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Lost in Transition

TimBucklandsmallby Timothy Buckland

 

View our Patient Power Video “Fighting Cancer in Your 20’s:  Lessons Learned”

Lost in transition — Reprinted from, CMAJ November 8, 2011; 183(16): 1940 by permission of the publisher. © 2011 Canadian Medical Association

From a patient’s perspective, cancer is not only a physical illness. The emotional toll incurred upon diagnosis can be equally devastating but is often overlooked. As a cancer survivor, I know that for young adults this emotional hardship could not come at a worse time. Young adults’ lives are inherently transitional as we move from the security of adolescence to the independent development of careers and families. This rapid development and the accompanying fast-paced lifestyle are stalled by the diagnosis of cancer, creating great discordance.

My diagnosis came just before I was supposed to start university and lead to me missing my first semester. Seven years later, I completed treatment and expected to regain my former life, but discovered that re-integrating into a cancer-free life was incredibly difficult. Previous work has shown that the inability to re-integrate can initiate feelings of isolation, anxiety, decreased self-esteem and depression which may be long-lasting without the proper support.[1] An apparent flaw in our health care system is the lack of emotional support for this post-treatment barrier, forcing young adults to fight this battle alone.

The most difficult psychological aspect of re-integrating into my “old” life was overcoming social isolation. This is one of the most devastating and yet understudied emotional trials for young adult cancer patients. In my opinion, this trial begins during treatment while navigating a medical system generally designed for a much older patient population.[1] It was a surreal feeling to walk into a world- renowned cancer centre and be the youngest person there by a minimum of 30 years.  In an environment that is already anxiety ridden, this lack of peer-support tailored to a young adult compounds this problem. I find it unacceptable that only five centres in Canada have this level of peer-support.[2]

The isolation continued post-treatment, manifested by the inability to re-integrate into a cancer-free life. I was segregated by my physical appearance and emotional instability, which made it difficult to converse normally with my peers. This in turn affected my personal relationships and academic endeavors.  This post-treatment isolation was compounded by the same lack of peer-support that exacerbated the in-treatment isolation.

Although it would seem that isolation would dissipate with time, the emotional long-term effects can influence patients well after treatment has finished.[3] As young adults have their entire lives ahead of them, emotional support networks need to be implemented to attenuate long-term emotional damage due to isolation.

Based on the psychosocial challenges young adult patients face and the corresponding long term effects, it is critical that targeted health care policies meet these patients’ post-treatment needs. Upon completing treatment, it was left up to me to go and find the support I needed. Locating the appropriately supportive organizations is a very difficult task for survivors who, after finishing treatment, are fatigued or physically unable to complete this search. In my opinion, this situation is unacceptable.

Young adult tailored support groups in post-treatment care should be a mandatory component of all major cancer centres. A way of supplementing a costly professionally-led system is to use a peer-led support system which has been shown to have few qualitative differences.[4]  Helping young adult survivors create these groups, would allow both emotional support and encourage the formation of communities or “cancer families” which could further reduce the feeling of isolation.[5] In either case, professionally-led or peer-led, these support groups will create a community for young adults and attenuate feelings of isolation and long-term associated distress.

Only when these support systems are nationally accessible can we effectively help all young adults’ psychological needs. By removing the onus of young adults to find their own support systems, their focus can shift from surviving to thriving.

This article is the winner of a competition to write a paper on the subject of cancer for the Canada-wide student journal, Health Science. Inquiry: hsinquiry.sa.utoronto.ca

 

References

[1] C. Rabin, N. Simpson, K. Morrow, B. Pinto. Behavioral and psychosocial program needs of young adult cancer survivors, Qual. Health Res. (2010) .

[2] Canadian Cancer Society’s Steering Committee. Canadian cancer statistics 2009, (2009) .

[3] C.L. Treadgold, A. Kuperberg. Been there, done that, wrote the blog: The choices and challenges of supporting adolescents and young adults with cancer, J. Clin. Oncol. 28 (2010) 4842-4849.

[4] C. Stevinson, A. Lydon, Z. Amir. Characteristics of professionally-led and peer-led cancer support groups in the united kingdom, J. Cancer. Surviv. 4 (2010) 331-338.

[5] J. Ussher, L. Kirsten, P. Butow, M. Sandoval. What do cancer support groups provide which other supportive relationships do not? the experience of peer support groups for people with cancer, Soc. Sci. Med. 62 (2006) 2565-2576.

Canadian Medical Association assumes no responsibility or liability for damages arising from any error or omission in the text or from the use of any information or advice contained in this material.


Timothy Buckland is a 26 year old two time testicular cancer survivor.  He recently completed his Master’s degree in Biochemistry where he studied pro-growth signalling in breast cancer.  He has also begun working at the Canadian Cancer Society as a Revenue Development Coordinator.

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2 Responses to Lost in Transition

  1. Great story Timothy! I very much recognise your story as I’ve been there. This inspired me to create LYLAC in the UK: Live Your Life After Cancer to support people exactly in that transition phase.

    • Tim says:

      Hi Isabel,

      I am currently at a stage in my life where I am trying to create support for others just like us. I would love to pick your brain sometime as to how you got started. Send me a line at twb@ualberta.ca

      Tim

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