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Addressing the information gap in advanced prostate cancer

One-in-five men with advanced prostate cancer (PCa) experiences pain for more than a year before they are diagnosed. Almost 50 per cent admitted ignoring symptoms of advancing disease.

The statistics form part of the preliminary results of the International Prostate Cancer Symptoms Survey, a collaborative project between seven international prostate cancer organisations and funded by Bayer Healthcare. The project surveyed the attitudes and experiences of more than 1,000 patients and caregivers in 10 countries.

Early results from the study, which were presented during the European Cancer Congress last month, suggest that a significant proportion of men with metastatic PCa experience signs of disease progression but do not always discuss these symptoms with their treating physician. More than a third said talking about their pain makes them feel weak and 57 per cent believed that daily pain and discomfort was something they had to live with as part of their diagnosis. More than 59 per cent said they did not know whether the pain was cancer-related.

Prof Joe O’Sullivan, Professor of Radiation Oncology at the Northern Ireland Cancer Centre, said patients need to be educated on the likely symptoms of advancing disease, the implications of those symptoms and what can be done to treat them.

“We are on a learning curve with advanced PCa. In the last 10 years we have come from a place where we had very few life-extending treatments to having six or seven new treatments in just a decade. Patients now will live with advanced prostate cancer for many years so they need to understand the signal that comes from a new symptom or a change in an existing symptom,” he said.

‘Metastatic PCa is a complex disease and these patients will come into contact with many professionals in the course of their treatment. Symptoms don’t just appear when they see the oncologist’

“From the patient’s point of view, they need to understand what it means to have this disease, what they can expect from it, like fatigue, pain, and changes in lifestyle, and to be aware of some of the serious complications that may arise and that can benefit from treatment, such as bone pain and spinal cord compressions.”

Men surveyed in the international prostate cancer symptoms study said they would be more likely to raise the issue of worsening symptoms if they were aware of the implications the information would have on outcomes. Two-thirds said they would bring pain to the attention of their physician if they were aware that it would help to improve their quality of life, 59 per cent would raise the issue if it helped them to live longer and 54 per cent if it kept their cancer from getting worse. More than half would discuss painful symptoms with their health care professionals if doing so would help improve their activity level or decrease cancer-related pain.

“Patients need to be aware that there are treatment options available to manage many of the symptoms and complications that arise. It is important that we, as physicians, explain what these treatments can offer because it’s all very well being aware of the potential symptoms but it’s important to understand what they mean, which is that their disease is changing and that their current treatment may not be adequate.”

The vast majority of participants said they would be comfortable discussing symptoms with their physician but only 40 per cent said that pain is discussed at all of their consultations. Almost 60 per cent of men in the EU region said they are afraid to acknowledge worsening pain because it may mean their cancer is progressing. For US participants, the fear or worsening disease was a factor for just 33 per cent. More than half admitted that they rely on caregivers to ask the important questions regarding their prostate cancer.

“The disconnect between what patients are comfortable talking about and what they actually do talk about is an important issue for those of us who are delivering the care,” Prof O’Sullivan said.

“The results point out that there is something missing in these dialogues between doctors and patients. Doctors need to give patients the comfort and opportunity to ask the questions. It highlights to me the importance of empowering patients to ask the questions and also to make clinicians aware that if the patient isn’t bringing it up, the physician needs to.”


The care of patients with advanced PCa is no longer the sole domain of the oncologist. A range of disciplines are now involved in the monitoring and management of these patients.

Mr Lawrence Drudge-Coates, Clinical Nurse Specialist at King’s College Hospital NHS Foundation Trust, said multidisciplinary integration is critical to improving outcomes in patients with advanced PCa.

“Metastatic PCa is a complex disease and these patients will come into contact with many professionals in the course of their treatment. Symptoms don’t just appear when they see the oncologist. They can occur at any time and there are a number of opportunities for patients to discuss symptoms with a health care provider. We need to think about how best we can utilise these opportunities for communication,” he said.

The majority of men with advanced disease see a health care professional at least every three months. The oncologist was the most frequent treating professional but one in five cited a nurse as their primary point of call.

“A lot of individuals play key roles in the care of these patients. Symptoms can arise at any time but they may not be something that the patient discusses with the oncologist. There is a necessity for a much more multidisciplinary approach to symptom management,” Mr Drudge-Coates said.

“The most important part of my practice is actually having conversations with my patients about symptoms — making sure they are aware of the signs of worsening disease and letting them know that if they report symptoms they can be treated, it can improve their quality of life and extend their life. They need to know that they don’t just have to accept pain as par for the course. It’s only through that dialogue that we can improve patient care,” he said.

The survey results highlight the lack of patient awareness regarding symptoms in advance PCa. Not only are patients lacking information on what symptoms may arise, but when symptoms do occur, they do not always bring these to the attention of their treating clinician. Fear about the implications of symptom worsening and a lack of knowledge about treatment options play significant roles in this lack of communication.

There is a considerable need to improve patient education on metastatic PCa. While there has been an increase in awareness and education around the early diagnosis of PCa and the importance of screening, there is a dearth of information available on advanced disease.

In an effort to address this information gap, the International Prostate Cancer Coalition, in co-operation with Bayer Healthcare, has launched a patient awareness campaign called Men Who Speak Up.

As part of the project, a global online resource has been established which offers patients information on advanced PCa, the signs and symptoms to be alert to, and the importance of informing a health care professional of changing symptoms. Additionally, a valuable checklist of questions for patients to raise during a consultation, and advice on monitoring symptoms before and after a clinic visit. The resources are available at

There have been tremendous advances in the treatment of metastatic prostate cancer. There are now a range of therapies available that not only control symptoms, but which also extend life.

The use of such treatments, however, is guided by symptom evolution. Without discussions on symptoms, the potential of these therapies is not being realised. Improving communication and education has the potential to significantly improve outcomes.

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