Newly diagnosed: My husband was... - Prostate Cancer C...

Prostate Cancer Caregivers

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Newly diagnosed

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My husband was diagnosed with advanced prostate cancer in March and started chemo and testorone blockers. His psa is dropping down to 70 from a high of 900 but he is in alot of pain from the bone mets and has a hard time walking. Its frustrating because the docs don't tell us much and we don't know what to expect. Does the pain mean the chemos not working? Hes had 4 sessions so far but the pain hasn't lessened. Wondering about others experiences with this?

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At our support group last Sunday, the entire topic was about what we were told and what we were never told about prostate cancer and its treatment. Despite a very well staffed and organized comprehensive cancer treatment center here in Providence, RI every man in the group noted failures of his medical team to inform him, to support him and to be available to him. The result (for many but not all) is to turn us from passive patients yielding to the dominance of the physicians to active self-advocates demanding better communication and better care from our health teams. One man noted in his post-op visit that his physician -- a revered expert in the field -- had not looked at him even once during the "interview." He called him out and said "it feels to me like you really do not care." More of us as patients and family have to make clear our expectations that our questions are answered. Time to roar!

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