New to the group

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hello I am new just been diagnosed this week it is triple negative grade 3 but they suspect it had already moved to my lungs as they found no lesions on both lungs . Devastated not sleeping been Googling which I don’t think helps. 

  • Hi Fleurlilly 

    I am so sorry to hear that you too have been diagnosed with grade 3 triple Neg, have the said for definite that they think it has spread to your lungs as it maybe scar tissue from infection !!.

    Try not to google as you will have yourself dead and buried I did it’s terrible. Try some herbal tablets for sleeping , it’s so hard to keep your mind occupied I know .I have had a pain off and on inmy side and back but surgeon not interested and I haven’t seen an oncologist yet !!! No scans nothing just lumpectomy results this week which I’m dreading . I wish you all the best in your treatment stay strong x

  • Thank you for your kind words they suspect as I went for a scan on my pelvis and they found lesions on my lungs had terrible few days telling my children and family still have not told my mum she is 83 it will devastate her. I hope you get to speak to the Oncologist soon xx

  • Hi there,

    I also have TNBC grade three - did they do a scan because there was lymph node involvement? I am curious as to why you had a scan on your pelvis? It all seems a lot to take in for you in a week - and fast action on their part.

    Have you spoken to the great care Nurse for support? They are very good and will guide you through this confusing process. Also if you have a Maggies Centre attached to your treatment centre they are also excellent for support on many levels.

    Googling definitely doesn't help in these early stages - being kind to yourself and taking one step at a time definitely does.

    I know that feeling of telling children - it’s the worst part.

    You will feel a bit easier once you have a treatment plan and it all starts. I was diagnosed 2 days before christmas so am ‘on that road’.

    The CALM app is great for night time wakings - really helped me in those early days.

    There is lots of support here for you - I’m happy to answer any questions .

    Jan x

  • I went for a CT scan on my pelvis as they thought I had appendicitis it was on that scan they noticed the lesions on my lungs I had my biopsy Judy before this scan so because of this they requested another CT on my lungs . I went on Wednesday when they told me I wax triple negative and they suspected it had on to my lungs. I was devastated and not sleep properly since . They are having a meeting with the Thorac team and I may need to hone for a further biopsy on my lungs before treatment is decided. Thank you Jan for your kind words and the advice on Maggie and the app I tend to get a couple hours sleep then awake from 1am .I am so tired and confused 

    thank you x 

  • Being tired is the worst. It’s so hard to cope with anything when sleep is evasive. I had one of those nights last night too but eventually I put a meditation on the CALM app and was asleep before the end of it. It seems to stop those whirring thoughts that visit at night!

    You are stronger than you think you are - we are all Warriors on here and we will get through.

    Janx

  • Hi

    The bank holiday was hard to cope with a lot of mixed emotions felt mentally drained.  I hope you had a better nights sleep last night waking up in the night is hard thoughts do go through your mind over and over again. I am hoping to hear some news this week on my biopsy and when I cane have this. Yes we are all warriors on here.

    Letty

  • Thankyou Letty, I did have a better night’s sleep actually. Im grateful for that as today is treatment day. I also have a week of various results on things - scans and genetics plus a meeting with oncologist re next stage of treatment plan. I’m calling it a ‘project’ week which somehow helps me to manage it all. 

    Inbetween all that I will be walking in the woods with my dog, playing with small grandchildren, doing a bit of yoga and making a lemon drizzle cake (of all things) - to keep me sane and distracted as much as anything else - but also because they are things that help keep me ‘settled’ and not spiralling off.

    It’s always waiting that’s the worst - so the waiting has to be proactively managed  somehow.

    From one warrior to another - you can do this.

    Jan x

  • Hi jan

    I agree the waiting is terrible and your mind plays tricks , I had a cry day yesterday kept thinking how long I have got left !! I go for results of surgery Thursday and I’m hoping to get info on next stage of plan . Everything takes so long , you sound as if you have some nice plans for distraction   I’m going to take my dog out later too. Keep strong as you say we can do this . X

  • Hi Jan

    1. Sending you all my support for you today and the lemon drizzle cake sounds divine .  I am a bit taken back that you were diagnosed in December but the treatment and the future plans are only taking place this week. Is this how long it takes ? Do you mind me asking where snouts in the country you are based.

    Letty

  • Hi Letty

    Have you told your mum yet my mum is 87 and she was devastated but she has also been really strong which has helped.

    How old are your kids mine are adults but still my babies , that’s the hardest part , my husband is really quiet and doesn’t really say a lot, but I know he’s struggling with it all.

    we have to stay positive and fight not just for us but for them . Sending you a big hug x