Waiting to set up surgery feels worse than purgatory

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  • kezmusc
    kezmusc Member Posts: 1,544
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    Hi @mericelle,

    The waiting is a pain.  Unfortunately the whole shebang with BC is full of endless waiting and waiting.
     My first surgical appointment was 1wk after diagnosis.  That was pretty quick but there were  nodes involved so they moved along a bit. 
     I had 1 month from diagnosis to surgery, most of that my choice because I wanted a lumpectomy and we couldn't find the darn thing.    It wasn't going to do much in a month and according to the surgeon it was slow growing and had probably been there for years so we had time to look for it. 
    Everybody is different and surprisingly I was not one of those people who had to "get it out straight away". I felt fine, I looked fine and was more than content with having a month to get my head around things before starting the process.
     
    Breast cancer is a very busy business. All BC referrals are category 1 straight up, however, an aggressive stage 3 cancer will be moved up the list before a less aggressive stage 1 etc. 

    How is your mother going?  Does she know how anxious you are?  Have a good chat and see where she's at with the whole thing.  
      Take a deep breath.  This thing is one step at a time, sometimes one hour at a time.
    All the best lovely.  She'll be ok.  Promise.
    xoxoxox 

  • mericelle
    mericelle Member Posts: 13
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    kezmusc said:

    Hi @mericelle,

    The waiting is a pain.  Unfortunately the whole shebang with BC is full of endless waiting and waiting.
     My first surgical appointment was 1wk after diagnosis.  That was pretty quick but there were  nodes involved so they moved along a bit. 
     I had 1 month from diagnosis to surgery, most of that my choice because I wanted a lumpectomy and we couldn't find the darn thing.    It wasn't going to do much in a month and according to the surgeon it was slow growing and had probably been there for years so we had time to look for it. 
    Everybody is different and surprisingly I was not one of those people who had to "get it out straight away". I felt fine, I looked fine and was more than content with having a month to get my head around things before starting the process.
     
    Breast cancer is a very busy business. All BC referrals are category 1 straight up, however, an aggressive stage 3 cancer will be moved up the list before a less aggressive stage 1 etc. 

    How is your mother going?  Does she know how anxious you are?  Have a good chat and see where she's at with the whole thing.  
      Take a deep breath.  This thing is one step at a time, sometimes one hour at a time.
    All the best lovely.  She'll be ok.  Promise.
    xoxoxox 


    Thank you for sharing your experience. My mum seems fine but I am conscious that she might be much more anxious than she is letting on, which is why I’m so keen to push things along for her and get the treatment started as soon as possible. I guess I’m afraid of having a totally open conversation with her about our feelings because I don’t want her to see me break down. I want her to know this is a totally manageable situation and that we can make it through this. But thank you for your advice.
  • Glynnis
    Glynnis Member Posts: 353
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    @mericelle I had a wait of about 3-4 weeks in private hospital, Christmas got in the way, my son who had testicular cancer waited 3 weeks in public system
  • jintie
    jintie Member Posts: 114
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    Sorry to hear about your Mum.  The wait is annoying, but know this.... she has the lowest grade, which means that it is not as aggressive which is a good thing.  This may be why they are not in as much of a hurry to move things along.  She will be seen.
    How is your Mum feeling?  
  • mericelle
    mericelle Member Posts: 13
    edited December 2019
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    @Chev thank you for your reassurance.
    My mum seems okay but I think she’s more stressed and upset than she is letting on. It’s an Asian thing - if you’ve watched the (fantastic) movie that just came out this year called The Farewell, you’ll know what I mean. Thankfully she and my dad are very close and I suspect she’s been confiding in him more openly.
    I’m afraid to show any weakness to her too because I want her to find strength in my calmness. Breast cancer at this stage is very treatable and I guess I want to keep reminding her that by treating the matter with composure.
  • mericelle
    mericelle Member Posts: 13
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    Glynnis said:

    @mericelle I had a wait of about 3-4 weeks in private hospital, Christmas got in the way, my son who had testicular cancer waited 3 weeks in public system

    Thank you for sharing, @Glynnis
  • mericelle
    mericelle Member Posts: 13
    edited December 2019
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    For future reference for anyone who may seek answers in relation to this thread:
    The hospital has finally booked my mum in for surgery. This will eventuate in a wait time between diagnosis and surgery of 2.5 weeks (which I am more than happy with). She’s going to Peter Mac in Melbourne but as a private patient.
    The key source of concern for us was that we were being told conflicting information by both the clinic and hospital. We were to expect that everything would be sorted within 1-2 days after diagnosis but we didn’t hear from anybody. Upon calling up the hospital, we were told that our referral has not even been received yet from the clinic. But the clinic had told us that they’d sent it right away on the day of diagnosis. This caused a painful panic for us and I spent the next two sleepless days phoning between the hospital and clinic to follow up, with no results and only more conflicting information to add to the pile. Eventually we went to see the clinic in person this morning and they were able to sort it out for us.
    What I learnt from this experience was that these places (at least the ones I dealt with) are not very transparent and perhaps tend to tell you little white lies or feed you speculation to try and temporarily get rid of you. I’m sure my mum’s referral would have been sorted out eventually, but how soon, I really don’t know.
    My advice is that if you’re not being kept up to date or openly informed about the process, go to the clinic/hospital in person and push for answers. Sometimes you need to make yourself heard.
  • Afraser
    Afraser Member Posts: 4,388
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    Being your own (or your loved one’s) advocate is usually a good idea. We’d all be happy if cancer hospitals and clinics were mainly empty and everyone had heaps of time but sadly that’s not the case. When in doubt, I usually select a bit of incompetence over conspiracy. Happily I haven’t come across much incompetence. Mainly just overstretched people doing their best. That pretty well covers the patients too! Best wishes. 
  • mericelle
    mericelle Member Posts: 13
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    arpie said:

    So Sorry to hear of your Mum's diagnosis @mericelle     - it is good that you are going to be good support for her!  It is good that it is early stages & fairly small .... those things are in her favour. 

    The 'wait time' varies on so many different things - are you rural?  That alone can impact things (maybe if you pop your Mum's city/town name in your profile, local members may be able to point you to specific agencies that may help her further down the track?)

    I am rural & my lump was found in early Nov 2 years ago. By the time I had the extra mammogram & ultrasound (the mammogram 4 months earlier didn't 'find' the lump!) and then the Biopsy - it was after Xmas.  Then the wait for the results for the Biopsy - it was Jan 5 before it came back positive - and of course all the surgeons were still on their Xmas break!  So I finally saw a surgeon in Sydney in mid Jan & had the surgery (lumpectomy) 2 days later, and only in overnight.  Mine was maybe a tad bigger than your Mum's - and I was AMAZED at how 'good' I felt after the surgery!  The pain or discomfort wasn't 'massive' - just make sure she takes the painkillers as advised .... there is no point being 'stoic', when in pain!

    The waiting really mucks with your brain more than anything else - I suggest that you both keep REALLY BUSY doing what you love doing (I just went fishing every day!  LOL)  

    All the best - I hope you get a 'surgery game plan' soon - then it all depends on the pathology after the surgery as to what the next steps are.

    take care xxx

    Thank you for sharing your experience @arpie. Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that the cancer could be worsening and spreading over such a long period of time would kill me.
  • arpie
    arpie Member Posts: 7,687
    edited December 2019
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    No  @mericelle - I don't think it advanced my cancer at all (altho in my head, I thought it was, every day!!)  I wanted it OUT OF THERE STRAIGHT AWAY - and to be honest, was prepared to pay extra (in the gap fees of about $4000 for the surgery alone even tho I had private health care) to get it taken out ..... and still thought I was lucky in having the surgery done within 2 weeks of 'actual diagnosis' in early Jan - even tho the lump was found back in the previous Nov.

    Trust in your Mum's team - they will be analysing her results & deciding on the best options for her.  The earlier it is detected, often, it is the better long term result.

    It is tough being on the 'support team' - my husband was diagnosed with an aggressive stomach cancer in 2010 that can have adverse results in 75% of cases - but he was the lucky one - and still here, 10 years later!  

    All the best with your Mum xx  Try not to 'over guess' the results - that will depend 100% on her pathology, after the surgery  xx