I am posting this here tonight because I feel that it is so important that all of you brave men ask for scans to be carried out regularly. In Paul's case, I think we could have discovered the liver mets sooner if a scan had been performed earlier. Now I am not saying that the doctors made a mistake, and I am not saying that an earlier diagnosis would have changed anything, but what I am saying is that a detection of the liver mets at an earlier stage may have been helpful in some way.
What follows is the whole treatment:
Histopathology: High grade localised prostatic adenocarcinoma
Gleason Score: 7 (3 + 4)
Initial PSA level: 42.8
Start of Casodex 03.12.2003 completed July 2004
Start of Iressa 03.12.2003 completed 18.07.2004
Start of Soladex q1/12 08.12.2003 last injection 21.06.2004
Start of radiotherapy 22.03.2004 completed 24.05.2004
December 2005. Biochemical failure with bone metastasis
First line hormone therapy by LHRH Agonist alone
December 2008. Biochemical failure
Second line hormone therapy (combined androgen blockage)
July 2013. Biochemical failure with retroperibineal LH
Third line hormone therapy (continuous combined androgen blockage)
March 2014. Biochemical failure with bone and para-aortic LHs
Started on Aberaterone and Decapryl
Started Zoledronic Acid July 2014At the time of the start of Aberaterone PSA wass at 150. It fell within weeks to 0.2.
July 2016 PSA had risen from 0.2 to 3.1; continued Aberaterone.
Beginning of 2017 feeling increasingly weak, experiencing nausea and vomiting.
March 2017 PSA at 11. First discussion of Chemotherapy treatment, decided to wait.
In April PSA back at 7. Doctor said, "Because the PSA doesn't rise and Paul is not in pain, we don't need to repeat the scan so soon."
This is where I think we should have insisted.
Nausea, vomiting, fatigue continued.
PSA in May went up to 27 and 98.
When the scan was done in June, there were numerous liver mets visible, half of the liver tissue had been replaced by the cancerous cells.
And then our journey with Chemo began.
Paul was put on Taxatir first. First infusion was the end of July.
He felt bad all the time on it, symptoms were still the same as before.
So he was changed to Carboplatin.
The PSA had risen to 129. But that doesn't matter anymore when the cancer has changed.
First Carboplatin infusion at the end of September.
He had six infusions. A scan done at the end of the sixth infusion showed a modest reduction in tumors.
He was prescribed four more infusions of Carboplatin.
He had done two when he got sick.
Diagnosis: Influenza A and pneumonia.
He was treated for one week with anti-viral medication and antibiotics. Then he came home, was two days at home, and had to go into hospital again where he was diagnosed with the very same and put on much stronger antibiotics this time.
Liver markers were stable all that time.
CRP fell from initially 200 to 100 to 80 60 to 40.
Weakness, shortness of breath, and a general lack of interest in life continued at home. He just didn't have any energy left for anything.
And two and a half weeks after he had come home he began to have liver pain and I could feel the liver was very swollen. Paul's legs were swollen. The doctor told us it's because of a lack in Albumin which sometimes occurs in patients who have spent quite some time in hospital. After reading a lot, though, I think that the low Albumin levels were a sign that the liver was no longer working because Albumin is produced in the liver.
When we arrived in hospital on 14 May, Paul was diagnosed with both Klebsiella infection and beginning Sepsis.
From my point of view, the gap between scans from August 2016 to June 2017 was far too long. Scans in patients with such a diagnosis should be scanned every six months at least as time is of the essence here. This is why I decided to write all this done for you so that you might feel encouraged to ask for and insist on more frequent scans.
To say that just because a patient's PSA level is low and he is not symptomatic there is no reason for a CT and bone scan is simply wrong. I have said this to the oncologist in the hospital as well. I told him I wasn't really blaming him, but I would appreciate if, in future, he would not deny the scans for people when they are at such high risk.