I have been trawling the internet for some guidance on PSA levels during HT, what constitutes good progress, and roughly when should it reach its lowest point?
I have just received my first PSA result after about 3 months of HT, it's gone down from 30.7 to 1.29, I don't know whether to celebrate or make sure my affairs are in order, (just joking moderators)....the nurse couldn't give me any numbers, she just said it's good that it's gone down but couldn't or wouldn't say when it should plateau and what level is a good result.
The only numbers I have gleaned from my investigations are for when treatment is complete after a few years, apparently it's a good sign if your PSA is 0.3 or lower and stays there, as there's a very good chance you're cured.
As a retired engineer I deal in precise numbers and graphs but it seems for PSA, it's more a case of ups and downs, and rate of change rather than targets.
Does anybody out there have any better information? I have gone cross-eyed reading technical papers on this but have found nothing with the precision I crave.
Hi T
I don't think u can take too much notice of PSA during HT although obviously the lower the better and it doesn't start increasing in a big way although fluctuating during HT is normal.
The time to watch it in earnest is when HT is finished and the effects have worn off, this will be sometime after RT is over.
At that point the lower the better but again as long as it doesn't start rising again in the long term u should be ok.
I see u are T3a so just escaped the gland but not anywhere else so hopefully RT will cure it
Good luck
Steve
Thanks Steve,
I've been told to look forward to 2 years of HT although good to see it's obviously working, at least all the sweats aren't for nothing, but it would be good to hear what others experiences are, we all give up a lot when we submit ourselves to HT, and at my age I may never recover my normal testosterone again :-(
Good luck
Another retired engineer here.
When first diagnosed as T3A N0 M0 and Gleason 9, my PSA was 11 and had risen to 15 by the time my HT started in October 2018. Nearly four months later it had dropped to 0.4 and following 20 sessions of RT in February and March 2019 it had dropped again to 0.1. Three months later again and it was undetectable at <0.1 (0.1 being the lowest measurable level in my NHS trust) and stayed there until I finished HT in 2021. I am now more than two years post HT and the last three six monthly tests have been stable at 0.2. My oncology nurse said that as I still have the remnants of a prostate that level is perfectly normal and they will keep monitoring at six-monthly intervals for another two years. After that it will be annual tests until I am 10 years post treatment and they will take no action unless it rises above 2.0.
I hope that helps
Hi Seamus,
Thanks for your reply. I was fascinated to read your PCa diary, it really gives a detailed record of your own journey, in fact it seems to be an object lesson in how you want the treatment to progress. Staying below 0.3 is an excellent indicator apparently, above 0.3 and recurrence is more likely although it could be several years, 0.3 and below and the odds are heavily in your favour.
Your Gleason was higher than mine, but your PSA was lower, otherwise similar to what I expect/hope for.
I was surprised your scans didn't show any metastases as I thought Gleason 9 meant it had spread to areas outside the prostate?
It looks like your PSA didn't reach its lowest until after RT, so mine at 1.29 looks OK as I haven't started RT yet, I was told it will be 38 sessions, 5x per week for 7+ weeks. I'm hoping this will be shortened after the recent review of RT in PCa where they have found 5 sessions is just as effective as 20, and no HT.
The HT is a killer, apart from the normal discomfort, it's the prospect of my testosterone level never returning to normal because of my age, I'm 75, but have never lost my male urges so to speak, and still have 2 years HT to go :-(
Once again, thanks for the reply, it was just what I was looking for.
Good luck
Derek
Hello Derek
As I understand it your PSA results should be in line with:
* Once you start HT it drops quickly as there is no testosterone for the cancer to feed on so it will drop quickly.
* The RT kills off the cancer cells (and some good ones) and as the immune system is fighting the RT you don't get a decent PSA reading for at least 3 months after RT.
* Once you have been "zapped" and your "Sunbed Treatment" is over you should reach your lowest or nadir PSA reading 18 months after finishing RT.
* If your readings then increase by 2 whole numbers above the nadir reading you will be called back for further investigation.
I am the same as Seamus47 being Gleason 9(5+4) T3a N0 M0 - we are both lucky with the N0 M0 which although a member of the "9" club means it's very aggressive BUT the cancer hasn't had chance to go "walkabout".
Like Seamus47 you can read my story by clicking on the icon of the beach.
Good luck with the "sunbed" later - try Sage tablets for the hot flushes.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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I'm hoping this will be shortened after the recent review of RT in PCa where they have found 5 sessions is just as effective as 20, and no HT.
I think you'll find that the. 5 treatment regime requires a specialised treatment machine and isn't available in many centres at the moment
Thanks Brian,
You guys are a great help filling in my knowledge gaps, these details are invaluable to someone who has to know everything......once an engineer, always an engineer.
I don't want to overburden you, but after my diagnosis, I did a lot of research and decided to make my body a hostile place for cancer cells. As such, I made dietary changes, lots of cruciferous veggies, very few carbs and lots of fibre. I also added some supplements, vit D, low dose aspirin, Ursolic acid, Turmeric, green tea, flaxseed, lycopene, soya milk in place of dairy etc, etc.
There wasn't much of me to start with (never had a weight problem) but the kilos started falling off me, I lost 7kg in 10 weeks, wife was getting worried and I decided perhaps I'd overdone it so re-admitted limited wholewheat bread and rice to my diet, otherwise I was nearly on a keto diet but never went into ketosis.
After starting HT I eased off a bit as I was happy now that meds had started, but I'm still very diet conscious and will be until this episode is behind me.
One of the questions I am facing is, what sort of diet will I follow during RT?
My current diet means lots of fibre with regular morning BM's and a fair bit of gas, consequence of sprouts etc.....
During RT I think the advice is to consume foods that don't create too much gas and to make sure your bladder is full during the treatment so that damage to the bowel and bladder is minimised.
I guess the radiotherapist may have some suggestions, but I would be interested in your experiences with these requirements, I'm worried about arriving at the 'sunbed' and having to say 'hold on, I think I need to fart!'.....embarrassing.
Maybe I should change my diet during this period, I do like macaroni cheese but also don't want to become constipated and have a problem emptying my bowel before treatment. Did you guys do anything to your diets or just carry on as usual? Did the radiotherapist make any suggestions?
I guess it may depend on when you have the treatment, if it was every morning, I could defer breakfast until after the treatment, might help?
Why is life so complicated?....or is it just me?
Hello Derek
Life is complicated - but don't worry about it.
Before RT at my "planning scan" where you will get your free tattoos on the NHS - I was advised to leave anything that could give me wind alone - beans, pulses, green leaf veg, coffee, booze and fizzy drinks. So I did and had no issues.
Don't worry about your bowels and bladder until the time comes, the former will be covered by a "micro - enema" and the latter with some water - you will be fine.
Just be aware that fatigue will be waiting round the corner for you so keep up with the exercises and walking and again you will be fine.
Easy as 1-2-3. or as the constipated engineer said "I will work it out with my pencil" - sorry about that - I bet you have never heard that before!!
You will be fine - Best wishes - Brian.
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