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ND87's avatar
ND87
New member
3 hours ago

Feeling lost

I am newly diagnosed and just feel lost. My appointments and tests have been so close to each other. I have had mammogram, ultrasound, biopsy of the breast, FNA of my lymph node, a pet scan and having a mri tomorrow. My diagnosis is invasive carcinoma NST (invasive ductal carcinoma), grade 3, triple-positive (ER+/PR+/HER2+), with associated high-grade DCIS. The ki-67 is 60%. I have been told the I will have 4 months of Chemo, then surgery, radiation and long term medication after.

I met with the breastcare nurse and found her extremely unhelpful. I just don’t know what to expect and how to feel at the moment. Has anyone been on a similar journey who can tell me what to expect?

1 Reply

  • I'm sorry to hear about your recent news and experience. You've had a lot thrown at you in a short amount of time, and it sounds like you've had a disappointing experience with your breast care nurse. 

    I was diagnosed end of September 2025, started chemo the following week for 4 months, had a month break before a double mastectomy and reconstruction. Since then I've had ovaries removed and have some revision surgery and carpal tunnel correction coming up. 

    I'm on anastrazole as a lot of us are, and was on tamaxifon before ovary removal.

    In my experience I had access to a couple of breast care nurses, maybe you might be able to connect with a different one through your hospital or talk to someone at BCNA? 

    Everyone finds treatment different. The advice I was given which helped was to share your side effects with your treating team, there's usually something they can do to help, to prioritise rest (that was absolutely key for me, no rest days were generally not pretty for anyone!) and take care of nutrition/hydration as best you can. 

    You've got this, once you start treatment you will find your "rhythm" and can start ticking off the rounds until you are done. 

    Other random stuff that helped me:

    • Dedicated chemo bag (keep a charger, a book, drs notes etc in there for each appointment)
    • Lots of water... Lots! Sodastream helped me there. 
    • As much rest as you can get before you get overtired
    • Walking as much as you can manage during chemo 
    • Strong flavour herbal tea for my weird taste buds changes
    • Heat packs for chemo pains. 

    I wish you all the best and really hope you find some support through BCNA or an alternative breast care nurse. 

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