Just had a diagnosis - now what?

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Hello Everyone,

it’s been such a comfort hearing your stories, support and advice for one another. Thank you for your honesty and willingness to share. 

had a diagnosis on Tuesday - grade 3, HER2 borderline so they are advising 24 weeks of chemo, then lumpectomy and maybe radiotherapy after that. Not in the lymph nodes. 

don’t really know all the lingo - they’ve said I need an MRI to check if it’s spread a PICC line inserted, an ecg to check my heart and should start treatment within 2 weeks

Just had a letter for a clip insertion 10 days away but I’ve already had that and thought I’d get an appointment to go chat through chemo treatment as was told it needed to start within 2 weeks.

any advice on what to do next? Thinking of ringing the BCN on Monday and finding out more. Is the wait usual? What’s your experience of finding out things? 

  • hello!  it's a lot to take in and to be honest I learnt just about everything I needed  by reading posts on this forum!  I had the PICC line , it's a bit annoying here and there but I'm learning to live with it! one week I found really hard was when I had the PICC line inserted, Mri scan, Heart SCAN, bloods taken , PCR test,   and my first chemo all on different days during same week! 

    was very exhausted not just from constant trips to the hospital about 20 Miles each way but the anxiety of it all, the parking, finding where to go for this and that, waiting in crowded waiting rooms, giving my name and dob a zillion times over,  worrying all night about results.,,,  I'm glad I had the scans as now I have reassurance it didn't get past lymph nodes.

    it does get easier , as everyone says...once you start the Chemo routine. it's the beginning of the end so to speak..,I had surgery first, was told tumour out and margins clear but as had spread to lymph nodes needed chemo , 8 cycles, break, then radiotherapy.  I'm just past cycle 2. 

    I would suggest try and get some relax time in now as you may ..or may not...have issues sleeping esp as they give steroids for a few days after chemo days, and read up on here ..or trusted sites only, lots of ideas on here on things you can buy or get to combat side effects.  

    Happy to answer any questions based on my experience! 

  • That sounds like it was quite a week and very overwhelming.

    Thank you so much, that’s really helpful. I’m doing my best to rest up now before it’s all about treatment Blush

  • Hi, sorry you find yourself on here, but there's lots of fab support and you can ask anything.  I had a similar diagnosis to you about a year ago and had chemo, lumpectomy and radiotherapy. I am HER+ so also having Herceptin injections (2 more to go) and daily Letrozole tablets.

    I blogged throughout as it helped me to write things down so if you fancy a read it's a bit of a no nonsense practical view of my journey.   Good luck

    Blog Link

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  • Thank you so much. I’ll check out the blog. I really appreciate that. Blush

  • Hi fellow Irish girl. I read your blog and thank you for inspiring me to keep trying  by to be positive. Enjoy your trip!