A long and winding road.

Hi John, welcome to the community. Sorry to read about your diagnosis.

Your treatment so far is doing a good job.

Most radiotherapy is delivered by IMRT machines which are extremely accurate and minimise dosage to healthy areas. There is no way to completely avoid some collateral damage but with the modern machines this should be minimal.

It definitely isn’t a hit or miss situation as you will have a planning scan where you will be marked by 3 almost invisible tattoo dots to help line you up for each treatment. Since you still have a prostate they are likely to place fiducial markers within your prostate to keep an eye on where it is each day and allow them to make minute adjustments. I had salvage radiotherapy so no markers, just the three dots but they took a scan every day prior to firing up the ray gun allowing them to make sensitive adjustments and keep you in the right spot. The radiotherapy should blast the cancer cells to oblivion!

All the best,

Well , first of all are you a music lover , behind blue eyes , long and winding road , ex . How many fractions are you going to have ? Me i had 20 , had most listed side effects , i found routine best from the time i left home every day, i got there early and had a good chat with fellow patients , ended up a small family at the hospital in the end i looked forward to going ! The sessions went very quick , first 2 weeks ok but second is when the side effects kick in , always be aware where the nearest tiolet is , i got a toilet card from macmillian centre , wear nice comfortable colthes , i found joggers best . The worst side effect i had was 3 days after treatment i had AWR a listed side effect ( not all guys have it for sure ) but ended up in A/E and had a catheter for 2 weeks no problem just a bit awkward . I found since treatment now 4 months ago I am still getting tired , and lost most body hair , and put on weight thru the HT injections but hey psa down to 0.03 that’s what they go by now , I found it most helpful and reassuring that I personally know 6 guys who have been thru PCA all had different treatments . My next blood test is in September . 

Hi

I was diagnosed Gleason 4:5 March 2018, I started HT to prepare me for 20 fractions RT

We are all different, but I had the 3 tatooes, 1 on each hip and 1 on the pubic bone

I had Ultrasound supported IMRT RT. At every fraction I was lined up on the bed with an ultrasound probe pushed against my perenium, the laser type lights aligned onto my tatooes, then the live ultrasound image was overlaid on the planning CT scan. I suffered little or no collateral damage, I was warned about bladder damage and rectal toxicity. I get some minimal anal mucous discharge and some minor increased need to pee more often, 6 months after RT, but overall no major issues.

BUT we are all different and hospitals and staff are different and machines are different, so i am saying there is no hard and fast outccome to RT

Hi

Yes it all takes time.I was going to the gym before I started treatment but after the first session of chemo I just couldn't manage it my joins were aching and everything chore just sapped the energy out of me .Even doing some basic things were a task.

But things are getting easier but will not be returning to the gym until this is over as I don't want to take the chance with anything else.

I hope everything goes OK with you and let me know how you get on.

JOHN

Hi

Thanks for the reassurance you do read some stories online that didn't build my confidence at all.

I have two sessions of chemo left and as each one passes the easy they get easier. When they first started I thought OMG how am I going to cope with all this but that's changed now. After the chemo I then have to wait 4 or 5ed weeks before the radio starts.

When I first attend chemo it was a little daunting so I guess I feel the same about the radio.

I agree the alternatives don't sound at all good, not that I would refuse the radio due to them. A last resort I guess.

Thanks for the confidence boost as I get more positive replies it lifts some of the pressure.

JOHN

The basic procedure (in my case at least) is that you go in for a planning session at which point they scan you and then tattoo three dots on you - one at the top of each leg and one in the middle, over the pubic bone. These are what are subsequently used to line you up correctly in the treatment machine. Then for each session I was asked to arrive at the hospital 45m before the time of my session and use a "micro-enema" to clear out my lower bowel (to minimize radiation damage). This took about 15m to work. Finally, 20m before my session, I had to empty my bladder and then drink three cups of water. This ensures that your bladder has a (more or less) measured amount of liquid in it during the procedure, which lifts it clear of the prostate and again minimizes radiation damage.

Radiation irritates the bladder and makes you want to pee a lot, so you'll probably be advised during the planning session to cut out caffeine and alcohol for the duration of the RT (both are bladder irritants, so make the side-effects worse). I was also advised to go on a low-fibre diet (no brown bread, etc), but don't change your diet without advice; you should be told all this during the planning session.

I really didn't find RT too awful an experience at all. The side-effects for the final couple of weeks were a nuisance (I had to make two loo-stops during my 40 minute journey to the hospital!) but I didn't experience any diarrhoea, I just started passing a bit of clear mucus. The side-effects reach their peak about 10-14 days after RT finishes, but in my case they then quickly eased. Within 6 weeks of ending RT they'd pretty much all cleared up.

Hope that's of some help, and please do ask if you have any questions!

Best wishes,

Chris