Having followed various posts on this forum (which have both comforted me and scared me in equal measure)and gleaned so much information from it and the site as a whole, I have now decided the time has come to post our situation. I am one of those people that needs to 'understand' and that is what led me to this site.'Understanding' is a double edged sword, it is something that I personally need to do but at the same time I think maybe it might be easier if I didn't. Maybe ignorance is bliss.
Okay (Deep breath!) here goes!.
Dad was diagnosised with prostate cancer in December 2015..... a truly horrible Christmas present to remember and one that just keeps on giving but not in a good way.
Following various tests, biopsy, bone scan and MRI it was established that it was advanced and present in both the bones and lymph.....at first we were all in shock but then we all developed the, 'Right, roll up your sleeves and fight this thing attitude'.......if only it were that simple.
Official diagnosis was T3bbN1 and a Gleason score of 8(4+4) Scarey stuff, once I'd worked out what that actually meant.
Anyway, to start with Dad appeared well and this dreadful disease seemed to be having a minimum amount of impact on his life a few additional aches and pains, maybe, but nothing major. He and mum carried on with their lives as before.
He started the HT, he did suffer (and still does) some of the side effects of sweats etc. but he is not one to make a fuss and just got on with life as usual. His PSA level, which was initially 29 was coming down and things seemed pretty much under control. We'd managed to put a roadblock in the way (so to speak) of this PC and it seemed to be holding. Obviously, we were all worried about him but if he could carry on 'as normal' so would we........ I'd still lie awake in the wee hours fretting about him, but I wasn't about to tell him or mum that.
After a while those aches and pains were having a bit more of an impact and his PSA would bobble about from time to time so, in addition to the HT, he had a round of chemo and some radiotherapy (I can't remember in which order) . The PC had obviously found another route but we'd found a different roadblock so that was now put in place.
Things settled down again for a while, PSA levels dropped, aches and pains improved. All was good, or so we thought....... obviously the PC had other ideas.
PSA levels were increasing again and general health was not so great, but Dad never complained, you'd just catch him rubbing his back or he'd wince, when he thought you weren't looking etc. Like I said, he really doesn't like to make a fuss, he can't be doing with drama. He had some hip pain, so doctors gave him a quick zap of RT to control that, but they confirmed things weren't going as well as they had hoped. He was given a blood transfusion and his energy levels seemed to lift but the effect was short lived. it seemed the PC had once again thwarted our attempts at a roadblock, we needed a new one.
We were all so concerned and just didn't know what to do, you put your trust in the doctors but after a while you find yourself questioning if they do actually know what they are doing..... or perhaps they are just stumbling from one situation to the next, like the rest of us.
So this time he was put on what we called the wonder drug, Abiraterone.
Wow!! for a few months it was amazing, we had dad back!! I suppose because of the gradual decline we hadn't really registered how low he had gotten. It was as if the clouds had lifted and, ok he wasn't leaping about the room but he was 'normal' pottering about the garden, enjoying a pint, worrying about us ......just being dad and it was wonderful. Another roadblock in place and (Please, please, please) let this one hold. Maybe those doctors do know their stuff after all!!!
Fast forward 4 months and the PSA levels had started rising again, a few niggling aches and pains (I'm sure you can see where it's heading) those aches and pains soon turned into 'stop you in your tracks' real, proper pain.
Sciatica type pain started and over the past couple of months has been increasing in its severity, impacting Dads mobility. A new bone scan was ordered and an urgent MRI to rule out spinal compression (Thankfully this was ruled out)
Bone scan and MRI revealed the disease had further progressed:
Extensive mets: c1 to sacrum
Multiple associated endplate fractures mid and lower thoracic spine
No soft tissue/spinal cord encroachment.
Necrotic Lymph nodes present within the retroperitineum
......and to top it all the latest blood test revealed a further increase in PSA, now up to 58, so it has doubled up from its starting point. It was concluded that Abiraterone was no longer working and so it was with drawn.
I hate this disease, you can't even call it a stupid disease, it is too clever by half, it always seems to find a way round, what ever we throw at it.
Next on the agenda to try, in a week or so, is a Zoledronate infusion (to strengthen the bones) and a different type of Chemo, Cabazitaxel.
Dad has gone down hill rapidly, I'm so worried about him, I'm not sure if these plans will actually happen now. He had seemed so to be managing it all so well, I think we all thought he would carry on like that forever.
We are all struggling in our own ways. Mum tries to be strong but occasionally, she buckles and I just want to hug her, but she is not that sort of person and I know (from experience) that if I try to hug her I will make it worse. My brothers know what I'm like with researching and trying to understand, so they ask me to explain things.....as if I am some sort of expert or something, which I most definitely am not, but I am big sister so I do understand that they expect me to have answers........And me? I allow myself the occasional ( but getting more frequent) wallow, but never in front of dad. In front of Dad I am strong, I still tease him and give him a hard time, like I always have..... he probably doesn't buy any of that nonsense but that's how I deal with it around him at the moment, I don't want him worrying about me on top of everything else.
He now has no feeling in one foot, which severely restricts his mobility. Despite a whole cocktail of various painkillers (Paracetamol, Tramadol, Diazepam, Naproxen and Amitriptyline) as well as his other medication. he is in constant pain, especially if he tries to move.
If you were to rewind to 10 years ago he wouldn't even take a paracetamol for a headache, he claimed he didn't know what a headache was! and now he is a walking (or not walking to be more precise) pharmacy.
I don't like it, it is suddenly all going too fast, we all know what the eventual outcome will be, nobody wants to face it but we know it is there (that big fat elephant in the room) it can't be avoided..........but I want things to slow down.
I'm not sure what is going to happen next but whatever it is I suppose we will have to deal with it.