This is my first post here, though I joined the community in February, when my husband's PSA was found to be 79.1 - and have been following some of the posts.
After CT, MRI & bone scans & biopsy, hubby was found to have:
Metastatic ardenocarcinoma of prostate with bone and lymph nodes.
Diffuse prostate gland PI-RADS 5 changes. Provisional staging: T4N1M1b.
Prostatic adenocarcinoma, Gleason 9 (4+5) in 18 of 18 cores.
Maximum extent 16mm (100% of the core). PNI present.
Sclerotic lesions on spine at T12, T10, T8, L5, with T10 being the most affected.
Also on left hip (posterior column of acetabulum).
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There's a lot more I've written on the bio - so don't want to overload here!
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Basically, hubby started ADH treatment in February with Bicalutamide, then 3 monthly Prostap injections.
Apalutamide was prescribed late April as another attack on the cancer, in addition to the Prostap.
He took one tablet early May and same day had acute reaction with pressure in head, tinnitus, dizziness etc, and his blood pressure shot up. His right eye looked droopy and his vision was blurred. It was May Bank Holiday weekend so couldn't call consultant's team. He called 111 & they called the Paramedics. Was told all else was OK & blood pressure of 65/90 was not a concern on its own.
At the end of the May bank holiday, he was told by the consultant to stop the Apalutamide.
I realise tinnitus itself is not a huge issue (I've had it quite a while myself). But he'd never had tinnitus before and it's stayed with him - on both sides.
A couple of weeks ago he said there was suddenly a lot of pressure in his head again - and pressure in his ear. All on the right side. Also a slight headache. This has continued. This is all worse and pronounced in the mornings. He says it feels like he's been banging his head. And says there are tender places on his scalp. Also mentioned a feeling of a lump in throat but the other day said that seems to have gone.
From starting the ADH in February, his PSA had dropped to 0.71 on 17th June.
July it rose to 0.96 then 13th August it was 1.1. i.e. a rise of 0.39 in 2 months - 55%.
The GP has noted these results as 'normal', 'no further action', though perhaps he was taking each one in isolation.
Hubby doesn't take much notice of the blood test results and isn't aware of this rise and I've not mentioned it to him as yet, as I don't want to alarm him needlessly.
Though I do wonder if the rise is connected with his worsening new symptoms.
Hubby is certainly alarmed about his new symptoms and has made an appointment to see his GP this Wednesday morning (28th August) and I'll be going with him - as he likes me at all his medical appointments.
I'm hoping the GP will feel alarmed at least enough to do some sort of tests.
I try to tread carefullly at his appointments not to be interfering and leave it all mostly between hubby and medical practitioners. But of course it all affects me too.
I'm a bit concerned that, because there's not really any other treatment other than the Prostap he's already on (as Apalutamide disagrees with him), the medical profession is not taking much notice.
He was told recently that his monthly in-person oncology consultant appointments are now reduced to three-monthly phone calls with a urology nurse - next one in October. And that his monthly blood tests need to be reduced to one just before each consultation.
Even if there's not much they can do about any further developments / deterioration / raise in PSA etc, other than keep him on Prostap and hope for the best, personally I'd still appreciate ongoing close monitoring and tests so we both have some idea of the trajectory, planning to make the most of life, etc.
Of course, I realise this all has costs for the NHS (at the last appointment the nurse patiently explained the cost of blood tests), valuable time for staff etc and I don't want to be being selfish. And I know nothing can tell us how much time there is left for hubby to still be able to enjoy getting out and about.
I'd like to know if there is anything that you would suggest I say, as wifey, to the GP on Wednesday? Or prompt hubby to ask? Particularly if the GP doesn't seem especially concerned about any of this.
Or am I over-worrying? Interfering?
Christine