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Sandy Hill’s journey since diagnosis in Dec 2010.

Guest Sandychill

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Guest Sandychill

After diagnosis a second opinion with an eminent urologist, confronted me with my situation that I had a 5% chance of surviving beyond 5 years. What took quite some time was understanding what I had to do, and grasping the fact that this disease required management which was not happening. I propose that a guide on disease management be developed.

My PSA that was always low at around 1.2 which was the primary reason for my late diagnosis. At diagnosis, my PSA was 2.6, Gleason score 9 with asymmetrical bone metastases particularly at T12 in my spine and in my right shoulder.

The first medical oncologist did not inspire much confidence in me. After three consultations and having become far better informed by then, in April I changed to a different oncologist. The choice of a new oncologist came about through a consultation with an imminent oncologist in Brisbane who referred me to my current medical oncologist I have had in Adelaide since April, and am very happy with.

Standard hormone therapy over 10 months has been very successfull. PSA down to 0.1 and much of my bone metastases cleared. Treatment of T12 and my right shoulder were initiated by myself, not my GP nor my first oncologist. Radiation therapy in June very successfully cleared T12 metastases. My shoulder turned out to be a torn rotator cuff not cancer.

As of early September my disease appears to be progressing with PSA increased from 0.1 to 0.12, swelling of left abdominal lymph node and severe pain in left abdomen. Intrusion into spinal canal at L2 received radiation therapy providing immediate relief from pain. Because my low PSA is an unreliable indicator, my lymph nodes will now be used as markers monitored by MRI scans. Monitoring will be supplemented by CT scans and bone scans as required.

Earlier this year while still in Brisbane, through the Brisbane Support Group I became aware of the Multi Disciplinery Unit at the Princess Alexandrina Hospital and also the UQ Interprofessional Clinic. Through my GP I obtained referrals for both.

At no cost, the Multi Disciplinery Unit at the PA reviewed my case and provided a report with treatment recommendations similar to the treatment strategy provided in Brisbane. This provided me with assurance that I was receiving the right advice from my specialists. In addition I had several consultations with the unit manager receiving advice on complimentary therapies.

(Note that complimentary therapies are therapies that support the primary therapy and do not interfere; examples are exercise, diet, meditation, hypnosis, psychological counselling. Alternative therapies are quite different, are a personal choice and, in my opinion, should not be embarked on lightly.)

At the UQ interprofessional clinic an exercise physiologist designed an exercise program for my particular condition. In developing the program she reviewed my medical records and provided extensive supervision of my technique in performing the exercises. I also had consultations with a dietician. These services are subsidised by Medicare.

I took advantage of psychological counselling provided at no charge by the Cancer Council Queensland. Particularly when I was first trying to come to terms with the reality of my condition, having to retain psychological strength and dealing with anticipatory grief, the sessions helped me to establish acceptance and a positive mind set.
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