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What Men with Advanced Prostate Cancer Need


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Advanced prostate cancer (PC) is traditionally terminal. Medical advances are beginning to change that and slow the progression of the disease. Some men are diagnosed with very advanced cancer in their 80’s – palliative care is often used in this situation. Other men diagnosed in their 40’s, 50’s and 60’s with often less advanced disease are faced with long and complex treatment options to try to slow and control the progress of the cancer.

What are the needs of these men

# A way to manage the decision uncertainties

# Where possible a way to move past the threat of death and live a meaningful and fulfilling life with the time available – live with grace rather than die with the cancer.

# A roadmap for their cancer journey that describes the terrain they are traversing.

# An understanding of the cancer stories and experiences of other men with advanced PC – and the fact that many men live for extended periods with the disease.

# Appropriate medical care and advice for each stage of the advanced journey

  •  Urologists in the early stages
  • Radiation oncologists for radiation treatment
  •  Medical oncologists for long term whole of body hormone and chemotherapy treatments  Endocrinologists to manage bone density and body chemistry
  • Dieticians, exercise physiologists, psycho oncologists
  • GP’s to manage comorbidities – heart disease, stroke, diabetes etc
  • Palliative care professionals as appropriate towards end of life

# Close vetting of side effects at all times and amelioration techniques where possible. Proper balancing of benefits from treatments and harms from side effects.

# The ability to take advantage of new treatments as they become available. Access opportunities to clinical trials should be proactively managed.

# The involvement of relevant medical professionals in multi disciplinary teams is most desirable. The interactions within these teams widens the horizons for medical options for each patient.

# The advanced PC journey for many men is long (10-20 years), complex (multiple treatments and multiple doctors), uncertain (treatment sequencing ignorance etc) and constantly changing as new treatments emerge. Case management from the patient perspective is a big issue. GP’s might do this but they are time poor and inadequately trained on advanced PC details. Some of us are lucky and have a strong long term relationship with a single specialist but it also appears that many patients are all over the place in terms of case management. There is a great need for trained case management services to allow many advanced men to utilise our medical system in the best way.

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Tony, I like  your article and think you should try and have it published in some medical journal etc. "Advanced PCa Needs for the Laymans Journey"


Couple of points though for consideration are:


Palliative Care should begin when a person is diagnosed with a terminal/ critical illness. In my particular case I suffered sever bone pain before I went to the Palliative Care Outreach Unit at the local hospital. What a difference to my quality of life.


Case Management dose not exist for most PCa patients. I reckon if you did a survey in the APC Forum membership would confirm my statement. See below the following aricle from the WE Australian

 Argument for Case Management:

  • “Hospital care is so complex its time for a new medical specialist: the generalist with an overview of patients needs”. Ack. A. Cresswell WEA 21-22May.

Physco Oncology: With respect to my journey and experience I have to say that little was practiced in Launceston and Toowoomba Private (Unless you sign the cheque first) I transferred to the Public system. the Difference is chalk and cheese with the added bonus that it is free!

Pain and distress charts would be a great way to help improve the treatment, service and understanding what the person is going through. These forms could be completed whilst one is waiting to see the Doctor.


The last point which can impact greatly on the patient and family is a side effect which is seldom talked about by the medicos as in my case "Is Loss of Income"




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Thanks for your comments on the advanced piece.

I will try to get it published or circulated in some way shortly.


Re palliative care I agree I have overlooked pain relief benefit you mention and will amend the piece to include that.


However I do not agree with the often mentioned recommendation that all people diagnosed with a terminal disease should immediately seek palliative care help.

Two reasons for this

1.Cost and Services availability – we know palliative care is stretched to the limit – imagine 25000 advanced PC guys suddenly demanding it.

2.Psychological damage to patients who see palliative care as the end game – I certainly do not want to be involved with palliative care until I need it.

I do agree however that palliative care be available at an appropriate time for pain relief and towards end of life.


I suspect you are right on case management for advanced guys – it is probably worse than I indicated in the doco – I was trying to be diplomatic.


Received yesterday an offer from Prof Colleen Nelson in Brisbane for a consumer rep position covering advanced PC on a research coordination committee for the three prostate cancer research centres in Brisbane, Sydney and Melbourne.

I had not applied for this and knew nothing about it prior to the offer but after checking it out I have promptly accepted it today.

I attached a copy of the advanced needs doco to my acceptance letter and indicated I wished to pursue that matter.

Maybe this could be one opportunity for wider circulation of the document and driving satisfaction of the needs outlined in it.


Regards           Tony
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