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Uncertain diagnosis

Laura_AnnLaura_Ann Canberra Member Posts: 14
edited March 2018 in Newly diagnosed
hello. I have been diagnosed with cancer, but they are taking what feels like an eternity to determine the type of cancer (most likely breast). This is the timeline of my lump.

Wed 21 Feb 2018 - found lump underarm

Thurs 1 March 2018 - Had lump examined by GP. Referred for ultrasound with FNA/mammogram if warranted. But told it was likely a reactive lymph node and could wait a week or so to see if it would go away on its own.

Friday 8 March 2018 - lump still there. No bigger, but no smaller. Make appointment for ultrasound.

Tues 20 March 2018 - Ultrasound and FNA - suspicious spot seen on ultrasound at 3 o’clock in addition to lump.

Friday 23 March 2018 - cancer diagnosis - unknown type - -ve for P and E - lump could be cancer filled lymph node or primary medullary tumour -pathology requested core biopsy for clarification.

Friday 23 March 2018 - mammogram to look for spot seen on ultrasound - clear

Tues 27 March 2018 - core biopsy on underarm lump

I saw my doctor today and she said that she can’t make an appointment with a surgeon or oncologist until the core biopsy results come back this Thursday, and it will likely take two weeks before I will get an initial appointment! This seems crazy to me. I am 32 years old, meaning my cancer is likely to be more aggressive and is possibly in my lymph nodes. I thought they would be rushing to have everything figured out.

How long has it taken others between initial diagnosis and their first appointment with a specialist? 
I am going through the public system in Canberra. Should I have a breast cancer nurse to advocate for my treatment?

thanks for reading, if you got this far!!
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Comments

  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,410
    hi @Laura_Ann
    it can seem crazy the time it takes for different things to happen when we are first diagnosed. 
    I got diagnosed 6th Sept 2012 saw Surgeon late sept surgery 25th October...in November I found it was Triple negative

    See if you have a local breast care nurse I put the links below. 
    Do you have a My Journey Kit? 

    Ask any Questions we will help you navigate the way ahead. 

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.


    Soldiercrab


  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,410
    @Laura_Ann there is also a Young Women's group on here 

    http://onlinenetwork.bcna.org.au/group/10-young-women 
  • Laura_AnnLaura_Ann Canberra Member Posts: 14
    @SoldierCrab Thank you. The waiting is so very frustrating, but I guess it is about right. I have just emailed a breast cancer nurse who lives near by to see if she can help in any way. 
  • cecilycecily Member Posts: 20
    Hi Laura_Ann. I am so sorry to hear of the traumatic time you have had over the past few days. I can imagine that you must be very anxious about the situation you find yourself in at present. All of us on this forum have experienced the sick feeling that comes with an unexpected cancer diagnosis.  The delays that you are experiencing are VERY common. In fact it is entirely normal for the fna and core biopsy results to take 2-4 days and often much longer if it is an unusual tumour. Mine took at least that long, and this was in the private system in Sydney. The waiting is terrible and it’s hard not to imagine the worst in that time. Many women who are first diagnosed imagine that the cancer is spreading in the time that it takes for the results to come back and for our appointment with the surgeon to eventuate. This is not the case. For many women there is a long gap between diagnosis and treatment and this does not appear to impact on prognosis at all. The waiting is the hardest part. Jump back on the forum for support whenever you need it. We’re here for you. 
    X Cecily. 

  • kmakmkmakm MelbourneMember Posts: 7,974
    edited March 2018
    Hi @Laura_Ann. I'm sorry that you find yourself here. The beginning of this event is dreadful but you'll get through it and the panic will ease. Waiting is the worst. Hang in there. For what it's worth, here is my initial timeline:

    3/11   Routine mammogram
    23/11 Recall email
    27/11 3D mammogram, ultrasound, biopsy
    4/12   Diagnosis
    5/12   Surgery

  • lrb_03lrb_03 Member Posts: 1,260
    Hi @Laura_Ann. I'm going to send you a pm.
    It's a confusing time
  • SisterSister Adelaide Hills, SAMember Posts: 4,960
    @Laura_Ann The waiting is so hard but you will get a plan from it.  Come back online when you need support or information.
  • jennyssjennyss Western NSWMember Posts: 1,591
    Dear @Laura_Ann , Yes, a confusing and frustrating time. I can see you've got some good links and info above. Before I was diagnosed with breast cancer, I had no idea that there were different types and grades which then bring different treatment options. I hope your breast care nurse will be good value, pulling things together and explaining info. Lots of knowledge amongst the network  here too. Best wishes from jennyss in Western NSW
  • kezmusckezmusc Member Posts: 1,544
    Hey @Laura_Ann,


    The waiting and endless waiting going through this seems to be an eternal cloud of fog.  
    It is, unfortunately, the nature of the beast I guess. Hopefully one day the results will be quicker.
    I also went public. I was 45 at time of diagnosis.

     A bit of a timeline for you.  This all would have been a bit quicker if I had opted for mastectomy instead of lumpectomy.  It would have brought it down to about 2 wks from diagnosis to surgery.  Definitely get on to a breast care nurse to help you through.

    Initial mammo and u/s  after finding lump under my arm. Mid Sept. Mammo clear, breast u/s clean. U/s Lymph node suspect.
    FNA the following week Wednesday 28/09/16 of l/node
    D Day with results Friday 30/09/2016
    Appointment with surgeon following Friday
    CT and Bone scan on Tuesday.  Results back 48hrs.  Clear.
    Round 2 mammo & u/s looking for primary tumour the following Wednesday.  Came up clear.  WTF
    MRI following week.  Results 48 hours.  Found the bugger
    Another damn mammo, u/s and Core biopsy the next Tuesday.  Results 48 hours.  Came up as normal breast tissue.  They had missed it.
    Core biopsy number 2  The next Wednesday 28/10/16 with a different doctor.  Got it this time.
    Hook wire insertion, mammo number 4,  lumpectomy and level 2 aux clearance surgery Friday 30/10/2016.
    Histo pathology back in 48hours
    Final daignosis.  19mm breast lesion "of no particular type + DCIS.  25mm lymph node lesion. Stage 2 grade 2  ER/PR + @ 90% HER2- with 5/24 lymph nodes positive 
    Re excision for clearer margins 7/11/2016

    That was one seriously long and busy month. But, we now had a battle plan.

    So all up from finding the lump through to surgery was about 6 weeks.  
    Keep in touch, we all "get it" and are here to help you through.

    XOXOXO



  • Laura_AnnLaura_Ann Canberra Member Posts: 14
    Thank you all for your support and advice.
    I received the biopsy results today. The lump is a lymph node filled with breast cancer. I have to have an MRI this Tuesday to try to find the primary before seeing the breast surgeon the following Tuesday. 
    Still slow going, but at least I know a bit more now.
    One more question - my GP suggested that they seem to be doing chemo before surgery now. I’d much rather get it out of me as soon as possible! Do we get a say in our treatment order at all?
  • Molly001Molly001 Member Posts: 419
    @Laura_Ann at least you now know what you're dealing with. Breast cancer attracts a lot of funding for research, so a lot of very effective treatments are available to us diagnosed, so that's something, I suppose. Still not what you want to be told. As for chemo/surgery it seems they are opting for chemo first in many instances. Ask your treating team what the reasons are for this in your case. If you're not happy with their answer tell 'em. It's your body.
  • kmakmkmakm MelbourneMember Posts: 7,974
    @Laura_Ann A rotten result but good to know. Finally! Your breast surgeon will advise you on order of treatment once the primary is found. That really dictates what happens next. There may be some wriggle room but you won't know until you see the surgeon and/or oncologist. Mine was whipped out the day after diagnosis. Incredibly fast, but I just wanted it out of me asap, so I get that feeling. Hang in there. It gets a bit easier once you have a treatment plan. K xox
  • primekprimek Broken HillMember Posts: 5,392
    My niece found her node first and they never located her breadt timors until mastectomy. She had 2 minuture cancer areas obe was kess than 1mm and one was 1.9 but she had 10 positive nodes out of 20. She is 15 years cancer free now. She was around your age at diagnosis. 

    Yes some people they recommend the chemo first and this way they can monitor  response to it. Know that your team will discuss the best options for you based on experience and clinical trials. I hope you have a treatment plan soon. Ket ys know how it goes. Kath x
  • Laura_AnnLaura_Ann Canberra Member Posts: 14
    Just an update - it feels like things are finally moving! 
    I met my breast surgeon and oncologist this week, and have been booked in for surgery in 3 weeks time on 4 May. I will have 3-4 weeks to recover before starting 18 weeks of chemo followed by 5-6 weeks of radiation, and then hormone therapy.
    Is is so good to have a plan in place!
  • primekprimek Broken HillMember Posts: 5,392
    Yes...it's  a relief to have a plan. Now you can prepare as best you can  for each step. 
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