Hi It has been a long time since I've posted on here but I am forever lurking on the Prostate Cancer Community site. This seems to be one of the very few sites that give knoweledgeable and trustworthy advice and support and I would be grateful for your opinions about our current situation.
My husband was diagnosed with Prostate Cancer in June 201 aged 59. PSA in May 2016 was 205. Biopsy results Gleason 9 - bone scan showed mets in hips, ribs and pelvis. Started Prostap beginning of July after initial Biculutamide. CT scan performed in July 2016 but never had official results from that. Our Oncologist said he would get the Radiologist onto this asap in our August 2016, but nothing else was ever confirmed. We were told by the Oncologist that he looked too well for the cancer to be in any organs or soft tissues and from what he could see of the scan online all areas were clear, except the lymph nodes looked swollen. On subsequent appointments when I questioned the CT results ' Is it in the lymph nodes'? we were told ' Well with the original high PSA and the Gleason score I would say yes'. This answer was only provided when I pressed the question and nothing was confirmed. He started 6 sessions of Docetaxel in September 2016 until the beginning of 2017 and PSA results stayed really low until Dec 17 when it had reason to 0.5.
Fast forward to Feb 2018 and and PSA had gone up to 2.7 - we were told he had probably become castrate resistant and the plan going forward was to do a nuclear bone scan and a CT scan to see if/what was going on, then potentially radiotherapy to 'zap any hot spots' and Abiraterone was mentioned, but 'lets get the scan results first to see' CT scan was done in March and then we waited for a bone scan but nothing came through for an appt for this despite contacting the oncologist s secretary who just said she would chase it up. We were eventually told after several weeks the the radiologist had denied the bone scan as there was 'no justification for this' At our next oncologist appt soon after ( we saw a different dr) we were shown the CT scan which showed that the lymph nodes were much smaller - infact almost invisible - and the bone lesions showed 'significant improvement and they were healing themselves' We were told that a bone scan at this point would only confuse issues as it would show activity that was actually healing. Plan to carry on with more frequent apps and blood tests with a view to Abiraterone fairly soon (still on Prostap)
Next appt in April PSA had risen to 7 and ALP also higher. Oncologist advised again Abiraterone and also ? PSMA/PMSA test (can't remember which way round) I thought to myself then that it would be a miracle if that actually happened - I was not at this appt but hubby said he sent the e-mail to the radiologist there and then - the same radiologist who refused the bone scan a month or 2 earlier. We waited - I tried to be patient but it was weeks before we were told that the Radiologist had denied the request - was not surprised in the least! When we spoke to the Oncologist very shortly after this we were told It wouldn't make any difference to the outcome - and the PSA since the 7 reading had again risen sharply - Abiraterone asap
Yesterday 14th June, we had an appt with the nurse specialist to start Abiraterone and because I couldn't be at the appt the previous week I asked her ( grilled her really) why we couldn't have a more detailed imaging scan to find out what was going on. The CT scan had showed vast improvement, but the PSA is rising sharply, and how can a Radiologist who only has access to scans, override the Oncologist who has access to PSA ALP and everything else, and see's hubby on a regular basis. She said she didn't know why - only that the communication was done electronically. I did lose it a bit - I wanted to know why we couldn't have a more accurate scan to define where any possible spread was. Why couldn't our Onco give any reason other than ' It won't make any difference to the outcome' Surely It's important to try and pinpoint where any spread may be coming from. He did say probable flare up in the bone somewhere - but we need to try and define where in the bone?
I have tried to deal with the whole thing holistically. I am aware of how he is in himself constantly. He's eating as normal. He's weeing literally ' like a horse' . Yes, some aches and pains but nothing specific or severe and in various areas. I put that down to Prostrap and muscle loss and maybe some chemo effects still continuing. He is also taking a high organic dose of quality CBD oil. I really, really have no idea if this is helping the cancer, or ? skewing PSA tests, but it certainly helps us to think we are doing something. However, today he has taken the first Abiraterone tablet, and Prednisolone - I hated him taking Prednisolone when on chemo. Ultimately of course I want the best for him and Abiraterone is probably the best way to go, but I want him to have further scans to see what is going on and to try and pin down what is causing the rise in PSA. Should we try and get an mp MRI privately? or even a PSMA test privately?
I apologise for the length of this e-mail. I know my going on and on must be really boring, but I am currently banging my head against a brick wall whenever I speak to the Oncologist and It's driving me mad. You all seem so knowledgeable and I would love you lovely people to here to maybe see the situation from a different perspective
Again huge apologies for the book I have tried to write!