Home Metastatic breast cancer

Video re Mets BC .... EVERYONE needs to watch it



  • iserbrowniserbrown Regional VictoriaMember Posts: 5,208
    That's no good having an Onc that didn't give a stuff!
    Was the Onc part of the team?
    I am a private patient and everything has been very good.  My first Onc appointment was within quarter hour of seeing breast surgeon and we didn't have an appointment prior. As time has gone on I can see they accommodate accordingly, especially if like me you are not in suburbia 
    Best wishes for your review and your 'new' Oncologist 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    Thanks @iserbrown  ... I guess we can’t get on with everyone in this world .... and he is one of the few!!   He is part of the Taree public system.  Very disappointing.  I don’t think there are private ones up here.   Funny thing .... Keith’s Port Macquarie Onc back in 2010 was a cold fish as well.  

    I saw him initially after rads, then I saw a lovely compassionate Sth American lady (who was still being accredited) who was ‘under him’ ... she was the one who swapped me from Letrozole to Exemestane after listening to my problems.  So I was expecting to see her from then on, but was swapped back to him.  I saw him the next 2 times and he hadn’t even read my notes or knew my history. In and out in 5 mins last Nov, Pooh poohing my pain and problems ... ie put up with it....  I felt I was wasting his time.

    So my latest referral is with the lovely one!!  She will be opening a local office too aparrently!  

    Mt Rad Onc had high praise for her and I have to agree.  

  • iserbrowniserbrown Regional VictoriaMember Posts: 5,208
    Where's the compassion?  They study it they must understand the side effects and how hard it is for our bodies to adjust and metabolise accordingly!  He must've missed the patient compassion class! Lol!  
  • SisterSister Adelaide Hills, SAMember Posts: 4,960
    I remember a number of years ago the University of Adelaide introduced an interview as part of the medical entrance criteria to determine whether students could actually talk to people.  There was a massive outcry - how dare they stop our smart students from doing medicine.  I can't say that I know what the ongoing deal or outcome has been, but when you meet some doctors, it makes perfect sense.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    edited January 2019
    But Communication is SO important between your health professionals  @Sister .....  I had it with my GP who found my BC - but she is now in Melbourne.  She was very much an 'old school hands on' GP - pressing your tummy etc to check for no pain/swellings, checking the glands in your neck - it takes 5 second - most GPs don't even get off their chair these days - write a few scripts & off you go!!    One day, I'll find another one who is as good as her.  It may take a while.

    I found a 'list' of things to be aware of re Mets BC ...... they are probably not definitive - but a start ..... if anyone is aware of any other symptoms - please whack them on the thread

    Metastatic breast cancer symptoms depend on the part of the body to which the cancer has spread. Sometimes, metastatic disease may not cause any symptoms.
    • If the breast or chest wall is affected, symptoms may include pain, nipple discharge, or a lump or thickening in the breast or underarm.
    • If the bones are affected, symptoms may include pain, fractures, constipation or decreased alertness due to high calcium levels.
    • If the lungs are affected, symptoms may include shortness of breath or difficulty breathing, coughing, chest wall pain or extreme fatigue.
    • If the liver is affected, symptoms may include nausea, extreme fatigue, increased abdominal girth, swelling of the feet and hands due to fluid collection and yellowing or itchy skin.
    • If the brain or spinal cord are affected, symptoms may include pain, confusion, memory loss, headache, blurred or double vision, difficulty with speech, difficulty with movement or seizures.
  • Patti JPatti J Member, Dragonfly Posts: 589
    edited January 2019
    Where I live, there has been an interview for all potential medical students, to check their suitability, for as long as that medical school has existed. I think that it was the first medical school in Australia to have that interview practice.
    As for symptoms of metastatic cancer, I  just had enlarged lymph nodes in my neck. When I was doing self defence classes, one of the assistants spotted them and advised me to see my G.P.  
    As for the other symptoms, well, I  have not had them. 
    Everyone is an individual. Experience is the greatest teacher.
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,208
    My Onc checks me physically at each visit including arm pits, neck, lungs et cetera

    @pattij thank goodness someone noticed as we don't always head to a GP for a check up when we are feeling okay!
    Best wishes with your ongoing treatment
  • SisterSister Adelaide Hills, SAMember Posts: 4,960
    edited January 2019
    I've always been aware of the recurrence possibility with mets as I watched it take down my sister a couple of years after her 5 year all clear (and hers was an extremely early bc treated with a full mastectomy).  My GP gave my surgeon a heads up in the initial referral that I was unlikely to be swayed by optimism.  I guess that it's easy to listen to the 70% effectiveness message of the AIs without thinking about the 30% and what that means.  And it's always been a bit confusing to me, the focus on the remaining breast at the 12 month scans, when the likelihood is that a recurrence will be elsewhere.  These days, I seem to have so many aches, pains and "things", that I'm not sure I would recognise something wrong.  But I'm trying to be a pragmatist rather than a pessimist.  I've always told my medical team that I want them to keep me alive long enough for the next breakthrough in treatment.  Apart from quality of life issues, I'm happy if it's a managed condition for 30 or 40 years (maybe I am optimistic as that would make me 95).  Of course, the optimum, and what I'm hoping for, is that my surgeon and onc are right and that it's gone for good.  But as someone else said, none of us are getting out of here alive.  I just want as much time as I can.
  • primekprimek Broken HillMember Posts: 5,392
    They used to do annual bone and CT scans and blood tests to look for metastases for 5 years. What they discovered was it did zilch in early detection and extending life and caused more scanxiety than any benefit. The blood tests are highly inaccurate even for people with known metststic disease. 
    My sister had perfectly clear scans for all her 5 years. 2 months later she had niggling rib pain and had an Xray which of course then revealed bone metsteses. 
    I guess being aware of yourself and following through niggling concerns is more important. 
  • AfraserAfraser MelbourneMember Posts: 4,022
    There's a thesis or two on fear to be developed. Cancer has been a fear-ful subject for so long. I had a friend who, fearing the cervical cancer that killed her mother, did nothing about her significant pains and aches (until her friends found out what she was doing, and forced her to a specialist as her GP appeared to prefer her diagnoses!) and then of course it was too late to do anything useful. Heart disease and respiratory illnesses kill more world wide but don't seem to trigger the same fear or denial. No-one wants a cancer diagnosis but maybe a fighting chance is worth getting in time. 
  • Milly21Milly21 Member Posts: 111
    Yes earlier detection would be very helpful to get right treatment and extension of life if cancer has spread to different parts of body. And when I was first diagnosed I wanted full body scans, doctors explained why that’s not done and it made sense,two years on I know it sounds stupid but I think if I had ongoing pain in one area,I don’t think i want to be tested as don’t think I want to know if it’s spread,even though logically I know that’s ridiculous.
  • AfraserAfraser MelbourneMember Posts: 4,022
    That's why we have scanxiety! Have to check, don't want to know. 
  • RomlaRomla AdelaideMember Posts: 2,091
    I have mentioned this issue to @wingman asking why we are not told.It seems to be similar to not knowing our breast density both of which if known may make for greater vigilance with better outcomes.
  • Patti JPatti J Member, Dragonfly Posts: 589
    No @Romla.  There is nothing that I  could have done to be more vigilant. That is not why I  have metastatic breast cancer. No-one knows that including my oncologist. 
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