"What do you wish you had known before starting Radiotherapy"

I've shared my tip - it's up to you to add some more.

Thanks - Brian.

I had 20 sessions earlier this year and discovered:

1. It's absolutely painless

2. The radiotherapy itself lasts less than 2 minutes and you're on the 'bed' for around 5mins while the Radiotherapists adjust your position on the 'bed'.

3. Tiredness started at week 3 thru a combination of the treatment, travelling, waiting for your name to be called and a mild form of anxiety

4. There is a sort of camaraderie seeing the same faces everyday

5. Your time slot is loosely adhered to

6. The radiotherapy machines do break down

7. How friendly the Radiotherapists and receptionists are

8. Knowing where toilets are is a must re pelvic radiotherapy and don't be afraid to ask for medication to help with urinary incontinence when radiotherapy ends

9. It's not a daunting experience, I actually missed the routine (sad, I know)

Agree wholly with Phythian 99. A suggestion. I always get to the hospital 45 mins before appt. This allows me time to toilet and thus no rush if they’re in use which they always are. Then to sit calmly and gather myself ready for RT. Done 17 of 20 now and do find if I’m early I get called in early, particularly if an afternoon appt.

 Pythian99 ,  I totally agree with all of your points!  My 20 sessions were just under 4 years ago.  I'm now 3 years into Remission.  My PSA is now 0.29, up from 0.17 last time.  Still nothing to worry about. 

The only thing I wish I had known about was the E.D. that looks like it's here to stay!

But... even if I had known, I would have still went ahead with the Radiotherapy!!  No worries there!!

As a recent receiver of Image-Guided and Intensity-Modulated RT…

• It’s quite similar to your MRI and CT scans but without contrast, a lot quicker and nowhere near as daunting as you imagine it’s going to be.
• If you are driving, check the car parking arrangements before starting. You may be eligible for free parking. There may also be queues.
• Research public transport options in advance too in case driving is an issue due to parking or fatigue.
• Also, double-check their bladder and bowel requirements before starting. Allow yourself plenty of time for this.
• Aim to drink only water and decaf tea/decaf coffee leading up to, during and for a few weeks after treatment. Should help reduce urgency feelings. 
• After the first couple of fractions you know what to do and it becomes quite routine.
• Everyone in the waiting room is in the same boat. It’s good to compare notes and find out their stories.
• Missing a day due to a machine not being available isn’t an issue. The treatment is cumulative so a fraction will be added on. No need to worry.
• Be prepared to have to empty the tank if there is a long delay. Don’t drink quite so much water before the next slot as you will retain some hydration from the first attempt.
• You may have an occasional ultrasound check to see how full your bladder actually is. That’s painless and quick.
• It’s rare to be called through spot on time. Delays can and will happen, for various reasons.
• Once in the room you will need to remove shoes and trousers before you lie down.
• They have a lot of people to treat so there’s no standing around, chatting.
• The radiologists will double-check you are who they are expecting. One of my treatment days was my birthday and I waited to see if they spotted it. They did…!  
• You will then lie down and lower your underwear slightly so your new tattoos are visible. Paper is provided for dignity.
• Your feet may be placed in slots to stop movement and your head in a foam rubber support. It’s all quite comfortable.
• The radiologists will position you, using your tattoos and their fixed laser markers. You don’t move yourself unless told to.
• You do need to keep very still after being positioned.
• There’s no sensation of the RT being delivered at all, just some noise from the machine.
• My tomotherapy sessions were around 15 minutes long so I devised a memory game to take my mind of things. I started travelling regular car journeys and walks in my mind, trying to recall sights along the way. It made the time in the tunnel go much quicker.
• Be prepared to see some very sick children. And adults. It broke my heart to see one young child being wheeled through, with lots of teddies on the bed.
• It’s good to have a walk very locally or find somewhere to have a bite to eat before heading off home. You will be extremely well hydrated and will need to empty the tank. Maybe more than once…!
• It is useful to know where toilets are on your route home. Also other viable emergency stopping places.
• Carry wipes, spare pants and trousers in a backpack. You just might need them. Probably won’t, but definitely better to have them than not have them!
• You are likely to get tired and lack energy. On 20-day treatment, week 3 into 4 seems to be a common point. It’s normal and takes a while to improve. Try to have a walk each day, which will help with that.
• Expect some other side effects from the list. Also normal. It’s a bonus if they don’t happen!
• The radiologists are lovely people and need chocolate. Buy them a box to say thank-you when you are finished!

Later addition…

• If you are a 2- or 3-day in-between-poos man and have to self-prep your bowel, start getting used to a daily poo well before starting radiotherapy. Be patient, don’t strain and after a week or so your body will adapt to the new schedule.

One question I have, am due for 20 fractions in the not to distant future, is driving to the appts  feasible, and or is public transport feasible, as these are my 2 main options

Driving is OK Aubutied1c171 , suggest you check the parking arrangements before starting, I have seen long queues waiting for spaces. You may be able to park for free as well. If that hasn’t been mentioned already, just ask. Public transport is certainly an option, maybe later, depending on the parking situation, how the fatigue hits you, and how you feel. I have now updated my list! Good luck with your RT.

Hello Aubutied1c171 

Just to add to the post above from Amplitude I walked to my appointments as the hospital is just over a mile away - on rainy days I jumped on the bus!

My hospital The Christie Oldham offered free gated parking whilst having Radiotherapy.

If finding a parking space is a worry - my wife has regular appointments at another hospital in Manchester - parking is almost impossible so we use a parking app "Just Park" and rent someone's drive near the hospital (4 hours for £5). We just book it, turn up - we have a parking space - no worries and walk to the appointment.

I wish you well with your radiotherapy.

Best wishes - Brian.

Thank you Amplitude, from my own experience that just about nails it.

I would like to add that the side / after effects can be very variable person to person.
The tiredness / lack of energy never applied to any part of my treatment and apart from a very minor effect did bowel or bladder disruption.
My age at the time was 75.

 Aubutied1c171 Do you have to take an 'enema' before your appointment?  That could be a factor on how you travel to the hospital. 

Luckily I was able to take mine at the hospital, arriving about an hour earlier.