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

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

Ido4

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 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 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 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 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 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 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 25 Aug 2018 at 16:42

Fraction 14 of 20 Friday 24th August. Main problem for me is the constant diarrhoea. I’m using melt on the tongue Imodium, it helps a bit.

Tiredness comes and goes, but I still find the daily cycling helps no end, not too long as I need to be fairly close to a loo

When I had mynplanning CT Scan a foot mould was taken and all my other settings.

Daily routine is 60 minutes before my fraction, mini enema, 30 minutes later empty bowel and drink three cups of water in quick succession, tell the receptionist I’ve completed my “prep” and hope my RT machine is on time!

After 14 fractions I have no discernible skin discolouring or other skin issues

Once in i “mount” the table. Feet into my mould, support triangles push my knees out, then the staff place the ultrasound support probe firmly against my perenium. They view the image to check if the water has lifted my bladder away from my prostate and the enema has emptied my bowel enough to move it out the way of the treatment area enough. All this must be right before they start my fraction.

The machine treats me from 6 o’clock 9 o’clock 11 o’clock 1 o’clock and 3 o’clock positions. Then it’s dismount, wipe all the conducting jelly off and quickly visit the loo.

I hope this info helps to prepare people unsure of what to expect.

I attended a pre treatment Open Evening at my centre, this was invaluable

Alan

User

Posted 03 Sep 2018 at 22:59

Well, I get to ring the bell at my Oncology hospital tomorrow!

At the beginning seemed like it was going to take an eternity, but here I am getting fraction 20 tomorrow.

Reference the comments about not getting an ultrasound probe, I asked about this and it was explained about overlaying the ultrasound image over my planning CT scan to ensure my enema and drinking routine moved my rectum and bladder outside of the treatment beam as much as possible. Also IMRT with Ultrasound support and my tattoo alignment is accurate to less than 3mm I was informed. That sounds good enough to me.

The Bristol Haematology and Oncology hospital I get treated at is a Universty teaching hospital and reports put it on a par with The Royal Marsden and that was the worlds first hospital dedicated to cancer diagnosis and treatments and has an enviable reputation, so I’m very happy.

I won’t have much to report from now on, but I have been advised my side effects will continue to possibly get worse for two weeks after treatment completion and then subside slowly

once I am in remission I will be staying put here to help and advise those just starting their journey

Edited by member 03 Sep 2018 at 23:02 | Reason: Spelling again!

User

Posted 04 Sep 2018 at 16:01

You are of course spot on Ian

with a Tuesday start and a Bank Holiday my treatment spanned 5 weeks. I’ve had one certain member of the radiography team at each of my fractions since I started, he shook my hand and wished me luck today but I caught him out, I had a tin of heroes sweets to give him for the team.

I left a group of friends I have made over the last five weeks, all at varying stages of treatment, it truly was emotional, but I had a big smile on my face as I rang the bell and my wife was there, but was tinged with sadness in a strange way!

Arriving every day in a large reception area filled with about 30 ill people can be a very sad and daunting place, but on arrival there was a young girl receptionist who was always ready with a smile and she went to the trouble to learn your names which was amazing considering the amount of people coming and going! On departure I gave her a tin of heroes as well and I guess she didn’t get many gestures like that and she was near to tears as well!

When I arrived home after the usual hour drive, I sat down on my sofa and actually shed a tear or two, as the stress of the last five weeks regimen seem to lift from my shoulders. I certainly won’t miss the daily mini enemas and drinking drills.

it won’t truly sink in till tomorrow, when I won’t have to spend five hours on the go, always on the look out for the next toilet stop!

Still have to keep a certain regiment going, mainly keep flushing the bladder due to the side-effects possibly continuing to rise over the next two weeks before subsiding slowly. But I can at last start to eat some of the food I like to eat when I was told to cut out a lot of fibre from my diet

Edited by member 04 Sep 2018 at 16:07 | Reason: Not specified

Show Most Thanked Posts

User

Posted 24 Apr 2018 at 22:52

Pallance

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.

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

User

Posted 25 Apr 2018 at 07:37

User

Posted 25 Apr 2018 at 08:31

All the best

Kevan

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

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.

Best wishes, Ian

Ido4

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

User

Posted 25 Apr 2018 at 19:55

Other patients.

Good luck with your treatment.

Mikesmum

User

Posted 26 Apr 2018 at 08:12

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,

Paul

User

Posted 06 May 2018 at 23:49

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

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.

Ido4

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.

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

User

Posted 15 Aug 2018 at 21:02

Well, I had fraction number 7 of 20 today. A third of the way through. It’s not been so bad as I thought so far. I have no urinary issues and no bowel Problems yet, but I suppose I am still in early stage? I define feel a lot more tired, but I’m not sure at all if this is due to the 5 hours on the go from door to door every day. I have followed advice, I shower twice a day, using Dove soap and shower cream, I have some 98% Aloe Vera gel that I apply liberally over the treated areas. My treatment so Fay is IMRT supported by Ultrasound. I get zapped from 6 o’clock under the bed, then 9 o’clock, 11 o’clock, 1 o’clock and finally 3 o’clock, so five in all. This is the same every day. I am now firmly in the routine. I have been able to cycle every day, about an hour and a half, after I get home, which I find therapeutic. The fitness has most definitely had a big impact on my treatment ever since I started on hormone therapy up till now.

User

Posted 16 Aug 2018 at 09:08

reassuring post - thank you and fingers crossed it sorts it out for you..

User

Posted 16 Aug 2018 at 11:41

Hope the remaining fractions go well. You’re well on the way through the 20 so here’s wishing for the side effects to remain low to non existent.

Interesting that you said the IMRT is supported by ultrasound. Is that to check your bladder is filled to the correct level?

I was scanned by the machine using X-rays each day to check position and bladder filling.

All the best,

Ian

Ido4

User

Posted 25 Aug 2018 at 16:42

Fraction 14 of 20 Friday 24th August. Main problem for me is the constant diarrhoea. I’m using melt on the tongue Imodium, it helps a bit.

Tiredness comes and goes, but I still find the daily cycling helps no end, not too long as I need to be fairly close to a loo

When I had mynplanning CT Scan a foot mould was taken and all my other settings.

After 14 fractions I have no discernible skin discolouring or other skin issues

The machine treats me from 6 o’clock 9 o’clock 11 o’clock 1 o’clock and 3 o’clock positions. Then it’s dismount, wipe all the conducting jelly off and quickly visit the loo.

I hope this info helps to prepare people unsure of what to expect.

I attended a pre treatment Open Evening at my centre, this was invaluable

Alan

User

Posted 25 Aug 2018 at 17:06

I'm finding your reports really helpful in knowing what to expect when I have my RT. Thanks for posting them, and I hope things stay relatively bearable. At least you're on the "home straight" now!

Chris

User

Posted 25 Aug 2018 at 20:41

Thank you Alan very helpful

User

Posted 25 Aug 2018 at 20:47

My RT was pretty similar, except that as soon as I developed loose bowels (about halfway through the 20 sessions,) I was told to stop using the mini enemas. Also, no ultrasonic probe was used, the RT machine also did a preliminary X ray.

User

Posted 25 Aug 2018 at 21:26

My best advice is be careful not to drink too early as I saw several instances where men had to abort the therapy and run for a wee! I would get there around 35 minutes early and grab a radiographer and ask if I should start drinking. This was good as several times they said please wait 10, 15, 30 45 minutes! The poor chaps who turned up having had their water would often need to start again. There were people I befriended who sometimes had 3 aborted sessions due to need to pee and were there for 4 hours!

Low fibre diet was advised to aim to reduce bowel issues!
Loose bowels a large problem! Fybogel first try was no good but now I have it every day 10 weeks after treatment.

Edited by member 25 Aug 2018 at 21:28 | Reason: Not specified

User

Posted 25 Aug 2018 at 21:31

Are you still experiencing bowel problems ten weeks after you finished RT, Rich?

Chris

User

Posted 25 Aug 2018 at 22:20

Since I went back on Fibogel 9th August I've been much better. I have never had a catastrophic "hull breach" but close ones! I worked throughout the treatment and I'm normally desk based but I've had to walk round a car production line. I had a few close calls but mostly I had good access to toilets which I absolutely needed!!! I often had 4-8 "visits" a day. Onco said it must be constipation not loose bowels and that seems to have proven true.

Honestly Chris, it doesn't really affect me anymore but I know I need to "be carefull!!!". The radiotherapy staff gave me Loperamide which only seemed to give me stomach pain.

User

Posted 25 Aug 2018 at 22:23

What type of treatment are you having? Have you had your radiotherapy planning session? This is a good time to go through all of this.

User

Posted 25 Aug 2018 at 22:50

I started on 150mg daily bicalutamide a little over a week ago, Rich, with my oncologist saying that the plan is I'll be on it for two years. Plan is to have RT after six months - ie around next Feb/March time. So no RT planning for a while yet, but I'd like to know as much as I can in advance about what to expect, which is why Alan's posts here have been so helpful to me.

Chris

Edited by member 25 Aug 2018 at 22:53 | Reason: Not specified

User

Posted 03 Sep 2018 at 22:59

Well, I get to ring the bell at my Oncology hospital tomorrow!

At the beginning seemed like it was going to take an eternity, but here I am getting fraction 20 tomorrow.

I won’t have much to report from now on, but I have been advised my side effects will continue to possibly get worse for two weeks after treatment completion and then subside slowly

once I am in remission I will be staying put here to help and advise those just starting their journey

Edited by member 03 Sep 2018 at 23:02 | Reason: Spelling again!

User

Posted 04 Sep 2018 at 08:24

Enjoy the bell ringing. There wasn’t a bell to ring at my centre.

I agree, it seems like the sessions will never end and suddenly you are there. I hope the radiotherapy has done a good job.

I found it a wee bit emotional saying goodbye to the staff at and the friends you make in the waiting room.

Time to get your life back.

All the best,

Ian

Ido4

User

Posted 04 Sep 2018 at 16:01

You are of course spot on Ian

it won’t truly sink in till tomorrow, when I won’t have to spend five hours on the go, always on the look out for the next toilet stop!

Edited by member 04 Sep 2018 at 16:07 | Reason: Not specified

User

Posted 04 Sep 2018 at 16:05

It's a good feeling ringing that bell Alan, but as others have said,tinged with a touch of sadness after meeting others who readily offer mutual support. All the best for the future mate.

Paul.

User

Posted 05 Sep 2018 at 08:17

Well done Pallance, you can relax now.

No bell ringing at our centre either, in fact my last session was at Royal Berks rather than my local clinic (maintenance day) so it was a different team and a totally different set of patients so farewells were not really possible - just treated myself to a meal out. Two and a half years ago, time flies, and a great bunch of people I still miss.

Take care and let us hope it has done the trick.

User

Posted 05 Sep 2018 at 09:19

Just to add to these stories of RT ...

i have G9 aggressive locally advanced into S/vesicles, PSA 26. Been on HT since Feb , had the Brachy in June and finished 23 session of RT on 3 Aug.

Had issues after Brachy and had a catheter for 10 days . All ok after removal. RT went smoothly but got the yellow card a few times for not enough water. Southend will do an ultrasound if needed plus a CT scan st every treatment. i have no side effects except just after I was slightly more urgent . Nothing during the treatment. But as you’ve all said the staff were brilliant and my favourite 3 were on on my last day. I took in a big box of home made cookies which went down well.And ringing the bell is emotional.

i think I’ve been lucky and also the set up at Southend helps with state of the art machinery.

from what I hear I was unusual to have the Brachy with G9 and 26 PSA.

so I now await next PSA test and meeting with consultant.

The HT has hit me hard on the mental side but physically not so bad. I have slightly reduced libido and ED . But the HT is working apparently. Been told I mught be able to do 18 months on HT instead of 2 years which will be fantastic .

I suppose I should feel lucky now considering a fairly high Gleason score but I still feel worried about the future as I expect we all do . The HT does not help and I hope to God that soon they will have something better to block the testosterone with . At first on here I didn’t hear much about the HT but I see it more now as people are opening up. I am like a lot on here and have issues from childhood the HT has caused to re-appear which is a painful experience.

im partly glad I didn’t understand what it would do as I might have forgone it and just had the other treatments.

anyway, it certainly shows that every one of us is different.

good luck to those still in treatment or waiting for results . It’s not an easy journey that’s for sure, and I understand harder for some than others.

phil

Notification

Similar Topics

Join the online community now.