Forum Discussion

Suki's avatar
Suki
Member
21 days ago

Follow up appointments, possible change of team...

Hi All

I am two years out from a stage 2 triple positive IDC diagnosis.  I have completed chemo, surgery, targeted therapy and am on hormonal therapy for at least three more years.

I see my oncologist and surgeon once a year each, at a 6mth interval.  I recently completed my annual ultrasound and then went to my booked appointment with my surgeon.  When I arrived, I was advised that she is now contracting to that surgery and wasn't in that day.  Apparently she now only attends there once a month  and her main surgery is now a 40min drive from where I live.  No one had informed me of this or called to reschedule my appointment.

I have re-booked an appointment for a couple of weeks time (when the surgeon will be at the surgery close to me).  They have advised that due to the extended timing, my GP referral will have run out and I need a new one, so I now need to book in with my GP for a referral.

I am really frustrated becuase I have to take time off work for all these appointments, but worse that no one seems to care - the receptionist hardly even apologised!  I had to call and check that they still have my medical records becuase it felt like I wasn't even a patient anymore.  These appointments are stressful enough without all this mucking around!

Given that I need follow ups for at least the next three years, I am wondering whether anyone has changed their medical team and if so, whether there were any issues??  Also feel free to tell me that it is a bad idea to change and that I should just suck up the appointment mistake and move on!

Thanks, Suki xx

follow-up-care

4 Replies

  • Suki's avatar
    Suki
    Member
    20 days ago

    ThanksChristina_BCNA​ andarpie​ for listening and allowing me to vent!

    I have sourced my scan results from My Health Record, so I now know everything is ok (local recurrence wise) which is a weight off my mind.

    I will see my surgeon at my new appointment in two weeks and discuss it with her - I am pleased with my surgical results and I do like her (just not her support staff so much!).

    • Christina_BCNA's avatar
      Christina_BCNA
      Community Manager
      20 days ago

      That’s such a relief to hear Suki​! It’s completely understandable to feel anxious while waiting for results, so I’m glad you were able to access them and get that peace of mind. It sounds like you’ve got a good plan in place with your upcoming appointment, and it’s great that you feel confident in your surgeon, that makes such a difference! If you ever need to talk things through or just want a listening ear before your appointment, remember you can always reach out to our Helpline on 1800 500 258 We’re here for you 💗

  • arpie's avatar
    arpie
    Member
    20 days ago

    I am SO sorry you are going thru this distress & hassle, Suki​  That was extremely rude that they didn't tell you that you wouldn't be seeing your actual surgeon on the day.   Grrrr  As you say - a complete waste of time for you and unnecessary stress.  Maybe ring again on the morning of your appt to confirm she WILL be there, before you leave home.

    I would suggest you put it in writing & send it to the Manager of the GP's Office ... as something really needs to be done about that communication breakdown. 

    With my husband's specialists - I asked the GP to do an 'indefinite' referral - as I got sick of going back for yearly ones for his surgeon and Onc, when we all knew he would be under specialists' care for the remainder of his life.  

    I did the same with my own specialists too - my surgeon, Rad Onc and Onc, as I was seeing them for a minimum of 5 years ... my Onc then continued for another 2 years - I finished with her in July this year.
    Get the GP to write ALL the 'indefinite' referrals on the same day!!!

    This little video may help re Referrals (Only GPs can write 'indefinite' referrals):
    https://www.youtube.com/watch?v=nkuoEJ43faY

    I jumped ship with my Medical Onc to a much better & nicer one ..
    My original one was a male who was completely indifferent to me and my treatment ... his first question to me was "What are you here for?"  (I would have assumed he would have read my bloody Medical History file before I came into the room!) 
    My 2nd visit was to his locum (as he was away) and she listened to my concerns & arranged a change of AI for me - which WORKED .... so I swapped over to her for the next 6.5 years.  She also became my husband's Onc when he went Stage 4.   So, don't be afraid of changing ANY of your team, if you feel they are not 'there for you' xx.  I hope this next appt goes without a hitch!

    Take care & all the best xx

  • Christina_BCNA's avatar
    Christina_BCNA
    Community Manager
    21 days ago

    Hi Suki​ , while we wait for others to share their thoughts on this, I just wanted to reach out to thank you for sharing this experience. That sounds incredibly frustrating, especially after everything you’ve already been through - the last thing you need to add-on is feeling like you’re not being valued as a patient. It’s completely understandable to feel disappointed after a communication break down like that, as it obviously impacts a lot of areas for you with work and travel time. Changing your team is a big decision, and it really comes down to what will give you the most peace of mind going forward. Whatever you decide, you deserve care that feels supportive and respectful. Please don't hesitate to call our Helpline on 1800 500 258 if you need to talk through anything!