From Patient to Thriver - Planning for Survivorship

Once a cancer patient has completed treatment, and had no further indication of disease for several years (usually a minimum of two) – the patient becomes a survivor.  This is cause for celebration – but also challenges.  “Coping with survival!”   Here's a powerful essay by someone approaching that point - not with anal cancer, but the emotions are the same!   Even the definition of survivor becomes an emotional issue - some authorities consider that survivorship begins from the day a person gets a cancer diagnosis - but many patients simply refuse to apply that term to themselves, as this essay explains.   Dana Jennings writes about this very nicely for post-prostate cancer treatment (which involves the kind of pelvic radiation that anal cancer patients undergo).  For a short discussion, see this synopsis in Cure magazine.  Three other fine essays about the stress of post-treatment life come from Cindy FinchSusan Gubar, and Barbara Tako.

Cancer survivors will have different needs in many aspects of life than their colleagues who have not fought this devastating disease.  This may result from the nature of the cancer itself and its effects on the body, or from the treatment that eliminated it.  See for example, this essay about cancer-related fatigue. Recent research shows that cancer survivors do experience greater fatigue, and have medical needs that are different, and greater, than those of the general public.  This is particularly true of the diseases of aging, which may manifest much earlier in a cancer survivor.  If cancer survivors do not become, or continue to be, physically active, this problem is enhanced.  Adult survivors of childhood cancers appear to smoke and drink to excess much more than adult survivors of adult cancers.  Research is underway in many places, for example by the National Comprehensive Cancer Network (NCCN),  to try to understand these behaviors and help combat them.  For a comprehensive review of exercise and nutrition needs, see this article reporting the findings of the American Cancer Society's panel of experts.   Post-treatment pain can be a problem in all cancers; see this discussion in Cure magazine.  Whatever emotions you may battle, don't let them overwhelm you; while the idea that "negative thoughts" are responsible for your cancer is another unproven theory to avoid, "believing the worst" can indeed fill your life with gloom and affect your willingness to make the changes you may need in your life to mitigate the effects of the treatment and reduce the chances of recurrence.  Survivor guilt can add stress when a beloved friend or family member succumbs to this disease.  There are numerous articles and essays online about coping with cancer - see this one, Cancer is Not a Glft, for some succinct tips.  And realize that whatever worries you have, you are not alone - doctors and researchers are learning that effects of treatment, and just having been a patient, may last for a long time.  See a discussion of these long-lasting effects here.   And there are websites for the most sensitive issue of all, sexuality and cancer; see this UK site, for example, and this M.D. Anderson page.

More immediately, cancer patients moving from treatment to recovery, and those who have been given a clean bill of health - the hoped-for NED, No Evidence of Disease – should be working with their medical team to create survivorship plans.  The American Society of Clinical Oncology provides a detailed look at what is involved here.  Another resource is the Foundation forCancer Survivors.   I Had Concer offers connections with survivors of a wide range of cancers, from across the country.  The discussion on its site of the psychological challenges of surviving cancer is of special interest, as are stories of thriving survivors like Barbara Padilla – an opera singer who was told she would never sing again after her treatment for Hodgkin’s Lymphoma, but thrills audiences today.  Another group of charities, including initiatives in Canada, Germany and the UK, focuses on recovery support.    Your caregiver will also need to adjust to your new status of survivor!  

Consider talking to your doctor about low-dose aspirin for heart health, and for possible reduction of cancer risk; the studies are not yet conclusive on the latter, but the signs are promising (see this on aspirin and melanoma, for example.  And don't forget to get your flu shot, and consider vaccination against pneumonia as well!  You may be able to donate blood as you recover - blood collection agencies are reconsidering this issue, as there is no documented case of cancer transmitted by blood donation.

Many of the major medical sites about cancer include information on survivorship; see, for example, the American Cancer Society, and the National Cancer Institute pages.  The American College of Surgeons puts "a survivorship plan" as one of its requirements for medical center certification.  The American Society of Clinical Oncology has a very thoughtful, and thought-provoking, page on "Post-Traumatic Growth and Cancer.“  Without indulging in the “cancer is a gift” approach, which many patients find to be patronizing, the article reviews how the trauma of cancer can lead to psychological or spiritual growth, along with stress.  The Lance Armstrong Foundation website has a comprehensive discussion of survivorship issues.  The M.D.Anderson Cancer Center links to survivorship resources are here.  Cure Magazine has an excellent summary article, with a list of resources.  Medical centers can participate in a training program for survivorship called STAR, and patients can find these resources here.

The most comprehensive study of survivorship I’ve encountered was undertaken by the Institute of Medicine, resulting in a publication of several hundred pages – from Patient to Survivor.  You can read it online here.

An illuminating look at survivorship comes from Dr. Wendy Harpham, a physician at M.D. Anderson, who has chronic lymphoma.  Her book is a guide to living life to the fullest while combating cancer or other serious diseases: *Happiness in a Storm, Norton, 2006.  Dr. Harpham maintains a website with a blog discussing survivorship issues.   Learning to appreciate life through the cancer lens is discussed in a powerful essay by Dr. Mache Seibel, married to a cancer patient on the Huffington Post site.  And remember, every day begins a “New Year."

You can read  Cancer Fighters Thrive magazine online, with many inspiring patient stories; here, for example,  a coping story about stress and cancer.  

One of my favorite survivor stories (other than my own!) was written by Pasquale Bruno, cookbook author and restaurant critic – who has beaten back one of the most aggressive forms of brain cancer, and cheerfully says, "Bug Off, Big C."  He inspired me to create my own list of "what's been wonderful about my life."   All of us know that survivorship is not forever.  The key to accepting that is beautifully expressed by Dr. Oliver Sacks, treated for a rare cancer of the eye and now facing the end of his life, in his essay on the joy the extra years his treatment gave him,  "My Own Life."  

May we all be wise enough to take each day as a gift, and live it to the fullest.  And celebrate  Cancer Survivors' Day!  One way to celebrate is to become a mentor for a new patient - the HPV and Anal Cancer Foundation Peer to Peer program is an excellent way to reach out.

© H. M. Carter-Tripp 2012