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CathyMac's avatar
CathyMac
Member
7 years ago

Feeling frustrated!

Hi lovely people and Happy New Year! I was diagnosed on the 8th November 2018 and had the usual gamut of tests before seeing my surgeon on the 21st November where the intitial plan was lumpectomy followed by rads as it was thought no node involvement. My surgeon requested I have an MRI so she could map surgery. MRI showed the mass to be bigger than the other imaging so plan changed to mastectomy. Surgery was on the 6th December and my follow up appointment on the 21st December. Pathology results were the same as biopsy results in November. DCIS/invasive ductal in situ but there were nodes involved. I had 16 removed and 3 were cancerous. So my frustration lies in the fact that the surgeon said she would do referrals for oncology and rads as she thought the plan would be for both as there was nodal involvement. I know that we are in the midst of the holiday season so things slow down and shut down. My surgeon went on holidays on the 22nd December and is back in February. I have heard from radiation oncology and have a consult appointment on the 28th January. I haven't heard from chemo oncology. How would I go about chasing this up in the event I don't hear from them in the next week or two? Would I have to wait for my surgeon to return as I have no idea who I have been referred to as she was going to talk to two.i managed to take a chill pill over xmas/new year but I'm now getting twitchy as I want to be able to be able to see my way forward and I feel like I'm in limbo land.I assume that new patients are triaged and maybe I'm sitting at the bottom of the list and they've yet to get to me.
thanks for listening and any advice gratefully received 
coping
treatment
  • CathyMac's avatar
    CathyMac
    Member
    7 years ago
    Someone must have heard me as the oncology dept rang today and I have an appointment tomorrow at midday. Now my anxiety level is rising. I want to get off this cancer train now! 😢
  • Sister's avatar
    Sister
    Member
    7 years ago
    It would be lovely to have one of these BC nurses who seem to work wonders but if like me, you don't, ring your surgeon's office to find out what's going on (even if it's just to find out who you've been referred to so you can ring them) and if you get no joy, talk to your GP.

    I had my second surgery on 8/1 and the path report from a few days prior to that was what indicated that I would need chemo.  My first treatment was scheduled for 5/2 which was the earliest that it could be done after surgery.  As far as I know, this was to ensure healing rather than convenience for the doctors.  In fact, the onc squeezed me in for the first consultation before he went on holiday so that there would be no delay when I got the all clear to go ahead.
  • Flaneuse's avatar
    Flaneuse
    Member
    7 years ago
    @CathyMac Nov-Dec diagnosis is lousy timing; it was my lot the previous year. I agree absolutely about the squeaky wheel effect. I call it self-advocacy and you may need to do a lot of it as you go forward. Many health professionals are just going through their processes and often don't see our needs from our point of view. We need to articulate our needs very clearly - in writing as well as by phone. 

    My surgery was 15 Feb 2018 and I started chemo 19 March 2018. But I'd already had my initial consultation with the wonderful medical oncologist on 28 Dec (because the surgeon had wanted me to have chemo before surgery; in discussion with the oncologist, I opted to have it after). That allowed for a second appointment with the oncol to be made for just after surgery, and the date to be set for chemo start.
  • Brenda5's avatar
    Brenda5
    Member
    7 years ago
    You do need a couple of weeks healing from surgery before chemo but over a month is a lot. Get on that GP to speed things along. I do remember when I was diagnosed in 2015 it took a bit of a shove from the GP to unearth the surgeon but luckily my oncologist and radiologist followed up pretty quick. Seems to be if you don't ask you don't get in our system. Get up em! <3
  • MeganM's avatar
    MeganM
    Member
    7 years ago
    Feeling frustrated just reading your post.
    i agree your GP can and should help out here but also if you reach out to the MCGrath Nurses assuming one is attached to your hospital then they can work behind the scenes with your GP. Worked a treat for me. 
    Good luck
  • Shellshocked201's avatar
    Shellshocked201
    Member
    7 years ago
    Hi Cathymac, 
    my surgeon is of until 8th January like most of the surgeons here in the cancer clinic.
    They still have skeleton staff there though,with one dr there and a couple of breast nurses for wound care and discussions on any results that have come in during the Christmas break.
    If you have a breast care nurse I would give them a call or speak with your GP about what is happening.
    It really sucks this time of year waiting and not knowing what’s happening.
    Hang in there .
    Sending hugs your way ❤️

  • kmakm's avatar
    kmakm
    Member
    7 years ago
    Definitely enlist your GP. It's an absolute pain being diagnosed at the end if the year. I felt utterly abandoned when every medico disappeared. I never had a chemo education session as they didn't run them over Christmas/New Year period. It was very difficult indeed.

    If you have to be a squeaky wheel, so be it. I agree with @Zoffiel, it's highly unlikely your oncologist's office will be shut until February. They tend to work in groups; someone will be able to assist you.

    If all else fails, give the BCNA helpline when they re-open next Monday. They may be able to assist. 1800 500 258.

    I'm so sorry this is happening to you Cathy. K xox
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago
    What a mess. Your surgeon will be on holiday, but they will have left one of their minions in charge and it is most unlikely their offices will be closed until February. Huge loss of income. Huge. Not likely. It is probable someone will contact you, but keep on the blower and keep asking.

    Your GP can refer you to an oncologist in exactly the same way you were (probably) refered to the breast surgeon. There is no mystery about that--you can choose your own if you have a preference. The only thing that changes your range of choice is your health insurance status. If you have good cover, there will be stiff competition for your custom. If you have none you either go public or pay. The 'talking to two' thing is bullshit and deliberately mystifying what should be a simple process.

    Don't let them jerk you around. A royal commision into the delivery of specialist medical services is long overdue.
  • Patti_J's avatar
    Patti_J
    Member
    7 years ago
    @CathyMac.
    Take a deep breath.
    Make an appointment to see your G.P.
    He or she should have all of your results and any other information.
    A few weeks delay will have no impact on your treatment.
    You would not be on the bottom of the "list".

  • arpie's avatar
    arpie
    Member
    7 years ago
    Golly Gosh, @CathyMac - I really feel for you & can hear your stress levels rising - (having just had a 3 week wait for a biopsy & results from early Dec to New Year's Eve - finally getting it done the Friday before Xmas & luckily, a clear result on New Year's Eve!)

    First up - what a bugger that your treatment has gone from 'not so bad' to 'Bugger Bugger Bum' ...... but it is what it is - and your health plan has now changed, to maximise your treatment.     It is SUCH A BUGGER that everything closes down over Xmas/New Year.  My own diagnosis was confirmed Jan 5th 'last year', so my anniversary is in a few days.  I then had to wait 2 weeks til mid Jan before my 'recommended surgeon' was back from holidays for my initial treatment and surgery a few days after that.  That felt like 2 months to me!  Gosh, 4-6 weeks off for your surgeon seems a LONG BREAK!!  :( 

    Do you have a Breast Cancer Nurse to help you co-ordinate your appointments - were you introduced to one thru your surgeon? Hopefully they can be your advocate & make the calls for you, to reduce the stress on yourself?  Or maybe contact some of the numbers here :smile:
    breast care nurse canberra

    The waiting at this time of year is the absolute PITS ... I was doing it this time last year - was doing it most of Dec, so can totally relate to your wait just now.   (and I just got  more & more ANGRY the longer I had to wait - which was sort of good, cos I was really upset prior to that!!) 

    Fingers crossed you hear soon - take care & all the best xxx  BIG HUGS coming your way xxx