Here we (I) go

cactusk
cactusk Member Posts: 70
edited December 2023 in Newly diagnosed
Diagnosed ductal last week - lumpectomy tomorrow.
feeling sad but relieved & nervous & a bit scared. Likely radio or hormone therapy after - we’ll see.
reading these threads I know I’m not alone, even though I’m by myself right now.
onward , right?
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Comments

  • arpie
    arpie Member Posts: 8,081
    Sorry to see you join our exclusive little club, @cactusk .... but then again, none of us ever thought we would either :(   Your emotions are 100% natural - you'll be surprised how relieved you will feel AFTER the surgery, too, just knowing it is GONE! xx

    Let us know how you go after your surgery (on this thread) and it will become a sort of 'diary' - ask any questions & we'll do our best to answer them for you xx. We've 'been there, done that' .... 

    All the best for your surgery today - make sure you take it easy after you get home from the surgery - no housework, lifting kids/laundry/anything .... and I would suggest sleeping with a small cushion under the arm  on the side of the surgery (and hug it on the way home, to avoid bumps on the road. ;) )

    Check out this post, for lots of info on the forum - you can show off your furkids, gardens, art & craft - and even have a laugh.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care, all the best - sending big cyber hugs xx
  • cactusk
    cactusk Member Posts: 70
    Thanks Arpie
    appreciate the support. I CAN do this.
    💪
  • cactusk
    cactusk Member Posts: 70
    Feeling relatively ok, albeit aided by post op painkillers. Have follow up with surgeon next week to hear the pathology of 2 sentinel nodes, and discuss treatment plan. Surgeon has suggested US onco type testing - it’s expensive. Has anyone done this? Means more waiting for results (3 weeks but could be more given time of year) but potentially more knowledge and therefore better planning for chemo / radio / hormone therapy. It’s starting to sink in that this is definitely a marathon, and the surgery was just the beginning.
  • arpie
    arpie Member Posts: 8,081
    SO Glad you are home again @cactusk & recovering well xx Yes, it is a bit of a marathon .... 

    Quite a few members have had the test and can vouch for it.  It IS a bit exxy, but knowing for sure whether chemo would be beneficial for YOUR treatment (or not) would be a bit of a relief to know.  Also, they can more accurately advise on the likelihood of recurrence. 

    Absolutely, Knowledge is Power xx 

    The Onco type/Genome analyzes a sample of a cancer tumor to see how active certain genes are - and may narrow down treatment options - or advise no chemo at all.

    In the past, many women may have had chemo & may not have actually 'needed it' .... 

    Eventually, it 'should' be covered by medicare, as it is a useful diagnosis tool, that prevents unnecessary (and expensive) treatment being given, when it is unlikely to have any real benefit for the patient.  
    https://www.breastcancer.org/screening-testing/oncotype-dx

    If you put 'oncotype test' in the search area, you'll have lots of bits to check out ;) 
    https://onlinenetwork.bcna.org.au/search?domain=all_content&query=oncotype test&sort=-dateInserted&scope=site&source=community

    take care & all the best xx
  • cactusk
    cactusk Member Posts: 70
    3 sleeps till follow up with breast surgeon & pathology of 2 sentinel nodes. I’ve only shared my current status with those close to me, but a friend told a friend, who have come to me with the dreaded ‘should’ advice. Along the lines of ‘FWIW my friend had BC and she went vegan and blah blah & she’s well…’
    I totally understand he’s coming from a place of care & love, and I absolutely acknowledge lifestyle factors & influence on recovery & assistance during treatment, but everyone is different (personal health, family history, age st diagnosis etc) how do i tell him his advice is just not helpful right niw? What works for 1 person may not for another? Last time i had cancer (1997 - thyroid) there were many ‘helpful souls’ sharing what worked for their friends,
    it’s my health & my journey, and whilst i welcome support, i just cant cope right now with the ‘you should’ brigade.
    How do others deal with this? Is there a calm way to say ‘please dont’ - given calm is so far away from my current basket of feelings? (Scared, angry, fatigued, trying to be kind to myself, balance between wanting to hide & wanting to just keep going as i am really well, apart from the large wide incision on the right breast and unknow treatment regime to be revealed & understood & planned for)
    arghhhhhh!!!!
  • jennyss
    jennyss Member Posts: 2,072
    Dear @cactusk,

    from jennyss in Western NSW
  • cactusk
    cactusk Member Posts: 70
    Exactly @Afraser !
    my medical team and i will figure the best wsy forward for me to get well & stay well.
    you’re right - arguing is pointless & so not where i want to spend my energies right now
    thank you for reminding me it’s ok to say no.
    thank you 🤗 
  • cactusk
    cactusk Member Posts: 70
    Update:
    both nodes showed activity - 1 micro- and 1 macrometasteses
    MDT had differing views - 2nd surgery option was considered but now chemo to begin in January 
    I’m meeting both med onc and rad onc this week.
    will be back here to read others experiences when I know likely chemo regime
    i’m weirdly not scared. At the moment.
    Surgery scar is healing but still pretty tender. Can’t wait till I can swim again - my stress release, exercise & happy place.
    also meeting with an oncology exercise physiologist to get an exercise plan sorted.
    anything else I can to do prepare body or mind for chemo?
  • arpie
    arpie Member Posts: 8,081
    Shame that activity has shown in the nodes @cactusk ..... but you DO now have a work plan .....

    I would suggest you Use your phone to record your appointments with both Medical and Rad Oncs .... so you can go over it again at home, if you wish.  It is easy to miss bits at the time, as you ponder one thing that was said, missing the next bit! xx. Take a trusted family friend or relative with you too, for added support & an extra set of ears!

    Without knowing which chemo you'll be on, it could be tricky to comment - other than saying not EVERYONE has nasty side effects, and hopefully you won't either xx. Most feel some fatigue tho.  Many have worked thruout their chemo with no real issues!  Not everyone loses their hair either (ask about the Cold Cap next week - and if your mix causes loss of hair?)

    Drinking lots of water will help flush the chemo out of your system ... eat as well as you can & if up to it, maintain an exercise program xx

    In the mean time, just get out there & enjoy your Xmas & New Year with family & friends xx 

    Take care
  • cactusk
    cactusk Member Posts: 70
    Thanks @arpie,
    I have a friend who is coming to all appointments with me and takes notes. Her and I then transcribe these into a diary that we are keeping of the whole ‘journey’. Recording the consultations is a good idea.
    crazy list of appointments this week but yes, there will be a plan for the start of 2024.
    Hope you have a good Festive few weeks too
    kelly
  • arpie
    arpie Member Posts: 8,081
    Take care & all the best for your appointments @cactusk. xx
  • cranky_granny
    cranky_granny Member Posts: 880
    edited December 2023
    @cactusk enjoy Christmas and new year. I hope your treatment goes smoothly Chemo isn’t like it was years ago where one size fits all and things can be adjusted if needed. 
    As for the unhelpful friends I just changed the subject as best i could if my bodyguard wasn’t around. The one that got me the most after initial treatment was finished was oh i thought you were over all that cancer stuff. Some people are just clueless. I found my cancer really has sorted out the real friends. They’re the ones that said  how can I help not come out with a pile of dribble. 
  • Pommy8
    Pommy8 Member Posts: 135
    Did you send your biopsy to America?
    I'm 59 sent mine off money well spent but like anything no guarantee it came back would not benefit me xhemo.
    But had radiation and now hormone tablet so far so good.
    A few hiccups but those 2 things fine.
    Good luck 
  • cactusk
    cactusk Member Posts: 70
    MAJOR FRUSTRATION 
    met with Radiation oncologist today - who disagrees with the surgeon.
    suggested another surgery MAY be better given 2 sentinel nodes showed cancer
    still waiting to see medical oncologist later this week.
    also fears my radio-therapy will be ‘interesting’ given previous thyroid cancer.
    aArghhhh!
    I know the MDT need all the information but the indecision over next steps is getting to me.
    we are now facing 2 treatment issues- breast and axilla/nodes.
    talk about rollercoaster