The following testimonies are based on conversations and online diaries from a prostate cancer patient, a caregiver and a physician (although not connected), describing how advocacy impacts their experience. The patient and caregiver story were kindly provided by Treatment Diaries, a group aimed at advocating for patients, caregivers and their families by anonymously connecting them to individuals who share their illness experience. For more information please visit treatmentdiaries.com.
Please note that this article describes the personal story of a prostate cancer patient, a caregiver and a physician and may not be typical of the prostate cancer patient and caregiver experience. This article is not intended as medical advice or to replace advice offered by medical professionals.
Advocacy through the eyes of a patient
Early October 2014 when I found out I had prostate cancer, I Googled it. I found more information than I could make sense of and it was the advocacy groups and experiences of survivors who simplified it for me. What I uncovered were experiences similar to mine and information to support my diagnosis.
My cancer was considered to be low grade, however many patients in my shoes were still opting for aggressive treatment, so I made the decision to undergo a radical prostatectomy and this turned out to be a good decision as the biopsy came back with a Gleason score of 7, which is considered to be mid/moderate grade cancer. I had to wait four more weeks for another PSA test to see if they got it all. Encouraging words from those with prostate cancer really made a difference.
At my last consultation I received the best news I could have hoped for – no indication of cancer at this time. Now I am no longer a patient, but a survivor who should share his experience with others. The 12 months following my diagnosis allowed me to experience life’s highs, lows and a great deal of uncertainty. But, with the support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff and an extremely supportive group of survivors, I’ve continued to stay upright.
Advocacy through the eyes of a caregiver
My husband was treated with hormone therapy for almost three years, followed by more radiation and surgery. In conjunction with this, he took steroids and various supplements, but a lack of exercise caused his muscles to atrophy and resulted in him using a cane and then a wheelchair.
I completely immersed myself in research and joined certain message boards as a way of coping. I’ve given interviews to several prostate cancer publications and I started my own blog to keep family and friends up to date. It also became my diary where I could go back and look up dates and treatments.
Probably my biggest coping mechanism was our patient advocate, and I can’t begin to tell you how much she did for me and my family – things we would never have thought of. I feel that every treatment center or office should either have a patient advocate or access to one. It is like having another family member on hand.
Advocacy through the eyes of a physician
We have a patient support group that meets once per month and often, when we are telling patients about a change in the path of their cancer or recommending a new form of therapy, we recommend that they consider attending that monthly support group to meet other individuals in the same situation. We also have a program called ‘phone a friend’ where there are specific members of the group who are willing to talk to other patients openly about their own experiences and challenges, which we have found to be very helpful. Not all patients are interested in it, but those who are find that it can be really useful in terms of decision making.
Patients often find their way to advocacy groups on their own, even between visits when things are going well for them, and that’s the value of having a community – that meeting of folks who are engaged and willing to share their stories – because uncertainty is one of their biggest concerns. Learning from others who have gone before them can be incredibly valuable, even if things are going well for them at that time.