I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

External Beam Therapy

Email this conversation Print this conversation
User
Posted 31 Jul 2015 at 16:51
Following on from my last post.

Well, finally seen the Oncologist, and had a very long discussion of the different treatments available, and I feel the best options for me are either to start Active Surveylance, or to start External Beam Therapy.

I know the pressures of AS and waiting for the cancer to change. So wonder wether to start External Beam Therapy.

Does anyone have any experience of EBT to share

Thanks Colin

User
Posted 31 Jul 2015 at 23:50

Hi Colin,

EBRT is the longest primary treatment because it is usually given in daily sessions (called fractions) of 19 to 37 depending on the dose administered. So it requires regular attendance over this period to be most effective. Just as when you have a single X-ray and feel nothing, you feel nothing when the linac dispenses controlled X-rays from different angles in a pattern that is specifically tailored for an individual. Most men tolerate this very well though a small number have an adverse reaction to the radiation and a very few stop having it at some point because they are severely affected. Some hospitals want the patient to have the treatment with a bladder with so much urine +- in it. Often a patient having RT will also be having Hormone Therapy where there is more potential for side effects. Some oncologists want the patient having RT to continue with HT for anything up to 3 years after RT so you could ask how long you would be on HT for if you went down this route.

As you have said elsewhere, once you have had RT, surgery after that is very difficult and indeed many surgeons won't attempt it, whereas RT can be given after surgery and often is.

Some men defer the potential side effects of active treatment by AS but this does require regular monitoring so action can be taken as soon as it is deemed advisable. You don't want to miss the best chance of beating developing cancer! This is a personal decision you should decide on having discussed it with your Consultant.

Barry
User
Posted 01 Aug 2015 at 14:59
Hi Colin

I started having hormone therapy in Jan 2013, followed by a TURP op in the June and started 37 sessions of Radiotherapy in the October. Fairly simple procedure, scan first to set where to 'aim' the x-Rays. 3 tiny dots tattooed for the target. Had to empty my bowels each day, and when at the hospital drink a bottle of water about 45 minutes or so before the treatment. The radiotherapy team were very good and would come out and tell us when to drink. Just had to lay still on a table while the machine did it's stuff - above me and to each side which took about 2 minutes total. Had a little soreness at the rear but easily treated with aqueous cream. Still on HT and seeing oncologist every 6 months.

Arthur

User
Posted 29 Oct 2015 at 19:54

Thanks Chris

When your in the waiting rooms you meet some very interesting people, and makes you realise that you're not the only one.

Good luck with yours in January

Colin

User
Posted 13 Jan 2016 at 22:13

Hi Pete48
Read Daily Mail 12/1/16, "High-Dose prostate therapy that halves trips to hospital" by OONA MASHTA
I have just read this in yesterdays Mail I wish I could have got on it, apart from the less time factor the side effects are possibly less ,an interesting read.
Cheers
Alan

KEEP POSITIVE and CARRY ON

User
Posted 17 Jan 2016 at 13:48

John had the 20 sessions. There are some things to take into account -
- the trial was partly looking at how high a dose can be safely given
- where the tipping point is between effective treatment and increased risk of side effects.

So the common regime is 37 fractions of 2Gy = 74Gy. Men on the trial had 19 or 20 fractions at anything from 2.4Gy to 3.4Gy

John had 20 sessions at 3.3Gy = 66Gy .... Radiotherapy is cumulative so the 66Gy delivered in bigger slices has the same strength as the 74Gy. John sailed through the treatment, worked throughout, went to the gym every day and continued with his rugby - needed an afternoon nap on his desk sometimes though. When he was put on the trial, they were only selecting younger fit blokes for the higher doses, so it will be interesting to see what dose is suggested for Pete now the trial is completed

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

User
Posted 18 Jan 2016 at 08:26

Well I am scheduled to start 20 session RT on Thursday. Not young (66) but all the consultants agree that apart from the PC I am in good health and I get my daily exercise of a 30min walk every day (something I will have to reschedule when the course starts). I was led to believe that here (Royal Berks, Reading) it is now the norm to give 20 session courses and it would be the exception to be moved to 37.

Edited by member 18 Jan 2016 at 10:58  | Reason: Not specified

User
Posted 18 Jan 2016 at 11:25

H Pete48

Good luck with everything ,I was on Bicultamide for 30 days prior to starting Zoladex, I'm sure you will be fine. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Regards

Alan

 

KEEP POSITIVE and CARRY ON  

User
Posted 18 Jan 2016 at 12:05

Hi Pete
I've been on 150mg Bical for 4 months now. It actually hit me hard for 2 weeks but I'm ok now. My 33 RT due to start in April. I've been told with my figures that it's not likely to be curative, so I have just had a long chat with Onco secretary to ask if I can have 20 instead. Waiting to hear back. I'm not looking forward to it at all tbh especially if not curative , so the less sessions the better.
Very best wishes to you
Chris

User
Posted 18 Jan 2016 at 19:41

I was asked towards the end of 2007 when I was 71 whether I wished to take part in the CHHiP trial with randomized selection into the 37 fraction standard, 19 or 20 hypofractionated arms. So suitable 'old timers' were eligible even back then.

I asked if I was drawn into the 37 fraction arm if I could have the 20 higher dose fractions outside the study but was told no. I asked if I was drawn into the 19 fraction arm whether I could withdraw and have the standard 37 fractions instead and was told yes. As a further variation, I asked whether I could have an additional 2 fractions each of 2gy added to the 37 fractions. (This was on the basis that slightly better cure rates have been obtained with higher doses albeit with increased risk of more severe side effects). The Marsden would not agree to this - no doubt due to NICE guidance.

Hope treatment goes well.

Barry
Show Most Thanked Posts
User
Posted 31 Jul 2015 at 23:50

Hi Colin,

EBRT is the longest primary treatment because it is usually given in daily sessions (called fractions) of 19 to 37 depending on the dose administered. So it requires regular attendance over this period to be most effective. Just as when you have a single X-ray and feel nothing, you feel nothing when the linac dispenses controlled X-rays from different angles in a pattern that is specifically tailored for an individual. Most men tolerate this very well though a small number have an adverse reaction to the radiation and a very few stop having it at some point because they are severely affected. Some hospitals want the patient to have the treatment with a bladder with so much urine +- in it. Often a patient having RT will also be having Hormone Therapy where there is more potential for side effects. Some oncologists want the patient having RT to continue with HT for anything up to 3 years after RT so you could ask how long you would be on HT for if you went down this route.

As you have said elsewhere, once you have had RT, surgery after that is very difficult and indeed many surgeons won't attempt it, whereas RT can be given after surgery and often is.

Some men defer the potential side effects of active treatment by AS but this does require regular monitoring so action can be taken as soon as it is deemed advisable. You don't want to miss the best chance of beating developing cancer! This is a personal decision you should decide on having discussed it with your Consultant.

Barry
User
Posted 01 Aug 2015 at 14:59
Hi Colin

I started having hormone therapy in Jan 2013, followed by a TURP op in the June and started 37 sessions of Radiotherapy in the October. Fairly simple procedure, scan first to set where to 'aim' the x-Rays. 3 tiny dots tattooed for the target. Had to empty my bowels each day, and when at the hospital drink a bottle of water about 45 minutes or so before the treatment. The radiotherapy team were very good and would come out and tell us when to drink. Just had to lay still on a table while the machine did it's stuff - above me and to each side which took about 2 minutes total. Had a little soreness at the rear but easily treated with aqueous cream. Still on HT and seeing oncologist every 6 months.

Arthur

User
Posted 01 Aug 2015 at 15:10

Thanks Barry and Arthur for your info on EBRT. I was also offered Brachytherapy but decided against it in favour of RT.

Who knows what is the right way.

Having another PSA check on Monday, if it's risen I think it's will be decision made.

Thanks Colin

User
Posted 01 Aug 2015 at 19:36

Colin,

Brachytherapy is just another way of dispensing RT. There are two kinds of Brachytherapy, high dose where radioactive rods are inserted for a time during an operation and low dose where radioactive seeds are implanted during an operation but remain in position dispensing low radiation for a couple of years or so. Both of these forms of radiation can where the oncologist considers appropriate, be augmented by External Beam. Not every hospital can offer Brachtherapy and for some it might not be very suitable. Nevertheless it's always worth getting the opinion of your consultant on this. HIFU is yet another possibility but not yet widely available. In need it can be repeated whereas usually if you have a full dose of RT it can't be repeated other than on a small scale in certain situations.

Edited by member 01 Aug 2015 at 19:42  | Reason: Not specified

Barry
User
Posted 01 Aug 2015 at 20:03

Barry

Ive only been offered EBRT and Brachytherapy. If I have to choose between the two I have to say that EBRT is the cure that would suit me. I don't mind the daily session, all be it difficult with the daily 100 mile round trip. I'm led to believe a hospital car picks up 2 or 3 for the daily commute. The other is not having a catheter to consider. Hopefully at the end of the treatment I should be cancer free. ??

Thanks Colin

User
Posted 01 Aug 2015 at 22:46
Colin

I went in a car every day with a few others and it worked quite well, we had the same driver most of the time and he picked me up at 7am which was good as we got in the queue early. The discharge lounge would phone him when we were all ready to go back home. We generally had a laugh travelling together. When some completed their treatment others joined us.

Arthur

User
Posted 29 Sep 2015 at 15:20

Well it's been a while since I've been here.

My PSA was 7.4 and diagnosed T2c both sides. It's been a long time decision making and finally opted for EBRT. I've had the markers placed and the tattoos done, and my first appointment of 37 starts tomorrow finishing on the 19th November. Suddenly the thought of prostate cancer being eliminated is great, but seems to be a long a long way off yet. I'm travelling 106 miles to and from Oxford every day.

Anyway my bags are packed and I'm ready to go.

I would like to thank this forum for the support and advice along the way, and wish everyone all the best.

Colin

User
Posted 29 Sep 2015 at 16:46

Hi Colin
I'm so pleased you've made your mind up and are confident . I hope sincerely it is a cure for you that involves minimal side-effects . I'm due to start EBRT in the New Year after an unsuccessful Radical Prostatectomy . I don't envy you the journey though . Just one journey from Southampton to Oxford was enough for me. At least I will only have a 20 minute journey each way every day , which hopefully I can do alone .
All the very best for tomorrow
Chris

User
Posted 29 Sep 2015 at 17:31

Good Luck Colin,
Hope all goes well for you and that side effects are kept to a minimum.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Sep 2015 at 17:45

Thanks Chris & Sanda,

fingers crossed for mild side effects.

Hope all goes well in the new year for you Chris. I'll be following your posts.

Cheers Colin

User
Posted 29 Sep 2015 at 18:01

Hi Colin
This is my journey following EBRT.Diagnosed Feb 14 2014 following biopsy on Feb 4th.
Results Gleeson (4+3 = 7). 11 of 12 samples positive. 80% of prostate involved. Stage T2/c Original PSA 4.98. Underwent 37 RT sessions May- July. PSA Sept 0.25. PSA Dec 0.34. PSA March 2015 0.89. PSA June 0.31. PSA Sept 0.39. I think these results are ok. My last HT was in June 2014. Only minimal side effects to date.
Good luck hope all goes well with your treatment

User
Posted 29 Sep 2015 at 18:48

Hi bellaire,

Pleased all is well with you, hoping mine goes the same. I'm looking forward to the new year now already.

Cheers Colin

User
Posted 29 Sep 2015 at 20:02

Hi Colin,

One thing worth considering, if you suffer bowel problems as the treatment progesses, is a low fibre diet.

I found that initially I was OK so far as side effects were concerned, but after the first two weeks of EBRT I started to get bowel issues.

These continued and peaked about 2 weeks after treatment was complete.

The advice of my hospital was a to cut out all fresh fruit, dried fruit, green veg, beans, fried food etc and survive on a fairly bland diet of boiled white rice/pasta/potatoes, white bread (nothing brown or wholemeal), chicken and fish.

They even had a diet sheet which was rather counterintuitive, forget 'healthy eating' the only things they recommended having 5 of each day was Jaffa Cakes!

Of course after about a month things settle down and you can resume healthy eating, I celebrated with a red bean and spinnach curry, which is guaranteed to get things moving!

:)

Dave

User
Posted 29 Sep 2015 at 20:24

Thanks Dave

Looking for all advice on diet thanks. Ill pass this onto Barbara my other half.

Thanks again Colin

User
Posted 29 Sep 2015 at 20:45

Hi Colin,

The very best of luck for your radiotherapy, mine seems to have worked well, so far.

When I had mine last October I did write a daily account of how it went.  Might be worth you checking it out if you're interested.

 "My Radical Radiotherapy Starts Today!"        

Steve

Edited by member 29 Sep 2015 at 20:51  | Reason: Not specified

User
Posted 29 Sep 2015 at 20:51

Hi Steve

Pleased the RT worked for you.

I have actually read your journey. I've spent a lot of time reading and not posting. I really must try in the future.

Cheers Colin

User
Posted 30 Sep 2015 at 03:18
Hi Colin,

I'm pleased you had chance to read my account of my RT experience. I hope it helped.

I was really glad to start the treatment because at last something seemed to be happening after several months of waiting. The daily routine will become part of your life for the next couple of months. It will be soon over and you can look forward to the new year knowing that the cancer cells have been well and truly zapped.

I wish you well today and in the coming weeks. Let us know how it goes.

Steve

User
Posted 30 Sep 2015 at 12:29

Thanks Steve,

Well that's the first one done, only 36 more to do.

Colin

User
Posted 30 Sep 2015 at 19:50
Hi Colin

My hubby has had 18 / 25 sessions of RT, luckily the hospital and his work are both in Central London so he only has a journey if he's having a day off from work.

Steve's right, 25 sessions (5 weeks) seemed a very long time 3 weeks ago but now we're looking forward to the final session Friday week!

Good luck with your RT.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 01 Oct 2015 at 16:03

Thanks Maureen

I sat in the hospital car park today and ticked my second visit off only another 35 to go. It would be OK if I didn't have the 100 mile commute each day. Then I look around the waiting room realising I'm perhaps the lucky one.

Colin

User
Posted 01 Oct 2015 at 18:12
The first couple of weeks go slowly, but after you get half way it will fly by.

All the best.

Alison

User
Posted 01 Oct 2015 at 19:40

your'e right Alison, as each day goes a little piece os PC is exterminated.

Colin

User
Posted 29 Oct 2015 at 19:19

Been a while since I've been here, so just a quick update.

I've now completed 22 radiotherapy sessions. Travelling the 100 miles return journey a day, plus the radiotherapy treatment is very tiring. I am struggling with tiredness in the afternoons. Peeing has its problems with reduced flow and starting and stopping, and getting up 4 times in the night. With the daily enemas you don't go naturally anymore, (only at weekends).

All in all, it's not too bad. The care of the staff are excellent. Always checking that your ok.

Only 15 more sessions to go.

User
Posted 29 Oct 2015 at 19:28

Hi Colin,

You're doing really well.  You deserve a good rest once you finish the last session.

Keep going, it will soon be over.

Good Luck.

Steve

User
Posted 29 Oct 2015 at 19:37

Thanks Steve

I'm looking forward to getting up at my normal time and not 5am. Ahhh bliss.

Colin

User
Posted 29 Oct 2015 at 19:37

I have such respect for you friend and best wishes. What a big journey each day heh ! I have 33 sessions at end Jan but at least a 20 min journey each way so I'm lucky maybe. I hope your symptoms remain manageable


ChrisEdited by member 29 Oct 2015 at 19:47  | Reason: Not specified

User
Posted 29 Oct 2015 at 19:54

Thanks Chris

When your in the waiting rooms you meet some very interesting people, and makes you realise that you're not the only one.

Good luck with yours in January

Colin

User
Posted 29 Oct 2015 at 20:10

I guess I'll have to stop wearing jeans , trainers, t-shirts , hoodies etc , and act / look a little older than 48 !

User
Posted 29 Oct 2015 at 20:26

You wear what you feel comfortable in, as long as you can remove your trainers and jeans quickly that's fine. As for age, if anyone asks tell them you're 63.

User
Posted 29 Oct 2015 at 20:31

I'm beginning to look 63 :-((

User
Posted 29 Oct 2015 at 20:34

You're only as old as you feel, with lack of sleep I feel 83.

User
Posted 30 Oct 2015 at 01:10

A few weeks after RT had ended my 'frequency' returned to post RT levels - fewer getting up times at night = less feeling tired.

Barry
User
Posted 30 Oct 2015 at 11:14

Hi Barry

Can't wait.

Colin

User
Posted 30 Oct 2015 at 19:44

Hi,my husband and I saw surgeon today, we saw urologist 2 weeks ago for biopsy result,then after talking with him felt da vinci surgery was best choice. Today felt we back to square one,he really made it sound like a bad choice for us,main theme seemed to be that at 71 years side effects of incontinence and ed were going to take long while to get over,up to 3 years at worst. We came out feeling as if our minds were spinning,he delivered the information so quickly. Now waiting to see oncologist about radiotherapy and HTTPS. Tired out!!! Any thoughts?

User
Posted 31 Oct 2015 at 08:04

Hi sofijoan

The treatment for PC is a difficult decision for anyone. My decision for RT took a long time to come to terms with, I really didn't want the operation.

Have you ordered the toolkit from this site. You will find a lot of information on all treatment options.

If you start a new thread you will get more replies and help.

Colin

Edited by member 31 Oct 2015 at 08:05  | Reason: Not specified

User
Posted 11 Jan 2016 at 19:19

Well it's been a long time since I posted here, so I thought I would give a quick update.

Finished treatment on the 19th November. What a relief. Looked forward to a couple of extra hours in bed in the mornings. I had to cope with a few after effects ie:- radiation Proctitis, tiredness and a very sore rear probably due to 37 emema's. These problems are still ongoing.

Anyway, I had my follow up appointment today and good news. My PSA has gone down to 2.6 and the Oncologist is pleased with the readings and wants to see me again in 6 months.

I'm happy with my decision to go with Radiotherapy.

User
Posted 11 Jan 2016 at 19:29

Down is a good direction !!

Glad you are happy with your choice and that it appears to be working or you.

37 enemas Yikes!!! Have you been prescribed any cream to help with the soreness ?

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 11 Jan 2016 at 19:39

Hello Sandra

I was prescribed some cream by my local GP. I stopped using it after 10 days as instructed. Unfortunately the problem is returning. The Onco said I must have a very sensitive skin and to stop using the cream and see how it goes ???

Colin

User
Posted 11 Jan 2016 at 19:58

Hi Colin,

Good the PSA is falling and it should continue to fall over the next 12 months as the effects of the RT continue to work.  My PSA was 1.6 following radiotherapy in November 2014 and has now gone down to 0.027 when last tested (before Christmas).

Hopefully, your side effects will reduce as time goes by.

Steve

User
Posted 11 Jan 2016 at 20:01
Hi Colin

Great news you've finished the RT, appointment in 6 months is good news also.

Where I had my RT they recommended aqueous cream for any soreness

Best wishes,

Arthur

User
Posted 11 Jan 2016 at 20:08

Well done Colin
Best wishes on recovery.
Chris

User
Posted 11 Jan 2016 at 20:35

Thank you all for your best wishes.

Arthur you mention the aqueous cream, I did buy a tube but the radiotherapy nurses told me it is not on their recommend list any longer. Due to a irritant ingredient ???

Colin

User
Posted 11 Jan 2016 at 22:18

Originally Posted by: Online Community Member

Hello Sandra

I was prescribed some cream by my local GP. I stopped using it after 10 days as instructed. Unfortunately the problem is returning. The Onco said I must have a very sensitive skin and to stop using the cream and see how it goes ???

Colin

 

What was the cream Colin? 

Could you ask them about Nappy Cream (Drapalene or something. Sensitive enough for babies' bums anyway)

Edited by member 11 Jan 2016 at 22:19  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Jan 2016 at 23:58

I experienced some slight soreness during some of the time when I had my RT. I was prescribed Bepanthen ointment which is a very mild baby ointment mainly used for nappy rash. I was told to use it sparingly and dab it on using some tissue paper - worked for me.

Barry
User
Posted 12 Jan 2016 at 08:30

Sandra, the prescribed cream given to me was Daktacort Hydrocortisone Cream to be used twice a day and to use Sudacrem in between. The use of these was a great relief.

Barry, the Sudacrem is used for nappy rash etc so much the same as you used. I will still use this as required.

User
Posted 12 Jan 2016 at 15:29

Hi Colin
I bet your glad its finished, great result with the PSA down , my first check had come down to 0.30 just had second after 6 months and down again to 0.13. The R/T is OK I found the tiredness was the worst and the sore behind they gave me Proctosedyl Ointment which worked fine, you will soon be back to normal I'm sure.
All the best

Alan

KEEP POSITIVE and CARRY ON

User
Posted 12 Jan 2016 at 16:09

Thanks Alan

I'm hoping my PSA is low enough, but we'll see what it comes down to in 6 months time. We're you on HT.

All the best

Colin

User
Posted 12 Jan 2016 at 19:55

Hi Colin
Yes I was but only for 6 months, Zoladex implants I still get the hots but not as bad now. After I had my 2nd PSA check last December I think I'm a bit more relaxed for the first time in 18 months , so much so, I'm a retired plumber and am thinking of fitting a new bathroom suite at home so I must be better or mad at my age (73).
My Oncologist & specialist nurses are great and very reassuring which helps a lot , so I'm going for it .
I've found everybody on this site very helpful and understanding and you need reassurance from people who understand.

KEEP POSITIVE and CARRY
Cheers
Alan

User
Posted 12 Jan 2016 at 22:39

Daktacort Hydrocortisone ointment is an antifungal usually prescribed where there is a fungi and bacterial infection which can cause inflammation and itching. Daktarin is similar and used largely but not exclusively for athletes foot, although Daktacort can be used for this purpose also. So this is not usually prescribed just to treat soreness caused by RT unless the situation calls for an antifungal preparation..

Barry
 
Forum Jump  
12>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK