What tests and scans used to diagnose breast cancer mets?

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What is the norm for a complete diagnosis before treatment?   I had a first mammogram end December and given all clear in January by oncologist.  Found lump on my clavicle mid April and since then had ultrasound, CT scan, bloods and a biopsy of neck lump.  Await results of that.  CT showed suspected mets in supraclavicular node on right, axilla on right and lungs also right with a bit of intrusion into the middle part too, also node under breast.  The whole shebang!    I asked if PET or MRI scans will be done too and told no, they will scan as treatment advances.  Looking like chemo of some kind.  Biopsy will determine treatment, oncology on Wednesday to decide.  I was borderline for TNBC last time with very low PR and ER and they think possibly that due to placement of mets, pathology will be the same or actually secondary TNBC?  My concern is it’s grown so fast who knows where else it could be?  I don’t want to be under diagnosed or treated.   Aaargh!

  • Do you know I clean forgot about PD-L1?  I’ll ask Monday.  I think I was thrown by the unfinished pathology.   It’s been 13 days since biopsy.  Chemo will depend on pathology result so will find out Monday.   Whatever it is, I’m sure won’t be pleasant.   

  • I know the feeling - my chemo in 2015 was horrid, so I'm expecting the next lot to be bad too :-(   Perhaps we'll get a pleasant surprise... Fingers crossed
    One good bit of news for me is that I had my pleural effusion (fluid around the lung) drained on Monday and that has reduced my pain when walking; I'm still a bit short of breath but a definite improvement. I'm glad I held out for the draining as the consultant wanted me to wait and see if chemo would clear it a bit. They actually removed 1.5 litres of fluid !
    I find out the results of my PD-L1 next Weds (29th) hopefully, and she said it would then be a couple of weeks after that for my treatment to start.

  • My fingers crossed for a pleasant surprise.  

    1.5 litres, wow that’s a lot, no wonder you’re more comfortable.

    looks like it’s full steam ahead for both of us.  I’m glad things are moving along, better than sitting thinking the damn thing is growing unchecked.

  • Hi Ochno - good luck with your oncology appointment today - let us know how you get on.

  • Oh Manana Manana….not all results back yet, needing the HER2 to make the clean sweep of TNBC….it was negative last time so she thinks most likely will be again.  PR and ER last time low, now zero.   Hoping to have HER2 and PD 1 test results in today or tomorrow and start treatment on Wednesday…plan is carboplatin and gemcitapoine with pembrolinab as an extra is PD positive…sorry spelling..her writing not too great.  Two weeks on and one off

  • Carboplatin, Gemcitabine and Pembrolizumab

  • Hi Ochno - disappointing that your full results aren't in yet - I suspect mine will be the same. The oncologist booked an appt for me this Weds 29th but said it would slip a week if the PDL1 results weren't back . When I asked the Macmillan BC nurse last Friday she didn't think they were in yet and we've just had a 3-day bank hol weekend so I'm expecting a postponement.
    Even after the results come in she said it would be a couple of weeks before I start chemo but didn't explain why. I'd like to get started in the hope that it reduces the aches in ribs and spine which are dulled by the Naproxen & paracetamol but always there as a nagging reminder :-(

    At least you'll be starting quickly once your results are known - fingers crossed you start on Wednesday as expected, and the chemo is kind to you.

  • Very disappointing.  We live out in the sticks in Spain so it’s an hour each way into Malaga, just wished she’d phoned me instead.  On plus side means I’ve met her again and building a nice rapport.   She’s lovely and has lots of empathy.   

    I fully expect the start date to slip, she said she’d call me tomorrow if results not in.  Everything super quick apart from wait for actual biopsy and then results.

    Not good re aches and pains, I’ve learned to take painkillers before any pain kicks in.   I’ve always been someone who hates taking tablets of any form and I’m now like…just give me them, give me them now!  I’m glad no wait before chemo, strange difference between UK and Spain.  My bet is Spain less cautious and it’s a case of get that chemo in quick??

    Keep me posted as to how you get on.  It so helps to chat to someone in the same cancer boat x

  • @Ochno.  Hoping your PD-L1 result arrives in time for your Pembrolizumab to be authorised before treatment (assuming it is positive). 

    @Scared_2 . Similarly with your result and treatment plan.

    Pembrolizumab can be a game changer. All the best with it.

  • Hi coddfish - thanks for your kind thoughts.
    How are you getting on with treatments ? I think you said treatment stopped while your bad reaction to Pembrolizumab was being dealt with.
    Are you back on any other chemo yet, and how are your scans ?