycles of chemo so far and it's not been too bad. Well, I say that, it's not exactly been great. EXTREME fatigue, weird sense of taste, no appetite, sore joints and muscles etc. Thankfully I've not been sick but I put that down to the three different types of tablets I get to take.

Anyway, the reason for my post was to connect with ladies who are going through something similar. When I first was diagnosed, I trawled the internet and mad myself ill with all of the terrifying statistics that surround TNBC. I kind of found myself scared to come on to these forums but I'm glad I did. I have no experience of cancer, in any form, as no one I know has ever had it so it's all been a big whirlwind of information these past few months and to be honest, I think I'm still in shock! I am going to see if I can maybe see a psychiatrist as I'm finding my mood to be getting very low these days and that's making it hard to keep positive.

I have noticed a significant reduction in pain in my breast since starting chemo so I'm hoping this is a good sign, has anyone else had that?

  • Hi Lola thanks for sharing your story and I totally understand that you are feeling low. I suspect that the shock takes some time to process and I am with on that one.

    I also found my lump in early April, I'm 52 and was having a ball...dam thing!! I also did the same as you and looked online but quickly stopped as it was just sending me into a tailspin.

    I was worried about the different ways that TNBC is treated in different people but now see that each case is individual and I have to put my trust in the medical team and not over worry. I had a lumpectomy this week and lymph nodes removed. The lump grade was high but other than that, I am waiting for lymph biopsy results and then hopefully next week my consultant will call me and have a plan! The waiting is so awful.

    You take care and sending hugs xx

  • Hi Lola

    I was diagnosed with TNBC yesterday (12 July)and I have just read your story.I had expected a cancer diagnosis as my consultant prepared me for this on my first visit to the breast clinic but I hadn’t considered the possibility of TNBC.I am older than you (60) and had read it was more common in younger women.I have spent all night researching and throughly exhausted myself emotionally.I am so grateful to have this forum as I feel I don’t want to burden my family as they will all struggle too.My husband has been very quiet but very caring.I feel like he is tip toeing around me so as not to upset me more.l will be going for chemotherapy first like you and it’s good to hear that the pain has reduced after this as I am suffering with breast pain at the moment.It sounds like your chemotherapy is definitely having an effect.I hope the rest of your treatment runs smoothly,

  • Hi there. Not sure how I missed this post. I'm very much on the same path so it would be good to keep in touch. I'm on my third dose of EC this week then Carbo and pacli wotsit. 

    Emotionally I'm in a bad place. Trying to find ways to ease anxiety is a challenge and exhausting. I've a counsellor bit she isn't really helping. Need something with a bit more substance.

    Keep in touch

  • My last post was meant to be in reply to you bit I think all of of us are sounding similar.

    Would really like to keep in touch as I'm finding it difficult to talk to family

  • Hi

    Similar situation and diagnosis to you. 8.5cm tumour, scattered cancer and lymph node axilla action. 

    I'm onto 5/6 chemo treatments having had four doxcetacel Carboplatin treatments do far. 

    I am expecting surgery in November definitely single Mastectomy but am pushing for a double. Then more chemo and radiotherapy. 

    Hope all is going well with you. 

  • Can’t tell you how good it is to hear I’m not alone!
    When do they scan at your hospital?

  • Hi Himalaya, I think we all feel your emotional agony and the only consolation is that we are not alone and have support like this forum without any expectations. 

    I have had my first EC Chemo infusion, felt lousy for a week and amazingly popped out the other side and back to work this week. I know that I might not be able to sustain this but it's good to feel a little normal.

    Anxiety is hard to shake, especially in the night time hours. What do you feel most anxious about?

    Julzee x

  • Hi there,

    many thanks for replying.

    I think anxiety is such a strong emotion for all of us. I live on my own and my closest relations live the other side of the country. I’ve blubbed big time with both of them but I can’t keep doing this. I’ve got a counsellor  but I think I need someone I can really open up to.

    my main anxiety is all TN fuelled and i just worry about where all the stray cells have gone already and then fearing the future and the lack of treatments available. I know everyone fears recurrence/secondaries, but I feel TN is doom and gloom. I’ve had nothing vaguely supportive from my onco ( equally, I dont want someone saying that everything will be fine) and I just can’t enjoy today without being consumed by what the future may hold.

    how has your onco approached TN with you?

    yikes….that post wasn’t supposed to sound so miserable….not a good day.

    thanks everyone

    Himalaya

  • How has the onco been with you? Have they mentioned TN with you?

    How are you finding your treatment at the mo?

    thanks

    Himalaya

  • LolaB147,

    How are you getting on ?