Thank you to all the men and caregivers who took the time to participate in the recent IPCC/Bayer survey about advanced prostate cancer & its symptoms. Your involvement allowed us to hear you, and gather statistics to create awareness about some of the problems when prostate cancer patients don’t discuss their pain, fatigue and other symptoms. The results of the survey also illustrated how caregivers perceive the patient’s pain and symptoms differently, and communicate differently. A website has been launched where you can view illustrated results of the survey, a doctor’s discussion guide for advanced prostate cancer patients, and more.
One statistic that struck me was that 71% of men said that
sometimes they didn’t know what was causing their symptoms.
But that was also about the same percentage of men (70%) who were reported “ignoring” their symptoms (the most common symptom is pain) What this reminded me of, was that men often experience joint pain at the onset of hormone therapy, but this pain is usually from arthritis exacerbated by the hormone therapy – not a cancer related pain. So there is a
difference between symptoms from the cancer, and side effects from the cancer treatment. Discussing your pain in more depth with your nurses or physicians should empower them to help you understand the difference between the two. It is often a relief to know that your pain is not a symptom of your cancer.
On the other hand, if it is a symptom of your cancer, you may have other cancer treatments available to you (besides simple pain medications). Th is is where the conversation is important
between patient and physician.
So, thank you to all the caregivers and patients who took time to answer these survey questions, either online or by phone. We hope this Men Who Speak Up campaign brings more awareness, conversation and results to men who are battling advanced prostate cancer. We also hope you’ll find something useful on the Men Who Speak Up website. PAACT is grateful to have been a part of this project along with members of the IPCC (International Prostate Cancer Coalition).
Watch this short video of Jan Manarite’s interview – “We now have some treatments that can be given to you BECAUSE you have pain…”