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!

  • I’m also thinking portacath too now!  This is why this forum is so great.  If I could continue to swim especially over the summer in Spain that would be fantastic.  

    Treatment here is definitely very different.   I think I’ve landed lucky this time as my oncologist speaks perfect English, seems driven to help me and also has a bit of empathy.  Empathy sadly lacking first time around and everything was soooo slow to happen.  There are no support systems, so no breast cancer nurses, physio for lymphoedema arm I had to organise and pay mysel.  My local GP is now better now that I know her well so feel I have her support too.   She gave me my results 4 days after me first presenting with supraclavicular lump.    Eeeez bad but you strong woman, we give you drugs to stop!   Summed it up really, okay it went on to get badder but at least she’d set my expectations.

    Yes, flamingo-flyers comments have also given me some hope.  I won’t book that one way Swiss trip quite yet.

    so nice to chat on here x

  • Hi Coddfish - was it easy for you to get a portacath or do they try to persuade you to have the PICC ?

  • Hi scared_2,

    I'm on a 3-week cycle and I have carb+taxol on day 1, and then just the taxol on day 8.  The first week is tough with both drugs, and I get hit with fatigue on days 3 and 4 pretty badly and spend nearly half the day in bed, although last cycle I managed much better (crossing fingers that next week will be better again).  I also have a foul taste in my mouth for a few days after the two drugs, and I'm losing hair bit by bit even though I'm doing the cold capping.

    They've planned 6 cycles and next week will be cycle 5 - no idea what the plan will be after that, i know it'll depend on the scan results, but even if the next scan is good I don't know what the plan is.  My onc said I can't stay on the carbo because of the tanking it does to your blood counts and bone marrow, but I don't know if I'd stay on just the taxol, or risk coming off treatment (which feels too scary at the mo).

    Btw, there's definitely trials out there for TNBC.  There's a charity called Make 2nds Count (google them) and you can book a phone call with a nurse from there to discuss which trials you could be eligible for - maybe your onc meant there's no trials "right now" as most of them you have to have tried a couple of lines of treatment before you can start a trial.  It's something I'm planning on doing in the future.

  • Hi Flamingo_flyer - sorry to hear that your chemo has been tough, but hope that, as you say, it is improving with each treatment from here on.

    When I had chemo in 2015 they gave us daily injections to take for a week or so after the chemo to boost the white cell count (think it was called Filgrastim, and my husband was shown how to inject that into my stomach flab). I don't know if that was specific to the FEC-T chemo that I had then, or whether they still offer them now.

    The trial info is interesting - thank you - good to know that there might be options in the future.
    Please keep us posted on how your treatment progresses as Ochno and I may well be following your path. And I hope your next scan shows further improvement.

  • Hi  

    The hospital’s default is to give you a PICC. I knew about portacaths so requested one - I really didn’t was a PICC - and it was approved. Not all hospitals can offer them as it requires an interventional radiologist to put one in. 

  • Hi there, how did you pitch it to them to have them agree?  I’m thinking lymphoedema on right arm and dodgy veins on left.  They had been okay but they struggled last few times for bloods and then catheter for biopsy procedure.  Falling to pieces I think x

  • I was about to have EC chemo and my hospital insist on a line for that. So it defaulted to a PICC which I was not prepared to have as a regular runner and swimmer. So I used my wish to stay fit, and the impact 6 months of missing my preferred activities would have on that. 

  • Hi Ochno - I think you have a results/treatment plan appointment today. Hope it goes as well as possible,
    I'll be keeping fingers crossed for you. Let us know how you get on.

  • Hi there, a bit of a disappointing day.  Not all pathology results back in, the TNBC bit a work in progress, they’ll have by tomorrow.   If results had all been in today they were all set to start chemo today!  Eeeek!

    Next appointment Monday and start chemo same day or Tuesday.  

    Discussed picc or portacath, her preference is portacath as I’m in it for the long haul.  First chemo will be intravenous though to allow them time to set up appointment for insertion.

  • Hi Ochno - Glad there were no extra shocks today, though disappointing that the results weren't all in yet.
    Lucky that your consultant agreed the portacath without argument. I'm not looking forward to that discussion with mine as I fear they may push for the cheaper (presumably!) PICC option.

    Do you know if they've done the immunotherapy test (PD-L1?) to decide if they can add immunotherapy alongside the chemotherapy ?
    And do you know what chemo you will be having ?