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Minor Q: Salvage Radiotherapy - Morning or Afternoon

User
Posted 05 Jun 2020 at 16:07

My story is in my bio, as well as a long conversation in "Worried About Symptoms".

Short version:   PSA 0.092  six weeks after surgery, and then PSA of 0.33 three months later.   Had all the usual scans (bone and CT), plus clinical trial PSMA MET 18F-DCFPyL scan.    No signs of metastasis elsewhere.   

Salvage radiation is recommended, and I will be starting within two weeks (or earlier).

So my minor question, which I'm hoping to get some insights on,  is whether is better to have the treatment in the morning or afternoon.    I will keep working, but with reduced hours of course.  I know fatigue is a common side effect after the first couple of weeks.

 

 

 

User
Posted 05 Jun 2020 at 20:56

From a medical point of view I can't imagine it would make a difference. Personally I am not a morning person and I was not compelled to go to work, so I had afternoon treatment.

I think a disadvantage of appointments later in the day, is that if there is a backlog it gets worse as the day goes on. So don't be surprised if you find yourself in the waiting room for longer later in the day.

How far do you have to travel? What time of day is the traffic best? I didn't have fatigue problems or continence problems I can't think that either would be affected by treatment time. 

Dave

User
Posted 05 Jun 2020 at 21:06

I chose lunch time, based on least traffic on M25. Maybe not quite such a consideration at the moment. I also said I wasn't time critical, so my appointments moved between about 11am and 2pm on different days (usually nearer 11am). I found if I got in much earlier, I would usually get seen much earlier, filling in someone who was late, who would then get my slot. Useful if I had something like a midday gym class which I would then get back for, but didn't always work. I never minded chatting with other patients though - the RT waiting room conversations are some of the most memorable of my life - men, women, including some terminal patients all sharing personal experiences which just wouldn't happen anywhere else. (May be different at the moment with COVID distancing.)

Also, that time meant I often skipped lunch, which was good for keeping my weight constant, which is something you want to try and do from your planning scan through to your last RT session.

By the way, I didn't get fatigue during RT, but I think that comes from being a cyclist. I did have an 8% drop in hemoglobin, but I started at a high level, and an 8% drop didn't take me below normal. People who were more sedentary probably got more hit with fatigue, although that may be an over generalisation.

By the way, you should be working on your pelvic floor exercises now, and all the way through treatment. Pretty sure that's all that kept me continent towards the end.

Edited by member 05 Jun 2020 at 21:12  | Reason: Not specified

User
Posted 05 Jun 2020 at 21:53
John had the 8.30am slot on his way to work each morning and didn't need to go part time. In fact, he continued with the gym every evening and playing rugby - just a couple of times towards the end, he needed a power nap at his desk in the afternoon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jun 2020 at 22:19
Ditto above (Lyns reply). RT first thing then straight into work afterwards

Bri

User
Posted 05 Jun 2020 at 22:52

J

My appointments were a bit varied but mostly around 1800. I  certainly didn't have fatigue and don't recall any tiredness. I had retired from work by the time I had SRT. Worth noting, I did not have HT in conjunction with the SRT.

Thanks Chris

User
Posted 06 Jun 2020 at 09:20

J

Something to bear in mind is the preparation for the session. Some but not all hospitals require men to have a mini enema before treatment. It was easy for me  because I could do it  at home before going to the hospital.

I also had three appointments with the onco nurse or doctor, which then adds time onto the visit, especially if the Doc is running late.

 

Thanks Chris

 

Edited by member 06 Jun 2020 at 09:21  | Reason: Duplicate word

User
Posted 11 Jun 2020 at 23:23

I'm glad all the scans came back negative. Where I was treated it is an empty bladder protocol. I'm sure there are reasons for each protocol, but for a patient it is so much easier, drink and piss as much as you want, just make sure you empty your bladder five minutes before treatment. 

Dave

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User
Posted 05 Jun 2020 at 20:56

From a medical point of view I can't imagine it would make a difference. Personally I am not a morning person and I was not compelled to go to work, so I had afternoon treatment.

I think a disadvantage of appointments later in the day, is that if there is a backlog it gets worse as the day goes on. So don't be surprised if you find yourself in the waiting room for longer later in the day.

How far do you have to travel? What time of day is the traffic best? I didn't have fatigue problems or continence problems I can't think that either would be affected by treatment time. 

Dave

User
Posted 05 Jun 2020 at 21:06

I chose lunch time, based on least traffic on M25. Maybe not quite such a consideration at the moment. I also said I wasn't time critical, so my appointments moved between about 11am and 2pm on different days (usually nearer 11am). I found if I got in much earlier, I would usually get seen much earlier, filling in someone who was late, who would then get my slot. Useful if I had something like a midday gym class which I would then get back for, but didn't always work. I never minded chatting with other patients though - the RT waiting room conversations are some of the most memorable of my life - men, women, including some terminal patients all sharing personal experiences which just wouldn't happen anywhere else. (May be different at the moment with COVID distancing.)

Also, that time meant I often skipped lunch, which was good for keeping my weight constant, which is something you want to try and do from your planning scan through to your last RT session.

By the way, I didn't get fatigue during RT, but I think that comes from being a cyclist. I did have an 8% drop in hemoglobin, but I started at a high level, and an 8% drop didn't take me below normal. People who were more sedentary probably got more hit with fatigue, although that may be an over generalisation.

By the way, you should be working on your pelvic floor exercises now, and all the way through treatment. Pretty sure that's all that kept me continent towards the end.

Edited by member 05 Jun 2020 at 21:12  | Reason: Not specified

User
Posted 05 Jun 2020 at 21:53
John had the 8.30am slot on his way to work each morning and didn't need to go part time. In fact, he continued with the gym every evening and playing rugby - just a couple of times towards the end, he needed a power nap at his desk in the afternoon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jun 2020 at 22:19
Ditto above (Lyns reply). RT first thing then straight into work afterwards

Bri

User
Posted 05 Jun 2020 at 22:52

J

My appointments were a bit varied but mostly around 1800. I  certainly didn't have fatigue and don't recall any tiredness. I had retired from work by the time I had SRT. Worth noting, I did not have HT in conjunction with the SRT.

Thanks Chris

User
Posted 06 Jun 2020 at 04:39
Thanks for replies. Good to know most did not experience fatigue. I am in relatively good physical condition, as I went to the gym frequently for everything from strength training, to yoga, to high intensity interval training. But with surgery in Dec 2019, then COVID19, and now radiation, my exercise routine has dropped. And of course gyms are still closed due to COVID (plus my gym is close to work, and we likely will be working from home until fall). Looking into setting up a home gym but most equipment is on back order due to high demand -- mostly need strength equipment (power rack and barbell/weight set).

I have a fairly high stress job, where "regular" expected hours is more than "standard". So I will ask for reduced hours, not only due to need for daily appointments, but also so the expectation is set with my employer that health comes first, and I will need a reduced work load.

I think I may ask for afternoon sessions, as it's easier to set expectation that I need to stop work at a certain time to go to my appointment, and then I wouldn't check e-mails or work again for the remainder of the day.

User
Posted 06 Jun 2020 at 09:20

J

Something to bear in mind is the preparation for the session. Some but not all hospitals require men to have a mini enema before treatment. It was easy for me  because I could do it  at home before going to the hospital.

I also had three appointments with the onco nurse or doctor, which then adds time onto the visit, especially if the Doc is running late.

 

Thanks Chris

 

Edited by member 06 Jun 2020 at 09:21  | Reason: Duplicate word

User
Posted 11 Jun 2020 at 22:24
Just a quick update for everyone. Again thanks for sharing your experiences.

So I start my treatment on Tuesday! Extremely quick as I was in the system before COVID19 slowed inflow of new patients and lead to cancellation of many procedures and tests. I only had my higher PSA result at the end of April, and will be starting radiation treatment within 1.5 months.

Since then I've had Bone Scan, CT Scan, Ultrasound (to double check a lesion in one kidney unrelated to prostate), and clinical trial for the latest PSMA PET 18F-DCFPyL scan -- all negative. Had my planning CT scan and tattoos on Tuesday, and starting treatment next week.

I'm pretty regular with my bowel movements, so no mini enema required. They told me I'm well hydrated as my bladder was too full for the planning scan after drinking the required amount of water, so they did two takes of the planning CT scan, the second one after I let some urine out to get the bladder to a more comfortable size. They suggest I drink a little closer to the appointment time to be more comfortable.

Unlucky to have PC, and that surgery alone is not sufficient. But feel fortunate to be getting top care very quickly. .

User
Posted 11 Jun 2020 at 23:23

I'm glad all the scans came back negative. Where I was treated it is an empty bladder protocol. I'm sure there are reasons for each protocol, but for a patient it is so much easier, drink and piss as much as you want, just make sure you empty your bladder five minutes before treatment. 

Dave

User
Posted 17 Jun 2020 at 14:50

Had my first salvage radiation session yesterday.  

Dave's post made me curious about full bladder vs empty bladder,  so I asked the radiation therapist why they want full bladder.  She said a full bladder pushes the small intestine further away from the prostate bed.  

When I got home,  did some internet searches and it seems three possible protocols are:

(1)  Full bladder with exact instructions on how much you drink and when.  Can take more time if bladder too full, or not full enough.

(2)  Comfortably full bladder (less precise instructions).

(3)  Empty bladder (as Dave said easy for patient, and staff as well).

Some studies suggests there is no statistically significant difference in results.    Other studies prefer the exact protocol.    

 

User
Posted 17 Jun 2020 at 16:23
For me it was a measured amount thing. Empty my bladder 20m before treatment and then quickly drink 3 cups of water so there was a (hopefully) standard amount in the bladder during treatment.

I've never heard of anyone having RT with an empty bladder before - I wonder if it's only a protocol used for salvage RT? In primary RT the whole idea is to lift the bladder away from the prostate, so the bladder's radiation dose is minimised.

Best of luck for the rest of your treatment,

Chris

User
Posted 17 Jun 2020 at 16:47

Hi, I was treated at Christie's in Manchester. HDR Brachy followed a week later by 37.5 Gy in 15 sessions of EBRT, so it was primary RT.

I am fairly certain that everyone at Christie's had the empty bladder protocol. The treatment machines was a VersaHD. after lying on table and getting tattoos lined up they usually did an imaging scan (everytime in first week less so in latter weeks) before treatment. Maybe the imaging and reasonably modern machine means that the radiation can be targeted sufficiently accurately that the lifting of prostate from bladder/intestine is not too important compared to being able to get the patients in and out fast with little messing around.

Perhaps the fact the EBRT was only about half the regular dose for EBRT alone made protecting other organs less critical.

Dave

User
Posted 17 Jun 2020 at 19:35
This is the article that I found that concludes there is no significant difference in full vs empty bladder protocols (it is a little old).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5722405/

Seem like full bladder is more common. .

User
Posted 17 Jun 2020 at 21:16

At Mount Vernon, around 80-90% of us had to full bladders and the rest empty bladders. Empty bladder scrunches up near the prostate, whereas full bladder tends to push most of the bladder away and push small intestine further away. I guess it depended on the treatment pattern, and maybe if the seminal vesicles were being treated too. It was explained at the teach-in beforehand that different people need different protocols. I wish I'd asked about the difference at the time, because I've been asked about it several times since then.

User
Posted 30 Jun 2020 at 21:27

Just finished week two of my salvage radiation treatment. Once per week, I meet with one of the doctors on the oncology team -- first week was a resident, and this week it was the senior oncologist. So I being curious, I asked them about full bladder vs empty bladder and the different experiences from Dave and Andy. The senior oncologist gave the fullest answer:

* Both said the main advantage of empty bladder is ease, and consistency. It's easy to have consistent positioning of internals with bladder is always empty.

* The senior oncologist said the physicist at the hospital worked with the manufacturers in designing the machines, and he is very keen on full bladder to push the bladder and small intestine as far away as possible.

* At my center, they image, look at images, and then adjust before treatment for every session, so variations in bladder fullness can be taken into account.

* the senior oncologist was aware that protocols may be different elsewhere (as he has heard from foreign doctors who trained here). He says some centers may prefer empty bladder protocol for ease, and because they may not scan every time, or look at the pictures before every session. I asked why some centers may use full bladder for most, and empty for some (what Andy saw), and he said that the ones using empty bladder may have trouble achieving consistency with full bladder, so they choose empty bladder for these patients to ensure consistency.

For comparison the protocol at my center (Princess Margaret -- top cancer center in Canada) is as follows:

1. You are given a barcode scanner, and you simply scan in when you arrive, so staff know you are there.

2. You have instructions on how much to drink. I'm very well hydrated, so if I drink one hour before, my bladder is too full. So I'm drinking 20-25 minutes before.

3. First thing in the session is the two radiation technicians adjust your body to line-up the three tattoos.

4. Next, the machine does an imaging scan to see where everything is positioned internally.

5. The technicians look at the pictures, and input information into the computer.

6. The machine then make very small micro adjustments to the platform you are on to get the position just right based on how you are looking at the time.

7. Then the radiation is give (maybe one minute total time).

Very precise, but can cause delays and scheduling issues. Once I was taken into my appointment early because the fellow ahead of me (it was just his 2nd session) was too full and went to washroom and let out too much. So he had to drink again and wait. Another time, the person ahead of me was late, so they took me early as they knew I tend to be very well hydrated and could go early. But full bladder can cause delays due to things like that.

User
Posted 01 Jul 2020 at 01:14

Janus, thanks very much for asking, and the reply makes perfect sense.

Mount Vernon do the precise positioning every treatment too. They insert gold markers for patients having just external beam radiotherapy, which are lined up using a pair of X-rays. However, they do a lot of combined EBRT and HDR Brachytherapy, and if you're having HDR, you can't have the gold markers (they get in the way). In that case, the precise alignment is done using a Cone Beam CT scan (CBCT) instead of the X-rays. That takes longer and they can't treat as many people per hour on the LINACs when they need CBCT scans each time.

I had HDR too, so I had the CBCT scans, and not the gold markers.

The barcode scanner is part of the Varian patient management system which lots of hospitals use. Same at Mount Vernon, and it tells you which of their 9 LINACs you will be on that day. The drinking protocol was you were told to start drinking about 30-40 before they thought you'd go in. For prostate cancer patients, it was a litre. You let them know exactly what time you finish drinking. I would go for a pee first so I had a known starting point. You were supposed to have at least 300ml in your bladder. On one occasion, I was told to go out and have a fart and come back again - not easy when you have a full bladder you are trying not to lose, and no sense of needing to fart, but somehow I managed it.

We had a stage 3a in your scheme - adjust the table offset from the tattoos same as was necessary for yesterday's treatment. Treatment took 2 mins - two complete revolutions of the LINAC head, 1 minute each. (This is not to be confused with the CBCT scan beforehand, which took another revolution of the LINAC head.) This was for a 2Gy dose. Some people had 3Gy doses - don't know if they got 3 complete revolutions, or if the beam ran at a higher power.

User
Posted 02 Aug 2020 at 19:12
Just finished my last salvage radiation session on Friday. In my final session, my position was perfect and no adjustments by the computer -- guess I had lots of practice and got it just right in my last session (#33).

I will be seeing my surgeon again in one month. The oncologist says I might as well do a PSA test prior to the meeting, but one month is a little early for the first PSA test after salvage radiation is complete (PSA could be higher or lower than last reading, so don't worry if it's actually higher at one month). The oncologist felt based on my situation, the odds were good that salvage radiation would be enough. Keeping my figures crossed.

 
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