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

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  • arpiearpie Mid North Coast, NSWMember Posts: 2,994
    Good on you @Romla

    Hence the need for more research into it.  There must be SOMETHING they are missing & it could tie in to the CTC trials.

    Men have their blood tests for Prostate - why is it that women don't have a specific one for BC? They only have millions of women who'd be happy to donate their blood & breast tissue if it was to advance the cause ......

    And of course the new drug regime worked out specifically for men that causes male menopause and unwanted side-effects such as sexual dysfunction and tiredness.  Hot flushes, feeling tired, some muscle weakness, some men complain that they feel like they're not thinking as clearly, they put on a bit of weight on the tummy," said Dr Joshua.
    https://www.9news.com.au/2018/12/26/17/14/new-drugs-trials-testicular-cancer-australia

    I wonder if they will trial it on women ...... who knows, it could help us too!!
  • RomlaRomla AdelaideMember Posts: 1,913
    Have been doing a little research online myself about this and am not finding the 1 in 3 figure of the thread article .For example , I found this 2016 Canadian article below which also  states at the end their results were consistent with other major studies in US ,UK and Denmark.Yes there is a risk but not any where near as high.It would seem to depend on stage , tumour size and age with an overall risk of around 13 %.

    The incidence of bone metastasis after early-stage breast cancer in Canada.

    Abstract

    Current information on the incidence and prevalence of bone metastases in women with breast cancer is scarce. This study examined the occurrence and predictors of bone metastases, as well as post-metastasis survival in a prospective cohort of Canadian women with breast cancer. We included women treated for early-stage (stage I, II, or III) breast cancer at the Henrietta Banting Breast Centre (HBBC) in Toronto, Canada between 1987 and 2000. Data were abstracted from medical records and pathology reports in the HBBC database; follow-up extended to end of data availability or August 31, 2015. Actuarial survival analyses provided cumulative incidence of bone metastases at 5, 10, and 15 years after breast cancer diagnosis. Kaplan-Meier curves describe breast cancer mortality. Regression models assessed patient, tumor, and treatment characteristics as predictors of bone metastases with all-cause mortality as a competing risk. Among 2097 women studied, the 5-, 10-, and 15-year probability of bone metastasis was 6.5, 10.3, and 11.3 % for the first recurrence, and 8.4, 12.5, and 13.6 % for any bone recurrence. At median follow-up (12.5 years), 13.2 % of patients had bone metastases. Median survival was 1.6 years following bone metastasis, and shorter if both bone and visceral metastases occurred. Advanced age and adjuvant treatment with tamoxifen were protective against bone metastasis. In this representative cohort of women diagnosed with early-stage breast cancer in Ontario, Canada, with long follow-up, the incidence of bone metastases was consistent with longitudinal studies from the United Kingdom, Denmark, and the US.

  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    Interesting, @romla.  I note that they only talk about bone mets in their stats - I wonder if the recurrence ups significantly if other mets such as liver are taken into consideration.  Dr K did tell me Letrozole was a 70% insurer.
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 104
    The issues around mets are incredibly complex and hard to get your head around. Research such as reported in the abstract above does not give a clear picture. While bone is the most common site mets occur often in liver, lung, brain and less often elsewhere. Letrozole, tamoxifen etc are only protective where the cancer is highly positive for oestrogen receptors. Even so there are some cells which are like stem cells and evolve resistance to AI meds, hence the cancer finds new sources and starts growing again in the distant sites. I think we need a short but accurate publication setting out exactly what we do and don't know about mets. Another factor with studies like the above is that they include many cases from past years when tamox and AIs were not so widely used so the statistical analysis is compromised.
    The 70% figure people have been quoting seems to have come out of nowhere. Can anybody cite the studies it has come from? It is still not clear to me what it refers to. Is it all those on anti oestrogens for five years? Does it include those with lower than 100% oestrogen positive type? How about those who went off meds before the 5 years was up? (As so many do due to intolerable side effects). It is incredibly important, as @arpie has so rightly said, that people understand  as much as possible about their condition. For myself not one of my doctors at any stage has ever said a single word about the likelihood of mets even though I had a huge amount of invasive tumour and 9 lymph nodes involved. My daughter, a trained researcher, and I had to find everything out from the scientific and clinical literature by ourselves. There seems to be a general view that the less we know the better. Now I  believe I am waiting for my mets but that's just how it is and life needs to be lived  to the fullest possible extent in  spite of that. But it does change your perspective.
  • RomlaRomla AdelaideMember Posts: 1,913
    It does seem to be under researched and we do seem to be under informed  but maybe the 2 are intertwined.I have found bits online like the Canadian study and found this comment interesting from  Dr Halls at the Moose and Doc website.

    “The statistic of 20% to 30% for metastatic breast cancer that recurs remain controversial amongst medical experts. The figure of 30% metastatic breast cancer recurrence rate first appears in a 2005 medical study, but no statistical data or sources are cited.

    The MBCN take the 18-year relative survival rate from the SEERS data between the years of 1990 to 1994 as 71%.  The argument is, that this takes us close to the 30% recurrence rate statistic. However, there are many other factors at play and treatment has advanced so much that recurrence rates may have even halvedsince then.”

    The advice I have been given from a breast surgeon is- 

    Early breast cancer carries a lifetime risk of metastasis of 10-20%, with early breast cancer defined as any breast cancer up to 5cm large.Risk of metastatic disease for cancer less than 2 cm at time of diagnosis is much less.

    Like you I will get on with living and enjoying my life but with this thought hovering in the background should anything inexplicable happen to my health whereupon I’ll seek medical advice.



  • arpiearpie Mid North Coast, NSWMember Posts: 2,994
    WOW! @Annski ...  I'd never really thought about those who'd also taken themselves off the meds early or intermittently during their treatment as 'messing up' data and subsequent diagnosis of mets relative to the 'existing statistics'  (I couldn't tolerate Letrozole!  :(  ) ... but it really needs a truthful investigation.  It is such a huge  area to be looked into - over a very long period of time.

    As well as @romlas's explanation of the SEERS data - I think the 70% is just a loose acceptance that if up to 30% 'may' acquire random mets, then 70% 'shouldn't acquire them'!  A comforting number - but how accurate, given the passage of time?!

    As with you and your daughter - it is very disconcerting that we are not kept aware of the chances of Mets after our active treatment has finished  .... and a HEAP of research is badly needed!

    @Romla  -  what the breast surgeon explains sounds very promising for reducing the likelihood of mets in smaller tumours - that is good ..... and 2005 is such a bloody LONG TME AGO to still be quoting as 'statistical evidence' relative to 2019!

    Let's hope that more research is done into this area  SOON


  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    Time is definitely one of the issues with reading any research.  So much has changed in the last 30 years with BC (as with many cancers) that what we are reading may not apply to us.  My onc told me last week that he believes in a few years that the profession will look back at treatment today as stone-age, as they do no for lung cancer and melanoma treatments of only 5 years ago - so much is changing.  We are going to end up as someone else's statistics - I just hope that we are heavily weighted in the positive.
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 104
    Good point, @sister, and heartening to hear that this changing view is coming into focus, at least among some oncologists. A major issue though is that the research and laboratory-based work is proceeding apace but it takes so long for clinical trials and then for public health bodies to authorise the use of the new methods and techniques. People who could benefit immediately aren't able to access new treatments fast enough. Hopefully this too can change.
  • Anne94Anne94 Member Posts: 159
    Recurrence would and definitely be a scary thing for women to go through.  But here in Australia and worldwide, there are a large bunch of us that have been diagnosed with Metastatic Breast Cancer from the beginning or de novo.  There is a lot of noise and publicity for early breast cancer cures and treatment which is great and important.
    But nobody wants to talk about us, the media shies away from the word Metastatic or Stage 4, they use softer words like secondary or advanced.  Trials are hard to find, or even access, not to mention medications as well.

    Don't get me wrong, recurrence would be awful, scary and a horrid thing for women and their families to go through. I certainly would wish stage 4 cancer on anybody.  

    xo Anne
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,696
    @Anne94
    Nice to hear from a perspective of a mets diagnosis.  To have stage 4 from the start is certainly a so and so. 
    The fear of recurrence is real however I can't see the sense of worrying about something that may or may not happen. It's awareness of self and maintaining appointments that helps with vigilance. Some on the forum recently have commented about in and out appointments with registrar or oncologist with no physical examination. Thank goodness mine is diligent as I work my way through treatment and time passes. 
    Anne where are you at with treatment? Do you have stability? 

    Best wishes 
    Take care 
  • Anne94Anne94 Member Posts: 159
    Hi. @iserbrown
    i have currently mets to bones still. About to go and have my 3 intermedullary nail inserted on my left femur on the 19/2. These as you might be aware keep my long bones stable.  I’ll also be starting Palciclib & fulvestrant in the next week & month. My oncologist was able to access the Palbociclib on compassionate grounds. 
    Being your own advocate  and vigilant is important when dealing with your doctors, it is, what I find gets you what is required for your treatment. 
    Xo Anne 
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,696
    Anne that's fantastic that your Oncologist was able to access on your behalf on compassionate grounds.
    Best wishes for the 19th and continued stability.
    Take care x
  • Anne94Anne94 Member Posts: 159
    Hi @Sister
    I believe that we must be our advocates, and its important to do follow-up appointments, being vigilant with our health regardless of early stages or metastatic. Your life is never a waste of time, but fear can be and it can cripple you and lock you into places with no escape.  It is important to put fear in its place by being purposeful and living life to the fullest.  
     I'm truly sorry to hear that your sister passed away from this dastardly disease.  I have 3 sisters and a brother and 2 teenage children and I see the worry and fear in their faces, all the time. And I'm relatively stable with this.
    All I hope is that the money that goes to research fundraised by a number of charity organisations will one day soon, have a cure or at least the knowledge of how to treat breast cancer without having a reoccurrence and have the knowledge of why BC likes to travel around the body like mine did without me knowing about it. 
    xo
  • melclaritymelclarity Member Posts: 3,373
    @Anne94 I totally agree with you, in that there is so much time and money put into early BC, but you would think there would be a priority also in Metastatic BC. I lost somebody dear last year to Mets, hers came back after 15yrs. I agree also that a recurrence is and would be hard, and Ive lived through 1 already, so in total Ive been going 8 yrs with 2 diagnosis. BUT...honestly?? it is NOTHING in comparison the fear of a recurrence compared to Mets. 

    My Oncologist is not watching for Breast Cancer after each checkup I have with my Surgeon, (makes me wonder why they bother doing a mammo on my right then) he is watching for a secondary. 3yrs ago I thought he was pessimistic and I was so angry as Ive been great ever since well relatively lol. Thing is thats his reality and his job and nobody knows. As you say how it travels around our bodies without ever knowing. To have been through it twice I am still baffled how I never felt a thing nor felt sick absolutely nothing...only treatment ever compromised my living...so odd to me. 

    You sound like you are doing well and I so believe regardless we just live to the fullest, I dont think beyond that anymore because I dont want to miss a single moment of right now :) 

    Here's to a complete cure!! because really, you would think by now we would be far more advanced especially at picking it up before it actually has hit but my Oncologist said we just aren't there and there are no tests that are in front of it. :/ 

    Big hugs!!! hope youve had a great weekend!! xx M
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