I was diagnosed with pc in January and currently on the hormone blocker injections (2nd due 13th May) with a view to radiotherapy starting in June. I was just wondering how people coped with it and what to expect from the radiotherapy
You are the same as I was more or less. Gleason 9, PSA 38, T3b.
I started Prostap 3 in October 2015 then RT started in December 2015 through until Feb 2016 (I had the 37 zaps as opposed to the 20 that some get). I was told I would be on Prostap for 3 years but after 2 years I came off. The side effects were giving me a hard time. Hot flushes are one thing but clinical depression is another. This can build up during the HT so be aware of it. One thing I think is important is to keep active and exercise as much as you can even if it is just a 20 minute walk, washing the car or cutting the grass. Sitting at home dwelling on your situation will only drag you down and made worse by the hormone change.
I totally ignored the dietary advice (mainly because there is no evidence any of it has anything to do with PCa) as I wanted quality of life so bacon butties still appear on my breakfast menu! Anyway, after 2 years of HT I stopped but the effects of the Prostap remained for just under 6 months. Then everything returned to 'normal'. Erectile dysfunction cured itself as did libido but one thing they rarely warn you about is that RT may cause some loss of penile length. You can try and combat this with a suction pump or other mechanical aid but do be prepared for some loss. Its caused by nerve damage from the RT.
So, been off RT now for 18 months and PSA results are stable at 0.8 (anything below 2.0 is good). Just been moved on to 6 monthly PSA testing and if okay for the next 18 months will move to just 1 annual test. If the results remain the same (for 5 years after treatment finishes) then I will be officially classed as 'cured'. So you can be positive about your outcome from RT and HT. There are many who advocate a prostatectomy as the only 'cure' but as you can see this is not the case. Both treatments have roughly the same outcomes in terms of success.
Hopefully, my experience will give you confidence to get through your treatment with a positive mindset.
Hallo All, I was first diagnosed lin march last year [2018]
At that point they found my prostate was beyond hope, & infact local lymph knodes were affected - I was classified as Stage 4 & told I probably had "A good 5 years yet."
Having gone through last year "being brave" I'm begining to realise I am far more in need of people who know what I'm on about to be there when I have the inevitable 'Blip" occasionally.
My main problem is my lack of energy & restricted mobility.
I have been an obcessive photographer all my life & need to get around but not being a driver has created a double wammy for me. Before I would simply get on a bus to do my ramblings, but now... I'm limited by my 5 hour window of enegy.
Hallo Westy, my name's Phillip & we seem to be on the same 3-monthly injections.
Now I have been a coffee drinker for many years so when the specialist nurse advised to ease-off caffeine I thought I'd better & was pleasantly surprised companies do very good decaf teas & coffees.
The affect of the injection - ie. Night sweats & hot flushes are a bugger as we know, but I was put on to a service at Hexham Hospital; a theropist doing acupuncture. She does a session each week for 6 weeks. I found it worked miraculously the first course, & I was free completly for about a month before is slowly came back. I've just had another 6 weeks now. I'll admit, for me it has not been totally affective this time, but I am off the night sweats still.
They are a charity, so a donation is only right, but the do do it free without questions. I recomend it.
When I was diagnosed in March '18 I had a PSA reading of over 1,500, but by the time of my 4th injection PSA was reading 5.
Considering my time limitation now, I'm doing incredibly well.
I've just had my second injection and so far the only side effect I'm having is a headache which I can't get rid of and only one hot flush. Fingers crossed that's all I will have. The real shocker though is limit caffeine??? Not only is there a list of food I like but can't have now you're telling me no caffeine. Is it worth it????? lol
I've got my preliminary apt on 7th June so my treatment plan will be sorted then.
I thought my psa was high at 24 my god I was wrong. As your reading was so high did they defer your treatment until it was down to an acceptable level or did they go ahead straight away.
