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Salvage Radiotherapy - what to expect?

User
Posted 21 Mar 2024 at 10:44

So post RP, my PSA started to rise until this month it hit the magic 0.2 - I was immediately referred to oncology and have my first consultation for salvage radiotherapy next Thursday.

Could anyone who has been through a similar situation give me a blow by blow account of how the whole process works? Things like the procedure, frequency, diet, enemas etc etc.

Thanks - just trying to get a heads up before the meeting :)

User
Posted 21 Mar 2024 at 11:53

Hi Steve,

Not sure how they do radiotherapy in France. I had mine at Mount Vernon on the outskirts of London. 

I was referred back to oncology when my PSA hit 1.2 (I had a positive margin post op). The oncologist recommended 20 fractions without HT. 

I had a planning scan a couple of weeks before treatment started.

Before the scan I had to drink half a litre (I think) of water to fill my bladder. The scanner was like a large doughnut but with green laser light that centred on the table. I had three tattoos, one on each hip and the other just above my groin, this is used to align you into the correct position for treatment. 

After being scanned, I  was given a list of appointment dates and times before being sent on my way (with my own free plastic water bottle).

Procedure in 2022 was still centred around covid, so on arrival I had to phone from the car park and wait for a  return call instructing me to take on water. Around 15 minutes later I was asked to come in to my treatment room, there are several at Mount Vernon. 

The room is large and equipped with a linac machine. Truebeam by Varyan medical systems according to the selfie I took with it. It looks a bit like a cuddly robot at the head of the table. There are plenty of pictures and video on the Internet. 

Basically you lay on what looks like a kitchen worktop, the radiographers move you around until the laser light crosshairs align with the tattoos. They pull your pants down slightly so they can see the tattoos, but modesty is preserved, unlike the biopsy. 

Once in position, they leave the room and the foot thick door closes. The machine starts to rotate around the table in what I believe is a scan. Sometimes the table will move for more fine adjustment. When the machine delivers the treatment, there's a clunk like machinery operating followed by a loud buzzing noise as the machine rotates around the table for about a minute and a half, there's another clunk as it stops. The door opens and the staff appear, when I'm free to get off the table and put my shorts back on. From entering and leaving the room, it's around ten minutes (with a full bladder).

July 2022 was really hot so I wore shorts and dropped them in the treatment room. Twice I was told off for not getting changed in to a dressing gown first, but it hit 40° on one day.

The treatment was akin to wizardry or witchcraft, you lay there very still while a machine moves around you. I would often wonder if I should have insisted on this as my primary treatment. 

Anyway, as the treatment went on, my bladder would be a little more temperamental, and I would often have to dash to the toilet immediately after treatment. I could no longer trust a fart either, but a few weeks after my 20 fractions had finished, everything was more or less back to normal. 

I had telephone consultations halfway through, and after treatment finished. 

A while later after the post SRT PSA test, I had a face to face meeting with my oncologist who discharged me back to urology. 

19 months later, and I'm back at <0.010 they seem to have changed the PSA testing sensitivity since my surgery as it was <0.03 in 2020.

Good luck Steve, 

Hope this helps. 

Kev.

Edited by member 21 Mar 2024 at 12:02  | Reason: Added note

User
Posted 21 Mar 2024 at 10:44

So post RP, my PSA started to rise until this month it hit the magic 0.2 - I was immediately referred to oncology and have my first consultation for salvage radiotherapy next Thursday.

Could anyone who has been through a similar situation give me a blow by blow account of how the whole process works? Things like the procedure, frequency, diet, enemas etc etc.

Thanks - just trying to get a heads up before the meeting :)

User
Posted 21 Mar 2024 at 20:41

My SRT was very much in line with Kev's except 33 fractions and six months of Bical. No dressing gowns required where I went. Just remove your trousers and lower your underwear just to expose the tattoos. This YouTube video explains how a Linac machine works if you are interested. https://www.youtube.com/watch?v=jSgnWfbEx1A

My appointments were at varying times of the day which can create a challenge in the timing of your bladder filling. The speed of water absorption is very dependent on whether you have a full or empty stomach. I discovered to my cost that it is better to try to keep your stomach at the same level of fill for each appointment. My bowels started to get a bit too volatile towards the end of the treatment so I was told to take Imodium. Hope it all goes well for you.

User
Posted 21 Mar 2024 at 20:49

Mine was EBRT to accompany brachy. almost identical to Kev's experience, except my hospital used empty bladder protocol. No special drinking just have a piss five minutes before due in. After day 2 I shaved my pubes near the tattoo. It didn't seem fair making them stare at my pubes any longer than necessary.

Dave

User
Posted 21 Mar 2024 at 12:42

I had RT as my Primary treatment and it was a breeze. As for diet I would wait until your planning scan where they will tell you about diet. Mine said eat normally as they don’t like to upset your digestive system, but it’s probably a good idea to avoid brocoli and curries on the nights before treatment. No idea how they do it 8n France but my treatment was daily Monday to Friday with the weekend off. Oh, and also on some public holidays.

Good Luck Steve!

Derek

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User
Posted 21 Mar 2024 at 11:53

Hi Steve,

Not sure how they do radiotherapy in France. I had mine at Mount Vernon on the outskirts of London. 

I was referred back to oncology when my PSA hit 1.2 (I had a positive margin post op). The oncologist recommended 20 fractions without HT. 

I had a planning scan a couple of weeks before treatment started.

Before the scan I had to drink half a litre (I think) of water to fill my bladder. The scanner was like a large doughnut but with green laser light that centred on the table. I had three tattoos, one on each hip and the other just above my groin, this is used to align you into the correct position for treatment. 

After being scanned, I  was given a list of appointment dates and times before being sent on my way (with my own free plastic water bottle).

Procedure in 2022 was still centred around covid, so on arrival I had to phone from the car park and wait for a  return call instructing me to take on water. Around 15 minutes later I was asked to come in to my treatment room, there are several at Mount Vernon. 

The room is large and equipped with a linac machine. Truebeam by Varyan medical systems according to the selfie I took with it. It looks a bit like a cuddly robot at the head of the table. There are plenty of pictures and video on the Internet. 

Basically you lay on what looks like a kitchen worktop, the radiographers move you around until the laser light crosshairs align with the tattoos. They pull your pants down slightly so they can see the tattoos, but modesty is preserved, unlike the biopsy. 

Once in position, they leave the room and the foot thick door closes. The machine starts to rotate around the table in what I believe is a scan. Sometimes the table will move for more fine adjustment. When the machine delivers the treatment, there's a clunk like machinery operating followed by a loud buzzing noise as the machine rotates around the table for about a minute and a half, there's another clunk as it stops. The door opens and the staff appear, when I'm free to get off the table and put my shorts back on. From entering and leaving the room, it's around ten minutes (with a full bladder).

July 2022 was really hot so I wore shorts and dropped them in the treatment room. Twice I was told off for not getting changed in to a dressing gown first, but it hit 40° on one day.

The treatment was akin to wizardry or witchcraft, you lay there very still while a machine moves around you. I would often wonder if I should have insisted on this as my primary treatment. 

Anyway, as the treatment went on, my bladder would be a little more temperamental, and I would often have to dash to the toilet immediately after treatment. I could no longer trust a fart either, but a few weeks after my 20 fractions had finished, everything was more or less back to normal. 

I had telephone consultations halfway through, and after treatment finished. 

A while later after the post SRT PSA test, I had a face to face meeting with my oncologist who discharged me back to urology. 

19 months later, and I'm back at <0.010 they seem to have changed the PSA testing sensitivity since my surgery as it was <0.03 in 2020.

Good luck Steve, 

Hope this helps. 

Kev.

Edited by member 21 Mar 2024 at 12:02  | Reason: Added note

User
Posted 21 Mar 2024 at 12:28
That's brilliant - thanks Kev.

I'm assuming it's pretty much the same in France but we will see.

Was there any special diet and how long between treatments?

User
Posted 21 Mar 2024 at 12:42

I had RT as my Primary treatment and it was a breeze. As for diet I would wait until your planning scan where they will tell you about diet. Mine said eat normally as they don’t like to upset your digestive system, but it’s probably a good idea to avoid brocoli and curries on the nights before treatment. No idea how they do it 8n France but my treatment was daily Monday to Friday with the weekend off. Oh, and also on some public holidays.

Good Luck Steve!

Derek

User
Posted 21 Mar 2024 at 20:41

My SRT was very much in line with Kev's except 33 fractions and six months of Bical. No dressing gowns required where I went. Just remove your trousers and lower your underwear just to expose the tattoos. This YouTube video explains how a Linac machine works if you are interested. https://www.youtube.com/watch?v=jSgnWfbEx1A

My appointments were at varying times of the day which can create a challenge in the timing of your bladder filling. The speed of water absorption is very dependent on whether you have a full or empty stomach. I discovered to my cost that it is better to try to keep your stomach at the same level of fill for each appointment. My bowels started to get a bit too volatile towards the end of the treatment so I was told to take Imodium. Hope it all goes well for you.

User
Posted 21 Mar 2024 at 20:49

Mine was EBRT to accompany brachy. almost identical to Kev's experience, except my hospital used empty bladder protocol. No special drinking just have a piss five minutes before due in. After day 2 I shaved my pubes near the tattoo. It didn't seem fair making them stare at my pubes any longer than necessary.

Dave

 
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