Another sister reporting for duty

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lindaandchris
lindaandchris Member Posts: 1

Hi all

I’m Linda, a 54 yo from the Barossa Valley in SA, a wife, mother to 5 humans and 1 furkid, a lover of all things Disney & Robbie Williams and living with a fairly new diagnosis of DCIS. 

Historically, I’ve had 3 lumpectomies previously between 2003-2015 and been having regular mammograms since. In late January 2024 I had my 2-yearly mammogram, no symptoms although I did tell my husband I had a bad feeling on the day. Four weeks later I got a call from BreastScreen SA asking me to come in for further testing on an area that looked a little abnormal but likely to be benign calcification. The following week I attended my appointment and had further mammograms, an ultrasound and a very uncomfortable core-biopsy. Two days later I attended the results clinic with my husband where we were told the pathology came back malignant and I had Grade 3 DCIS. It was not what I expected to hear. Within 24 hours I’d seen my GP for a referral, seen a private Breast Surgeon and had a date for surgery (hookwire and wide local excision). Surgery was done on 08/03/2024. 

Side note - I’m a Clinical Nurse and a very empathetic, supportive and caring person who has cared for many patients in my career including providing palliative care to a dying friend so he could die at home in the arms of his wife. I’m also resilient when required but make no mistakes, I am a hot mess right now. I’m a practical person who likes facts, likes organisation and control of my life so this waiting period between surgery and my post-op appointment (scheduled 22/03/2024) with my surgeon to get my pathology results is challenging me, draining me and playing merry hell with my emotions. 

Although I don’t know what I’m dealing with until I receive the pathology results and I appreciate there are such worse BC diagnoses than mine, so I sincerely hope I’m not offending anyone else, but I can’t help but question my mortality. What is wrong with me? 

Working in the Theatre sector as a Clinical Nurse gives me the advantage of knowing inside information on which health practitioners are considered top of their industry. So I know I chose a great Breast Surgeon but my over-active mind is wondering why he hasn’t done a CT scan, PET scan or bone scan to check me out thoroughly. I’ve had no blood work done. I lost 25kg in 3 months late last year which was attributed to an IBS diagnosis, but what if it’s related to my cancer? 

I have no family history due to being adopted. 

I reached out to the local McGrath Breast Nurse several days before surgery and was told I’d get a house visit my first week home - that was last week and I’ve heard nothing. No follow-up call, nothing. I know it’s only DCIS but I’m screaming out for support and I can’t talk to my friends about this - it’s just repetitive and often a very draining conversation. Sadly, I have a very fractured relationship with my mum so am getting next to no support or acknowledgment from her so it’s just all a bit heavy and dark for me at the moment. What I’d give for an “I love you” from my mum! 

I’m guessing that come Friday that I may start to feel a little less lost and vulnerable as at least decisions can be considered once the pathology is known. Am I right? 

All of this is overwhelming as heck to me and I’m not sure what I should be asking at my appointment on Friday. You don’t know what you don’t know!! So any guidance is gratefully received. 

In closing, I’m sending each and every soul the squeeziest of hugs and best wishes for a positive day. 

Thanks for reading my blurb! 

Linda xx :(

Comments

  • Mareealso
    Mareealso Member Posts: 34
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    Hi Linda, so sorry to hear you have joined us, but hang in there as there is lots of support on this group. My experience has taught me to be very assertive about my health care and be a strong advocate for what was planned for me . I met the McGrath nurse when I met the surgeon and, going forward, most of my contact has been by phone..they are extremely short staffed in some areas. There will be some people on here who have more experience with DCIS-I had a small one but also had a larger tumour which was invasive and that became the primary focus for treatment.  Not sure if you are going through the public system or not as that sometimes plays a role on appointment times...keep a diary!!!  I think it's being out of control that is really difficult at times so my days became focussed on events for that day that I was in control..Wishing you positive thoughts and hope things become more settled..
  • jennyss
    jennyss Member Posts: 2,003
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    Dear @lindaandchris,

    from jennyss in Western NSW
  • Cath62
    Cath62 Member Posts: 1,364
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    Hi @lindaandchris, welcome to our exclusive club. It is so overwhelming at the start of all this. I have a nursing background and sometimes that knowledge is good and sometimes it's scary. It's great you found this group as it is so supportive. Step by step is the way to go and keep advocating for yourself. Best wishes 
  • Tri
    Tri Member Posts: 69
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    hi @lindaandchris sending you big virtual hugs. The practical you is still coming through (ie those excellent questions you raise about PET etc) so I hope you feel you can keep sight of this practical and smart part of who you are for your meeting with the breast surgeon. 
    Having said that, how you feel during this window of uncertainty and “what if” thoughts is scary and like @Mareealso says it’s a dread and an emotion we probably all relate to. 
    Echoing @Cath62 - it’s one foot in front of the other for today and tomorrow. Thinking of you and best wishes for Friday. 

  • AllyJay
    AllyJay Member Posts: 955
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    Hi there @lindaandchris...I'm sorry you've had to join our club, bur welcome. I think you're right that the ball won't get really rolling until the detailed (as opposed to preliminary) biopsy results get in. If the further tests you would like to have done, such as c.t., bone scan, breast mri etc are not ordered...then stand your ground and insist. One thing I've learned in my own case and also my husband's (recent heart transplant) is to put on your "bitch hat", as I call it and make it plain to whoever that you are not happy. They might have a perceived rather cavalier attitude, but you don't. You have concerns, and you want them addressed. This whole shitfest is scary, for sure...nothing like The Grim Reaper giving you a tap on the shoulder, to get you going. We're quite an eclectic lot in this group and I'm sure you'll get a lot more replies and suggestions as well as support. Big hug...Ally.
  • arpie
    arpie Member Posts: 7,801
    edited March 19
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    So sorry to see you here, @lindaandchris ... but you are in the right spot for support and information from those who've 'been there, done that'.   Everyone's experience is totally unique & the accounts you read here will hopefully smooth the way for your own experience.   I hope you are recovering well from your surgery xx

    Given your previous lumpectomy history, I am surprised that your surgeon hasn't already organised the CT/PET/Bone scans ... it would definitely be worth chasing him up on that on Fri - specially with your significant weight loss as well. xx   It is all relevant to your diagnosis xx

    Coming from a nursing  palliative care background - you would probably expect to not be as 'messed up' as you say you are - but as you say, facing your own mortality has shaken you, as happened with all of us.  This disease really does muck with your brain even more than your body xxx.  So don't be afraid to look at getting some counseling xx

    If you can, take the time to listen to the Charlotte Tottman Podcasts on her BC 'journey' ... she is a BC psychologist who had a double mastectomy (choosing to remain flat) in 2018 - so she 'gets it' ... and her podcasts are really helpful.  She has a very easy & natural delivery .... click on this link & then click on 'view all tracks' .... and start listening to No 13 - D Day (the first episode of the first series.)  You can also pick & choose which ones you want to listen to .... 
    https://soundcloud.com/search?q=charlotte tottman

    I hope you hear from your Breast Care Nurse soon - maybe message her again? xx

    Take care & all the best for Friday - hopefully once you have your 'game plan', you will feel more settled. xx

    Consider recording the meeting on your phone, so you can go over it again later, at home.  It can be difficult to remember everything that was said at the time - so having the recording as 'back up' is handy.
  • Afraser
    Afraser Member Posts: 4,392
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    Dear @lindaandchris

    Questioning your mortality is a perfectly normal reaction! It’s just that mainly we don’t. So it comes as an unwelcome shock when we do. Part of western culture is to keep any concept of the limitations of our life span as distant as possible. Other cultures may do
    it better. When your treatment is well advanced, and you are feeling confident again, it’s worth examining how we look at life and death and how you, as a practical
    person, handle that inevitability. 

    In the meantime, take one day at a time and I hope you have your treatment plan soon. Best wishes. 
  • MrsMorrisey
    MrsMorrisey Member Posts: 83
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    I’m a nurse too and what we’ve seen isn’t anything the same as your own diagnosis. 
    I think as nurses we feel we can do something to help but with our selves we are at the mercy of others. My drs certainly worked out I was a nurse by the questions I asked. 😂
    I was a mess too. There is nothing like a BC diagnosis to make you feel helpless. 
    However you  still have the ability to give your body the best chance by listening to what the drs say and applying your own knowledge
    I didn’t have bloods taken  either, when asked they said they would’ve checked during pathology 🤷‍♀️
    Can you ask for a CT? I had CT and bone scan right after diagnosis. 
    You’ve done this before, remind yourself you can get through this again.