I'm not impressed!

KarynJ Member Posts: 193
edited March 2020 in General discussion
TL;DR - If you are a patient at public hospital in Brisbane, check your mammogram & ultrasound appointments.  They may no longer be there.

I had my second year mammogram and ultrasound today.  It sounds so simple!

I was diagnosed in late February 2018 by  (private breast clinic) and referred immediately by my GP to a public hospital as they have a great reputation for dealing with breast cancer.  And at the time, yes, they were fantastic.  I was seen within about 2 weeks (on a Monday) and a week later I was admitted and have my lumpectomy on the next Monday.  Wonderful!  Public system at its finest!  Nasty tumour ripped out, sentinel node biopsied.  All good.

I was assigned a breast care nurse (2 actually who job shared) and had follow ups with the surgeon and visited the Breast and Endocrine Clinic as required.  Fantastic!  Delays to appointment times but meh, it is what it is.  No complaints.

In March 2019 I had my first annual check up.  Queried the technician about getting a 3D mammogram.  Apparently the machine has the capability of doing this but no one was prepared to pay for the licence to activate it and turn it on.  Had an ultrasound - technician noted a couple of cysts but nothing concerning.

Had the follow up appointment for test results at the BE Clinic.  Saw a random doctor who claimed to be some kind of breast specialist.  I was also told I'd never see my surgeon again.  She said the report was all clear.  Yay! Great news! However, when I specifically asked about cysts, she said oh no, there aren't any.  Hmmm suspicions raised.  I asked about breast density.  She couldn't give me a definitive answer.  I asked what stage was my cancer (knowing it was Grade 3 but not stage).  Oh, the response was, we don't use stages any more.  Uh really???

Totally forgot at the time to ask for a copy of the report.  When I followed up about a week later, breast care nurses said, not our problem.  Email these people.  So I dutifully emailed my request and heard nothing.  And still heard nothing.  Followed up 2 weeks later to be told they had never received the original request.  <cough bulls*t>  Eventually got the report and it was a drawing with some scribbles on it.  Not exactly a professional document.

So 2 days ago, I was mentally prepping for my exam this year and received a phone call from Qld XRay at 5 pm the day before my exam saying they are going to schedule my annual appointment.  WTF?  Apparently the public hospital have outsourced their mammograms and ultrasounds to Qld XRay and did this in November 2019 and obviously didn't tell anyone.

Qld XRay also thought my appointment was 4 April and not 4 March.  I told her, no no no, it's definitely 4 March and I'm holding the appointment letter in my hands right now.  Of course, no availability on 4 March so I was rescheduled to 5 March.  Not too bad, just one day delay.  I can cope.  But how furious I would have been if I'd turned up at the public hospital to find out it had been cancelled with no notice.  Thank goodness I did get the phone call.

So today I rock up to Qld XRay and I am very impressed that the first thing they do is give me a 3D mammogram.  No mucking around with old 2D stuff.  Excellent!! Ultrasound very thorough and I'm totally on board with the lovely staff.  And the best thing is you have access to a Qld XRay online portal and can see your images within a few hours!  No report thought until you've seen a doctor, then it becomes available.

Anyway, they contacted the public hospital to get copies of last year's scans and results and hospital promptly tells them that they have no record of me.  That there are no scans or results in their system.  Are you #(*&ing kidding me?  This after receiving a text message today reminding me of my follow up appointment at the hospital for next Monday.

So Qld XRay has had to send off requests on my behalf to private breast Clinic and Breast Screen Qld (where I had a couple of scans done about 6-7 years ago) to try and source comparison scans.  All of which is going to delay my report getting to my various doctors.

So the public hospital - not good enough!!! Not happy at all.  I don't know what's happened there over the last 1-2 years but something's not right internally.

I shall be very interested to see what happens at my appointment at the BE Clinic next Monday.

Sorry for this long and ranting post but I just had to vent.  We rely on this stuff to go smoothly.


  • kmakm
    kmakm Member Posts: 7,974
    That sucks Karyn. And it's appalling. Will you complain formally?
  • Dory65
    Dory65 Member Posts: 323
    Take it to 
    Office of the Health Ombudsman
  • Dory65
    Dory65 Member Posts: 323
  • KarynJ
    KarynJ Member Posts: 193
    Thanks ladies. I want to see what happens next Monday. My records might mysteriously reappear. I also want to get my hands on the latest report and see what my results are.
  • arpie
    arpie Member Posts: 7,451
    That's a shocker @KarynJ !  Thank goodness your MG was a 3D one tho ...... all the best for your results!  xx

  • KarynJ
    KarynJ Member Posts: 193
    Thanks @arpie. Fingers crossed that all continues to be well.
  • Sister
    Sister Member Posts: 4,960
    Regardless of the results, they need to be reported...if you've got the mental energy.
  • youngdogmum
    youngdogmum Member Posts: 250
    edited March 2020
    Without disclosing too much in an online forum... I don’t think it’s acceptable they get away with this. I was initially referred to public hospital and told it’ll be 3-4 weeks for an appt and because I work in the industry and know the guidelines, I argued left right and centre and ended up going to the PA. 
    But my husband has had surgery there and all of his care has been fantastic. 

    Regarding outsourcing to qld XRay, I don’t think that’s very weird really, lots of Queensland hospitals already do this ... but it’s not acceptable for them to have no record of your scans. Please, as a nurse, I ask you to complain. Change DOESNT happen unless people do it.
  • Beryl C.
    Beryl C. Member Posts: 270
    KarynJ a few years ago (I was diagnosed June 2011) I had a similar problem so requested all my records from the hospital via the Freedom of Information guidelines they provided. I also wrote to the state's Minister for Health. He did reply but it read as a 'stock standard' response. To take such action requires energy but I found it was actually satisfying to have a focus and gave me some sense of being in control. Stay in touch. xxxxxx
  • Keeping_positive1
    Keeping_positive1 Member Posts: 554
    edited March 2020
    Despite being Stage 3 at diagnosis I waited for 2 months to have surgery in the public hospital system, the process was so slow and finally after all the planning was done then I was a Category 1, so they had to do surgery then within 28 days.  But to get to have all the tests Is so slow, makes me wonder how they get away with it.  It is so wrong, and this happens more frequently than we like to admit.  I didn't die, and I didn't end up with Stage 4, but from the time of diagnosis until I eventually started my 18 months of active treatment was 4 months from my diagnosis. Note, being Stage 3 and in lymph nodes as discovered by BreastScreen I should have been automatically a Category 1.  

    @KarynJ sorry to hear of your experience and @youngdogmum is correct this goes on, exactly what you are saying goes on more than people will acknowledge, unless it personally happens to them.  Also I was told that they don't talk in terms of Stage 3, but this is misleading because some surgeons will use this terminology and some won't, I believe it is to cover themselves.  I do feel sorry for the surgeons working within the limits of the public system, not their fault, just lack of funding.  I hope you get a good result and follow up with this @KarynJ All the best, take care.

  • KarynJ
    KarynJ Member Posts: 193
    Thank you everyone for your support and advice.  I appreciate it. And @Keeping_positive1 I'm so sorry you had such a dreadful time with those delays.  That should not be happening these days.

    I saw my GP today and got a copy of the report which specifically states "/Hospital/ has been contacted however have stated no previous imaging available for patient". 

    The upshot of this is that the report cannot definitively give me a result without comparison to previous scans.  It says there is fibrocystic change but until a previous scan can be found, they can't say whether this is a normal part of me or something that needs further investigation.  So I have to wait for a follow up report.

    I've looked at the US scan pictures and they've marked up a very definitive black spot. 

    So now that I'm armed with this little nugget of information, I'll be asking some very pointed questions at my follow up at the Clinic on Monday.  If they cannot offer any satisfactory explanation, I'll be requesting information on how to make a formal complaint.
  • KarynJ
    KarynJ Member Posts: 193
    @youngdogmum I'm not too worried about the outsourcing to XRay.  I can understand that and they have equipment that is more than adequate for my needs.  It was the timing - not finding out until the day before my annual scan - that got me worked up.  If they can send me a text telling me my clinic appointment is on a certain day, then they can certainly send a text advising that there is a change to the scan process and please contact so & so to sort out a new appointment.
  • Mira
    Mira Member Posts: 678
    I go to the same hospital but I've had a  good experience all the way through.  Something must have happened in their imaging department as they rang to reschedule my bone scan to the private hospital instead.  Then Qld Xray rang me this week to reschedule my mammogram and asked if I wanted it done in my local area, they said that if I wanted it on the date it had been scheduled (April 1) I might still be able to get it done at the normal hospital if they had their machines up and running again.  But they couldn't guarantee it and said they'd ring again closer to the date.  I think they said maintenance, but don't quote me on that.

  • KarynJ
    KarynJ Member Posts: 193
    Hi @Mira. Up until this week I really have been happy with pretty much everything. The op, the rads, most of the staff. It's generally gone well. So I'm just wondering what kind of internal glitch has happened to cause this confusion.
  • Blossom1961
    Blossom1961 Member Posts: 2,340
    Geelong Hospital was held to ransom last year with appointments, procedures and operations cancelled as patients computer files had all been stolen. They are still having issues with it. Most of my files had been transferred to another hospital only the week before but it still affected me. We don’t always know what is going on behind the scenes. It would make it easier for us if we did.