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Starting radiotherapy

User
Posted 24 Apr 2018 at 08:42
Studies I have read concerning radiotherapy mention “gold implants” to help,align the machinery, is this still the case?

I understand tattoos are also used.

I understand also using mini enemas before every day treatment are normal

Any comments gratefully received

User
Posted 25 Apr 2018 at 08:31
I had mine done at the Churchill in Oxford and had an appointment beforehand to have tattoos done and they also gave me written instructions about the RT procedure as well as explaining and answering any questions.

They gave me the box of mini enemas to take home with me but because it was an hours journey to the hospital I took one with me every day. There were six RT machines in use so I was given a schedule of my appointments and which machine I was on for each appointment. In the waiting area was a traffic light system for each machine to show if it was running on time or if not then it showed the expected delay. About 45 minutes before the appointed time I would locate a toilet cubicle and use the enema (quick acting) and then at 30 minutes before the scheduled time I would drink three or 4 cups of water before going to the waiting area for my machine. This quickly became a routine and I got to know a lot of interesting and nice people there which turned it into quite a social event. The other plus side was that even if there was an odd day when I might have been tempted to feel a bit sorry for myself, meeting with great people who were having treatment for more life changing problems soon put a stop to it. The actual RT was a total non event but the staff were brilliant.

All the best

Kevan

Life doesn't have to be perfect to be wonderful 

User
Posted 25 Apr 2018 at 09:19

I had my radiotherapy at the Western General Hospital Cancer Centre and my experience was very similar to Kevan's.

I went for a planning scan where I was asked to use a micro enema and empty my bladder. I then had to drink three cups (the cups next to a cold water source) and wait 30 minutes.  During the planning CT scan I was marked up with three small "tatoo" dots and measurements on the bed were taken and noted.

I was given a sheet with all my appointments and times plus a pelvic radiotherapy advice sheet.

At this centre men having pelvic radiotherapy (I assume women have to do the same if they are having pelvic RT too) are asked to use a micro enema for the first 10 days of treatment (I had 20 sessions in total). I was told this was to remove any gas from the lower bowel and rectum so that it wasn't displacing anything.

I generally arrived about an hour prior to radiotherapy and used the enema. 30 minutes before my RT I emptied my bladder and then drank 3 cups of water as in the planning scan. My RT was due at 10:50 so I drank the water at 10:20 and handed a card over at the RT desk for themn to start "the clock". I rarely was taken at 10:50, it was often around 11:10 which wasn't easy considering I don't have a prostate!

The radiographers line you up on the bed very accurately. I forgot to mention that during the planning scan the position of the head rest and foot rest were also measured. All of this is replicated on the treatment bed. Once they were happy I was lined up some figures were read out to confirm this between at least two radiographers. The radiographers left the room and a very accurate CT cone scan is taken.

The RT team then align this image with the original planning image. You feel the treatment bed move slightly as they line those images up. 

Once they've done that the high voltage kicks in and the RT gantry rotates around you.

This is repeated each day so they are working to very tight tolerances to ensure the treatment is delivered to the correct area and non treatment areas are minimally exposed to radiation. If your bladder isn't full enough or too full they will ask you to empty your bladder and go through your routine again before actually treating you.

Best wishes, Ian

User
Posted 25 Apr 2018 at 10:53

There is a difference in treatment depending on whether you are getting IGRT Tomotherapy or Volumetric Modulated Arc Therapy (VMAT). The latter is quicker and more efficient. I believe Tomotherapy is used for more complicated or longer treatment areas (thanks to Ian for pointing me to the site that explained that).
I am 10 sessions in to my 37 fractions. I was given 22 micro enemas and told you won't need them after that. I have that in the accessible toilet at work an hour before my appointment. I then have 2 cups of water ~45 mins before then drive from work to hospital. I am having Tomotherapy not VMAT presumably as they need to treat prostate, seminal vesicles and pelvic lymph nodes. They have been consistently late so far (~half an hour) which can affect urgency. They do a very quick line up of lasers to tattoos then the table feeds into machine and there is about a 5 minute CT scan. I'm fed out a few more minutes then back in the same machine for the radiotherapy which again takes about 5 minutes. It's all done in about 15 minutes.
Ian also pointed me to a document on the Freeman Hospital Northern Centre for Cancer Care site titled "Radiotherapy to the prostate information for patients". This said that a dietary advice leaflet was available from the radiographers. I asked about getting one yesterday and the radiographer looked slightly puzzled then just said that I don't need to change anything as my preparation and condition for treatment was absolutely fine.
Richard

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User
Posted 24 Apr 2018 at 22:52
Pallance

I don't think there is a "normal" on the NHS just a postcode lottery. I had tattoos and mini enemas, not all guys do. Advice on diets seem to vary at different hospitials. I am led to believe some machines do not require markers. Listen to you radiotherapy team they know what equipment you are being treated with.

Not sure where all the regular members are, there are alot of unanswered questions at the moment.

Good look with your treatment.

Thanks Chris

User
Posted 25 Apr 2018 at 01:14

Some use gold seeds, some don't. The newest machines don't need the gold markers. Tattoos is rather a grand name for a few tiny dots that are hard to find after your treatment is over.

Enemas are not used routinely. Some hospitals require all men to use a daily enema, some only use them if the scans show he isn't emptying his bowel properly. Most men are told to go on a high fibre diet - my husband had to go on a low fibre diet. Studies are interesting but tell you nothing about how your onco likes to work, or what the planning scans will indicate is best for you and your internal layout!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Apr 2018 at 07:37

Dont think of them as enemas in the normal sense, where you get a good flush out, they are more  gentle lubricant to help you empty your bowels. Very often, the radiotherapy has a very similar effect and you stop taking them after about a week. 

The actual radiotherapy is a non-event, concentrate on getting into a routine to get yourself to your appointment time with empty bowels and your bladder sufficiently full and you will sail through it.

User
Posted 25 Apr 2018 at 08:31
I had mine done at the Churchill in Oxford and had an appointment beforehand to have tattoos done and they also gave me written instructions about the RT procedure as well as explaining and answering any questions.

They gave me the box of mini enemas to take home with me but because it was an hours journey to the hospital I took one with me every day. There were six RT machines in use so I was given a schedule of my appointments and which machine I was on for each appointment. In the waiting area was a traffic light system for each machine to show if it was running on time or if not then it showed the expected delay. About 45 minutes before the appointed time I would locate a toilet cubicle and use the enema (quick acting) and then at 30 minutes before the scheduled time I would drink three or 4 cups of water before going to the waiting area for my machine. This quickly became a routine and I got to know a lot of interesting and nice people there which turned it into quite a social event. The other plus side was that even if there was an odd day when I might have been tempted to feel a bit sorry for myself, meeting with great people who were having treatment for more life changing problems soon put a stop to it. The actual RT was a total non event but the staff were brilliant.

All the best

Kevan

Life doesn't have to be perfect to be wonderful 

User
Posted 25 Apr 2018 at 09:19

I had my radiotherapy at the Western General Hospital Cancer Centre and my experience was very similar to Kevan's.

I went for a planning scan where I was asked to use a micro enema and empty my bladder. I then had to drink three cups (the cups next to a cold water source) and wait 30 minutes.  During the planning CT scan I was marked up with three small "tatoo" dots and measurements on the bed were taken and noted.

I was given a sheet with all my appointments and times plus a pelvic radiotherapy advice sheet.

At this centre men having pelvic radiotherapy (I assume women have to do the same if they are having pelvic RT too) are asked to use a micro enema for the first 10 days of treatment (I had 20 sessions in total). I was told this was to remove any gas from the lower bowel and rectum so that it wasn't displacing anything.

I generally arrived about an hour prior to radiotherapy and used the enema. 30 minutes before my RT I emptied my bladder and then drank 3 cups of water as in the planning scan. My RT was due at 10:50 so I drank the water at 10:20 and handed a card over at the RT desk for themn to start "the clock". I rarely was taken at 10:50, it was often around 11:10 which wasn't easy considering I don't have a prostate!

The radiographers line you up on the bed very accurately. I forgot to mention that during the planning scan the position of the head rest and foot rest were also measured. All of this is replicated on the treatment bed. Once they were happy I was lined up some figures were read out to confirm this between at least two radiographers. The radiographers left the room and a very accurate CT cone scan is taken.

The RT team then align this image with the original planning image. You feel the treatment bed move slightly as they line those images up. 

Once they've done that the high voltage kicks in and the RT gantry rotates around you.

This is repeated each day so they are working to very tight tolerances to ensure the treatment is delivered to the correct area and non treatment areas are minimally exposed to radiation. If your bladder isn't full enough or too full they will ask you to empty your bladder and go through your routine again before actually treating you.

Best wishes, Ian

User
Posted 25 Apr 2018 at 10:49
I start on Monday. Similar planning to others here, but no enema is given. They told me if they were concerned, I'd be given dietary advice. I was told to drink plenty of water every day throughout the treatment, but not sparkling water as it might create a build up of gas. Also told not to drink tea - bit hard for an Ulsterman.

I was meant to start tomorrow but they called to say I'm getting vmat instead of imrt and needed a few more days to plan.

Ulsterman

User
Posted 25 Apr 2018 at 10:53

There is a difference in treatment depending on whether you are getting IGRT Tomotherapy or Volumetric Modulated Arc Therapy (VMAT). The latter is quicker and more efficient. I believe Tomotherapy is used for more complicated or longer treatment areas (thanks to Ian for pointing me to the site that explained that).
I am 10 sessions in to my 37 fractions. I was given 22 micro enemas and told you won't need them after that. I have that in the accessible toilet at work an hour before my appointment. I then have 2 cups of water ~45 mins before then drive from work to hospital. I am having Tomotherapy not VMAT presumably as they need to treat prostate, seminal vesicles and pelvic lymph nodes. They have been consistently late so far (~half an hour) which can affect urgency. They do a very quick line up of lasers to tattoos then the table feeds into machine and there is about a 5 minute CT scan. I'm fed out a few more minutes then back in the same machine for the radiotherapy which again takes about 5 minutes. It's all done in about 15 minutes.
Ian also pointed me to a document on the Freeman Hospital Northern Centre for Cancer Care site titled "Radiotherapy to the prostate information for patients". This said that a dietary advice leaflet was available from the radiographers. I asked about getting one yesterday and the radiographer looked slightly puzzled then just said that I don't need to change anything as my preparation and condition for treatment was absolutely fine.
Richard

User
Posted 25 Apr 2018 at 19:55
Four months ago we were in your situation, unsure how radiotherapy would effect our lives, would it achieve the desired result, and from my point of view, how would my intensly private husband cope. In fact, while it is a very tiring experience, it was bearable, and yesterday our oncologist told us he was very pleased with the outcome. His PSA is now .03, and while HT in the form of three monthly implants, and daily Bicalmitude, will continue, probably for another two and a half years, we were told to go off and get on with the rest of our lives.

It is interesting to see from other posts how preparation for the treatment varies. Ray was told to use enemas daily, including weekends when he was not having treatment, he hated this and relished being a rebel and not using them Friday and Saturday! In fairness there was never a problem , although we did see several other patients having problems, and being sent out to sort out bowel and bladder difficulties before treatment could start. He was also asked to arrive one hour ahead of treatment, and to have his measured drink three-quarters of an hour before the treatment time. The actual radiotherapy was straightforward, and mostly ran to time, although one session ( he had 37), was cancelled due to machinery problems, we were phoned at 7 the previous evening.

Our appointments were all at or about ten in the morning, so arriving at the hospital by 9 meant at least that parking was not too difficult. It took nearly 20 minutes to park yesterday afternoon, that would have added to the stress in the morning!

We found the radiotherapy staff very kind and friendly, from the receptionists, who quickly got to recognise us, and all the other staff, and their caring attitude really helped. The general atmosphere of the waiting area was good, and I know Ray had several helpful conversations with

Other patients.

Our unit, a newish building built by MacMillan, has a bell to be rung by those finishing their treatment, and joining in the applause whenever it was rung was very moving, Definitely something to aim for and enjoy!

Good luck with your treatment.

Mikesmum

User
Posted 26 Apr 2018 at 08:12
Can I thank everyone who is posted on this topic for me. No I do not start my radiotherapy for eight weeks all the comments I’ve been very helpful in calming my anxiety . I am now well aware that there is no set standard or procedure for the treatment and it will all depend upon my internal layout and machinery at the hospital I am attending . In my case it will probably be Southmead General Hospital, or Bristol Royal Infirmary, both at Bristol so if anyone has any experience of either radiotherapy unit that would still be of assistance to me
User
Posted 26 Apr 2018 at 18:56
Ringing that bell, and cheering everyone else who does it, is an amazingly emotional feeling😀. Don't forget to get it on film.

You meet the same group of daft old men cracking jokes and pulling legs, supporting each other, you feel sad when they finish their treatment, and they leave.

User
Posted 27 Apr 2018 at 07:39
Morning everyone,

I finished my SRT earlier this month. I wouldn't say I was anxious about the treatment, more concerned regarding the preparation and procedure. My worries were fortunately unfounded. The good humoured support and friendships from both men with PCa and women with other cancers was both comforting and reassuring.As Tykey says,I also felt sad when these folk rang the bell at the end of their treatment. I'm sure you will experience the same.All the best mate.

Paul

User
Posted 06 May 2018 at 23:49
Although I don’t start radiotherapy for eight weeks I am trying to get my mind around it and how I will cope. Since being diagnosed I have been very stoical about it in that what is will be I have prostate cancer and I’m getting the best possible treatment available on the national health service. Keeping a positive mental attitude is very important whilst undergoing treatment and while I am very fit person I will be keeping cycling 200 miles a week as long as I possibly can but I also enjoy social drinking and absstaining from Sunday through till Thursday is not a problem for me. Regular Monday to Friday treatment I understand very well keeping off of gassy drinks is important to help the radiography staff pinpointing where my prostate is in relation to my bladder and my urethra and other vital organs nearby to prevent them being damaged by the radiotherapy. I would like to be able to go out socially on Friday night after my treatment for the week is over and my question is would it be okay to go out for two or three beers with my friends just for the one night?
User
Posted 07 May 2018 at 00:16

Talk to the RT nurses when you go for your planning appointment. John was told absolutely no alcohol for the duration but he was on the high dose, short programme so perhaps it is a bit different?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 May 2018 at 09:16
Morning, I too wanted to have 2/3 pints on Saturdays after my week of treatment ( SRT 20 sessions over 4 weeks) Opinions and advice were varied due to individual circumstances. Best to ask the specialists in your particular case. Fortunately I could partake at the weekends but chose not to on Sundays. I found it beneficial to relax in the warm cocoon of a pub bar !! and reading your post it sounds like a couple of pints with your pals would do the same for you. Hope all goes well for you.

Paul

User
Posted 07 May 2018 at 10:01

I believe it is all related to not having too much gas in the bowel. I asked about alcohol after my first fraction after going to a party the day before. I was told I my bowel/bladder prep was fine and has been absolutely fine all the way through treatment so far. I have recently stopped drinking during the week as I am training again and I've had problems with stomach cramps and looseness. My local GP has put me on super strength vitamin D tablets (just before the sunniest May weekend on record!). This may be a side effect of having aggressive PCa?
Bottom line - a few beers on Friday when you have Saturday and Sunday off can't be a problem!
Mention it to the radiotherapists and I'm sure they will concur.#
All the best!
Richard

User
Posted 07 May 2018 at 12:07

Mine is aggressive Rich. I'm Gleason 4:5 T2c. I will be going to Bristol Haematology and Oncology centre, so i guess I will have to wait see.

I have my first review since starting treatment on 21st June, to look at interim blood test results for PSA and Testosterone. Hopefully my PCa will have responded to the Decapeptyl i am on and its growth and spread will have been halted, but I know some cancers can be resistant to hormone therapy, so it's yet another nervous wait for results. Waiting for results of tests has been the worst part since initial discovery of my PCa.

 

User
Posted 07 May 2018 at 12:19

Someone posted here that if you're having side effects of HT treatment it is an indication that it is working correct??? Or was it the other way around - if you have no HT side effects it may not be working,
Regarding your previous post about where to get the HT injection the reason I was advised to choose the shoulder was because the inevitable bruising afterwards is least painful in the shoulder. Thigh, glute's will hurt every time you take a step. It only lasts a day or so anyway.
Richard

User
Posted 12 May 2018 at 22:25
I could understand how a subcutaneous pellet could work, slowly releasing the drug over three months but I struggle to see how injection of suspension into my thigh could work or could do the same thing but after chatting to one of the prostate cancer UK nurses she put my mind at rest . I think I am getting mild hot flashes and I certainly noticed I am more tired than I was by every day housework and cycling . But we noticed during sex and definite change in Ejaculate. Instead of quite an amount of white looking fluid all we get now is a very small amount of clear fluid and that is probably the effect of the Triptorelin. Saying that I am only in the fourth week of triptorelin. So things might change.
User
Posted 13 May 2018 at 10:01

Hi
I am due to start 37 sessions of radio therapy on the 28th of June 2018 planning to take place on the 14th of June after returning from our holiday in Greece on the 13th.
I have been on Baicalutamide since the 1st of March this year with little side effects so far apart from feeling tired some days and more back and hip ache.
I have found this thread very helpful thank you.

Good luck Pallance

User
Posted 13 May 2018 at 12:00

The injection into the muscle is really no trouble to me at all - especially in the shoulder. I am not aware of any detrimental effect by having the injection into muscle as opposed to the sub-cutaneous pellet but more informed people may know better? I was speaking to a couple whilst waiting for my RT on Thursday and he showed me a 4 square inch bruise adjacent to the pellet injection site on his stomach. He said the first injection had him in tears. There are of course so many more stories about this method not being any issue whatsoever. I have absolutely no issues with needles so I wouldn't mind but I wasn't offered a choice.
Richard

User
Posted 25 May 2018 at 15:56

I had a good chat with my assigned cancer care nurse in my local NHS hospital today.

I am Gleason 4:5 T2c

i started Triptorelin on 23rd April and I have a review on 21st June to check how well the hormone treatment is shrinking my PCa

At this review my oncologist will look at the week befores blood test results for PSA and Testosterone

If she thinks my hormone treatment has had the desired effect I will be given a start date for my Radiotherapy

This will start approx at the 3 month point from my first hormone injection 

so I have my fingers crossed, as I wanted to do the awful 7 weeks Monday to Friday RT during the summer months

In my area NHS Trust, RT is normally given at 3 month point if your PCa is responding to hormone therapy 

Other areas may have different standards, I post this just for information 

 

User
Posted 25 May 2018 at 17:28
I wish you every success with your RT, Alan. God knows I'm only too aware of how stressful this rollercoaster of dealing with cancer can be! Hope the outcome for you is positive.

Chris

User
Posted 28 Jul 2018 at 22:03

This sort of an update

Ive had my 2nd Decapeptyl IM injection on 23rd July and next day my “list” arrived from the hospital. 20 fractions starting 7th August.

i have had my planning CT scan supported with ultrasound probe and finished up getting my three “freckles” tattooed 

Edited by member 28 Jul 2018 at 22:04  | Reason: Not specified

User
Posted 28 Jul 2018 at 22:35

Good luck with the RT Pallance.

 

User
Posted 29 Jul 2018 at 09:42

Yes, good luck.

I'm sure you will be back soon telling us all your concerns were unfounded. There will be sessions which don't go absolutely smoothly when you might get the yellow card and sent out for 10 minutes while you drink a bit more (often to a lot of leg pulling by your fellow patients😁).

On one occasion I was given the card and told to do some strange exercises to get rid of some gas. It's the first time a lady has ever asked me to do that!!😃😃😃

We look forward to seeing a picture of you ringing the bell!

User
Posted 29 Jul 2018 at 10:04

Originally Posted by: Online Community Member

Yes, good luck.

I'm sure you will be back soon telling us all your concerns were unfounded. There will be sessions which don't go absolutely smoothly when you might get the yellow card and sent out for 10 minutes while you drink a bit more (often to a lot of leg pulling by your fellow patients😁).

On one occasion I was given the card and told to do some strange exercises to get rid of some gas. It's the first time a lady has ever asked me to do that!!😃😃😃

We look forward to seeing a picture of you ringing the bell!

thanks for taking the time to give me encouragement, it’s just what I need.

as I left hospital after my setup session there was a guy ringing the bell surrounded by his wife and 2 children. He had cannula in his hand and drips hanging from a mobile stand he was shiny bald, so probably on chemo as well.

certainly put my T2c into,perspective 

thanks again Tykey 

 
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