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Uncertainty, QOL


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With the fresh memory of those disgusting lesions in my bones and lymph nodes as radiological images and the Path Apps on my phone showing my PSA of 4500, I diagnosed myself with Metastatic Prostatic Cancer.  Colleagues quickly recommended an experienced Oncologists. Biopsy of a Lymph Node was worse than the cancer at that moment. The ADT journey started with 2 shots of Firmagon 6 days after the Diagnosis, the pain and swelling of which immediately reminded me what it means by "Treatment is worse than the Disease". 10 days from Diagnosis, I received the first of five Local Radiotherapy to a segment of the Thoracic Spine for Pain due to Nerve Root Compressionn which was the only symptom of my cancer leading to the CAT scan and Diagnosis.  Pain settled by 75% in 3 days!! 4 weeks from Diagnosis, first shot of Lucrin, which was Nothing compared with Firmagon. PSA dropped to 850! 5 weeks from Diagnosis, I received the first of 6planned cycles of Docetaxel DTX. Now, Day 9 of Cycle 1 Docetaxel, I have not felt too bad, with migratory bone pain, taste change in the mouth, nail bed pain, fatigue. Anemia from the cancer and DTX is probably distressing me most. My Exercise Tolerance has dropped to what I regarded as disgraceful.  Further thought... maybe I have accepted the Diagnosis but have not reconciled with the implications of being sick, buying time, dying of cancer.

I read in this forum many real life experiences of Prostate Cancer.  Treatment Side Effects are tolerated variably.  What I found difficulty at this presumably early stage of my "salvage" treatment is the Uncertainty of Survival and the Uncertainty of the Morbidity from the Disease and Treatment.  I do not know what extent of physical limitations will be imposed on me.  I certainly do not know if I could accept a Life with the degree and extent of limitatations.

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My thoughts are with you are you take this journey. I am sure that both myself and others reading your story will all be hoping for the best outcome as is possible. Difficult when we get thrown these curve balls in life that we seem to have little control over. try and stay strong as every day new options for treatment are evolving. Wishing you all the best.




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15 hours ago, ALF said:

the Path Apps on my phone showing my PSA of 4500, I diagnosed myself with Metastatic Prostatic Cancer.

I have never known there was a mobile telephone app that could measure Psa, but I have never needed to use a mobile phone. I began to insist that I have Psa test included in my yearly check up for GP since age 52, approx. 

It would have been impossible for me or my GP to have not noticed a large rise of Psa. But at 62 in 2009 I had a Psa of 5, and a biopsy in 2009 showed a Gleason 9, and it was inoperable in 2010. So I was diagnosed much too late to have a successful RP. My Psa graph can be seen at   http://www.turneraudio.com.au/Patrick-other-concerns.html

I cannot imagine how I would have fared if my Psa was 4,500 at any time.

At the moment I have zero symptoms of Pca, Psa = 0.32, and that was only possible after 4 x Lu177 shots. Before Lu177, Psa was 25, countless mets, some in bones were peas sized. I now have Pcs producing 1.3% of Psa before Lu177, not a bad result, but it does not mean it won't rise again. I do get a dry mouth sometimes.

I did recently have an adhesion of small intestine to 2010 surgery scar tissue that gave me a real bad gastric blockage needing an op to cut the adhesions. But it looks like I'll fully recover, and can return to cycling 200km a week like I have been doing since 2007.  Sure I have Pca, but my QOL has been mostly very good during last 10 years.

I think you need a lot of luck plus the best doctors you can afford.

All the best for Xmas.

Patrick Turner. 


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Hi, Patrick, the Phone Apps is just a secured link to the Lab that did the PSA assay, not a testing device. It sounds like you are a keen cyclist and it is good for me to hear you have maintained your prowess on the bike amidst all these treatments.  I am an avid cyclist and distance swimmer, albeit 62.  I have not come to terms with the limitations, more precisely, reduction, of my exercise performance since the ADT and Chemotherapy.  I am fearful these side effects will continue and impairments persist. I don’t know if the cancer will respond this new treatment algorithm of ADT with early Docetaxel.  But, I cannot help to lament the loss of physical fitness over survival.

The guys I ride with have put my name in their team for LeTape 2020 at Kiama, 140km with 3000m climb.  I wonder if I can make it!  
merry Christmas, Alfred.


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