No Scans to Check for Metastasis

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I was wondering what people’s thoughts are on the NHS not routinely offering scans to check for metastasis of breast cancer. My diagnosis is very new. I have her2+ breast cancer which as I understand is aggressive and fast growing. I have relative to my breast size a large tumour. At my oncology appointment the doctor made a point to say that they do not check the rest of the body for cancer. This being my first experience I was I suppose surprised to hear this. I guess one factor is cost and there must be I suppose other reasons. I have this constant worry in the back of my mind that I have cancer elsewhere. For 4 months before my diagnosis I have had complete loss of appetite and debilitating fatigue. I also have an awful sensation of pressure in my lower back. How are other cancers detected? Is it just through extreme symptoms? 
How have you all come to terms with this approach and the worry that you might have cancer elsewhere and the lack of scanning to check? Have any of you gone the private route for extra scans? 

  • hi   sorry you've had to find your way here. 

    I was also Her2+ and I also find it alarming that they act promptly to diagnose and treat primary breast cancer but then simply don't bother to check for mets.  

    Whilst waiting for my surgery I had another tumour pop up overnight, and it hurt, I freaked out, called anyone that would listen, tried to ensure this new tumour was included in my surgery and was reassured it would be but it then wasn't, the surgeon apparently missed it.

    I realised it was still there because when the pain killers wore off it was still painful.

    I had to challenge at every step to get the team to take me seriously. Luckily I had paid for a private initial consultation and it was that report I was able to present to reinforce my case. 

    After that they did pretty much everything I asked for with one very notable exception, they never scanned my head and when I queried that they increased the coverage of the chest, abdomen and pelvis scan to include up to my ears.  I felt that was extraordinarily petty.

    I also have to request ultrasound scans alongside the annual mammograms, which I was told were essential. 

    You may be lucky to be in an area where they have better facilities, I was treated at the Royal Marsden in London and was told they don't have enough staff to routinely offer extra scans.  It is a very busy hospital catering for a huge amount of referrals. 

    I was also told that mets would be 'obvious' as it would be painful and yet a friend of mine had a bit of a headache and a bit of nausea as the only clue to her brain mets. 

    My GP said "the outcomes are the same" which I thought was rather blunt.  Mets diagnoses vary massively. But he's a GP not a specialist.

    Loss of appetite for me is the biggest clue and I suffered exactly that whilst waiting for my surgery, the radiologist said "we don't want this settling anywhere" and we know there are checks for circulating cells which cause nausea.  There has been some trials to check the efficacy of chemo but it's expensive so I doubt it will be widely available.  

    Post chemo I did feel a lot better and I also healed very well after my revision surgery.  Chemo is brutal but it does seem to work.

    I was offered whole body bone scans and CAP post surgery because I was initially 'only' diagnosed with DCIS which was "nothing to worry about" and it was only the post surgery pathology /histopathology that showed the Her2+ hence the sudden urgency to arrange the extra scans.  

    After that I had to insist.  

    I did offer to pay for a private consultation but in the end they set it up for free, you might try to offer that you'd pay for extra scans and see what price they'll give you or negotiate what you can afford ??? 

    Some of my symptoms were dismissed instantly but I'd have thought pain in any part of the body was worth investigating, especially a pain that cannot be attributed to anything else.  You need to stand your ground, they expect you to be anxious and panic at every twinge.

    I was involved in a visit to parliament to campaign for drugs for metastatic patients and private care offers much more flexible use of drugs, confirmed by my oncologist. 

    Other countries offer better aftercare and other cancers are treated differently in the UK.

    Let me know if you need me to research any of the things I've mentioned.

    Which NHS area are you under???

    big hugs

    Carolyn 

    xxx

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • I had stage 1 cancer but triple negative and so an aggressive cancer.  I was told they would not scan me as it would not detect any cancer cells at this early stage.  I also had chemo therapy to mop up any stray cells that were virtually invisible.  I have since had a CT scan because of a cough.  So it was not for financial reasons there was no scan.

    A discussion with your GP may help.

    ricki
  • I was initially diagnosed with early stage breast cancer.  Surgery first, no nodes involved, but vascular invasion. No other scans as not thought to have spread. Recommended to have chemo as a precaution. Just over halfway through chemo I developed an issue unrelated to the cancer and had a CT scan, which found a secondary on my liver. So much for early stage. Mine is grade 3 TNBC. Oncologist is reconsidering whether scans should be routinely done for high risk but assumed to be early stage cases. 

    if you are concerned about symptoms, it’s definitely worth pushing. Someone in the thread mentions private options, I did investigate this when there were delays setting up the PET-CT I needed to follow up on the CT. I got this resolved through the nhs in the end, but my research indicates it costs around £1800 to get it done privately. 

  • Thanks so much Carolyn28 for your reply. It’s so helpful. It’s shocking that they missed your second tumour. Then to take the scan only to the bottom of your ears was I agree very petty. I understand that we are but a single number in a huge number of people that need treatment but we are fighting for our lives. I’m only 45 I don’t want to lose my life. The feeling of not being heard is so very frustrating. 
    My cancer is on my left side. For months I have also had the strangest sensation of intense pressure in my upper face, specifically my upper jaw bone and behind my eye. It’s there constantly. I’ve also had for months constant swelling in my lower left leg, foot and ankle. My foot is constantly puffy and the skin burns. The lymph node in my groin on the left is really tender, it feels the same as the cancer affected node in my armpit. I tell the oncology doctor this and it barely registers. I just feel in my gut something isn’t right. 

    I am going to do as you suggest and ask that I be allowed to fund scans myself. I am very lucky that I could afford to pay for them if they let me. If the NHS aren’t amenable then I’ll have to search for a private service. Finding somewhere reputable concerns me but I will research. I’m clueless at the moment as to how all this works. 

    I live in Leeds in West Yorkshire, my local breast chemo department is at St James University Hospital. The chemo department is currently over subscribed by 12 women a week!! My chemo was supposed to start on the 5th of Jan but has been moved to the 13th because of the demand on the service. I feel  helpless to be honest. I asked if I could go privately for treatment but the team strongly discouraged this as being too costly, the treatment wouldn’t change and I would have to start the process from the beginning. 

    Thanks so much once again. x

  • I have been reading this thread with great interest. I was HER2+ plus ER+. Mainly treated for HER2+ as they forgot about ER+. Following chemo and targeted Herceptin, I had a delayed (because of covid) double mastectomy, no lymph node involvement in those checked, a small remaining ER+ tumour was removed and I was told “Congratulations you are cancer free”. Sometime later when I was querying with the oncologist why I had to take anti-oestrogen tablets (exemestane) if I was cancer free, I was told it was to stop reoccurrence and when I reiterated "but if its all been removed", he then said, “but the chest wall”. It was a telephone conversation and I never picked up on the chest wall bit. But I have been worried ever since and have often wondered how would I know if it had spread/reoccurred as obviously with no breasts I don’t have follow up mammograms. If an all-over body scan would show cancer, it makes sense that we would be getting this every so often. Does anyone know how to get this done privately and what the cost is? I no longer see my oncologist and my GP said he knew of no scan that could detect cancer!  I would rather have a yearly monitoring scan than the awful anti-oestrogen aromatase drugs that worsen my osteoarthritis, encourage weight gain, affect eyesight etc and would probably cost the NHS not that much more.

  • hi  

    sorry to hear you're still worried.

    It sounds like you do need to get someone to review your case to put your mind at ease.

    If you get on well with your GP that might be a good place to start? Mine went through all my notes with me at one point to help me understand what was going on but my practice has a dozen or so GPs and not all of them were that useful.

    If your GP surgery is not your favoured place,  you could try PALS, the patient liaison service at the hospital.  Contact them with a list of questions and how you'd like the situation resolved.  Perhaps a meeting with yourself and your daughter with one of the consultants to review your case notes?

    There are many tests that detect cancer cells.

    https://www.england.nhs.uk/2021/09/nhs-launches-world-first-trial-for-new-cancer-test/

    That is one article but when I was being treated I knew there were trials going on at that hospital, the Marsden, but also Hedge Funds were starting to tout the money making opportunities for these new 'liquid biopsies'.

    The mention of 'Hedge Funds' gives you a clue that this type of test can be pretty expensive and would have to go through NICE approval to be widely available.

    I used 'liquid biopsy circulating tumour cell test UK' as a search term and there appear to be several private options. 

    If you remind me tomorrow I will have a look through the 'Ads' as it's been a while since I was last exploring options.

    At the end of the day the choice is yours as to whether to take the anti hormone drugs, quality of life is as important as quantity?

    big hugs

    Carolyn

    xxx

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • Hi Rozalia. I’m looking into which scans I would need to have to check my whole body I can let you know what I discover. So far from what I’ve read I think it is difficult for things to be picked up on whole body scans however because it’s such a large area, from what I understand scans are most effective when focussed on specific areas. I think this is one of the main issues whole body scans aren’t offered along with cost issues. Also exposing our bodies to regular scans isn’t particularly good for us and really should be kept to a minimum. It’s an awful dilemma, living in fear is horrendous. I’m beginning to think fighting for investigations into odd pains or symptoms is probably the only way to go. Really advocating for ourselves and not allowing doctors to fob us off. 
    Other readers might have more helpful input. Fingers crossed..x

  • A PET-CT scan uses radioactive tracer and fast growing areas light up on the scan, making metastases easier for the radiographer to identify. A CT scan provides the same information but in a not so easy to see way. 

  • I've just been checking the blood tests and found the NHS-Galleri trial,  looks closed unfortunately.  The trial looks like it is at the 2nd appt stage, 3rd appt would be in another year.  https://www.nhs-galleri.org/  Would be interested to hear about other tests x

  • Thank you for your replies and website information. Miss Tangled if you discover anything please let me know. x