Time is of the essence

Trinny
Trinny Member Posts: 9
edited January 2019 in Newly diagnosed
Hi
I was diagnosed 15th Jan 2019 with DCIS. Appointment with the surgeon is booked for 3 weeks time, but I'm freaking out as this time frame for me seems extensive, is it? 
How long has others waited from diagnosis to appointment with their surgeon?  
Am I worrying, when there is little need?

Thanks in advance :)
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Comments

  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    hi Trinny it took me weeks to see the specialist then I wanted a 2nd opinion  diagnosed first week of september end of the october had surgery... back in 2012
  • kmakm
    kmakm Member Posts: 7,974
    edited January 2019
    Hi Trinny, and welcome to the forum.

    Please don't worry about the wait. This question comes up quite a lot here and it's quite common to have waits of several weeks. If the doctors felt it was urgent, you'd be seen quickly. 

    DCIS means the cancer has not moved out of the ducts. My surgeon said it can sit in there for years and never move.

    I know saying 'don't worry' when we talk about cancer is silly, because it's almost impossible! But I don't think you should be alarmed by the wait at this stage. Try to keep busy, distract yourself as best as you can, and if you have any questions in the meantime, don't hesitate to come here and ask. Big hug, K xox
  • arpie
    arpie Member Posts: 7,519
    Hi @Trinny  - Welcome to the blog - lots of support and useful information on what to expect ..... even some laughs to be had, to help cheer you up.

    3 weeks is about 'normal' - tho I was lucky & had my appt in 2 weeks as I was diagnosed on Jan 5th & I contacted the office even tho it wasn't 'open' - and managed to get in on the first day of my surgeon's return from Xmas Holidays.  The waiting is always hard - I've just had a callback on Dec 4th & it took until Dec 21 to get the biopsy done & I was going apeshit!  (All clear.)  That 'wait' never gets any easier.

    Whereabouts are you (Town/city) - we may have members nearby who can point you to resources in your area.  

    Take care - in the mean time, try & keep busy, doing what you love doing - make sure you have a good buddy with you at your appointments as an extra set of ears.  I even recorded my initial appointments on my phone, as the stress of the day makes it difficult to remember all that was said.  Write down any questions that pop into your head - and just work your way thru them with the surgeon on the day.  

    He should have a Breast Care Nurse available to you, who should become your best friend for any other questions after you've gone back home - or just put them up here & someone will give you an honest answer.

    All the best with your appointments  xx


  • Trinny
    Trinny Member Posts: 9
    Thank you, you have all placed my mind a little more at ease. To reply to Arpies question, Im from Perth WA, treatment is at Fiona Stanley Hospital, Surgeon Dr Fernandez. That alone freaks me out as I cant find any information on my surgeon :(
  • kmakm
    kmakm Member Posts: 7,974
  • Annie C
    Annie C Member Posts: 849
    @Trinny
    Hello and welcome to our very supportive and warm forum.

    I was diagnosed just over 18 months ago when the mammogram bus visited town. What a shock. It was my 9th mammogram in 18 years. I can tell you that there is nothing so frightening  being given your results via a telephone call and then being told you have to come to Perth for treatment.

     I had my initial treatment at Royal Perth. From diagnosis to surgery I had a wait of 5 weeks complicated by the oft quoted "tyranny of distance". In that space of 5 weeks between diagnosis and surgery I had 3 return flights to Perth. I live remote, some 2,300 kms north of Perth.

    My initial treatment was at Royal Perth, however I am now being looked after at Fiona Stanley and I can tell you that there is a huge difference in attitude to patient's care.

    I had no confidence in the clinic at RPH. I have all confidence at Fiona Stanley. 

    I should have learnt from the 5 weeks and 3 flights that RPH had no idea where I live. Fiona Stanley organise all scans and blood tests with the followup results for the same week. It means that I am not coming and going. Cuts down on costs and time. I still whinge though. Would rather go somewhere exotic than an oncology clinic in Perth. However it is what it is.

    My very best regards to you for your treatment. Hang about here as we really are a wonderful supportive group of women who do understand the fear and disruption to your life.

    Warm Kimberley wishes to you.

    Annie

  • Trinny
    Trinny Member Posts: 9
    Thank you Annie
    That helps my wondering mind ❤
  • Annie C
    Annie C Member Posts: 849
    @Trinny

    It is one hell of an experience ( 1 I would cheerfully not had). Your mind will wander, you will be distracted. There were times when nothing else existed for me.

    Remember this is a time for you to focus on you. 

    Kimberely women are expected to be resilient, resourceful and self reliant. Those character traits made it difficult for me because all I wanted to do was sit in the corner and lick my wounds.


  • Blossom1961
    Blossom1961 Member Posts: 2,362
    @Annie C Oh dear, I am a visual person and you would have to be a cat to be able to lick those wounds, very awkward. Sorry, imagination overdrive. 🤪
  • Annie C
    Annie C Member Posts: 849
    @Blossom1961
    Ha ha, imagination overdrive definitely comes into it.

    Picture this 5'8" (178cm) tall and joints that no longer bend like they used too!

    Ah well at least we still have our imaginations. And cats are my favourite pet.
  • Trinny
    Trinny Member Posts: 9
    Thank you both x
    I didn't know about a BCCWA but would love to get intouch with them and was not aware there were breast care nurses.
    So much positive information.
    Thank you xx
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    Trinny the inbox I sent you has the links to how to find a Breast Care Nurse etc...