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The Survivors Guide to Advanced Prostate Cancer (latest version)
Paul Edwards posted a topic in Announcements, meetings and other resourcesA major update of "The Survivors Guide To Advanced Prostate Cancer" written by Joel Nowak has just been released. Joel is the recipient of the 2014 Harry Pinchot award. The Prostate Cancer Research Institute makes the Harry Pinchot award annually to acknowledge excellence in prostate cancer education, research, advocacy, and community support. Joel is a survivor of Thyroid, Recurrent Prostate and Renal Cancers. He is the Director of Advocacy & Advanced Prostate Cancer Programs run by Malecare, America’s largest volunteer men’s cancer support group and advocacy nonprofit organization. Joel says that the Guide “is written squarely from the survivor perspective with multiple tips and out of the box ideas about coping with prostate cancer and its treatments. Prostate cancer survivors suggest many of the ideas and “fixes” as they share how they have dealt with the disease and the treatment side effects. The Guide is not doctor oriented or doctor written. It is accurate and honest. It deals with the real issues we as prostate cancer survivors face on a daily basis.” To download the Guide, go to the Malecare web site (www.malecare.org) and then click on the tab marked Advanced Prostate Cancer. There you can sign up by providing your email address to receive the link to download the Guide.
Advanced Prostate Cancer Pack - a good starting point
Paul Edwards posted a topic in Announcements, meetings and other resourcesIn June 2014 the Prostate Cancer Foundation of Australia (PCFA) released a new Advanced Prostate Cancer Pack. The Pack has already been sent to existing members. New members who join the Group will receive a copy of the Pack by post. A copy of the Pack is available online by clicking this link. Two members of our Group (Jim Marshall and Tony Maxwell) were members of the Expert Advisory Panel which helped to develop the Pack. The Pack is a useful starting point for someone who is newly diagnosed with advanced prostate cancer. However the Pack is not a comprehensive guide to the advanced prostate cancer journey because there are some areas where it is incomplete. Some examples of where the Pack is incomplete include: Recent developments in drugs and new treatments In recent years there have been enormous changes in the drugs available for treatment of advanced prostate cancer. The Pack does not mention important new drugs such as Abiraterone (brand name Zytiga), Enzalutamide (brand name Xtandi) or Radium 223 (brand name Xofigo). Presently the treatment of advanced prostate cancer is a state of flux as to: what drugs should be used to treat advanced prostate cancer? whether drugs should be used singly or in combination? in what sequence should the various drugs be administered? For example, there has been a recent suggestion that Chemotherapy plus Hormone Therapy should be used to treat newly diagnosed men with metastatic prostate cancer. Choosing a Doctor The Pack omits the following advice previously contained in earlier publications about choosing a doctor: “Choosing a doctor you feel comfortable with and can talk to is important. You need to feel that the specialist is acting in your best interest, and can give you the help and answers you need. There is also good evidence that seeing a doctor with a special interest and extensive experience in prostate cancer will result in improved outcomes. Consumer organisations recommend that you ask what experience a specialist has in the recommended treatment. Other things may also affect your choice. Some people are able and happy to travel a long way for specialist care. Others either cannot travel or prefer to remain at home, close to family and friends. Some people prefer specialists who deal with them as equals, discussing all options with them and assisting them to make the final decision, while others like their doctors to take the lead and make decisions for them. Studies have shown that specialists are more likely to recommend treatments that they understand and practise. It is possible that you will get different recommendations from different specialists. Speaking to both urologists and radiation oncologists can be helpful.” Treatment Record The Pack omits the following advice previously contained in earlier publications about keeping a treatment record: “You may find it useful to record key information about your diagnosis and treatment. This can help a doctor track your progress if all your medical records are not available and it may also help you keep track of changes in your care. In its simplest form, your treatment record is just a diary comprising a date, what happened, symptoms, test results and reminders to yourself about what you need to do.”