Adolescent and young adult cancer survivors are failing ...

[Nikki_YAC]

This breaking news (which can be found at Science Alert) highlights that our AYA and YAC community are at a great disadvantage! I was actually at the COSA conference last week attending the COSA AYA Workshop because I am the consumer rep on the COSA's AYA Cancer Steering Committee. Please add your comments about what you think of the below current news item.... "Associate Professor Michael Jefford, from Peter MacCallum Cancer Centre, will tell the Clinical Oncological Society of Australia Annual Scientific Meeting, that around 1000 adolescent and young adult cancer survivors each year were missing out because oncologists, GPs and other health professionals aren’t equipped to respond to their unique needs. “Adolescents experience cancers different to those in children and adults,” Professor Jefford said. “They also have to deal with a range of issues as they move into adulthood. A cancer diagnosis and treatment can seriously interfere with normal development and affect important aspects such as education, career plans and efforts to establish independence.” According to Professor Jefford, young survivors were falling through the cracks because health professionals in general had little understanding of how to manage these types of situations or lacked resources to provide the intensive support required. While consideration had been given to establishing specialised centres, the dispersed nature of the group meant many would have to travel frequently from outer suburban, regional or rural areas to access the services. Professor Jefford said that cancer and its treatments could have serious long-term consequences. The cumulative incidence of a long-term health condition, 30 years post diagnosis was 73%, with a 42% incidence of severe, disabling or life-threatening conditions, or even death. “This figure is much greater than in siblings – essentially it is a consequence of cancer and cancer treatments,” he said. “Young people may also engage in health risk behaviours such as smoking, binge drinking or drug use, or may fail to adhere to medical treatment regimes, which can have serious implications. They need to be aware of the consequences of cancer and its treatments and know how they can stay well and return to a healthy, rewarding life.” “We need to make a concerted effort to research and develop age-appropriate models of support, during and after cancer treatments,” Professor Jefford said. Online peer support using new media tools like Facebook, Twitter and YouTube were among options that could be explored." ref: http://www.sciencealert.com.au/news/20091811-20256-2.html

[flight]

Hi Nikki, I would like to add that support is needed not only during the acute phase of treatment. What about when young adults have completed their treatment? Support and information is also needed to help people stay well once treatment is completed. As your article states, younger people are at a higher risk for health problems including a higher risk of developing another form of cancer once they have completed treatment. Yet how many late effects clinics are there in Australia? I'm only aware of 2. More information and support is needed not only to treat the cancer but also to help people maintain their health once they have completed treatment. I wonder how much health education is provided on late effects and follow up health checks to young adults once treatment is completed? For example, when I was diagnosed with cancer I was given lots of resources from my treating team on chemo, radiotherapy and lymphoma. Yet when I completed treatment I was not given similar types of resources on late effects or follow up health checks. I have only been able to find this information on the internet on American websites that are aimed at children who have undergone treamtent for cancer (I was 22 when I had treatment). Are there any Australian guidelines on follow up health checks for people who have had treatment for cancer as a young adults? I had radiotherapy as part of my treatment. I am now at an increased risk of developing breast cancer. I have had one doctor state that the risk is low and recommends annual breast check ups. Yet another doctor believes that my risk of developing breast cancer is high. That it is the same as someone who has a family history of breast cancer. This person recommended 6 monthly check ups and enquired if anyone had discussed prophylactic mastectomies with me. So who do I believe? I rang the Cancer Helpline to find out information on the risk of developing breast cancer in women who have had treatment for Hodgkin's but they don't have any information about this. So how am I supposed to make an informed decision about this if there is no resources available? How am I able to feel comfortable that I am receiving appropriate follow up health checks if there is no information on these? If more and more people are now surviving cancer then where are the services and information that theses people are going to need once their treamtent is completed. This is a vital issue as younger people are more likely to be impacted by late effects. Interested to hear yours and other people's thought.

[Nikki_YAC]

Hi flight, Thanks for responding to this important issue. The issue of late effects and the fact that "Support and information is also needed to help people stay well once treatment is completed" I agree that this is a key area that needs attention for anyone facing cancer. And particularly so for YACs, like you have pointed out, because we have more potential of life/year loss than people say in their 60s and 70s. I completed a study last year as a part of honours in Health Promotion/Health Education, where I researched the "Lived experience of young adults aged 25 - 44 years with cancer in Australia". One of the findings from this study was that young adults affected by cancer want to provide themselves with the best possible good health in their future life. Many were searching the internet for resources on how they could prevent not only a re-occurrence, but also like you mentioned - a different type of cancer, because it is a well known fact that they now face an increase risk in getting many other new types of cancer as a result of the cancer treatment they have already been exposed to. As far as late effects clinics, I agree once more with you - there are not many. I attend the Haematological Late Effects Clinic at Peter Mac. I only found out about this clinic by chance when attending a CCVic talk in Albury just over a year ago. Like you, I was not given any guidelines to how to live life and look after myself once my treatment had stopped. I like the question that you pose here... "Are there any Australian guidelines on follow up health checks for people who have had treatment for cancer as a young adults?" ...and so I wonder if anyone else out there was given any guidelines when they were discharged from hospital or finished outpatient treatment? If so, please post it here - along with knowledge of any other late effects clinics, as this will help us to see what is actually out there to help future cancer patients :) Flight - what are the 2 late effects clinics you know of?

[flight]

Hi Nikki, There is the Late effects clinic at Peter Mac in Melbourne. There is also one in South Australia but I can't remeber which hospital it is located at.