topic Re: Forgotten Cancers in Living with cancer

Forgotten Cancers

Kathyhtak — Tue, 20 Aug 2013 15:03:55 GMT

Did anyone catch the "forgotten cancers" segment on The Project Tuesday night (20/8/13)? Should be available to view on their website soon. (Also see Cancer Council media release). Interesting topic. These forgotten cancers generally have poor outcomes; they are are underfunded and we need to raise awareness for funding further research, for better outcomes. I have one of the forgotten cancers, oesophageal. I would suggest having our own category to select when setting up our profiles in Cancer Connections, rather than lumping us under "Other" might be a good place to start awareness raising! Who else has one of the "forgotten cancers"?

Re: Forgotten Cancers

Jules2 — Tue, 20 Aug 2013 23:29:28 GMT

Hi Kathytak I have had a little known cancer, although because it comes under the umbrella of another well known cancer it is not quite the same as you. I hear what you are saying with regards to having a separate section in cancer connections as it would certainly be an acknowledgement that the particular cancer exists. I didn't see the program but it certainly sounds interesting. Julie

Re: Forgotten Cancers

kj — Tue, 20 Aug 2013 23:54:44 GMT

Missed the program but I registered with Forgotten Cancers when it was started and gave DNA and answered a Questionnaire along with other members of this site.I have Pancreatic Cancer. kj

Re: Forgotten Cancers

Wed, 21 Aug 2013 00:24:00 GMT

Hi Kathyhtak, kj and Jules2, Just a short note to let you all know that we recognise that the current dropdown options available at registration and related Group options do not properly represent the specific situation of all members. We will be launching a redeveloped Cancer Connections website later in the year that will include expanded registration options and related new Groups better suited to cater for the broad range of circumstances and situations experienced by the Cancer Connections community. Kind regards, Felix Cancer Connections Coordinator

Re: Forgotten Cancers

Jules2 — Wed, 21 Aug 2013 01:14:37 GMT

Felix Thanks for the information and I look forward to seeing the new revamped version when it's available. 🙂 It is a great site run by great people who are always willing to listen and also put their pov across too. This site has gone from strength to strength since I first joined and it is great to have an Australian site with information that is relevant. Thank you for all that you do. Julie

Re: Forgotten Cancers

Kathyhtak — Wed, 21 Aug 2013 02:17:26 GMT

Hi Julie and kj, Good to hear from others with forgotten cancers; I wish you all the best with your cancer journey. kathyhtak

Re: Forgotten Cancers

Kathyhtak — Wed, 21 Aug 2013 02:20:20 GMT

Hi Felix, Thank you very much for your response. I echo Julie's words and look forward to seeing and utilising the revamped Cancer Connections site when launched. Kathyhtak

Re: Forgotten Cancers

kj — Wed, 21 Aug 2013 02:28:53 GMT

Kathyhtak Thanks I also wish you the best in your journey kj

Re: Forgotten Cancers

Jules2 — Wed, 21 Aug 2013 03:00:03 GMT

Hi Kathytak Thanks and your sentiments returned to you. :) Julie

Re: Forgotten Cancers

Wed, 21 Aug 2013 09:05:55 GMT

Hi Everyone, My apologies if you have already seen and read this recent newspaper article on 'Forgotten Cancers', but it is an excellent overview of some of the very same issues you have identified and commented upon in this discussion thread: http://www.heraldsun.com.au/news/forgotten-cancers-are-killing-australians-amid-funding-shortfalls/story-fnii5s3y-1226690798500 Kind regards, Felix Cancer Connections Coordinator

Re: Forgotten Cancers

Kathyhtak — Wed, 21 Aug 2013 09:39:08 GMT

Hi Felix Thanks for the link, I had not previously seen that article - very informative. kathyhtak

Re: Forgotten Cancers

SILLY — Wed, 21 Aug 2013 15:19:55 GMT

I missed the programme too . I just skimmed through the articles via the link posted by Felix . I took part in the Forgotten Cancers Project too . I have a head and neck cancer ,a rare cancer called Adenoid Cystic Carcinoma . About 75 people are diagnosed with this cancer annually in Australia .I cannot say what the mortality rate is because when people die from this it may only be recorded as a death from cancer or some complication of having had it . There is no code for it to be placed on a death certificate . I was able to get my information from the Cancer Registry of Australia . Some research from the USA recently publicised shows promise of a future cure as it identifies three groups of patients . This will lead to the search to find chemo regimes which do not exist at present . All moneys towards this reasearch are donated as there is no government funding for ACC . Forgotten cancers are a world wide problem .

Re: Forgotten Cancers

Kathyhtak — Thu, 22 Aug 2013 09:05:37 GMT

Hi Silly, Thanks for your response - I was interested to read about your rare cancer, ACC is one I had not heard of before. I wish you all the very best. : ) kathyhtak

Re: Forgotten Cancers

SILLY — Sat, 24 Aug 2013 02:03:19 GMT

Thanks for your good wishes . I'm going well .