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The diagnosis of cancer is challenging for most people and the first reaction may be of confusion with a lack of understanding. We rely on expert advice from our doctors and nurses to make good decisions about our care. However there is a difference with prostate cancer as we often have to choose between two or three good treatment options; sometime the Cancer Specialist may even ask us “what do you want to do?”
The newly diagnosed man with prostate cancer therefore must absorb a lot of information from leaflets, websites and specialists in a very short period of time. There comes a point in this process of self-education when there is a burning need to talk to someone who has been through it all before and can pass on the benefit of their experience.
Our support group has existed since 1998 and was established as an independent self-funding registered charity in 2010. The aim of our group is to provide support for men with prostate cancer as well as their partners, families and carers.
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This support can be given at group meetings which are organised at Maggie’s Centre in Edinburgh and the West Lothian Ability Centre in Livingston. Guest speakers are invited to talk about varied aspects of cancer care (including treatment, research and diet) while the meetings are also an opportunity for members to share their knowledge and ideas.
We have well established links with the Cancer Care Centre at the Western General Hospital in Edinburgh and Specialist Nurses are in attendance at the meetings. There are also close ties with Maggie’s, Prostate Scotland and Macmillan Cancer Care.
We also offer a Buddy support service enabling trained group members to share their experience of cancer individually with new members or with those who are considering a new type of treatment.
Our website is a good source of information about the group and is constantly updated with a News and Twitter feed.
At a regional level, we are represented on the South East Scotland Cancer Area Network (SCAN) and can talk directly with Cancer Specialists involved in planning improvements in cancer care. As a result of this involvement , newly diagnosed prostate cancer patients can receive a recorded CD of the consultation with their specialist and can replay this later, to clarify points of information that may otherwise have been misunderstood or forgotten.
At a national level, we are represented at The Cross Party Group on Cancer which meets at the Scottish Parliament in Holyrood. This forum gives our delegates a chance to meet with MSPs and representatives of other cancer charities and agencies. We therefore have influence over health policies and provision of services. We played an active part in ensuring that Abiraterone was accepted for use by the NHS Scotland in 2012 and aim to see that our cancer specialists have access to the best available treatment options.
These are exciting times for prostate cancer with several promising new drug treatments coming through clinical trials, developments in more efficient methods of taking prostate biopsies and the prospect of screening programs for early detection of disease. There is also a growing awareness that Active Surveillance is the best approach for management of very early cancers and that careful monitoring can be a safe alternative to early radical treatment.
So why not come along to one of our meetings and join us in supporting each other?
You will be warmly welcomed to our group and may want to take part in our activities and feel the satisfaction of making a difference.