Upstaged

AhnnAhnn Member Posts: 9
When i joined a couple of weeks ago, i had been diagnosed with grade 3 DCIS on left breast and a small area circa 5 mm diffuse DCIS on the right. I had been to multiple mammograms, ultrasounds, MRI, 4 vacuum core biopsies and continued to work full time throughout. A mad round of waiting rooms and multiple strangers male and female poking and prodding and squeezing and compressing my breasts. Pathology results showed bilateral lumpectomy would be best course followed by radiation therapy to mop up any stragglers. On the 9th i went in for surgery and was home the same night. Still feeling a little numb but positive all was clear as I've been having mammograms on a yearly basis. Results provided on 19th with the specialist however read differently.  Left breast shows invasive DCIS 8mm across with some margins not clear on area up to 52 mm. Right breast had only identified a small area 5mm by 5mm on MRI, however lumpectomy excision was expanded twice to almost 35mm and still unable to get clear margins. Now classified as stage 1 invasive DCIS. So i go back to hospital next week for bilateral mastectomy and bilateral sentinel node excision. It's sudden unexpected and a shock. No symptoms,  no lumps and damn lucky we checked the right breast as everything had focussed on the left. It's starting to be real to me now. I've only had cancer for 4 weeks that i know of. I was at work full time 2 weeks ago.
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Comments

  • lrb_03lrb_03 Member Posts: 1,164
    edited August 23
    Hi @Ahnn, sorry to hear hat it's all been upstaged. It's not unusual for that to happen, unfortunately, as our imaging can only tell us so much. 

    I had chemo before surgery, but many of the others on this site speak of their diagnosis being upgraded after surgery.

    I certainly felt well at diagnosis, it wasn't until I started chemo that I started feeling unwell 😜

    Take care
  • primekprimek Broken HillMember Posts: 5,182
    So diagnoses now is invasive ductal carcinoma (IDC) and no longer dcis.  
    My tumor was bigger and  a different grade from the core biopsies. That's why final plans of treatment are after the removal of the tumour and testing. 
    It certainly would be upsetting with the new surgical plan. 

    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 whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 
     
    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

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

    My Journey online tool 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. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology

    http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

  • SisterSister Adelaide Hills, SAMember Posts: 4,413
    As has been said, unfortunately it's not unusual at all.  I thought mine was quite small and had not travelled and had the most beautiful lumpectomy only to be told a few days later that I had to go back in for a mastectomy and axillary dissection.  @primek has given you some good sites for information.  Try to take it a day at a time, focus on the positive if you can - you're doing what needs to be done.  We're here if you need us for info, to chat or to rage.
  • AhnnAhnn Member Posts: 9
    Thank you for your support.  I've been taking it one day at a time since diagnosis thinking it will be over soon and back to normal. I guess we're all like that and one day it will be over and suddenly it's 5 years later. I'm not relishing the next few weeks or having to advise a wider circle of friends,  relatives and acquaintances,  but after mastectomy i guess it becomes fairly obvious. 
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,332
    Fairly obvious, unless you are generously endowed before, no. I usually get around at home in only a tank top and no bra. Visitors don't notice a whole missing boob unless I tell them. I must be an unremarkable person.
  • AfraserAfraser MelbourneMember Posts: 2,564
    I was quite large and so yes, quite obvious. But a soft pad did the trick until I could get a prosthesis fitted. We are so self conscious at first, we imagine everyone is looking at us, but of course they aren’t, at least not in the ‘What’s missing’ way! Getting out and about as early as possible helped me feel normal. Stripping off in a open shower area before a hot tub in Iceland was perfectly OK too! 
  • FlaneuseFlaneuse BrisbaneMember Posts: 868
    @Ahnn All the best for your recovery.
  • ShakalkerShakalker Tamworth NSWMember Posts: 72
    @Ahnn Wishing you the best xox
  • AhnnAhnn Member Posts: 9
    I've been home now for two days, post double mastectomy and bilateral sentinel lymph node removal. Still difficult to get comfortable sleeping but a pillow under my knees has helped with lower back pain. More waiting for results of lymph node biopsies- fingers crossed they're clear. I've been told, no repetitive movement while the drains are in so no knitting,  embroidery or any other craft work.  I don't miss the washing, cleaning or vacuuming but just watching tv is boring!
  • kmakmkmakm MelbourneMember Posts: 7,626
    @Ahnn Oh gosh that is dull! I hope you can find a good book and enjoy a gentle walk to break things up a bit. Perhaps you could invite friends over to keep you company. Hang in there, K xox
  • primekprimek Broken HillMember Posts: 5,182
    edited August 31
    I ended up getting Netflix and got absorbed in a series. Once drains out at least you can get out a bit
  • arpiearpie Mid North Coast, NSWMember Posts: 3,129
    oh darn @Ahnn - that would be really annoying!! I hope you have a couple of good books you can read!!   I stocked on up videos too!

    Do you have a couple of small pillows to help support both your arms when trying to sleep?  I found the 'weight of the arm' across my body when on my side was really uncomfortable & the small 'log shaped' cushion really helped, keeping it 'level' with the bed.  Your BC nurse may be able to get you one for you?

    Take care xx

  • AhnnAhnn Member Posts: 9
    Okay I've been home a week now from hospital after double mastectomy.  Finished reading 2 books, 2 magazines cover to cover. Started 3 new Netflix series and not completed one yet. Can't manage cross stitch but i am managing crochet. Pathology results were good. Sentinel nodes are clear what a relief. I've been out twice for medical appointments and my chest just aches so much for hours afterwards! Any ideas? Most swelling has gone down, most tenderness just in underarms 
  • SisterSister Adelaide Hills, SAMember Posts: 4,413
    Good news re: the path report. 

    The underarms take some time.  The nerves get very antsy about being messed with.  I was positive that mine was red raw but the skin was perfectly fine.  I found that using some very soft padding across the area stopped any contact which helped calm the burning sensation.  It only lasted a week or so.  However, full sensation in that area may never return.


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