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

Notification

Error
12>

External Beam RT and HDR Brachytherapy - my path

User
Posted 04 Jul 2019 at 10:27

Finally start my radical treatment on Monday, almost a year after the PSA test which kicked all this off. This will be 23 sessions of 2gy RT to prostate, and due to being "high risk" (defined as PSA > 20 at diagnosis, or Gleason >= 8, or T3 or greater - I tick two of the three boxes), also precautionary RT to pelvic lymph nodes too. This will be followed by a single session 15gy high dose rate brachytherapy to the prostate.

Just been told quite firmly, no cycling during radiotherapy, and probably not for a couple of months afterwards. This was news to me - I was intending to continue cycling to stay fit if I was able to.

Then, I'm told I must maintain my weight and body composition throughout RT as it was at the CT planning scan. That's going to be a challenge as I currently burn about 4000kCals/week on the bike. I had rather suspected I would not manage to keep up 4000kCals/week with the tiredness RT is expected to cause, but doing none will make a bigger difference. I should have pigged out just before the CT planning scan, but unfortunately, I had a nice low weight and low body fat measurement that day, which hasn't been matched since!

I had a very nice pre-RT call from a radiographer last night, who went through a Hollistic Needs Assessment (HNA) I had filled in for them a week ago. This was a bit different from the Macmillan one I did many months go. It had lots of detailed questions about urinary and bowl habits, and sexual health, and how satisfied you are with them and if you need any help due to the cancer or hormone therapy. Apparently, we will be repeating this HNA during and after RT, to check on how things change. Specifically, there was a section asking if you are currently sexually active. It says they ask this because sexual function will deteriorate if you are not sexually active during treatment, and they will provide additional support in this case. I have visions of ladies of the night arriving courtesy of the NHS, but I suspect this is more likely to be tadalafil and vacuum pumps, but it's really good they are checking up on this. I took the opportunity to ask about cycling, and the guy said they know some people do, but it tends to make side effects significantly worse. Indeed, I should be avoiding any heavy exercise to muscles in the pelvic region (although we were told to do Pelvic Floor Exercises).

I went along to a free gym session which a local PCa support group organises weekly. This was before I knew about the No Cycling rule, but I can see myself using this to try to burn off some of that 4000kCal/week this way - a rowing machine seemed to let me generate similar power output that I do on a bike.

Edited by member 15 Aug 2019 at 17:52  | Reason: Not specified

User
Posted 15 Dec 2019 at 09:29

Thanks very much Steve.

I've got the Mount Vernon Hospital support group meeting on Wednesday. In theory it's just about possible to do both if it finishes on time and no traffic on the M25, but that's never been the case so far.

If you want a hand moving, let me know when you have a moving date, and have a good Christmas if I don't see you beforehand.

User
Posted 04 Aug 2020 at 23:54

Had my 12 month followup today with my oncologist. (The 9 month one got skipped due to slippage of all the ones beforehand.) It was a video call. I much prefer face-to-face consultations to phone consultations, but the videocall was pretty close to face-to-face in feel.

He's pleased my PSA has been undetectable since the EBRT and HDR Brachy, and said I can come off the hormone therapy any time I want now. I've been on Zoladex for almost 18 months, and I'm not having bad side effects. I already have my next injection for 8 weeks time, and decided I'll do that one for luck, then I'll stop.

Some painless rectal bleeding had started 5 months after treatment. Urology had told my GP to do a 2 week referral to colo-rectal. I discussed with GP at the time. It was peak COVID, a year before diagnosis I'd been pulled onto a trial of men who have their age 55 bowel screening as a full colonoscopy rather than a poo on a lollipop stick, which was completely clear, and you don't get bowel cancer from radiotherapy in 5 months, so it was most unlikely to be bowel cancer - we decided to defer it. I put this to the oncologist today and he agreed with me. As it happens, the bleeding stopped 4 weeks ago, but he said it might well come back.

So that means all the side effects of the EBRT and HDR Brachy have just about worn off. I even managed a portion of broccoli a couple of weeks ago for the first time since treatment, without the previous rear end explosions.

So, all in all, very pleased at the moment.

I've also been doing lots of presentations to local support groups, and one-to-one support, and I find this work really rewarding. Consultant was encouraging me to restart the half day Surviving Hormone Therapy group sessions I had been running at Mount Vernon prior to COVID (but over Zoom instead).

User
Posted 04 Jul 2019 at 10:27

Finally start my radical treatment on Monday, almost a year after the PSA test which kicked all this off. This will be 23 sessions of 2gy RT to prostate, and due to being "high risk" (defined as PSA > 20 at diagnosis, or Gleason >= 8, or T3 or greater - I tick two of the three boxes), also precautionary RT to pelvic lymph nodes too. This will be followed by a single session 15gy high dose rate brachytherapy to the prostate.

Just been told quite firmly, no cycling during radiotherapy, and probably not for a couple of months afterwards. This was news to me - I was intending to continue cycling to stay fit if I was able to.

Then, I'm told I must maintain my weight and body composition throughout RT as it was at the CT planning scan. That's going to be a challenge as I currently burn about 4000kCals/week on the bike. I had rather suspected I would not manage to keep up 4000kCals/week with the tiredness RT is expected to cause, but doing none will make a bigger difference. I should have pigged out just before the CT planning scan, but unfortunately, I had a nice low weight and low body fat measurement that day, which hasn't been matched since!

I had a very nice pre-RT call from a radiographer last night, who went through a Hollistic Needs Assessment (HNA) I had filled in for them a week ago. This was a bit different from the Macmillan one I did many months go. It had lots of detailed questions about urinary and bowl habits, and sexual health, and how satisfied you are with them and if you need any help due to the cancer or hormone therapy. Apparently, we will be repeating this HNA during and after RT, to check on how things change. Specifically, there was a section asking if you are currently sexually active. It says they ask this because sexual function will deteriorate if you are not sexually active during treatment, and they will provide additional support in this case. I have visions of ladies of the night arriving courtesy of the NHS, but I suspect this is more likely to be tadalafil and vacuum pumps, but it's really good they are checking up on this. I took the opportunity to ask about cycling, and the guy said they know some people do, but it tends to make side effects significantly worse. Indeed, I should be avoiding any heavy exercise to muscles in the pelvic region (although we were told to do Pelvic Floor Exercises).

I went along to a free gym session which a local PCa support group organises weekly. This was before I knew about the No Cycling rule, but I can see myself using this to try to burn off some of that 4000kCal/week this way - a rowing machine seemed to let me generate similar power output that I do on a bike.

Edited by member 15 Aug 2019 at 17:52  | Reason: Not specified

User
Posted 04 Jul 2019 at 13:31
All the best for the upcoming treatments Andy62.

Ido4

User
Posted 15 Jul 2019 at 00:59

Hi Andy, 

Even only after knowing you for a short time this doesn't really come as a surprise.   

I think you are doing a really good job in finding out answers to questions you may have. 

Knowledge is power. 

Steve 

 

User
Posted 15 Jul 2019 at 15:54

Took my flow meter to the hospital today, to try it immediately after the RT.

There was a bit of an extra delay after I'd drunk my litre of water before the RT started, and bladder was well full by the time I got out from under the ray gun.

Anyway, it turned out my bladder had 610ml in it by then, more than I'd thought it held. Flow rate at that capacity peaked at 25ml/sec which is quite respectable, but again tails off as a straight line right down to 5ml/sec at the end.

As for using the Pi - it's something I use a lot, so I could quickly knock up the hardware and software. It's well overkill for what it's doing though.

Edited by member 15 Jul 2019 at 15:55  | Reason: Not specified

User
Posted 20 Jul 2019 at 10:10
You need professional help - no-one in their right mind would choose to eat green beans, especially in a hospital canteen.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2019 at 19:23

I came home from the HDR brachytherapy last night (Tuesday), 2.5 days and 2 nights in hospital. Hopefully that marks the end of my radical treatments except for the ongoing HT.

Went in Sunday 3pm. Lots of medical questionnaires, blood tests, etc. There were 3 of us for the procedure, and we were processed as a production line (plus a 4th woman for cervical cancer, although I didn't see her at any point - women have to have 5 consecutive days of brachy, which must be horrendous). We were interviewed by a nurse, a doctor, and an anesthetist that evening, and nil by mouth from midnight, except any morning medication which had to be taken before 6am with a minimum of water.

I was to be woken at 6am to take a shower. I was in a bay where two of the other patients were on 24 hour chemo with pump drivers, and there were many more pump drivers audiable further away on the ward. These make a continuous noise, and whilst unplugged so the user can wheel them to the toilet (frequently), they let out a continuous warning sound like a mobile ringing, so I got no sleep. The sound reminded me of the eerie silence after the collapse of the World Trade Center towers with just the firemen's alert bleepers sounding. Given I couldn't sleep, I decided to head for the shower early, as there was only one shower.

The consultant came to see each of us at 8am. My blood tests from the night before showed an out-of-range creatinine level (part of the renal function tests), so he asked me for my copy of my medical notes as he knows I have all my blood test results in a table back to 2011, and it's the same value in all of them, so he was happy. The anesthetist had also looked through my copy of my medical notes the night before, and said "Wow - I wish everyone did this". The pharmacist came to ask what drugs I'm on, so I handed him a copy of a sheet I keep which lists all my prescribed and self-medicated drugs. Again, "Wow - I wish everyone did this". One problem I have encountered is that when they see Metformin, they instantly assume I'm diabetic, even though the sheet explicitly says why I'm on Metformin (better cancer treatment outcomes and reduction in some ADT side effects).

Then, one at a time, we were wheeled to theatre, where the procedure takes 40-60 mins. I had 18 brachy needles inserted, and one of the others had 20. As I'm waking up in recovery, the nurse proudly tells me they closely monitored my blood sugar, and it stayed on 5.3 throughout without them needing to control it. I again point out I'm not diabetic, and explain why I'm on metformin. You wake up with a complicated urinary catheter fitted, although at this point it's just draining into a bag - the complicated bit is for later. Initially, it makes you feel like you badly need to pee, but as you wait in recovery, your body gets more use to it. During the operation, the catheter and bladder are filled with some fluid that shows well on ultrasound, so they can see your urethra clearly while inserting the needles using rectal ultrasound guidance - ideally they want the brachy needles to be a specific distance from the urethra so the prostate is fully dosed, but less gets into the wall of the urethra, as that can lead to a stricture (scarring that eventually blocks the urethra - happens in around 8% of cases). The brachy needles are a discomfort and have all the flexible ends hanging out of your perineum, but not painful. From this point, you have to stay laying on your back.

After maybe an hour more (I had no sense of time), I was wheeled for a MRI scan and a CT scan, to accurately record where the needles are, and then it's back up to the ward. The scans go off to medical physics who then calculate how long the single high dose radioactive source has to spend at each position in each brachy needle, and the consultant then signs off the plans. This takes some hours. When they've completed the task, it's expected the prostate will have swollen, so you have to have another CT scan which is passed to medical physics again so they can make minor corrections.

Then it's down to the brachy machine. After 23 sessions of EBRT, I'm well used to being locked in rooms with 10 foot concrete walls while everyone else goes and stands in a safe place outside, and this is yet another one of those. The brachy machine has 24 ports on it, of which 18 are used in my case. These are connected via clear plastic tubes to the 18 flexible ends hanging out of my perineum. Then all the staff retire behind the 10 foot walls and lock me in. The machine starts... It initially pushes a dummy load fully down each tube in turn, to make sure it can. I can feel a couple of the tubes which are touching my legs move as it does so, but there's no sensation from the ends inside my body. Then it starts a second cycle. For each tube, it again pushes the dummy load down the tube and back, but then it repeats with the HDR brachy seed. The HDR seed is pushed to the first position and held there for some seconds, and then moved a bit further and held again, etc. I didn't time it, but the period it was held in place varied from perhaps 2 to 6 seconds before being moved a bit further in the tube. Also, the number of individual stopping points varied widely between the tubes from perhaps 2 to maybe 8, depending how much prostate that tube penetrated. Most people say you don't feel anything. I did - my prostate gradually started stinging more and more as the HDR brachy seed accumulated time in the prostate. The whole procedure took about 20 minutes, and perhaps another 20 minutes setup beforehand. I got the nurses to take a couple of pictures of the brachy needles whilst I was still connected to the machine, but they aren't allowed to take a picture of the brachy machine. They disconnect the machine, and quickly pull the needles out, which is a bit painful but only takes a few seconds.

Then it's back to the ward for what's called continuous bladder irrigation - the more complicated part of the catheter. The catheter has 3 ports. One used to blow up the balloon which holds it in place, and two separate additional separate tubes into the bladder. One drains the bladder, and the other simultaneously fills the bladder with saline from giant drip bottles. I didn't realise why this was necessary until the consultant drew me a picture the next morning, but the brachy needles pass right through the prostate and go into the bladder. This is because they need to be able to get the HDR seed right to the edge of the prostate, but wouldn't be able to do that if the needle stopped at the edge of the prostate. So the needles continue into the bladder. Needless to say, when the needles are withdrawn, a lot of blood runs in to the bladder, and this mustn't be allowed to form large clots which could block the urethra, so the continuous irrigation should wash the blood out before it clots. That worked fine for the other two patients, but my catheter kept blocking with clots. It was already blocked by the time I got back to the ward, and it blocked a couple more times during the night, mainly due to the drip bottles running out and not getting changed in time. The other two patients got their catheters removed first thing the following morning. Mine stayed in until midday because the irrigation water was still going pink if I moved around.

One possible side effect of brachy is a loss of sensation on one or other side of the penis, which is sometimes permanent. I checked this and it was fine, but I'd completely lost sensation on large parts of the scrotum. I was reflecting that didn't seem so bad, but it was fully back by the next morning.

The final hurdle is to fill a cardboard urine bottle, before they'll discharge you. I was drinking loads, but nothing was coming out, and I didn't have the sense there was anything in my bladder. Looking back now, I think this may be a side effect of a general anesthetic which I've seen before - kidneys not ejecting excess water from blood. Eventually, I filled the bottle, and my brother drove me home.

The kidneys started running overtime to make up for the backlog of water I'd drunk, and I had to run the the front door and make a bee-line for the toilet. This continued hourly all night, during which I nearly filled a 4 pint milk bottle from the water that was stored in body. My bladder capacity was around 100ml at the start of the night but was up to around 200ml by the end of the night. Also, by the end of the night, urine was clear of blood except first few cc's - this suggests bladder has stopped bleeding, but blood still coming from prostate. Also, at the beginning of the night, I had no sensation of peeing, and found I'd already started by the time I'd pulled down the disposable pants, but that got better through the night and is mostly fixed now, but still wearing disposible pants as there's still blood dripping from the urethra, from the prostate. Apparently, this will probably get worse before it gets better.

I'd had no pain whatsoever since the catheter came out, but it started stinging today. Then I realised that I'd forgotten to drink the cranberry juice I got. Costco had a special offer at the beginning of my RT, and I bought 36 litres of the low sugar one, which I've been drinking every day - even took a couple into the hospital. Indeed, the glasses of pink cranberry juice I was drinking were exactly the same colour as contents of the urine bag, which caused a number of passers by to do a double take. After a glass of cranberry juice just now, the stinging has gone. Wonderful stuff (but mustn't be drunk by anyone using Warfarin blood thinner).

So far, I've got very little bruising, only covering about half the area the needles punctured, much less than the bruising following the transperineal biopsy, but as I recall from the biopsy, the bruise can get much worse before it goes, as leaked internal blood makes its way to the skin.

User
Posted 16 Aug 2019 at 11:18

Lynn,

Scientists work by demonstrating proofs, which they put before their peers for verification via the scientific journal peer review process. That's how their discoveries become accepted. I did a quick search on Snuffy Myers, but didn't find any peer reviewed papers. This would suggest he hasn't done any original work which he wants the scientific community to verify for correctness.

That's not to say his work is in any way incorrect or misleading. He might be basing it on popularising other peoples' research work and that's good and fine. But as a scientist myself, I tend to go directly to the original source, because I often find other peoples' interpretations of it (particularly of any statistical analysis) is frequently misleading or incorrect.

The effects of metformin were discovered by looking at long term outcomes and trying to correlate those with other life factors across tens of thousands of patients, to understand what factors might impact prognosis. A bunch of diabetics were found to have a statistically significant lower incidence of recurrence, and statistically significant fewer fatal side effects from ADT. Homing in, it was discovered this applied only to those on metformin, not those on other anti-diabetic drugs, nor undiagnosed diabetics. There's a current STEMPEDE branch trying to understand this better. It might be that you have to be both diabetic and on metformin to benefit, in which case it won't help me, but the metformin STAMPEDE branch will reveal this data eventually.

I think there's some similar research around daily low dose asprin, but I haven't looked in to that yet.

User
Posted 13 Dec 2019 at 23:22
It is usually the case that HT brings down PSA to a very low level and this is highly desirable before RT is given. This optimizes the chance of the RT being effective. However, even if HT brings the PSA down to a very low level, sooner or later the cancer will find a way of advancing even where the HT is continued unless RT or another treatment is given. So feel you had timely RT.

Do continue to have your PSA monitored and pursue any concerns. Unfortunately, even after radical treatment cancer seemingly eradicated can again grow, sometimes many years later. "Cautious optimism" it a good way to think of it.

Barry
User
Posted 05 Aug 2020 at 08:15
Great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Aug 2020 at 08:23

Hi Andy, 

Really great news on your progress.

Also a big thank you for the support work you do, and especially for taking the time to telephone me when I was at a low point post op. 

Best wishes. 

Kev.

User
Posted 05 Aug 2020 at 08:45

Great news. Interesting to read about the support work you do too, fantastic.

 

Ido4

User
Posted 05 Aug 2020 at 13:58

Congratulations, Andy. 

You deserve to have good results as a reward for all the help you give to others. 

Steve 

User
Posted 06 Aug 2020 at 07:40
Excellent news Andy and thanks for all the help you give to others

Cheers

Bill

User
Posted 23 Aug 2020 at 08:49

Hi Ross,

Shortly after I was diagnosed, I decided not to renew my work contract, and instead spend time learning about this disease, so I understood my options and pathways better, and could understand and talk with the consultants. I also found this fascinating, which helped, and was probably my way of coping with and taking control of my cancer diagnosis. My diagnosis was quite a long process as I was scheduled for more and more tests, which gave me plenty of time to do this - I probably did it for a fairly solid 3 months, combined with taking advantage of my freedom to do more cycling. I've never stopped since - I'm often looking up more things in research papers, but it's not like my full time job now, and it's often not related to my treatment, but background to presentations or supporting others. At my first or second consultation after being passed to my oncologist with a CNS present, the CNS referred to me as an Expert Patient - I must have looked a bit worried, because the consultant said he loved dealing with patients who have sufficient knowledge to take control of their treatment. At subsequent meetings he would mention things like the various STAMPEDE trail arms, knowing I would have read about them already, and I did end up following some of them, although not as part of the trial. My GP was brilliant too in supporting my choices and did warn me some clinicians really don't like expert patients, but I was lucky to have ones who did.

As I met more clinicians, particularly in a couple of the support groups where they saw me talking with other patients, they encouraged me to take a more active role in support, and one consultant in particular gave me time with him to learn more about issues I was getting from patients - that was brilliant.

I take Pomi-T too, although I never recommend my complementary therapies to others. I took the view after looking at the contents that it was, at worse, harmless. For much of the year after RT, I couldn't eat as many vegetables as I used to, in particular broccoli, and figured it might make up for some of that. Buying it in 4-packs from Amazon works out around £15/month, which was the cheapest I found. You can't know it didn't do you any good - you might have come off AS sooner without it, but equally you can't tell if it did you any good either. I am high risk on two counts (Staging and PSA), or Extreme Risk (PSA >= 40) as some research papers catagorise me. My onco has left it up to me when I stop HT, but wanted me to do at least 18 months regardless of post treatment PSA, which I have. He said if my PSA was still around 1, he would recommend the full 3 years. 3 years is normally the total duration before and after treatment, not just the after treatment duration. You might want to clarify that with your onco.

There is never any point in worrying about treatment decision afterwards - everyone makes the best decision they could based on their knowledge and feelings at the time, and you can't do better than that. Decision regret is pointless mental anguish. Everyone will learn more as they go, and research will discover new things, but you can't beat yourself up about not knowing that at the time. A comment I sometimes make to people thinking about this is everyone would prefer their cancer 10 years later, but you have to deal with it now. Wishing you the best on your path.

User
Posted 11 May 2021 at 19:20

Just had what amounts to my 21 month review after HDR Boost (radiotherapy), and 4½ months after Zoladex ran out.

PSA has been <0.01 since the radiotherapy (ignoring one spurious reading 2 days after COVID vaccination, which returned to expected value 2 months later).
Testosterone is still 0.2 nmol/L, which means I'm still effectively on hormone therapy, but that's unsurprising at this point.

Consultation was going to be with consultant, but was with CNS instead as I'm stable and he's overloaded. They're very happy with PSA remaining undetectable since RT, but that's mainly because testosterone hasn't returned yet 4½ months after HT ran out (not surprising).

I will be continuing with 3-monthly PSA and Testosterone tests at least until testosterone is back to normal, but they're now regarding my treatment as complete, and GP will be notified. Next appointment would normally be 6 months, but this one was 10 months since the last and I said I was OK with another 10 months.

I will be referred to colo-rectal for the rectal bleeding, and back to urology which they do at the end of oncology treatment. Also will have a second holistic needs analysis (HNA).

I know only too well there's plenty of opportunity for things to go wrong, and as yet I have no clue what my PSA will become when testosterone returns, but I think I've hit a notable milestone with oncology marking my treatment complete.

User
Posted 25 Oct 2021 at 23:30
Unplanned Hard-Ons, now I miss those!
User
Posted 26 Oct 2021 at 10:05
Looking good Andy x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2021 at 11:00

That is great news. It is a very scary thought that the testosterone might not come back after HT. I have over a year to go and hoping for a similarly good outcome.

Best wishes. 

Jim

User
Posted 26 Oct 2021 at 11:36

Jim, it's quite rare that testosterone doesn't return, although I know only too well that doesn't stop it being a worry. It usually doesn't return to the same level, but as your level declines with age, it wouldn't be the same level in any case if you hadn't ever had hormone therapy.

It used to be very difficult to get TRT (Testosterone Replacement Therapy) if testosterone failed to return, because there was a thought that it would bring the prostate cancer back. This has now been disproved - the down side is that if the cancer was going to come back anyway, it might do so sooner if you're on TRT.

I was even offered TRT by urology 4 months ago, but declined it, as it is likely to slow or prevent your own testosterone returning.

Show Most Thanked Posts
User
Posted 04 Jul 2019 at 13:31
All the best for the upcoming treatments Andy62.

Ido4

User
Posted 05 Jul 2019 at 19:16
Can recommend swimming for exercise. Got me back to something resembling fitness after my RARP when complications meant that I really couldn’t walk very far comfortably or even sit upright for more than half an hour.

Does get a bit boring once you get the the point where 2k is no longer a challenge......

Nick

User
Posted 06 Jul 2019 at 06:46

Good Luck, Andy.

Hope the treatment goes really well! 

Steve 

User
Posted 09 Jul 2019 at 15:05

 The different recommendations and rules we get from different NHS areas is amazing you think they would all be singing from the same song sheet. I had my 20 fractions of radiotherapy in August 2018 once I had my planning scan and tattoos I asked about keeping regular exercise going which for me is daily cycling . Both my oncologist and Cancer care nurse said the best thing I could do was to keep the regular exercise going and eating as usual as Any deviation could cause my weight to fluctuate which would affect my treatment position. I was also told a lot of the tiredness and fatigue you get during radiotherapy is mental and not always physical. So I kept cycling five or six times a week throughout all of my radiotherapy I look forward to getting home from the hospital getting my cycling kit on and going out for an hour or more

User
Posted 09 Jul 2019 at 19:03

Nick, they also suggested no swimming, because the chlorine can cause additional skin irritation in the entry/exit wound area. (Swimming is not my thing anyway.) Also not to soak in water for a long time (e.g. long baths), no additives to bath water (e.g. bubble bath, not that I ever do anyway), and avoid hot water (bath or shower) - have it cooler than normal.

First two RT sessions were OK and fairly non-eventful. All my sessions start with a CT scan which takes just as long as the zapping scan. People with fiducial markers inserted into the prostate get a much quicker (and lower dose) X-ray for positioning, but if you are having HDR Brachytherapy afterwards, they can't insert fiducial markers, and so you have to do a CT scan each time to get you positioned correctly for zapping. 

I did think my urine flow rate might have been reduced immediately after the second session, but the effect was so small I might be imagining it. Today, I turned up 2 hours early (rush-hour around M25 was unusually traffic-free), and I was done almost immediately, but was moved to another (identical) linear accelerator (LA) that was free at that time.

I learned that I'm being zapped at 6MeV (energy of the electrons hitting the tungsten target, where they generate the X-ray photons). Apparently, the machine can go up to 16 or 18MeV (I forget which), but the room itself is not rated that high. There's a good video of how the LA works: https://www.youtube.com/watch?v=jSgnWfbEx1A. As the X-ray head passed over me (twice), I could see the tungsten shielding leaves moving in and out quite quickly to shape the beam.

I had delayed the RT by 8 weeks to try and get my pre-RT PSA lower. It was 5.29 when oncologist was originally going to schedule the RT. A few studies have shown getting a low pre-RT PSA nadir significantly improves outcomes - one of the papers suggests getting it down to 1, and the other two papers down to 0.1. (There's even the suggestion that if you achieve this, the post-RT HT is no longer needed, although I don't intend to skip that.)  I took a PSA test immediately before the first RT session yesterday, and it came back as 0.12 which is near enough to my target, so I'm very pleased I asked for the delay.

After tomorrow's session, I'm off to a free gym session run by one of the local PCa support groups (providing I don't get held up in the treatment - I'll try arriving early again).

User
Posted 10 Jul 2019 at 08:10

Hi Andy, 

My pee flow reduced quite dramatically by the third RT session.  I was told that I couldn't possibly have side effects that soon into treatment and said it must be a urine infection.

It took them five days to accept that it wasn't an infection and I was given Tamsulosin tablets which helped a lot but it shouldn't have taken that long.  I was really concerned that my pee flow would stop completely with all the problems that would create.

Steve 

Edited by member 10 Jul 2019 at 08:13  | Reason: Not specified

User
Posted 10 Jul 2019 at 08:44

Thanks Steve.

I have a week's worth of Tamsulosin, left over from my template biopsy last year, if necessary, but nowhere near that bad yet.

Got here early again today, and sitting in the waiting room. Just downed my litre of water, so unless I have to go around again, I should see you in the gym this afternoon.

User
Posted 12 Jul 2019 at 15:39

First week done. No serious side effects. Think I've got my regime worked out now for the empty bowel and full bladder, although future side effects could screw that up.

The reduced flow issue shows up directly after the RT session when I'm emptying out the litre I just drunk. It gets better throughout the day, to probably not far short of the normal flow rate. Of course, this may get worse as I have more sessions. The radiotherapists didn't dismiss it like Steve's did, and acknowledged that some people can have issues right from the 1st session (in my case, it was a couple of sessions in), and some have none at all all the way through. It's not a problem at the moment though.

Also, Mr Whippy showed up after the 3rd session, but that seems to have recovered just now. He was accompanied by loads of wind all day and night for two days, except, fortunately, during the subsequent RT sessions. It was suggested I eat less fibre, which is an interesting challenge as I thought I'd already stripped the obvious sources out of my diet at the start of the week.

My brachytherapy has been scheduled for what was my last RT day. They can't be done on the same day, so last RT day has been pushed out by one.

Got another gym session in today after treatment.

As I mentioned on another thread, the Mount Vernon Prostate cancer support group have asked me to lead their meeting next week, Wed 17th July, 11am-1pm. If you are anywhere near Northwood (M25 J17/J18), you might be interested. I intend to talk about hormone therapy side effects and how some can be avoided. It's very informal - no projector - no slides! It's usually about 8 of us sitting around a table with tea/coffee/biscuits, although I'm trying to drum up some more interest inside the hospital.

Edited by member 12 Jul 2019 at 15:43  | Reason: Not specified

User
Posted 14 Jul 2019 at 19:52

This might amuse some of you, although it will be no surprise to anyone who knows me well...

I decided I wanted to know my flow rate, and be able to monitor it as RT continues. It's still below where it was at the outset, but not too bad. However, I like to have real data.

This has led me to build myself a flow rate meter this evening. It's a load cell (the element used in digital scales), connected to a load cell digitiser, and then a Raspberry Pi. Basically, you pee into a jug on these scales (through a funnel to prevent the intertia of the urine stream giving weight misreadings), and the mass of urine collected is measured against time. I can now generate flow rate graphs of the type you may have had done in a urology department. Anyway, I now know my peak flow rate is 15ml/sec, although there's a long tail-off going down to 5ml/sec towards the end of voiding. Unfortunately, I don't have the values before RT started, but it was certainly higher from observation, and without such a significant diminishing tail-off.

A shame no pics, or I could show the setup and resulting graph. It still needs work to tidy it up.

User
Posted 15 Jul 2019 at 00:59

Hi Andy, 

Even only after knowing you for a short time this doesn't really come as a surprise.   

I think you are doing a really good job in finding out answers to questions you may have. 

Knowledge is power. 

Steve 

 

User
Posted 15 Jul 2019 at 10:06

Andy

Due to an on going stricture I became obsessed with flow rates, I managed with a Boots urine bottle and a wrist watch. I could only get average flow results but it was always in line with the hospital test. A word of warning, one of our members did mention the yorkshire puddings never tasted same after using the measuring jug to test his flow.  Hope all goes well. 

Thanks Chris.

User
Posted 15 Jul 2019 at 15:38

Love that you’ve built a flow rate machine linked to a Pi!

You can’t beat real data.

 

Ido4

User
Posted 15 Jul 2019 at 15:54

Took my flow meter to the hospital today, to try it immediately after the RT.

There was a bit of an extra delay after I'd drunk my litre of water before the RT started, and bladder was well full by the time I got out from under the ray gun.

Anyway, it turned out my bladder had 610ml in it by then, more than I'd thought it held. Flow rate at that capacity peaked at 25ml/sec which is quite respectable, but again tails off as a straight line right down to 5ml/sec at the end.

As for using the Pi - it's something I use a lot, so I could quickly knock up the hardware and software. It's well overkill for what it's doing though.

Edited by member 15 Jul 2019 at 15:55  | Reason: Not specified

User
Posted 20 Jul 2019 at 01:00

End of second week - that's 10 out of 23 sessions done. Most sessions this week were on an older linear accelerator - it doesn't move quite a smoothly, but they assure me it works just as well. Next week, I'm back with sessions split between the two newest linear accelerators, like I was on the first week.

Flow rate hasn't got any worse - 15ml/sec peak unless bladder is very full in which case it peaks at 25ml/sec. I've measured it every day when emptying out immediately after the scan. I broke my own 610ml bladder capacity personal best the following day, at 640ml.

Arse was getting sore from more frequent toilet visits, or the radiation, not sure which. They gave me a tube of hydrogel which is quite soothing, and lists radiation burns as one of its applications. Today, the radiologist mentioned it works better if you keep it in the fridge! They've said I can take Imodium if I want to, but I'm avoiding it at the moment as it might bugger up my regime for getting my bowels empty, which is working well so far (excluding the original planning session).

I asked a bit more about the treatment machine today. I had a planning scan before treatment started to find where my prostate is, and where all the Organs at Risk (OAR) are - the things which you want to try and avoid irradiating. That's done with a standard CT scan.

I have a CT scan before each treatment to make sure I'm in exactly the the same position as during the planning session, and that my bladder is full and rectum empty. It turns out this is a special type of CT scan called CBCT, or cone beam CT. The cone matches the cone of the treatment X-rays, so it doesn't spread outside the treatment area and give a dose to other organs - since I'm also having 23 of these, that alone is a significant dose. The dose of the CBCT is allowed for (in effect subtracted) from the treatment dose, although it doesn't do the dynamic masking that the treatment dose does, so it does get some extra dose to organs in the main dose entry/exit wound areas.

After today's (Friday) scan, I went straight along to the restaurant and had the fish with a very large helping of green beans. Green beans are not my favourate veg, and these didn't look very appetising either (boiled long enough to ensure they don't look remotely fresh), but my body was craving some green vegetables, having cut them out all during the week, and they tasted much better than I suspect they really were.

Been out on the bike a couple of times now during RT, with no obvious ill effects, albeit with a new prostate-friendly no-nose saddle fitted.

I have to say the Macmillan centre at Mount Vernon is a very nice place to visit. The staff are so nice, and precisely gauge if you want to chat, or if you want to work on your laptop. With me, they have even got the offering of a cup of tea perfect. I don't want one when I come out of treatment, as I'm in there waiting to empty out the litre of water I drunk, before going and sitting in a traffic jam on the M25. However, before treatment, it's really good to have one).

User
Posted 20 Jul 2019 at 10:10
You need professional help - no-one in their right mind would choose to eat green beans, especially in a hospital canteen.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jul 2019 at 14:25
Nonsense - they’re nearly as yummy as Brussel Sprouts!

User
Posted 20 Jul 2019 at 14:45

Well, I just steamed and eat a whole broccoli with my lunch. I'm not really a fanatic veg person, but my body is clearly telling me after a week without any that it badly wants some.
I think that will have to be it for another week, to make sure it's completely passed through before Monday's encounter with the big ray gun.

User
Posted 20 Jul 2019 at 14:58
Were you told to avoid green veg, Andy? I was only told to avoid caffeine, and food that was high in fibre. No mention of veg at all.

Hope your remaining sessions go ok. You’re probably nearing the point now at which you can expect the significant side-effects to start, but if you do get them, they should die away again within a few weeks of treatment ending.

Very best wishes,

Chris

User
Posted 20 Jul 2019 at 16:17
Green beans are high in fibre, Chris, as are sprouts, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2019 at 20:05

Let's just say that eating the vegetables was a very very bad idea...

User
Posted 23 Jul 2019 at 23:19

Had the mid-RT review yesterday, and because I didn't remember half of what he said (there was loads covered), I asked to see him again today, which they very obligingly booked in. The guy doing it was brilliant, I have to say.

To briefly return to the subject of the thread, after I showed him the bike saddle I bought, I got permission to ride my bike again!

Just to elaborate on the previous post, the beans and the broccoli were a major disaster. I was thinking the warning about fruit and veg was just about wind interfering with getting bowel empty, but no, major shits, and bleeding arse due to the combined effect of lots of wiping and RT. Was given tubes of hydrogel and Instillagel to try on it. The hydrogel is quite soothing, but basically just a water gel. It sorted itself out just as I got the Instillagel, so didn't need to open that yet. I did admit today that I eat a whole broccoli, and the guy's face was a picture 😮 - "I'm just trying to get my head around someone eating a whole broccoli", he said.
Anyway, the key is to avoid fibre if it gives you the shits (and conversely, add more if you are constipated, but I'm miles away from there).

We were talking about the urine side of things, and I was warned I need to start planning my day around access to toilets, and get some incontinence pants. I was hoping it was a bit premature as I've had no problem on the urine side so far. He said everyone ends up wetting the table - don't worry about it, nurses are used to it. So guess what happens 10 minutes later when I'm on the table under the ray gun? It was only a tiny bit, and just required a change of underpants, which fortunately I had been bringing from the start out of an abundance of caution. The main difficulty was trying to stay still whilst also trying to hold it in until the ray gun finished it's second pass - I'm sure I was trembling. When I went for a pee afterwards, I had half a litre in there.

In another thread, I mentioned a group session for men on HT which I ran at the hospital's support group last week, to get men discussing all the side effects and covering all the workarounds required to improve QoL. It looks like the hospital are keen for me to do this again. I've asked for a meeting with a urologist so I can get him to review my material before I do the next session, and this is being arranged.

User
Posted 25 Jul 2019 at 23:52

Originally Posted by: Online Community Member
From another thread: I love you Andy! Are you actually “data” off star-trek?? I think you are. Thanks for all your input !

Ha!

Well, my job is that of a data scientist - I grab every bit of data I can find from whatever system I'm working on, and then search for correlations between the data and the system's performance or breakages, and use those correlations to predict performance issues or breakages before they happen, so they can be avoided.

I applied pretty much the same principle to me right back from the beginning of diagnosis. I didn't know much about PCa at that point, so I quit my day job, spent 2 months solid learning about PCa from research papers; the different treatments, the side effects of them, the workarounds of the side effects, etc. I learned a lot from this forum too, although that was many months later, as I didn't find it early on. I used myself as the 'system' I'm working on, collecting loads of data, and looking at how the treatment is impacting on my body, and by this means, together with understanding things like the drug side effects, I've picked up at least 3 issues that I think would not otherwise have been discovered:

1) My liver doesn't like Tamoxifen, and it would have given me non-alcoholic fatty liver disease. OTOH, I don't like female breasts on me, so a compromise had to be found, and that was that I dosed the Tamoxifen according to symptoms, rather than continuously. That required that I understand how the dosing works to a level which no one has done before as far as I know, so I built a dosing model to work it out from the manufacturer's data. This worked really well - my breasts completely went (although I did catch them early, before they were noticeable), and my liver became happy again.

2) I detected that Zoladex was pushing me towards diabetes (or towards pre-diabetes). I was graphing my fasting blood glucose level, so I could see it change direction when I switched from Bicalutamide to Zoladex. Although I was still in the normal range (5.5), I started on Metformin, which also has other benefits for PCa patients.

3) I also detected my blood pressure start rising on switching to Zoladex - like the fasting, a graph of blood pressure against dates showed a noisy flat line, which took an upwards bend from the first Zoladex injection. When it had increased by 25mmHg, I fixed that by doubling my blood pressure medication, and the graph shows a jump back to where it should be.

I was looking for all these because I knew they were possible side effects of the meds. I don't believe any of them would have been picked up by my consultants or GP until a long time later, and the correlation with the cause would not be evident at all without the data I collected throughout.

I'm very pleased both my consultant and my GP fully support me in this. Apparently, I'm what's known as an "Expert Patient", and fortunately my consultant, clinical nurse specialists (Macmillan), and GP all like them (but many clinicians don't).

User
Posted 26 Jul 2019 at 18:45

End of third week - that's 15 out of 23 sessions done. Now that I'm avoiding anything with fibre in it, things have gone quite well. Yesterday, only 218ml of the 1 litre I drunk made it's way to my bladder - I think the rest came straight out of my sweat glands on the hottest day ever. They did the treatment, but warned I should have at least 300ml in my bladder. Today I was close to bursting. They did the CT scan, and told me to go out and have a fart before coming back in again (but in very polite medical terms). It's damn difficult to let go of a fart (which I had no sensation of needing to do anyway) when you are bursting for a pee, and need to keep the pee in. In the event, I let go of some of the pee too. By the time I was called back in and they did the CT scan again, they asked if I was OK and could hold on for 2 more mins, seeing how full my bladder was on the scan. They left me an emergency bottle if I needed it, but I managed just, making good use of the pelvic floor muscles to hold in what turned out to be 516ml. Apparently the worse thing you can do is pee into the ray gun - it does happen and puts the multi million pound machine out of order. You would have though it might include rubber seals, or maybe that's an optional extra? It's funny though - after I got off the table, the extreme urgency downgraded itself to "need to go in next 5 mins", and I managed to hang on for a couple more minutes whilst another member of the team went through all the routine questions about any blood in your urine, stools, any pevlic pain, etc (all "no", so far). Even the arse has healed up fine since the broccoli incident.

Anyway, that's 2/3rds of the EBRT done. Celebrating the weekend with a Caffeine-free Diet Pepsi, but no vegetables.😉

Edited by member 26 Jul 2019 at 18:46  | Reason: Not specified

User
Posted 08 Aug 2019 at 19:31

I had my last of 23 External Beam Radiotherapy sessions today, totaling 46Gy. (HDR Brachytherapy next week will boost this to 61Gy in prostate only.)

This session was quite uneventful, but it feels very emotional. I gave the radiographers a large tin of biscuits and a specially crafted Thank-you card, and we exchanged a big hug. They've been incredible. A wonderful smile and greeting every day, genuinely concerned about me, listen and understanding and as much help as needed, not to mention stunningly professional throughout. I never saw one having a bad day - they clearly love their jobs and patients.

Said my goodbyes to those I've got to know so well in the waiting rooms over the last month, and I'm really going to miss them. We shared the most intimate of conversations which just wouldn't happen in any other circumstances. These were not just PCa patients, but several women with breast cancer and cervical cancer, a young women with bowel cancer brought in by her dad every day who seemed to find much of what I said hilarious - well I was just so pleased I could make someone so young with cancer dissolve into giggles, which on one occasion more than compensated for the water I accidentally tipped over me resulting in the appearance I'd wet myself even before going in for the encounter with the ray gun. Also spoken with a number of terminal patients having palliative RT, and they've been wonderful too.
I'm so glad I didn't go for a prostatectomy - I would have missed out on this incredible lifetime RT waiting room experience.

I'll also miss the Macmillan centre, where I went for at least half an hour after each treatment to allow time for the litre of water to drain out before sitting in a traffic jam on the M25. Wonderful staff inside, who perfectly sense if you want to just work on your laptop, or if you might benefit from a chat.

Side effects...
If I hadn't had the self-inflicted broccoli incident half way through, my side effects would have been quite minimal. Some urinary urgency, reduced bladder capacity, and incontinence just a few seconds before getting the old John Thomas out and pointing it where you actually want the pee to go, but fine otherwise. It's a bit like turning on the garden hose at the wall, and running to catch the loose end before too much goes where it shouldn't. This is caused by a weakened internal urethral sphincter and is expected. The external urethral sphincter/pelvic floor can compensate to some degree but is also weakened - I should have started the PFE earlier. Speaking to a urologist, apparently you should start PFE when you start hormone therapy, because the hormone therapy weakens the pelvic floor muscles (which includes the external sphincter). I guess that's not unexpected given it weakens your other muscles, but I haven't seen that stated anywhere before. Not sure if I'll continue wearing the incontinence pants - maybe just when I go out. They don't ventilate the nether regions very well.
Bowel is mostly a bit looser than normal and a little sore inside occasionally. No incontinence. I seem to still have safe control of farting, something I was warned would fail. Was given a couple of tubes of hydrogel in case I need them over the next few weeks. Still have the Instillagel they gave me too, which I haven't yet needed to open.

Side effects can get worse for a couple of weeks. Mine kicked in early, but have been remarkably stable for a while now. In any case, I probably won't know because the HDR Brachytherapy next week is likely to swamp any ongoing side effects of the EBRT.

Earlier in the week, I had my 3rd Zoladex injection. The nurse said I don't really have enough abdominal fat, given the pellet is supposed to be left in the skin fat. She spent a while probing around with the needle inside, and then had to get me to sit up so she could bunch up some more skin. Had visions of ending up with a nasty bruise, but no, it was perfect as ever with no mark other than a fading tiny red puncture dot. She's been doing it for 30 years, apparently. That's why I always explicitly book the appointment with her.

Edited by member 09 Aug 2019 at 08:14  | Reason: Not specified

User
Posted 08 Aug 2019 at 21:09
Thanks Andy - really great post, encouraging for me (and many others I am sure) who are on the journey a little behind you.

I loved the description of your experiences at RT, and feel especially lucky that I'll have the opportunity to experience something similar, despite not having a prostate ;0

Hope the Brachytherapy goes well.

User
Posted 08 Aug 2019 at 21:41

It is emotional when you finish RT. The staff are amaze and you meet lots of lovely fellow travellers.

Good luck going forward with the brachytherapy.

Ido4

User
Posted 12 Aug 2019 at 07:19

Thanks for the good wishes. Laying here in my NHS issue gown which displays my arse crack whenever I walk around (not that I care) and my anti-DVT stockings with the holes in the feet, waiting to go down for the bracky op.

Interestingly, I see they included PSA in my blood test yesterday (3 days after EBRT finished), and it's  <0.1 which is a pleasant surprise - was expecting it to go up after the EBRT and I didn't think they'd even bother to measure it this soon.

User
Posted 14 Aug 2019 at 19:23

I came home from the HDR brachytherapy last night (Tuesday), 2.5 days and 2 nights in hospital. Hopefully that marks the end of my radical treatments except for the ongoing HT.

Went in Sunday 3pm. Lots of medical questionnaires, blood tests, etc. There were 3 of us for the procedure, and we were processed as a production line (plus a 4th woman for cervical cancer, although I didn't see her at any point - women have to have 5 consecutive days of brachy, which must be horrendous). We were interviewed by a nurse, a doctor, and an anesthetist that evening, and nil by mouth from midnight, except any morning medication which had to be taken before 6am with a minimum of water.

I was to be woken at 6am to take a shower. I was in a bay where two of the other patients were on 24 hour chemo with pump drivers, and there were many more pump drivers audiable further away on the ward. These make a continuous noise, and whilst unplugged so the user can wheel them to the toilet (frequently), they let out a continuous warning sound like a mobile ringing, so I got no sleep. The sound reminded me of the eerie silence after the collapse of the World Trade Center towers with just the firemen's alert bleepers sounding. Given I couldn't sleep, I decided to head for the shower early, as there was only one shower.

The consultant came to see each of us at 8am. My blood tests from the night before showed an out-of-range creatinine level (part of the renal function tests), so he asked me for my copy of my medical notes as he knows I have all my blood test results in a table back to 2011, and it's the same value in all of them, so he was happy. The anesthetist had also looked through my copy of my medical notes the night before, and said "Wow - I wish everyone did this". The pharmacist came to ask what drugs I'm on, so I handed him a copy of a sheet I keep which lists all my prescribed and self-medicated drugs. Again, "Wow - I wish everyone did this". One problem I have encountered is that when they see Metformin, they instantly assume I'm diabetic, even though the sheet explicitly says why I'm on Metformin (better cancer treatment outcomes and reduction in some ADT side effects).

Then, one at a time, we were wheeled to theatre, where the procedure takes 40-60 mins. I had 18 brachy needles inserted, and one of the others had 20. As I'm waking up in recovery, the nurse proudly tells me they closely monitored my blood sugar, and it stayed on 5.3 throughout without them needing to control it. I again point out I'm not diabetic, and explain why I'm on metformin. You wake up with a complicated urinary catheter fitted, although at this point it's just draining into a bag - the complicated bit is for later. Initially, it makes you feel like you badly need to pee, but as you wait in recovery, your body gets more use to it. During the operation, the catheter and bladder are filled with some fluid that shows well on ultrasound, so they can see your urethra clearly while inserting the needles using rectal ultrasound guidance - ideally they want the brachy needles to be a specific distance from the urethra so the prostate is fully dosed, but less gets into the wall of the urethra, as that can lead to a stricture (scarring that eventually blocks the urethra - happens in around 8% of cases). The brachy needles are a discomfort and have all the flexible ends hanging out of your perineum, but not painful. From this point, you have to stay laying on your back.

After maybe an hour more (I had no sense of time), I was wheeled for a MRI scan and a CT scan, to accurately record where the needles are, and then it's back up to the ward. The scans go off to medical physics who then calculate how long the single high dose radioactive source has to spend at each position in each brachy needle, and the consultant then signs off the plans. This takes some hours. When they've completed the task, it's expected the prostate will have swollen, so you have to have another CT scan which is passed to medical physics again so they can make minor corrections.

Then it's down to the brachy machine. After 23 sessions of EBRT, I'm well used to being locked in rooms with 10 foot concrete walls while everyone else goes and stands in a safe place outside, and this is yet another one of those. The brachy machine has 24 ports on it, of which 18 are used in my case. These are connected via clear plastic tubes to the 18 flexible ends hanging out of my perineum. Then all the staff retire behind the 10 foot walls and lock me in. The machine starts... It initially pushes a dummy load fully down each tube in turn, to make sure it can. I can feel a couple of the tubes which are touching my legs move as it does so, but there's no sensation from the ends inside my body. Then it starts a second cycle. For each tube, it again pushes the dummy load down the tube and back, but then it repeats with the HDR brachy seed. The HDR seed is pushed to the first position and held there for some seconds, and then moved a bit further and held again, etc. I didn't time it, but the period it was held in place varied from perhaps 2 to 6 seconds before being moved a bit further in the tube. Also, the number of individual stopping points varied widely between the tubes from perhaps 2 to maybe 8, depending how much prostate that tube penetrated. Most people say you don't feel anything. I did - my prostate gradually started stinging more and more as the HDR brachy seed accumulated time in the prostate. The whole procedure took about 20 minutes, and perhaps another 20 minutes setup beforehand. I got the nurses to take a couple of pictures of the brachy needles whilst I was still connected to the machine, but they aren't allowed to take a picture of the brachy machine. They disconnect the machine, and quickly pull the needles out, which is a bit painful but only takes a few seconds.

Then it's back to the ward for what's called continuous bladder irrigation - the more complicated part of the catheter. The catheter has 3 ports. One used to blow up the balloon which holds it in place, and two separate additional separate tubes into the bladder. One drains the bladder, and the other simultaneously fills the bladder with saline from giant drip bottles. I didn't realise why this was necessary until the consultant drew me a picture the next morning, but the brachy needles pass right through the prostate and go into the bladder. This is because they need to be able to get the HDR seed right to the edge of the prostate, but wouldn't be able to do that if the needle stopped at the edge of the prostate. So the needles continue into the bladder. Needless to say, when the needles are withdrawn, a lot of blood runs in to the bladder, and this mustn't be allowed to form large clots which could block the urethra, so the continuous irrigation should wash the blood out before it clots. That worked fine for the other two patients, but my catheter kept blocking with clots. It was already blocked by the time I got back to the ward, and it blocked a couple more times during the night, mainly due to the drip bottles running out and not getting changed in time. The other two patients got their catheters removed first thing the following morning. Mine stayed in until midday because the irrigation water was still going pink if I moved around.

One possible side effect of brachy is a loss of sensation on one or other side of the penis, which is sometimes permanent. I checked this and it was fine, but I'd completely lost sensation on large parts of the scrotum. I was reflecting that didn't seem so bad, but it was fully back by the next morning.

The final hurdle is to fill a cardboard urine bottle, before they'll discharge you. I was drinking loads, but nothing was coming out, and I didn't have the sense there was anything in my bladder. Looking back now, I think this may be a side effect of a general anesthetic which I've seen before - kidneys not ejecting excess water from blood. Eventually, I filled the bottle, and my brother drove me home.

The kidneys started running overtime to make up for the backlog of water I'd drunk, and I had to run the the front door and make a bee-line for the toilet. This continued hourly all night, during which I nearly filled a 4 pint milk bottle from the water that was stored in body. My bladder capacity was around 100ml at the start of the night but was up to around 200ml by the end of the night. Also, by the end of the night, urine was clear of blood except first few cc's - this suggests bladder has stopped bleeding, but blood still coming from prostate. Also, at the beginning of the night, I had no sensation of peeing, and found I'd already started by the time I'd pulled down the disposable pants, but that got better through the night and is mostly fixed now, but still wearing disposible pants as there's still blood dripping from the urethra, from the prostate. Apparently, this will probably get worse before it gets better.

I'd had no pain whatsoever since the catheter came out, but it started stinging today. Then I realised that I'd forgotten to drink the cranberry juice I got. Costco had a special offer at the beginning of my RT, and I bought 36 litres of the low sugar one, which I've been drinking every day - even took a couple into the hospital. Indeed, the glasses of pink cranberry juice I was drinking were exactly the same colour as contents of the urine bag, which caused a number of passers by to do a double take. After a glass of cranberry juice just now, the stinging has gone. Wonderful stuff (but mustn't be drunk by anyone using Warfarin blood thinner).

So far, I've got very little bruising, only covering about half the area the needles punctured, much less than the bruising following the transperineal biopsy, but as I recall from the biopsy, the bruise can get much worse before it goes, as leaked internal blood makes its way to the skin.

User
Posted 15 Aug 2019 at 14:29

Andy, A brilliant report from the start that should be highlighted for reference. A bit surprising there isn't a general anaesthetic for the braccy it's nice being asleep while things happen.  You got near your target psa for the RT too. Interesting that you use a drug, Metformin,  that the doctors don't normally  prescribe but you believe it improves outcome. Well done. All the best. Peter

User
Posted 15 Aug 2019 at 18:21

Peter,

Thanks for the comment. I changed the thread name to better reflect what's in it now, rather than just the first post.

I see I wasn't clear, but the brachy needles (proper name, catheters, but that's confusing) are inserted under general anesthetic. After that, you are brought around for the rest of the day, since it requires being wheeled between 3 scanners, waiting 3-5 hours on the ward, and the brachy treatment room, and none of it is anywhere near painful enough to justify keeping someone under a GA for 8+ hours.

I am very lucky with my GP and my consultant. They are both willing to do things that I can justify based on peer reviewed research papers, even if it's not yet mainstream. I think showing that you fully understand the treatments is also key here. It was the same with my tamoxifen use. Metformin has been shown to be advantageous in multiple ways, and it's not expensive. This triggered the current STAMPEDE branch which is trying to work out the best dose, but that's going to take 10 years. The original accidental discovery was based on the doses diabetic patients take, so I'm simply starting there - that's already known to work even if it's not optimal. Metformin (unlike some other anti-diabetic drugs) doesn't have any risk of giving you a hypo if you aren't diabetic. It sometimes has side effects which stop some people using it (upsetting guts and cramps being the main ones). Zoladex was pushing me towards pre-diabetic anyway (a known side effect), and it may help stave off that - metformin has pulled my blood sugar back a bit, but I don't have enough data samples yet to see if it's stopped rising.

User
Posted 15 Aug 2019 at 23:53
Probably helps that Metformin is cheap as chips too!

Did you go with that because of the work done by Snuffy Myers?

User
Posted 16 Aug 2019 at 05:40

Originally Posted by: Online Community Member
Did you go with that because of the work done by Snuffy Myers?

No - I'd never heard of him.

I tend to work from peer reviewed research papers published in scientific journals, and at a quick glance, he doesn't seem to have any.

User
Posted 16 Aug 2019 at 07:16
User
Posted 16 Aug 2019 at 10:02
Call yourself a scientist but hadn’t read / watched any Snuffy Myers???? 😱

His films used to be stickies on the forum (before the modernisers got rid of stickies) :-(

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

User
Posted 16 Aug 2019 at 11:18

Lynn,

Scientists work by demonstrating proofs, which they put before their peers for verification via the scientific journal peer review process. That's how their discoveries become accepted. I did a quick search on Snuffy Myers, but didn't find any peer reviewed papers. This would suggest he hasn't done any original work which he wants the scientific community to verify for correctness.

That's not to say his work is in any way incorrect or misleading. He might be basing it on popularising other peoples' research work and that's good and fine. But as a scientist myself, I tend to go directly to the original source, because I often find other peoples' interpretations of it (particularly of any statistical analysis) is frequently misleading or incorrect.

The effects of metformin were discovered by looking at long term outcomes and trying to correlate those with other life factors across tens of thousands of patients, to understand what factors might impact prognosis. A bunch of diabetics were found to have a statistically significant lower incidence of recurrence, and statistically significant fewer fatal side effects from ADT. Homing in, it was discovered this applied only to those on metformin, not those on other anti-diabetic drugs, nor undiagnosed diabetics. There's a current STEMPEDE branch trying to understand this better. It might be that you have to be both diabetic and on metformin to benefit, in which case it won't help me, but the metformin STAMPEDE branch will reveal this data eventually.

I think there's some similar research around daily low dose asprin, but I haven't looked in to that yet.

User
Posted 16 Aug 2019 at 16:05
It was a joke
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Aug 2019 at 16:08
Having said that, Charles Myers is one of the single greatest influences on modern developments in prostate cancer treatment and making chemo safer for patients; some of the now established treatments like abi and enzo wouldn’t exist without his research. You won’t find many urological oncologists that don’t rate him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Aug 2019 at 19:20

Ah, sorry Lyn (and for getting your name wrong).

User
Posted 16 Aug 2019 at 22:32

'Snuffy Myers' who retired some time ago, is highly and widely regarded. I have viewed a number of his video lectures given in his casual and readily understandable way. He was certainly engaged in original research for at least some of the time and the demanding positions he has held show the calibre of the man. The link francij1 gave details more about his standing and involvement.

From Prime

Charles E Myers, MD
Founder and Medical Director
American Institute for Diseases of the Prostate
Co-Founder and President
Foundation for Cancer Research and Education
Earlysville, VA
Charles E Myers, MD is Founder and Medical Director of the American Institute for Diseases of the Prostate and Co-founder and President of the Foundation for Cancer Research and Education in Earlysville, Virginia. He received his medical training from the University of Pennsylvania and the National Cancer Institute, where he specialized in Internal Medicine and Oncology. His primary research interests include developing effective chemotherapy agents for the treatment of colon cancer, breast cancer, and prostate cancer. Dr Myers is the author or coauthor of over 250 scientific papers in peer-reviewed journals and serves as editor of Prostate Forum. He is a member of the American Association for Cancer Research, American Society for Clinical Oncology, American Association for the Advancement of Science, and Eastern Cooperative Oncology Group. Dr Myers is a frequent speaker in the United States, United Kingdom, and Australia.

Edited by member 16 Aug 2019 at 22:33  | Reason: Not specified

Barry
User
Posted 16 Aug 2019 at 23:18

Ah, thanks. I did see papers by C Myers on bowel cancer. Didn't realise it was the same person.

User
Posted 17 Aug 2019 at 03:58

So Andy, I've just been reading up on 'HDR Brachytherapy'. I'm 'into' home cinema and the like and wondered where 'High Dynamic Range' (found on UHD/4K TV's), could possibly feature in Brachytherapy? However, I now know where I went wrong. I'm a 3+4, (Gleason 7) 'expert', having been diagnosed in Nov. 2017. I have been on AS up until now, where they've found 50% cancer in ONE of my recently taken 27 biopsy cores (during my second biopsy in June). Just before the procedure, my Uro said, "Oh you've only got a really low dose of PC, so your next 2 biopsies should be taken in 4 and then 7 years". Lovely I thought. Only now, all that's changed! This one darned core, (which apparently could have had 50% when they first diagnosed me, but they may have missed it) is responsible for my now needing treatment. My Uro said "You're just a young man (at 59 & 3/4), so we won't let you have an operation (prostatectomy), nor will we give you EBRT". He went on to say that as they don't do Brachytherapy at my big regional hospital (NNUH in Norwich, Norfolk), that I would have to go to Addenbrookes in Cambridge, where they will give me permanent 'seeds', of which the radiation should fade over a few months. I haven't even seen an oncologist yet or anyone from Addenbrookes, but he's already told me what treatment they will give me! I don't know if this is normal, to have permanent seeds as I haven't had EBRT? Or is it just him being all 'in charge' as usual? This Uro is known for being very forward about what treatments and procedures he wants you to have and doesn't seem to take no for an answer! I just wanted to thank you as well, for being very informative over your procedures. Can I just ask if they offered you permanent seeds? Or was it just the HDR? I think that one actually sounds better than the permanent one, as I wouldn't want to go around all irradiated for months and suddenly turn into Spider-Man or something, which sounds strangely better than having all those promised side-effects! Regards, Ross.

 

 

User
Posted 17 Aug 2019 at 07:59

Ross,
I think HDR Brachy is always used with EBRT. The other option would be to have multiple HDR Brachy sessions, but I don't know if this is done for the prostate (it is for other cancers).
A single HDR Brachy session by itself wouldn't work - the cancer cells would recover to the same degree as the non-cancer cells.

I was only offered HDR Brachy (out of HDR and LDR). I'm a high risk case (PSA >= 20, or Gleason >= 8, or T3 or greater). The EBRT plus HDR Brachy (or sometimes called whole pelvis RT plus BOOST) is a scheme which is considered good for these cases.

LDR (seed) Brachy is normally used with T2 staging I think, and not in combination with EBRT.
I couldn't see what your staging is, but I guess T2-something from what you've said.

Edited by member 17 Aug 2019 at 08:36  | Reason: Not specified

User
Posted 17 Aug 2019 at 22:09

'You may have HDR brachytherapy on its own or, more often, you will have it together with external beam radiotherapy. If you have external beam radiotherapy with HDR brachytherapy, you will get high doses of radiation to the whole prostate as well as to the area just outside the prostate. You may also have hormone therapy before and/or after HDR brachytherapy to shrink the prostate and make the treatment more effective.' Source https://prostatecanceruk.org/prostate-information/treatments/high-dose-rate-brachytherapy

 

Edited by member 17 Aug 2019 at 22:10  | Reason: Not specified

Barry
User
Posted 17 Aug 2019 at 23:19

Ross,

HDR brachy is definitely done at the NNUH hospital. I was the first patient to have this procedure at the NNUH in November 2018.

 

User
Posted 18 Aug 2019 at 12:01

Originally Posted by: Online Community Member

Can I just ask if they offered you permanent seeds? Or was it just the HDR? I think that one actually sounds better than the permanent one, as I wouldn't want to go around all irradiated for months and suddenly turn into Spider-Man or something, which sounds strangely better than having all those promised side-effects! Regards, Ross.

Ross, the PCUK information advises that permanent seed brachytherapy is generally only given in cases where your PSA is under 10, G6, and staging T1-T2A.

Cheers,

Chris

 

User
Posted 18 Aug 2019 at 19:08

Just as a followup to the EBRT and HDR Bracky...

I've now had time to look through all my blood tests. During the 4.5 weeks of EBRT, my blood counts dropped by around 8% - not unexpected given my pelvis is being hit. Being a cyclist, my haemoglobian levels started off high, and even with this 8% drop, were still in normal range. I didn't notice feeling tired during the EBRT which is a common complaint. Maybe if my haemoglobian levels started off lower, such a reduction would have been more noticeable, and maybe that's why people feel tired? I did around 2000kCals of cycling in the two days between EBRT and Brachy without a problem (and not knowing that my blood counts were down), although I did notice at one point after an energetic cycle ride (when blood pressure is at a minimum), that my brain might have been short of oxygen.

Then followed the HDR Brachy. Looking at the before and after blood tests from that, I would seem to have lost 10% of my blood, and I can easily believe that as I was pissing what looked like the cranberry juice I was drinking for about 24h. This has taken me below normal haemoglobian levels, and I do now feel tired. This level of blood loss isn't typical during HDR brachy - my bladder seemed to bleed more than is normally the case after the operation.

However, this might show one reason why being fit as you enter in to these treatments may well protect you against some of the side effects, such as tiredness.

Brachy was on Monday, released from hospital on Tuesday evening, no pain anywhere.
By Saturday, increasing discomfort peeing and small amounts of continuous fresh blood in pee took me off to A&E thinking UTI due to the catheter which I'd had in hospital. I have to say the A&E emergency GP was superb. He couldn't detect a UTI with a dip test, but didn't rely on that. I had taken my blood test results with me, and he spent a while looking at them. He said normally he wouldn't give antibiotics without a positive test, but looking at my blood tests, I was very run down. He thought it 50/50 there was an infection, and if it caught hold, I would end up being admitted on a drip, so on reflection he gave me antibiotics. That has stopped the stinging pretty instantly.

User
Posted 22 Aug 2019 at 17:47

Thanks everyone. I was told that I will only be offered permanent seed Brachy. I didn't know that HDR is offered at NNUH, which is probably why I was told that I will have to go to Addenbrookes. My PSA is 6-7 mostly. Gleason 7 and staging, I have no idea. He tells me (Uro) that they don't have any other figures to give me! Sorry to break in on your thread Andy!

User
Posted 22 Aug 2019 at 18:57

Well, you will have a staging. If you want to know more, ask for a meeting with the clinical nurse specialist (CNS, or Macmillan nurse in many hospitals). They are often much better at explaining diagnosis and treatments than the consultants, and are likely to have more time to spend with you.

But the seed brachy is for less serious staging than the HDR brachy, and for that, you should probably be grateful.

User
Posted 26 Aug 2019 at 01:57

Originally Posted by: Online Community Member

Finally start my radical treatment on Monday, almost a year after the PSA test which kicked all this off. This will be 23 sessions of 2gy RT to prostate, and due to being "high risk" (defined as PSA > 20 at diagnosis, or Gleason >= 8, or T3 or greater - I tick two of the three boxes), also precautionary RT to pelvic lymph nodes too. This will be followed by a single session 15gy high dose rate brachytherapy to the prostate.

Just been told quite firmly, no cycling during radiotherapy, and probably not for a couple of months afterwards. This was news to me - I was intending to continue cycling to stay fit if I was able to.

Then, I'm told I must maintain my weight and body composition throughout RT as it was at the CT planning scan. That's going to be a challenge as I currently burn about 4000kCals/week on the bike. I had rather suspected I would not manage to keep up 4000kCals/week with the tiredness RT is expected to cause, but doing none will make a bigger difference. I should have pigged out just before the CT planning scan, but unfortunately, I had a nice low weight and low body fat measurement that day, which hasn't been matched since!

I had a very nice pre-RT call from a radiographer last night, who went through a Hollistic Needs Assessment (HNA) I had filled in for them a week ago. This was a bit different from the Macmillan one I did many months go. It had lots of detailed questions about urinary and bowl habits, and sexual health, and how satisfied you are with them and if you need any help due to the cancer or hormone therapy. Apparently, we will be repeating this HNA during and after RT, to check on how things change. Specifically, there was a section asking if you are currently sexually active. It says they ask this because sexual function will deteriorate if you are not sexually active during treatment, and they will provide additional support in this case. I have visions of ladies of the night arriving courtesy of the NHS, but I suspect this is more likely to be tadalafil and vacuum pumps, but it's really good they are checking up on this. I took the opportunity to ask about cycling, and the guy said they know some people do, but it tends to make side effects significantly worse. Indeed, I should be avoiding any heavy exercise to muscles in the pelvic region (although we were told to do Pelvic Floor Exercises).

I went along to a free gym session which a local PCa support group organises weekly. This was before I knew about the No Cycling rule, but I can see myself using this to try to burn off some of that 4000kCal/week this way - a rowing machine seemed to let me generate similar power output that I do on a bike.

 

Sorry to but in. ... We're fairly new to all of this, my husband has been having his PSA monitored for 5 years & was only diagnosed with PC 3 weeks ago, how did you manage to lower your PSA levels, was it through HT alone? Thanks

 
Forum Jump  
12>
©2021 Prostate Cancer UK