TNBC

FormerMember
FormerMember
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Hi ladies 

I'm a newbie to this forum, and from Ireland. I've been reading your posts and getting some positive vibes from what is a negative in our lives. 

So I woke up one morning in january with a lump and was with my gp 2 days later and was reassured it was a cyst but was referred to breast clinic for clarity. She measured lump at 5cm. 2 weeks later I was in clinic, doctor said cyst, had a mammogram which was clear and I was scheduled for ultrasound scan in early March. Approx 1 week after mammogram (which was excruciatingly painful) my boob got so sore, lump felt bigger, was hot and red, my gp started antibiotics as thought it was infected cyst/abscess but with little improvement after 3 days she referred me back for drainage, went the very next day but they couldn't drain it and seen a nodule within the cyst and did biopsy of it and lymphs. 2 weeks later on Feb 17th my diagnosis was given to me, grade 3 TNBC with clear nodes. Tumour is 4cm within an 8cm syst. All this confirmed by mri afterwards. I'm 10 weeks into my planned 12 week chemo now, weekly taxol with carboplatin every 3rd week. all going well but this cyst not reducing in size, waiting to see surgeon, prob do surgery now and abandon planned AC x4. Had CT scan at week 1 and now I'm told my ca125 is slightly raised with cyst on ovary, also waiting a bone scan as CT showed non specific inflammation, told to not worry as these are non specific!! Hard not to worry..having a bit of a deflated day today as this only told to me by oncologist today, even though she told me 3 weeks ago that my CT was ok!!

I'm 45yrs old, a single mother to a wonderful 11yr old boy.

Sorry for lengthy post....

  • FormerMember
    FormerMember

    Hi Irishlady
    So sorry to hear your story, it’s natural to feel deflated and worried ,could you ask for a second opinion?

    There are lots of us here who will support you as much as we can, don’t be afraid to reach out we’re all in the same boat so to speak.

    stay safe take care .

    mimi121

  • FormerMember
    FormerMember in reply to FormerMember

    Sorry for delay but was having difficulty navigating this page, think I have the hang of it now...

    Bone scan clear thank God

    Seeing surgeon Monday and hopefully get USS as no one can tell if chemo working coz tumour is within cyst

    And decided to go for private mri pelvis 're ovary cyst, which I was told 2cm on left...but when my gp requested my CT scan result it appears that I have a 5cm on right which I wasn't told about!!

    So I took the bull by the horns and got on the phone to organise all my own appointments/scans etc...that way I knew where I stood...and I knew I was doing my best for me. Prob a bit like taking control. I involved oncology where needed for letters etc...they might not have like my approach but I'm responsible for me.

    So basically I seen oncologist on a Tuesday where she delivered all this info to me, I arranged my bone scan for the next day, I arranged to see my surgeon through my breast care nurse which is happening Monday and my gp has referred me for Mri pelvis privately which will prob be next week sometime.

    I feel so much better now, and I feel I'm in the driving seat...I just think if you shout loud you'll be heard.

  • FormerMember
    FormerMember in reply to FormerMember

    Good Morning Irish Ladt

    I am so glad you were able to get things moving, hopefully your treatment plan will be in place and up and running ASAP. Keep posting we’re all in this together and masses of love and support for each other.

    Stsy Safe 

    mimi121

  • FormerMember
    FormerMember in reply to FormerMember

    Yes, I feel so much better this week with having everything in place, granted I had to do it myself but I'm not one for sitting waiting, no time like the present and get things organised, god knows how long I'd have waited for these investigations and when your waiting you worry.

    Surgeon review tomorrow so I'll have a decision 're surgery or continue chemo, either way is ok by me. It's all about knowing the plan and speaking up. 

  • FormerMember
    FormerMember in reply to FormerMember

    well done

    stay safexxx

    mimi121

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you...and you too x