https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2139#M585 Hi all, as a survivor of colorectal cancer, this is a subject very close to my heart. Not only have I had bowel cancer, but it has been a part of my history for over 30 years. Yes, I have a gene that pre-disposed me to bowel cancer and even though I had an operation in my late twenties and had been checked every 6 months until 2000, I still managed to get cancer - 2000 was the year that I was diagnosed with bowel cancer. My mother died from bowel cancer, I had two brothers, one who died from complications with our type of gene and another one who survived bowel cancer only to die from esophagus cancer, unrelated to our familial cancer. My other sibling, sister has the gene and 4 out of 5 of mum's grandchildren have the gene. I only found out that I had cancer when I thought that I wasn't as fit as I should have when working in the garden, I was going to the gym at that stage so I was quite fit. I am the lucky one in that I have survived and it probably wasn't quite the devestating statement that other people receive. I too am disappointed at the lack of awareness of how prevelant bowel cancer is, but I have a feeling that it is not so much the non-sexy image, but the "dirty" image that it conjures up. There must be more media people out there who have been diagnosed with bowel cancer, but even now it is hard to get the media "excited" about the subject. Let's all get behind the cause to highlight the deficiency of awareness about bowel cancer (and yes lung cancer, although there is more reference to lung cancer than bowel cancer). I think that it will be an uphill struggle but very worthwhile. I hope that that was not too long for my first statement. Craftyone Sun, 16 Aug 2009 06:31:20 GMT craftyone 2009-08-16T06:31:20Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2130#M576 If we define advocacy as speaking with and on behalf of others how do you choose what to advocate on? Is it related to your cancer experience? Is it what you're passionate about? Is it an area of most need, and if so how do you define this? Is it because there's a ready 'fix' that will save lives? I ask these questions because there are some causes that you rarely hear people speaking out on e.g. bowel cancer hence the Cancer Council's current campaign ' get behind bowel cancer'. Bowel cancer is Australia's second biggest killer, yet it doesn't get the attention it deserves. Is this because it's not a 'sexy' cancer? 80 people die a week in Australia yet more than 30 of these lives could be saved each week if the Government committed to full implementation of a biannual screening program for over 50s. What gets you fired up? Thu, 13 Aug 2009 03:59:01 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2130#M576 2009-08-13T03:59:01Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2131#M577 What a fantastic series of questions! You've got me in. I'm thinking about it, OK. H Thu, 13 Aug 2009 08:57:32 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2131#M577 harker 2009-08-13T08:57:32Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2132#M578 Glad they caught your interest. Looking forward to hearing your thoughts. Rory Fri, 14 Aug 2009 00:12:46 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2132#M578 2009-08-14T00:12:46Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2133#M579 Hi Rory & Harker, Scarey stats for bowel cancer & I know that is just one example. I guess creating awareness is one great thing the cancer council does. However I know that most people I speak with who have had cancer had some feeling or symptoms before going to the Doctors. Could it be that men are the worst offenders in this regard? I think so, without being offensive to men, I am married to one & have 2 sons so I do feel passionate about raising some awareness for men to understand their bodies a bit better and to have regular check ups. It has just taken me 5 years to get my husband to go to the Dentist! I dont quite understand why this is. Most women tend to keep on top of of their health a lot better than men do. With heaps of programs over the years for breast cancer and cervical cancer, i think men sometimes get kept out of the loop a bit. I guess prostate cancer is one form of cancer that has had some awareness programs over the years, and as you said Rory also Bowel cancer. So I guess that is one thing I get fired up about. But when it comes to cancer you are right, there are so many things to keep us all on our toes. Fri, 14 Aug 2009 00:30:00 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2133#M579 2009-08-14T00:30:00Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2134#M580 Hi Vanessa Thanks for sharing what gets you 'fired up'. And you're so right that 'there are so many things to keep us on our toes'. R Fri, 14 Aug 2009 02:29:55 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2134#M580 2009-08-14T02:29:55Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2135#M581 Hi guys, As a bowel cancer survivor, these comments touched a chord.It snuck up in me but I was having all the right checks(family history etc). What I did though, was as a working Mum, left myself until last and until I was so ill that I had to something about it. I was finally admitted to hospital on the Thursday but had been in an emergency on the Monday night with severe pain, had X-rays and an enema so felt a bit better and took myself back to school (teacher) by 7.45 the next morning despite the pain. I had emergency surgery on the weekend. I was my own worst enemy. So perhaps it is rethinking our lifestyles and sense of obligations to everyone else that has to change and maybe start being more aware of what out bodies are saying. What scares me now, is that I can see myself heading down the path of falling into my old ways - family and school first - me last. I have to give that some thought but maybe as a society we have to give some thought? Any ideas, S Sat, 15 Aug 2009 12:36:13 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2135#M581 samex 2009-08-15T12:36:13Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2136#M582 I think my answer would probably be "All of the above". The questions you have raised seem to cover the different frameworks of knowledge, interest, equity and utility. I can relate to all of them. I guess, though, your point was to get people to think about which one is a 'driver' for their behaviour. So, if I had to choose: I would go with what I have knowledge of, which is "my cancer experinece". I can get passionate and desire equity in matters to do with cancer research, treatment, support, etc, but they are always going to be informed by my own knowledge. I am not a professional advocate and I could only act on what I have knowledge of at the time. I am not looking to be an advocate, although I might advocate. And I'm also aware that not everything can be fixed so there's likely to be better returns for some investments compared to others, etc, etc, etc...(insert standard economic rationalist argument here). So, Eddie, I'm picking answer 1. Did I win? Samex, my behaviour prior to diagnosis was as gender typical as yours, I guess. My wife kept saying you should have a check up and I kept avoiding it because I didn't want to know what I might have to know...typical blokey response to the situation. H Sat, 15 Aug 2009 21:19:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2136#M582 harker 2009-08-15T21:19:29Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2137#M583 Hi RoryA Yes Advocacy is what you say it is - but what are the areas that you decided to work in? Well there is the need issue, there is the equity issues and to be pragmatic there is also the opportunity. Let me illustrate: Equity - cancer survival is worse the further you are away from a metropolitan area. So work with state and federal governments to ensure that the rural cancer initiatives, including $560M in the last budget go to the areas where they will serve those with the greatest need. Work with other organisations to address the issue of transport and the appalling state of the various transport assistance schemes in each state (There was a Senate enquiry two years ago, none of the recommendations have been addressed!) Equity - the lower your socioeconomic status the lower your cancer survival - no one seems to be addressing this one. It does overlap with the above. Equity - If your come from an indigenous or culturally and linguistically diverse group, your survival will be worse. We know all of the above - what are we doing about it? Need - if you go to the Cancer Australia Website and download the document "Cancer research in Australia: An overview of cancer research projects and research programs in Australia 2003 to 2005" (http://www.canceraustralia.gov.au/media/14905/national_audit_of_cancer_research_projects_and_research_programs_final_report.pdf), Have a look at the tables on page 30 and following. They plot, incidence, mortality and Person Life Years Lost to Age 75 for a range of cancers, and the research spend on each cancer - breast, leukaemina and ovarian do well on all counts - Lung, Bowel do badly yet they are the top two cancers on all scales. - what are we doing about that. (I am going to be politically incorrect and say of you read or listened to the media you would think that the only females get cancer and the only cancer they get is breast cancer!) What are we doing to correct he bias in the media - I am quite cynical about this - colorectal and lung cancer aren't sexy so they don't get the attention. Opportunity - if an opportunity presents itself the go for it. A good example is the campaign ran two years ago about allowing terminally ill to access there superannuation without a taxation penalty. A lawyer doing pro-bono work with people affected by cancer approached an advocacy organisation about this. The organisation ran with it and with the help of other organisations got the law changed. Just a few ideas, Cheers Sailor I am not on this site to be an advocate - so no quotes! BTW these are national issues!! Sat, 15 Aug 2009 22:32:46 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2137#M583 Sailor 2009-08-15T22:32:46Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2138#M584 Hi everyone, Samex I understand totally what you are talking about. It's something I'm guilty of. Even now after everything Ive been through I still put my family first. I guess most Mums do. I think finding the right balance is the key. My children were 11 and 1 when I was having surgery and chemo, I used to get up to a 1 year old who refused to sleep during the night after an 8 hour session of chemo and a zap of radiation thrown into the mix. Im sure any parent with young children can understand. The thing I found hard was to let some things go and accept some help from time to time. I wanted to think that I could do it all, all of the time. I can see now though that looking after myself is also in a round about way, looking after the kids. They need me to be around for them and to be at my best. So the only thing I can suggest is that what you are saying is quite normal. In my last post on here I spoke of Men not taking caring of themselves the best way they can. And I guess we as women do the same just in a different way. Hope that helps, Im not at my best on a Sunday morning! Sun, 16 Aug 2009 00:19:00 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2138#M584 2009-08-16T00:19:00Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2139#M585 Hi all, as a survivor of colorectal cancer, this is a subject very close to my heart. Not only have I had bowel cancer, but it has been a part of my history for over 30 years. Yes, I have a gene that pre-disposed me to bowel cancer and even though I had an operation in my late twenties and had been checked every 6 months until 2000, I still managed to get cancer - 2000 was the year that I was diagnosed with bowel cancer. My mother died from bowel cancer, I had two brothers, one who died from complications with our type of gene and another one who survived bowel cancer only to die from esophagus cancer, unrelated to our familial cancer. My other sibling, sister has the gene and 4 out of 5 of mum's grandchildren have the gene. I only found out that I had cancer when I thought that I wasn't as fit as I should have when working in the garden, I was going to the gym at that stage so I was quite fit. I am the lucky one in that I have survived and it probably wasn't quite the devestating statement that other people receive. I too am disappointed at the lack of awareness of how prevelant bowel cancer is, but I have a feeling that it is not so much the non-sexy image, but the "dirty" image that it conjures up. There must be more media people out there who have been diagnosed with bowel cancer, but even now it is hard to get the media "excited" about the subject. Let's all get behind the cause to highlight the deficiency of awareness about bowel cancer (and yes lung cancer, although there is more reference to lung cancer than bowel cancer). I think that it will be an uphill struggle but very worthwhile. I hope that that was not too long for my first statement. Craftyone Sun, 16 Aug 2009 06:31:20 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2139#M585 craftyone 2009-08-16T06:31:20Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2140#M586 Hi everyone, I work at CCNSW in the policy and advocacy unit. It is good to see so much discussion here. I think you make a good point craftyone, my work brings me into contact with many patients and survivors and only a few times have I met someone who has, or had bowel cancer (actually I should clarify that I've only met a few people who have been comfortable , or willing to openly discussing it, I may have met others and not even known) I'm encouraged by the response to the the current campaign, however, there's been around 12,400 sign up's nationally which shows that the bowel cancer issue is getting on the radar. Lets hope the energy continues to rise....... Kelly Thu, 20 Aug 2009 12:44:05 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2140#M586 2009-08-20T12:44:05Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2141#M587 Hi Sorry all for the silence, been up in FNQ on hols. Beautiful! Did you win? Of course, mind you I would write that whatever your answer:)I guess you blew my cover somewhat in trying to get people to think about what's their driver. I think cancer experience is often going to be the main driver. In advcoacy terms the power of the personal (experience) can often bridge that disconnect between 'an issue' stats/info/cause and us as people or you as a person. R Mon, 31 Aug 2009 00:56:49 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2141#M587 2009-08-31T00:56:49Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2142#M588 Hi Sailor Again sorry for taking so long to respond. Thanks so much for sharing your insights and ideas. Will respect your ask that we don't quote you. What are my reasons for getting involved in Advocacy? My personal drivers are around equity, social justice and supporting communities to speak out and play an active role in civic society. Transport - On a personal note as a Brit I still find the size of NSW let alone Australia mind boggling. We've done some work to chip away at the 'tyranny of distance' that regional and rural residents face. Cancer Cocunl NSW with allies including NSW Farmers Association, the Country Women's Association, NSW Council of Social Services, Cancer Voices NSW, the Leukaemia Foundation NSW, the Hepatitis C Association, Muscular Dystrophy, Bourke Aboriginal Medical Service, New England Renal Support Association and Epilepsy Action ran the less distance for assitance campaign. http://www.cancercouncil.com.au/editorial.asp?pageid=1918 Also, work quite closely wwith NSW Council of Social Services and Community Transport Organisation e.g. joint reports http://www.nswcc.org.au/editorial.asp?pageid=2377 Low socio economic groups - I agree that this is not sufficently addressed. In policy docs and submission CCNSW often makes specific reference to equity of access whether this be distance disadvantaged, financially disadvantaged etc. Indigenous and CALD groups - Again you're spot on with the point you make. As an organisation have started to take some more substative steps e.g. In partnership with the Aboriginal Medical Health Research Council and a steering committee of Aboriginal community memebers recently ran Advocacy Training for Aboriginal People. Thanks again for sharing your thoughts. Rory Mon, 31 Aug 2009 02:26:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2142#M588 2009-08-31T02:26:29Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2143#M589 Hi Craftyone Thanks for sharing your experience and thoughts. And no I don't think your first statement was too long. I apologise for being so tardy in my response. It is tough to get the media excited about bowel cancer and the general lack of awareness in the communit is diasapointing as you say. Hence the whole Make a Noise! cmapaign (forgive the plug) to Get behind bowel cancer http://www.getbehindbowelscreening.com.au/ Rory Mon, 31 Aug 2009 02:30:13 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2143#M589 2009-08-31T02:30:13Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2144#M590 Hi Rory No Quotes - usually I end up any post I make with a quote from a sailing or sea theme - so 'no quotes' means that I haven 't added a quote. Feel free to quote me as much as you like. This last weekend there was some advocacy training and this was a list of some principles that were derived In advocacy you are working on behalf of others - not dealing with your own issues. Your most powerful tool is your own story - use it to illustrate the issues you are addressing on behalf of others. Do your homework before you get on your white horse and load the six shooter - get the facts, the evidence, the knowledge before you take any action. Forget the white horse and six shooter - you’re not the hero or out to save the world. Seek partners in any advocacy action - a band is heard more readily than a solo player. Activism can be fun but building partnerships works better. Using a problem solving, rather than conflict approach, draws people in and builds relationships. You don’t always have to win – “win/win” rather than “win/lose” builds stronger relationships. Know why you are an advocate and what drives you, so that you know where the lines in the sand are drawn. What we are wanting is sustainable change - big change is made up of a lot of little changes . Because you are not seeing results does NOT mean nothing is happening - in good advocacy a lot happens behind the scenes. Credibility and influence are something that you earn. I commend them to all. Cheers Sailor Mon, 31 Aug 2009 08:16:36 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2144#M590 Sailor 2009-08-31T08:16:36Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2145#M591 Hi Everyone, What gets me fired up? I'll tell you. This may not sit well with alot but here are my main issues:- a) The way medicine is practiced here. I can tell you there is a vast difference between the way cancer and other terminal illnesses are approached elsewhere. The medical profession and govt don't seem to be proactive about a) testing b) catching cancer in its early stages, c) providing aggressive treatments in a timely manner, d) educating the public on the importance of testing and the symptoms that they should be seeking professional advice on. This is costing many lives in itself. I see other issues:- b) The ratio of specialists/doctors to patients is shockingly inadequate, if your a public patient you are going to wait weeks, or even months and this can in quite a few cases be too late to take action in a timely matter. c) lack of funding, focussing care on the young and deeming the elderly a lost cause. d) but my biggest dissapointment and shock is the policies that seem to guide the looking after of the terminally ill and elderly in this country. Palliative care is my final issue, and I can tell you not all facilities are the same, I have witnessed patients left soiled for hours, deprivation of food and liquids, because these patients are zonked on morphine and they have been left with cold trays and when not touched simply taken away. Not only this but the legality of do not resusitate orders and the lack of education and information passed onto family members. I could go on and on. But this is why I've decided to write a book, so others didn't find out like I did, and to talk to those that want to see a vast improvement in services, hope is no longer a word used in Palliative Care and this is in my opinion fundamentally wrong. Tue, 01 Sep 2009 23:06:30 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2145#M591 2009-09-01T23:06:30Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2146#M592 Dear PS I can not let your statements go unchallenged, but I do realise the risk that we will get into fruitless arguments. So wherever possible I will quote sources of information. I think it would be a good idea if you were to do the same. I cannot comment on palliative care, it is not something that I have been involved with either personally or in any other capacity. I do take exception to your first paragraph. I have good professional knowledge of the way cancer is practiced elsewhere and here and personally I am very glad that I was treated for my cancer in Australia. I received world's best practice cancer care and for my second round, treatment that was available nowhere else in the world. At the time I was regularly in touch with consumer groups in North America and they were amazed at the standard of treatment available here. My first round of treatment was as a private patent in a public hospital, my second round as a public patient in a public hospital. There was no difference in the treatment or care I received. That is my personal experience and therefore anectdotal. Evidence. Australia's survival rates are amongst the best in the world - see references on Cancer Australia's website www.canceraustralia.gov.au. We are among the top five in the world. That doesn't say that we can be complacent as there are statistically significant differences between rural and metropolitan areas and across the socioeconomic divide. However, the differences are not huge. For example: 5 year survival in eastern Melbourne is 64% overall and in Western Melbourne 56% ref: Cancer Survival Victoria 2007. The medical profession, nursing, allied health and consumer organisations are working together to address these issues. The Minister yesterday released a statement that five regional cancer centres are now involved in conducting clinical trials. In the last budget $560M was made available for rural and regional cancer centres. The Federal Government now fund thirteen Cooperative Oncology Groups to conduct clinical trials of aggressive new cancer treatment - four of these groups are new in the past three years - source of data - canceraustralia.gov.au. If you read government policy in all states, you will find early detection and prevention are major priorities and the Victorian Government in its cancer action plan has set targets for achieving these - www.health.vic.gov.au/cancer. The Cancer Councils in all states have been active in sending out the messages on testing , symptoms and action to be taken. The focus on the young and ignoring the elderly I really take exception to. Apart from children, the largest group to have benefited, as indicated by increased survival, is the over 60's. It has been realised in the last few years that a group missing out have been adolescents and young adults and so there has been extra funding to this group - done on the basis of need, not neglecting another group. If you need references for this look at those on the Cancer Australia website I won't comment on palliative care - but I will comment on some aspect of terminally ill. It was consumer groups in this country that achieved a change in the law regarding access to superannuation. Can I suggest, that you become involved with a consumer organisation and work to achieve change. I can be very effective. Cheers Sailor If you want to build a ship, don't drum up people to collect wood and don't assign them tasks and work, but rather teach them to long for the endless immensity of the sea. Antoine de Saint-Exupery Wed, 02 Sep 2009 00:21:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2146#M592 Sailor 2009-09-02T00:21:56Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2147#M593 Dear Sailor, Thank you for the thought provoking response. I too, have alot of experience with the healthcare in the United States, I lived there and my regular physician was voted the best physician in the US in 2005. I am also 100% sure that if my father had been diagnosed and received treatment from the US he would still be alive today. Unfortunately, against my advice and timing, my father received his treatment here. So we may agree to disagree even though I appreciate your opinion and the items you have quoted. I would not pay much heed to those survival rates simply because you need to compare the populations of Australia vs United States and the fact that many choose not to have insurance. My insurance was via my husband's medical plan with his employer and was exceptionally good, much better than for the highest level of cover I pay for with MBF here. I'm not sure what consumer groups you have been in contact with, but currently, the United States is having a huge debate and a big outcry from citizens who realise what a public healthcare system will do to their high standard of healthcare and its obvious even to the majority of Americans that theyre standards will slip once govt are involved. They see the nightmare that is the NHS, Canada and Australian healthcare. That's another argument altogether. Again, I agree to disagree because I've received expert treatment for the most minor of things and doctors are accountable should they not diagnose a disease as soon as a patient presents symptoms. For example my father in law had a fall, after all testing which was done promptly they discovered he had water in the brain and went into surgery a week later. He never presented with prostate cancer symptoms at all, but because of his age group, assessing certain risk factors they decided to test him for prostate cancer, did a PSA test, realised he had a high PSA, unlike what would happen here, they advised the only way to confirm prostate cancer was a biopsy, and they performed one, even if he did NOT present with any prostate problems at all. Thankfully the test was negative. Here, my father went to TWO doctors who dismissed the blood in the urine 5 years ago, upon my fathers insistance of a specialist, they did a biopsy a month later and discovered he was stage 3 prostate cancer. Believe me, he isn't the only one here who has had this experience, what I've seen in the past 5 years is an eyeopener. It's well known fact that 90% of clinical trials as well as newest treatments and medication are not brought to Australia first, but are tested and used upon others successfully for years in Europe and the United States before they are available to Australians. Secondly, the United States for example are VERY proactive when it comes to testing for and the management of cancer, because unlike is practiced here, they would rather cover their behinds than get sued. Therefore they are very proactive to test and diagnose with their patients, I would only wish the same standards would be applied here. Also you don't wait to see a doctor or specialist and aren't left in a queue for surgery. My insurance was that good. Even my medications were covered and all for a $15 co-pay when I saw a doctor. I never once went into a full doctor's surgery where I had to wait 2 hours to see a GP. Palliative Care is something thats not discussed very well, and should be. I want to be a part of changing what is happening here. Alot of it would bring you to tears if you saw what I'd witnessed in a few facilities. Not good enough. I can tell you that there are many who go to the US for treatment, but not too many of the world's population come to Australia to get treated for cancer. Wed, 02 Sep 2009 02:01:50 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2147#M593 2009-09-02T02:01:50Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2148#M594 Dear PS We could go on until the cows come home citing personal stories and experiences. They are valuable. We could also go on doing values based comparisons of the US healthcare system and the Australian. Not a lot can be achieved. I suspect that our differences are values based and therefore not reconcilable. I did invite you to present evidence for your assertions. I suggest that you might do so. It will make you case more powerful - look at the third of the principles of advocacy that I posted a few days ago. I also think that you need some evidence to back up your assertions about clinical trials in this country. On a personal note, I was diagnosed with aggressive prostate cancer after a visit to my GP. I had no symptoms, but he did a check up as routine healthcare. I didn't have to threaten to sue my health insurance fund to get experimental treatment, as many consumers in the US have. I see no further point in continuing this discussion. I responded as I do not like the Australian healthcare system being put down and I am very aware of the deleterious effects of thinking that things are better overseas and that you will, by paying lots of money, get treatment in the US or elsewhere that is not available here. Regards Sailor Duty is the great business of a sea officer; all private considerations must give way to it, however painful it may be. Horatio Nelson Wed, 02 Sep 2009 02:19:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2148#M594 Sailor 2009-09-02T02:19:45Z https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2149#M595 Dear Sailor, Thank you for the response. I won't defend the health system here that's for sure. But I will say there are some fantastic doctors here, but few and far between in my experience. Yes we have different expectations and values when it comes to medical treatments. I'll leave that where it is. But with regards to clinical trials for prostate cancer I can only tell you that trials for Provenge (not here), Aribaterone (came rather late to Australia). The FDA was tough on Provenge vaccine, but their most recent trials in the US have proved successful and I suspect this will be up for FDA approval in the not too distant future. Here I quote:- "Then we have denosumab, a new targeted therapy to stop bone loss, increased bone density and prevented spinal fractures in men receiving androgen-deprivation therapy for prostate cancer. The study was a Phase III trial supporting the application for approval from the Food and Drug Administration (FDA) filed by Amgen Inc., the primary sponsor of the NEJM report. Since the PCF was founded in 1993, there has been important growth in the number of new drugs and clinical trials for prostate cancer. Sixteen years ago, there were no new drugs in the development pipeline and only two clinical trials in process; in 2008 there were more than 30 drugs in development and over 60 clinical trials in process. Abiraterone, ipilimumab, MDV3100 and provenge are among several other promising new drugs that were supported by PCF funding and are now either in clinical trials or awaiting FDA approval. Ipilimumab and provenge are both immunotherapeutics that have been shown to stimulate the body's own immune system to fight cancer." One can only wonder when these developments will hit our shores, I know for a fact that Aribaterone commenced earlier this year in Australia after a couple of years in the USA. The sad thing is you won't see a possible Provenge trial here until mid to late next year if you're lucky. On a side note, sorry that you are suffering from aggressive prostate cancer, my father passed away two weeks ago from a procedure that was a spinal block and I won't go into anymore details but it wasn't the cancer that killed him. But he was in the terminal phase. And I say a prayer for you that you won't go through what he went through. Despite our differences, I wasn't trying to piss you off, but share my experiences and points of view, I wish you the very best. Wed, 02 Sep 2009 02:51:00 GMT https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/All-fired-up/m-p/2149#M595 2009-09-02T02:51:00Z