what to expect

Welcome to the forum westy.

Firstly let me say that everyone reacts differently to RT so my experience may not be what you experience.

I was diagnosed as T3A with a Gleason score of 4+5 and a PSA of 11.9 rising to 14 before my hormone treatment started.

About 4 weeks before your RT is due to start you will probably have three gold seeds inserted into the prostate to act as a target for the external beam machine. Two weeks after that you will have a planning scan (usually a CT scan but it might be MRI) which is done on a simulator. This will enable the clinical oncologist and the radiographers to see exactly where your prostate lies. At this scan you will also get three tattoo marks, one on each hip and one in the groin. These are for the radiographers to get you into the correct position on the machine bed by lining them up with three laser beams.

The treatment regime can be 20 sessions, which is what I had, but might be 33 or 37. This depends on the extent and location of the cancer cells and the number will have already been decided by the multi-disciplinary team who have planned your treatment. You should get 5 sessions per week with a break at the weekends for as many weeks as it takes. If the RT isn't tolerated very well it's possible to have a break in the programme but this isn't very common.

Each treatment takes about 10 minutes on the machine but you will have to arrive half an hour earlier to drink water. You will have to drink between 500ml and 600ml of water in just a few minutes about 30 minutes before your treatment starts. The purpose of this is to make sure the bladder is full and lifted out of the way of the prostate. Make sure you are well hydrated before you go so that the water goes straight to the bladder and isn't absorbed in the stomach. Go for a pee immediately before you drink the water to make sure the bladder is empty at the start.

When it's your turn for treatment you will be asked to lie on the machine bed with a prop under your knees and the radiographers will adjust your position using the laser beams. You need to make sure you lie completely still for the next 10 minutes! Once the staff have left the treatment room the machine will take an X-ray to locate the gold seeds and then you might feel the table move very slightly to get you into the optimum position. The machine will then make two passes over you and that's it until the next day. You will probably need to run to the loo for a pee as soon as you are off the table!

My treatment went very smoothly for the first two weeks but I started to have bowel and bladder problems towards the end of week three. They continued for about 10 days after the treatment finished and have all gone away now. You might feel quite tired after a couple of weeks and this might also continue for a while after treatment finishes.

There is a good reference on the Prostate Cancer UK website and they also have a brochure you can download and print or request a printed copy to be posted to you.

https://prostatecanceruk.org/prostate-information/treatments/external-beam-radiotherapy

https://prostatecanceruk.org/prostate-information/our-publications/publications/external-beam-radiotherapy

If you have any problems with the treatment be sure to let the radiographers know as soon as possible as they will refer you to a specialist nurse who can deal with it.

Have a look at this page for a virtual tour of the radiotherapy department of the cancer centre where I had my treatment.

https://www.beatson.scot.nhs.uk/content/default.asp?page=s40_1

You can read more about my journey through RT in this thread:

https://community.macmillan.org.uk/cancer_types/prostate-cancer/f/prostate-cancer-forum/176449/one-down-nineteen-to-go

Good luck with your treatment and don't forget to let us know how you get on.

Hi Westy

What I found when I had RT was just one day of the runs, trouble is three years later i am suffering from various side effects, but we are not all the same so hope you get by OK.

Joe

Hi Westy,

There’s a great deal in Seamus’ Post, some of which I’ve experienced and some I haven’t.

I’ve a T4, tumour, grade 5, Gleeson 9. 

Prior to my radiotherapy I had a planning scan using CT. Seeds were not planted as was the case with Seamus. I was required to empty my bladder, drink three cups of water fairly quickly and wait 45 minutes until it was time for my planning scan. In my case two scans were required, one without, and one with contrast. Due to my own circumstances it took me three separate attempts over three separate occasions before I received my tattoos. In my case it was discovered that I couldn’t empty my bladder fully, so have been fitted with a catheter. Not as bad as it sounds, it’s just another challenge. It was also discovered that two cups and 30 minutes achieved the desired result

At present I’ve completed 23 of 37 sessions. Due to being fitted with a catheter I don’t experience urinary urgency, however I do experience rectal urgency. Again it sounds far worse than it actually is, and what you experience will be a personal experience. I’ve found I have loose bowels and have experience bowel movements that are more fluid than solid. Imodium solves most of this, and things are very manageable. I do experience fatigue, and shows itself as an inability to absorb any more information mentally. It tends to be a bit random, and an hours rest, usually in bed, resolves my symptoms.

Prior to starting radiotherapy you’ll be fully briefed about side effects, that you may or may not experience, and a timetable for your treatment. This has proved to be a little flexible, but who cares, I’m being treated. Should you have any questions your treatment team will be able to answer them for you, or refer you to someone who can. I’m reviewed weekly, and can discuss anything relevant I wish to at my review. If you feel unwell at anytime tell your treatment team, they’ll help you.

You will receive, or may have received, dietary instructions from the radiology department, regarding diet, and fluid intake. Read if fully, and follow the instructions given. It’s the part you must play in your treatment and recovery.

As you look forward it looks daunting, however, once you get there, you’ll find a flow, and time will fly. Radiotherapy will seem a doodle in comparison, to what you now feel.

best wishes

Chris 

I had no problems with the radiotherapy at all.  I had one night at about 15 days in when I was up all night urinating but that was all.  I have an overactive and sensitive bladder so i am used to being up a few times a night but I must have got up 30 times that night.  I had no problems with bowel movements and did not seem more tired than normal during or after the radiotherapy.  Though I was on hormone treatment for 9 months in total finishing my HT just before the rt began.  That i,s I had my last 3 month injection about 2 weeks before the first RT session and did find that HT did fatigue me a little.  However, carrying on as normal and exercising as normal all the way through 3-4 times a week at the gym and walking helped with the fatigue and anything else.  The radiotherapy itself was so easy and quick.  The longest part was the preparation - drinking etc at the right time and all that stuff - you should have a planning scan a few weeks or so before your first session where they will talk to you about all that.  then getting you into the right position every time takes longer than the few seconds of the actual treatment being given.

All the best

Des

thanks for that. I'm only having my second ht injection next week. They told me I will be on these injections will be for at least 2 years. Should I be worried?? I was diagnosed at 9 on the Gleeson scale, will this have any bearing on the amount of time I need hormone treatment.My planning scan is scheduled for 6th June.

thanks Chris.

I'm a 9 Gleeson as well. until Seamus mentioned gold seeds I hadn't a clue but it seems I may follow the same route as you. I've been told that I'm having 20 sessions of rt due to this being a larger dose over a shorter period to achieve the same result.

I've been given the dietary advice, unfortunately this involves giving up lots of stuff I like!!!! Still a small price to pay.

thanks Seamus.

I don't think I'm having the gold seeds implanted or at least no one has told me I am. I was 9 on the Gleeson scale and my psa levels were 24.

I'm going to be on the hormone treatment for at least 2 years. The thing I found with the injections is that for about 6 weeks I was having regular hot flushes. theres nothing like eating an ice cream and sweating like the proverbial pig.

I'm having 20 sessions of rt, my treatment planning scan is 6th of June and then we go from there. I'm due my 2nd injection next Monday and then I've got blood tests 2 weeks after that. Is there any threat of treatment being delayed if my testosterone levels are too high?

cheers

              Phil

Hi Phil.

I assume your first hormone injection was a three month one so you will be at about the same stage as I was in November 2018 when having the PSA test prior to meeting with the oncology consultant. If your PSA hasn't dropped significantly they might delay to allow the hormones to work for a bit longer before starting RT. Mine had dropped from 14 to 0.4 over that period so let's hope yours has done the same.

I know that some members here also had gold seeds inserted prior to RT but it seems to vary according to where you are being treated.

The standard radiation dose for RT is 74 Grays. If you have 20 sessions you will get 3.7Gy per day but only 2Gy per day for 37 sessions.

There is a lot of helpful information about RT on the Tackle Prostate Cancer website.

Different consultants use different times on HT sometimes it is just their normal practice or the practice at that hospital - sometimes the consultant urologist is the one who controls this or says it is up to your GP to decide how long you stay on and what is common practice there - I consulted with people who practiced in all those ways - so quite a difference.  At the first hospital I went to they would have kept me on HT for 2 years in total - 6 -9 months before and then afterwards for 18 or 15 months.  If the Urologist had kept control of the HT and left it up to my GP I would have been kept on indefinitely or until someone - urologist or rad. onc decided I should or could come off.  Glad I didn't go down that route. Remembering that the HT stays in your body for a good number of months afterwards and the longer you are on it the longer - so I was told, it takes to completely leave the body.  The second hospital where I had my treatment stopped the HT just before the RT for people with my grade of cancer and my age as the consultant said there would be no "real" PSA readings while on the HT and if anything sinister was happening then action could be taken quickly and also, he didn't like keeping people on HT for long as he felt it was his job to give them a good quality of life back as soon as the RT was finished whereas if they continued on HT with side effects this would not always be so.  I went to the second hospital as the first hospital did not use the fiducial markers - gold seeds implanted into the prostate to help target the RT beams - I wanted this done to as much as possible avoid collateral damage to bowel and bladder as I already suffered from a sensitive and overactive bladder and had lost part of my sphincter muscle from infection about 10 years prior to the PC.  The 9 months I was on HT I had minor side effects - yes I was more fatigued but just kept doing the things I normally did.  I did get hot flushes but they were no where near as bad as the ones my wife gets and once off HT mine eventually went away she still has hers and commonly these can remain with her for the rest of her life.  I now have some empathy with her!  I have know people with t he same gleason and t scores as me have 3 or 4 years of HT and some have none at all but go to RT.  So it just seems a difference in practice by individuals and hospitals in a lot of cases.  My PSA was at most 13 Gleason 7 (3+4) and T score T2b but T3 could not be ruled out as the tumour was bulging at the back of the prostate.  My post RT PSA readings have all been around 0.05 and I am now 28 months post RT.  I think that the worst side effect for me would have been to put on weight but as I kept on exercising as normal this didn't happen but I did gather a spare wheel whatever I did even though I did not put on any weight.  Thankfully this also has gone.  You can also suffer from muscle shrinkage so again important to do some resistance training for me.  My best side effect which to my knowledge only one other man of my acquaintance got was that the hair on my head actually thickened out and grew - commented on by my barber and as I said a friends brother also had the same side effect - shame that one has gone also.  I think most men find that their hair thins and as mine has been thinning now for about 3 or 4 decades I wasn't looking forward to that.  All in all being on HT for 2 years is normal and there are a lot of men who have been on HT for a lot longer.  Indeed when I went for my first HT injection the nurse said they had a man at our surgery who had been on HT for 13 years and was then 84 so it is quite possible to stay on for an extended time. 

If you get any severe side effects remember to inform your GP and consultant oncologist/rad.onc as medication can be added to try and alleviate them or in the worst cases the type of HT given can be changed.

All the best.

thanks for that. Hair thinning isn't really an issue for me, I've been shaving my head for years I started to lose it in my late teens. I've grown a moustache in protest against the ht. I thought shaving was a thing of the past most disappointed that I still have to lol. Hot flushes are only a problem for me up to a month after my injection, I too sympathise with the female of the species in this regard.

cheers Phil