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.
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I've found a couple of American websites that people might find interesting.
The National Cancer Institue has a section of their website that is dedicated to yound adults with cancer. Their website is
The Memorial Sloane Kettering Cancer Centre has a Survivorship Guide which can be found at www.mskcc.org/mskcc/html/65801.cfm
They have information about late effects and late effects follow up. It is interesting to see the types of support and follow up programs that are available in this hospital. Maybe Australia could develop a few of these programs too.
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Here are a few websites that I have found useful:
On Trac @ Peter Mac
Lance Armstrong Foundation
Revive Web site
This website can be found at The Leukaemia Foundation's Website. It is a discussion board that has been developed for young adults diagnosed with blood cancers. It also provides information on issues affecting young adults. The website provides links to other websites that relate to young adults. Although it is aimed at people diagnosed with blood cancers much of the information would be relevant to any type of cancer.
This is a UK website that provides information to adolescents who have finished treatment for cancer. Provides factsheets on late effects and follow up health checks. Although it is targetting adolescents the information is still relevant to young adults who have had treatment for cancer.
"Long Term Follow up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers"
can be found at www.survivorshipguidelines.org
I highly reccommend this article. It can be found on the Children's Oncoloy Group Website.The Children's Oncoloy Group is an American organisation that advocates for late effect follow up for children, adolescents and young adults. It gives a comprehensive guide to common late effects and reccommendations on late effects follow up. Why don't we have any of these guidelines developed in Australia and provided to patients when they finish treatment?!?
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The Leukamia Foundation runs support groups for people who have been diagnosed with lymphoma. I have had treatment for Hodgkin's Lymphoma and I started going to their meetings this year. I am finding it very helpful.
The group that I attend is in Victoria. The group is facilitated by Tania Cushion. Her background is in haematology nursing and she is the National Lymphoma Coordinator with the Leukaemia Foundation. The Lymphoma support group in Victoria is made up of people of various ages and have different types of lymphoma.
The website for the Leukaemia Foundation is www.leukaemia.org.au and their contact telephone number is 1800 620 420.
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Your comment on cancer statistics reminded me of a check I had a couple of years ago. I have had treatment for Hodgkin's Lymphoma and I have breast cancer screening as part of my follow up routine. This particular check up my usual surgeon was away so I saw a different surgeon. I think that this person's intention was to reinforce the importance of breast cancer screening but all she managed to do was frighten me.
This person felt that I was at an extremely high risk of developing breast cancer and listed all the reasons why (the complete opposite of what my radiation oncologist had said prior to commencing radiotherapy). She capped this off with the comment that "We always see this happen at the ten year mark. But don't worry, we always get the cancer in the early stages." I felt extremely frightened and upset. I felt like I was being treated like a walking doomed woman.
I am now a couple of years post that particular appointment (and no I haven't developed breast cancer!). I feel very anxious whenever I do review appointments. One of the things I am trying very hard not to do is predict what might happen at my appointments. I don't know what the future holds so I really don't know that I am definitely going to get bad news. I have decided to use the same strategy with negative doctors and statistics. They do not have a crystal ball and they do not know what my future holds. Not knowing what the future holds feels ok with me sometimes.
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It is reassuring to know that other people feel scared sometimes too. I feel less alone and less neurotic about that. I am so thankful when other people speak so honestly about how they feel because it makes me realise I am not the only person who feels like this.
I have been having to learn to live with "the fear" a lot lately. Last year I went into several of my routine check ups thinking that everything is going to be ok (I have had chemo and radiotherapy for hodgkin's lymphoma). I feel ok so these test results will be ok. It is frightening to get test results back and have them find "something that we just need to keep an eye on" or they find something and say "you'll probably need surgery for this". I had this happen several times last year.
As well as this I also had a lesion removed from my arm in 2007. I thought that everything was going to be ok. It was the first doctors appointment where I didn't feel anxious about it being cancer. But then they diagnosed this lesion as a melanoma. But it was absolutely frightening to be told that I had melanoma and even more so when the surgeon said "There's not much we can do for melanomas that have spread"(thankfully a second opinion from another pathologist found that it was in fact a nuerothekeoma which is a bening tumour).
A couple of months ago I developed nightsweats.I had blood tests and a PET scan which were all normal (which is good). But I have continued to experience nightsweats and I feel that these are getting worse. So at the moment I am having to wait and see.
Through all of these experiences I am having to learn to live with the anxiety, fear and uncertainty. My normal everyday life does not stop just because these health issues are occurring. Sometimes it is not easy to keep going and to keep juggling the normal everyday life with these fears and doctors appointments. I am slowly learning what supports work well for me during these times. Here is a list of what I am finding helpful:
attending the lymphoma support group, becoming involved with this website and the support group on this web site, having a supportive GP who is good at listening to my concerns and will do a blood test when I am being a worry wort, telephoning and speaking to the clinical nurse consultant at my treating hospital, finding a supportive psychologist who is a good listener but who can offer useful strategies for managing anxiety and depression, having lovely friends and family to talk to and just hang out with (particularly on the bad days), journal writing, patting a dog, cat or horse, exercising and relaxation. I think the most important one is taking care of and being kind to myself during the difficult times.
When I feel scared or anxious I try to accept the presence of these feelings; that it is normal to feel like this during these times. I remind myself that these feelings will pass. Whatever else I am facing at the time will pass too. I am working very hard not to predict the future (worrying about worse case scenario, I really don't know what the future holds) or mind reading (worrying that the doctor is going to tell me bad news, afterall I really don't know what other poeole are thinking).
I am sure there are more but these were the ones that come to mind. What do others find useful at these times?
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I did not expect to be diagnosed with cancer. When it happened, it turned my world upside down. I once said to a friend that my life used to fit into this nice, neat little bucket. Then cancer came along and kicked my bucket over; pieces of my life spilling out across the floor.
As I gather up these pieces, I hold each individual piece in my hand and examine them for the first time. During this time of self examination, I find that some pieces are missing. I will never get these back. Others are damaged and changed forever.
Then there are the pieces that I choose to leave aside. I don't want these ones any more. As time passes, there are new treasures that fill these empty spaces inside my bucket. The contents of the bucket changes. My life has changed. I know that my life will continue to change. Nothing stays the same forever.
I find that, with time, the bucket begins to fill once again...
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.