In CR’s fall 2008 issue, we looked at issues of psychosocial support and hospice care, as well as treating the whole person rather than just the tumor. We asked readers to respond with their thoughts on what kind of psychosocial support they received, if any, and what needs to be done to improve this type of support for cancer patients.
Below are a few excerpts from some of the responses we received. If you’d like to participate in CR’s reader feedback and possibly have your answers published in a future issue, join our free e-newsletter list.
When I was diagnosed with stage IV metastasized breast cancer after having annual mammograms and sonograms, I was numb.
I’ve joined a support group, participate in an online support group, and see a nurse practitioner who specializes in mental health every few weeks.
—Colleen Logan Hofmeister
[After diagnosis] I found myself on a medical merry-go-round that didn’t seem to have an end. Figuring out how to tell my family I might die was terrible. I ended up being their support system.
Fortunately, the type of cancer I have has a terrific support network, and that group of people living with an incurable cancer shared many years of experience and help. Their survival stories and the permission to talk about my diagnosis in a safe environment was the best part.
[Primary care physicians] need intensive training on how to tell patients about the diagnosis and a list of immediate phone numbers of support groups or centers that can offer emotional, psychological and care support.
—Glenn S. Ross
Eventually I decided to see a psychologist. Being able to have my anxiety, fears and concerns validated was what I needed to regain confidence and strength to go forward in my journey.
I wish my doctors had more time to address my concerns or even refer me to someone. It is hard to go back to life like before because it no longer exists.
I received no support. I did ask about support groups for younger men with advanced prostate cancer, but I was consistently told there were no services to meet my needs.
I started to write a blog about advanced prostate cancer and have continued for well over a year and a half. I have also provided testimony at the FDA about drug applications, met with members of Congress, spearheaded a petition drive to make prostate cancer a national priority and led other cancer support programs.
To me, this self-psychosocial support has served as my alternative to the lack of formal support.
New York City
There need to be well-trained personnel who can follow the cancer patient through his/her journey and who can be there when needed.
Regina, Saskatchewan, Canada