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!

  • Hi Ochno - I've just received my Triple Negative secondary breast cancer diagnosis today, so can tell you about the tests I've had so far.
    - I saw my GP mid-April due to rib pain and shortness of breath - a chest xray showed fluid around the lung (pleural effusion) - referred to Breast Cancer clinic to check.
    - BC clinic arranged a Nuclear Med bone scan (whole body) and a CT scan (of thorax, abdomen & pelvis) . They found mets in skull, spine & ribs, liver, pleura and a couple of chest lymph nodes.
    - Oncologist arranged a liver biopsy to confirm cancer type.
    My Primary in 2015 was ER8, PR7, Her2-negative so the oncologist was a bit surprised that the secondaries are now Triple Negative but said that it can change. She thinks the primary may have been mostly ER+, but perhaps there was a bit of Triple Neg in there as well. The letrozole that I took for 9 years stopped the ER+ from developing, but could not stop the Triple neg.
    - I've been told to expect intravenous chemo, but before that can start they are doing further tests on the biopsy sample to see if immunotherapy can be added to my treatment package - so it will be another couple of weeks before I can start. Apparently they can't give me the immunotherapy later - it has to be done in parallel so they need to check if its appropriate for me.
    - I asked about brain mets (which weren't checked during diagnosis) and she said they would do a scan during treatment rather than another scan now.
    As you say, Aaargh !

    I hope there's someone out there who can offer a bit of hope from their response to treatment in spite of being Triple Negative.

  • Looks like we’re pretty much on same timescale.   I had a bone scan in January as I was and still am having terrible hip pain.  That came back osteoarthritis pretty much in most joints but no mets,  now I’m not too sure about that!  GP referred me for a hip X-ray after scan and strangely pain is in the hip that’s not so badly affected.  Feel I’m falling to pieces!  I’m hoping someone can put me back together.  It’s such a kick in the teeth as my treatment was only last year and after good results on first mammogram was feeling optimistic.  To be truthful I’d rather know the worst and then I know exactly what I’m dealing with.  I’m hoping oncologist has lots of answers for me Wednesday because I for sure have lots of questions.  I hope all goes well for you, keep in touch xxx

  • In my experience they assume everything is alright unless you have symptoms. I had a fairly small but grade 3 TNBC found through routine mammogram. The pathology report from surgery had clear margins, no lymph node involvement but vascular invasion at the tumour site. I had chemo due to the high risk, but no additional scans. Part way through chemo I was hospitalised with diverticulitis, after which they did a CT of chest, abdomen, pelvis. That found a secondary tumour in my liver. Oncology then went up a gear, organising a PET-CT and a liver MRI to confirm the diagnosis and check for no other spread. Original tumour was sent off to test for PD-L1, which came back as positive. 

    I then had a liver ablation. It didn’t work (now 2 tumours) so went on Pembrolizumab plus NAB-Paclitaxel. 5 months into that, I had a serious immunotherapy related adverse reaction damaging kidneys, thyroid, lungs, and had to stop treatment. Since then, I have had another ablation, I don’t yet know whether it was successful. I have had CT scans and liver MRIs at regular intervals since the first ones. 

  • That is some journey, so if you hadn’t been hospitalised then liver lesion wouldn’t have been found until perhaps a far later stage. Hoping they’ve got it well and truly zapped this time.  So sorry to hear you’ve had such a bad reaction to immunotherapy, scary stuff. 

    I’m very scared of treatment going forward but even more scared not too.   I’ve had days when I think all I want to do is jump on a plane to Geneva with Dame Esther, then other days when I think more positively.   When I was first diagnosed surgeon who broke news told me I was a lucky one…on a scale of 1-10 she rated me a 2 or 3.  Not so lucky now!  

  • Yes I think I was lucky it was found so early - In reality I was probably metastatic de novo. I don’t think enough focus is placed on vascular invasion. 

    I hope you have a treatment plan soon and that it helps. I know what you mean about thinking about Dignitas. I keep hoping our UK situation gets there before I need it. I watched a close relative die of cancer spread to the liver and you most certainly wouldn’t allow a pet to suffer like he did. 

  • I’m hoping by next Wednesday she’ll have it all decided.  The biggest wait time has been the biopsy result and then the tumour committee meeting, everything else has been super speedy.  Notice an appointment has popped up on my health app the following week for an abdominal ultrasound?   Guess I’ll need a picc line as only have one good arm as Intermittent lymphoedema on my bad side? 

    It’s all such a poop show!   I‘m always amazed at people’s resilience.   A case of needs must perhaps?  I already have the cancer Tourette’s.   This is such a supportive forum and it helps so much to vent on here.  Mustn’t mention the unmentionable to close family!

  • Hi scared_2,

    I found out I was mTNBC at the end of Jan - diagnosed de novo after my routine CT scan showed lung mets.  I tested negative for immunotherapy so I've been on carbo + taxol and done 4 cycles so far.  I got scanned again after 3 cycles and it showed the main tumour and lung nodules have all shrunk which is great news - I'll get scanned again at the end of June.

    For both you and ochno, there's two great FB groups to join, if you're on Facebook?  If you search for TNBC stage 4 you should find them; one's for UK/Ireland only, and the other one is based in the US but is also an international one.  Both are really well managed and are full of information, treatment tips and sharing of experiences - it's where I've learned so much since my diagnosis.

    The initial shock took a good 2-3 months to gradually start wearing off and I spent most days in  tears to begin with.  It definitely helps getting your treatment plan in place and then to focus on that.  Any statistics you come across are very out of date now, that much I do know - both immunotherapy and the drug Trodelvy (only licensed in the UK in 2022) have improved outcomes and given us longer than statistics say.

    I'd also look for any local support groups for secondary cancer that you can meet up in person - I'm in two different support groups now and they've both been invaluable and a great source of help.

  • Hi Ochno - you are sounding more & more similar to me ! I also have mild lymphoedema (probably due to node clearance in 2015) on the original BC side so wear a compression sleeve, and am careful of that arm.

    I read coddfish's profile and she says she asked for a portacath rather than a PICC line - I'm tempted to ask if I can have the same The PICC I had in 2015 was a hassle - having to get it flushed regularly and one time it got blocked, and it makes showering/swimming more complicated. Whereas it seems like the portacath is under the chest skin so sounds as though it's less trouble. Hope they'll let me have that if it's appropriate.

    I noticed from your profile that you are in Spain - will be interesting to see how they do things compared with the NHS. Like you, I've found that the slow bit is analysing the samples; but they have given me appointments quickly.
    I'm seeing the Pleural clinic on Monday (arranged last Wednesday) to see if they think draining the effusion fluid around the lung is feasible and might help - I'm fed up with being short of breath and in pain when walking (which is one of me & my other half's) favourite pastimes. 6 weeks ago we were doing 10k walks; now I only get 300m before I'm wheezing and rib/chest pain kicks in though I'm not sure if that's the effusion or just bone cancer :-(  .

    I was expecting my secondary to be ER+ (like my primary), and the oncologist had already mentioned a couple of trials that I could possibly join for hormone-positive cancer, and it sounds as though there are a lot more treatment lines to try. So I was a bit poleaxed when she said it was now Triple Negative, which I assumed was pretty tough to treat. She also said there were no trials for Triple Negative. But she did say there were various chemos they can try.

    Like you I have black moments when the one-way ticket to Switzerland sounds like the attractive option but Flamingo_flyer's comment about her tumours reducing has given me a bit of hope, so I'll definitely give the chemo a try.

  • Hi Flamingo_flyer - it's good to hear some positive news about mTNBC - thank you, and I hope your scans continue to give good news.
    I've got to wait a couple of weeks while they check if the immunotherapy is appropriate for me (though having read coddfish's report on it I'm not sure I like the sound of that either !)
    I'm not on Facebook yet - never really liked social media and putting personal info in the public domain - I guess I may have to reconsider.
    I had FEC-T last time (cold cap, sickness, 2 hospital admissions for infection, and constipation) so am not looking forward to another lot of chemo ; but I don't know which chemo they will recommend yet.
    How has your chemo gone so far , and do you know how many sessions they have planned for you ?

  • I definitely recommend a portacath, I still have mine, 2 years and going strong. It helped me to continue running through earlier treatment, and I still go in the pool and also use weights, both of which would be difficult with a PICC