Hello all!
Been following this forum for the last 4 years on and off - purely for hope and to learn of the different treatments available. Finally got the courage to sign up and share a post on behalf of my Dad and his journey so far who is not quite as computer literate...
My Dad was diagnosed with Stage IV Advanced Metastatic Prostate Cancer with PSA of 634 on 5th March 2020 (aged 60). Started with a lump at the base of his throat near his collar bone that he went to the GP for. Was referred for a neck and abdomen ultrasound. On day of ultrasound the sonographer found lumps on both sides of my Dad's collar bone and decided to do a fine needle biopsy. The only symptom that we have now since learnt after his diagnosis that would have been a giveaway. Was simply the amount of times my Dad had been to the GP with lower back pain with night sweats on and off over the course of about 10 years. Always put down to back pain from him working at a Metal Founders so was always sent away with reassurances of a blood test (not sure what they were checking as no PSA test ever done!), told to have paracetamol and/ or ibuprofen. Anyway I digress.....
Results of his biopsy came back positive for cancer which I think was originally thought to be haemtology related, as they had given us a haemtology specialist. After some further testing was found to be metastatic prostate carcinoma found in the neck nodes. Started him on HT straight away with Bicalutamide for 28 days and Prostrap being the base treatment given every 3 months indefinitely.
Was originally referred to surgeon however given the scans and results of normal size prostate gland with only loss of clarity in peri-prostatic fat planes. And the fact original cancer tumours would have been found in the seminal vesicles - surgeon did not want to operate (as cancer already metasized). Referred back to the Oncologist team who in April 2020 went through options of upfront chemo with HT as this was then the standard first line (should he want it) after all his CT, bone scans and finally a PSA blood test result. Luckily no evidence of cancer in bones. Now learnt since 2021 they offer the second line defence treatment of Enzul. and in some areas Abi with steroids as part of first line defence.
Given the PSA number was so high and that the cancer was so spread when found. With Oncologist kept telling us how unusual and aggressive the cancer was. Dad opted for upfront chemo of 6 cycles of Docetaxel. Dad tolerated the first 4 rounds well however by round 5 and especially 6 you could tell it was taking it out of him. PSA came down signifiantly to 0.04. Stayed under control for about 9 months, had hoped it would have been longer but then started to creep up slowly and in Aug 21 was 2.44 then in Sep 21 6.59.
Registrar after Sep 21 CT scan and seeing the rise started Dad on Enzalumatide. Abi was a choice but Registrar said given Dads shortness of breath since chemo they thought easier to start on Enzal. and if any issues can move to Abi (can't the other way around). Enzalumatide did the trick decreased Dad's PSA back to the magic number of 0.04. Stayed here for a bit (again ~9 months) before starting to rise again, 2.93 on Dec 23 and 5.98 most recently in Jan 24.
Oncologist has changed in Dec 2023 and they want to move Dad to chemo again this time looking at up to 10 rounds of Docetaxel. Have also given the option of Dad to wait if he would like to as the nodes are starting to enlarge but slowly. However, Oncologist also said why wait if we can shrink now (which I do get the logic for). Anyway have come away from last appointment for another follow up in 8 weeks and to stay on Enzalumatide for now. Reason being that it seems chemo again is the 3rd line defence treatment and from my understanding there isn't a 4th line at the moment. I could be wrong and would like to be very much corrected on this - would anyone on this forum know?
My big questions:
(1) Since the change of Oncologist it seems they send Dad for a CT scan of only his pelvis and not up to his neck. Should I advocate more for Dad that they need to do the correct CT scan?
(2) Has anyone on this forum gone onto have the second set of chemo rounds? How were they and did they help to keep the cancer at bay for a longer time?
(3) Do we have any other options left after the second set of chemo rounds? My heart is really wanting to have a second opinion as Dad is really upset at thought of chemo again and knowing once again through another defence line treatment wise.
(4) Would it be wise to research on clinical trials given that my Dad's cancer is so aggressive?
(5) Should I push for genetic testing as it seems they could then give Dad Olaparib? There wasn't enough of his original biopsy for the test to be conducted therefore the testing came back inconclusive. Or should I just take my Dad privately for genetic testing?
Appreciate this post is so long (thank you if you have made it this far) and my questions are probably emotively charged as everyone knows here - no length of time is ever long enough. Although having reading others stories I do feel that maybe they could have given my Dad or I should have asked about things like Radiation etc.
Looking for some little rays of hope!
Ran xx