Advice on ceasing treatment

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  • Giovanna_BCNA
    Giovanna_BCNA Member Posts: 1,839
    Hello @Mellyb I am so sorry to hear about your mum, its devastating news.  Would you like one of our nurses to give you a call today?  kind regards Giovanna 
  • Zoffiel
    Zoffiel Regional VictoriaMember Posts: 3,362
    Ah @Mellyb we have all had a rude intro into the realities of BC. The most frustrating thing is the lack of consistency--what works for one person has zero effect for someone else. It's very cruel and contributes to the constant anxiety that many of us suffer. That old saying 'everyone is different' gains a whole new perspective. 
    On thing that is pretty constant is the need to be able to let off some steam and have a good vent about the shittiness of it all. Like many others here I occasionally use a shrink or counselor. It's a good opportunity to test drive difficult conversations in a non judgemental space where you are not going to upset people you care about and have no need to censor your feelings. You just pay to dump it all on someone who might, just might, be able to give you some tips. If you haven't investigated this option, have a think about it. Not for everyone (because everyone is different) but it helps some. Marg xxx
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  • LMK74
    LMK74 BrisbaneMember Posts: 795
    @Mellyb, great post and so true. It's what we all fear, that someday sooner or later this shit disease will return. Nursing my mother was the hardest thing I've ever had to go through but i'm so grateful we had her at home. My mum had terminal lung cancer that went everywhere.
    My heart goes out to you and your family through this difficult journey.
  • Mellyb
    Mellyb Member Posts: 36

    Patti J said:

    Hi @Mellyb. I also have metastatic breast cancer. It is in my bones and liver. My oncologist told me that my cancer was "really bad".
    What you have written about your mum is the most truthful thing that I  have read since joining this forum.
    I had taken myself off the forum for a while because I  was not comfortable.
    Thanks for being so honest.
    In my experience, so many people have no idea what metastatic breast cancer is. I am constantly asked if  I have finished my treatment.
    As for the funding! Every thing seems to be about early diagnosis and prevention.
    There is no cut off point to say that you are a "survivor". My cancer returned after 15 years. I am very fit, thin, breastfed, eat healthy food and exercise. There is nothing anyone can do to prevent a recurrence.

    Hi Patti, your post stood out to me as you're currently battling MBC with liver mets. I'm not sure if you've looked into this, but I found a radiotherapy option called 'SIRT' which is not widely known, actually we weren't even told about it by our oncology team, I just stumbled upon it through research.

    As it is considered experimental for secondary cancers it's not covered here in Australia and costs about $7-$10k. What it involves is inserting tiny beads of radiation into the tumours inside your liver. They go in through the groin, through the main artery and locate the vein leading to the tumour to place the beads. It's a slow release radioactivity and apparently you're awake when they do it (like having an angiogram done for your heart) and the side effect profile is well tolerated.

    In the research papers I looked at there's been great success overseas. However you need to meet a set of criteria to be eligible. Generally you need to have low disease burden elsewhere in the body and the tumours in your liver need to be clear and identifiable to access. 

    I sought advice from a radiologist who does the procedure at Prince of Wales. At first it seemed mum could be a candidate but unfortunately her liver got out of control. It's diffuse with tiny scattered cells throughout both lobes, they just can't treat that with this therapy sadly. Also as mums cancer is growing fast, the slow release radiotherapy which works over 3-6 months really was futile. So no good for us. 

    But it might be something you could look into and see if it may help you. Everyone is different and presents differently.

    I do understand how you feel with the recurrence. My mum is and always has been thin, eats well, looks after herself. You're right, nothing seems to stop it. 

    Best wishes Patti and thanks for writing xx 
  • iserbrown
    iserbrown Regional VictoriaMember Posts: 5,248
    Oh Aggie!  Not sure where you are at with treatment however I sense your frustration in your post above but I do take umbrage in part of what you said - "...'Early' detection is a fiction, merely a call-to-action to the layperson to participate in screening programs..." to me this comment is a little harsh.  Isn't  this about awareness and having it caught before it becomes mets?  We are all entitled to a view but we are not here to upset those that are just starting out!
    Mammogram for me in 2013, no indication, 2015 and it is a 60mm tumour but contained to the breast.

    Mets is a bloody awful thing and I've watched both Mother in law and Mum lose the battle with mets - BC was not in the equation.

    Please take care and know there's support here for you and others
  • wendy55
    wendy55 Copper Triangle South AustraliaMember Posts: 753
    @kmakm, the conversation has started,!!
    thank you, for putting this up, 

    wendy55
  • kmakm
    kmakm MelbourneMember Posts: 7,974
    @wendy55 I won't say my pleasure, but perhaps I'll say my passion. My sister and I had more than one conversation along these lines before she died. The numbers are just increasing so fast, it's an avalanche gaining pace and we just have to do something different in response if we're going to improve outcomes. K xox
  • JJ70
    JJ70 FremantleMember Posts: 983
    Hi All. @kmakm - yes only 15% of women respond to the first invitation letter at 50. I was gobsmacked to learn this stat on Monday (direct from Medical Director of BreastScreen WA)
    Mammograms are free from 40 Kate, not 45 and yes, the mortality benefit of screening in 45-49 year olds is way up at 30% (second only to 60-64 year olds at 37%). Pop that into a '20% of breast cancers are found in women 40-49' context and add that they are usually more aggressive, does make me wonder quite seriously... WHY ARE WE NOT SCREENING AT 45!! (We also need to take into account that 20% is a FALSE LOW. Those ladies getting a positive diagnosis in their early 50's may have found their BC in their late 40's had they been invited to screening)
    Under 45, mortality benefit drops right down to 7% - due to a combination of lower incidence of BC and breast density (ineffectiveness of mammogram to find the BC). There are aslo high false positive rates under 45.
    Data tables below:

    (source: BCNA Age group (years)

    Number of Australian women
    diagnosed 

    % of all women diagnosed *

    Younger than 20

    1

    Less than 1

    21 to 29

    65

    Less than 1

    30 to 39

    705

    5.2

    40 to 49

    2,437

    18

    50 +

     10,359

    76.4