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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 12 Aug 2024 at 11:39

Today marks my 5th anniversary of finishing radiotherapy.

PSA test a week ago was 0.03, and Testosterone which was above the normal range 6 months ago (which isn't great for skin complexion) has come down to 25.7 which is exactly the top of the normal range as advised by my lab.

Long term side effects are occasional minor rectal bleeding which has been going on for 4½ years now so I presume it's permanent, and a couple of cases in last 6 months of blood in semen and after peeing. Nothing impacting quality of life. Everything works perfectly. I consider myself very lucky.

My GP ran a health day for 100 patients on Saturday, and asked me to do 20 minutes talk on prostate health and awareness, which was a good experience. Another GP has me doing a longer talk in a few weeks.

 

Edited by member 12 Aug 2024 at 11:40  | Reason: Not specified

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 10 May 2022 at 13:42

Just had an oncology consultation 33 months after the radiotherapy, and 16 months after hormone therapy ran out. This was my first face-to-face consultation for over 3 years. Testosterone has stabilised around 19.5 and PSA crept up to 0.03 (it will almost certainly go higher). Consultant and I very pleased with results so far. As I said to him, I almost wouldn't know anything had been done. Still have rectal bleeding occasionally, but it's minor and painless and not a QoL issue. Had it checked by colorectal and they can see radiation proctitis (radiation burn to rectum). A few weeks ago, I got one of the NHS bowel screening tests in the post. I waited a few days until I'd had no visible bleeding and did it, and it's come back clear.

I now switch to 6-monthly PSA testing and consultations (although consultations have never managed to be that frequent even when they were supposed to be).

I had naively assumed the weight I'd put on during HT would roll off, but not a bit of it. Indeed it started to go up faster when Testosterone returned. So keeping a better eye on diet and doing lots more cycling now the weather is getting better. Not losing much weight as yet, but a noticeable reduction in body fat and increase in muscle, which is good.

Edited by member 10 May 2022 at 13:45  | Reason: Not specified

User
Posted 25 Jun 2022 at 02:41

My GP is starting to catch up with routine stuff like blood tests, and with them not having done one since a while before COVID (and not being able to see the copious tests the hospital has done during that period), they did a whole load of routine ones, some of which I'd never had before (HbA1c, Thyroid, B12/folate). I took the opportunity to ask for PSA and Testosterone to be added, which they did.

PSA has risen from 0.03 to 0.04 which is expected as my prostate wakes up after Testosterone returned.

I thought my Testosterone had settled at around 19.5 as last two readings were around that, but this time it's come back as 26.5 and flagged as above the normal range for my age. It's not much above the max limit they give (25.7), but can't help thinking that having a high Testosterone level is probably not the best idea after prostate cancer, and it might still be going up. This got me thinking, I've been taking small amounts of Tamoxifen (10mg every 3 days) to prevent gynecomastia which reappeared when my Testosterone returned. Could the Tamoxifen be raising Testosterone levels? Well, the answer would appear to be yes, according to the paper The Role of Estrogen Modulators in Male Hypogonadism and Infertility, although that would only apply if you aren't on hormone therapy (so don't worry about taking Tamoxifen if you're on hormone therapy). I finished on Tamoxifen 2 weeks before the blood test, but it takes longer than that for it to leave your system. However, I'd been on Tamoxifen for 2 months before the second of the "stable" Testosterone readings, and that one hadn't changed as a result of being on Tamoxifen. So I can't tell yet if the Tamoxifen after finishing hormone therapy has increased my Testosterone - I'll have a better idea if I get another Testosterone test in a few months.

I have no idea what my level was before hormone therapy, as it was never measured.

Good news was all the other blood test levels were in the normal range which is the first time since just before starting hormone therapy, except my kidney function which has always been slightly below par, but has not got any worse in the last 10 years so no one seems concerned.

Edited by member 25 Jun 2022 at 02:44  | Reason: Not specified

User
Posted 25 Jul 2023 at 16:25

Great news Andy. I definitely have sympathy for those in a worse position, but don't feel guilty, it's not like we kicked someone else out of a lifeboat on the Titanic to grab our own place. It's bad luck to get PCa and good luck to get cured.

Dave

User
Posted 25 Jul 2023 at 16:42

Please, nobody feel guilty! It’s too early for me to know what my future holds but what I DO know is that you guys that have been through it and come out the other end with positive conclusions keep me going and looking forward to the future with hope. This forum has been a fantastic support to me and helped me cope with this awful disease. I do feel compassion and sympathy for those who’s outcome is not so good, but it could be any one of us in the future, and this forum will help us get through whatever the PCa throws at us.

Good Luck to everyone of us…and for all those wives/partners of PCa who are members, I admire your bravery and courage to come on here and engage in the many discussions we have.

Derek

User
Posted 05 Jan 2024 at 14:38

I got an unexpected call from a urology consultant this morning. Apparently they have written to me to tell me there was a phone appointment, but I haven't received that letter yet. He just wanted to know how things were going and if there were any problems. They did this a couple of years ago too - I'm very impressed (even more so that it happened during a junior doctor's strike).

I mentioned the blood in urine and semen. I will be booked in for a flexible cystoscopy and ultrasound kidney scan, but as it won't be on the 2WW pathway (he thought around 6 weeks), I'm guessing he also thinks bladder or kidney cancer are unlikely causes.

User
Posted 22 Feb 2024 at 20:14
This is super news. I wouldn't worry too much about the increased risk of bowel cancer - it increases the risk such a small amount. The important thing is that as a man of a certain age, you have a risk of bowel cancer anyway and should engage with the screening programme when offered ... unless you have any symptoms, in which case you will act decisively and remind the GP of your pelvic RT if s/he prevaricates!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2025 at 12:02

My 6-monthly test scores just came in: PSA: <0.03, Testosterone: 22.9nmol/L (660ng/dL for US readers).
So, PSA has been hovering around 0.03/<0.03 for the last year. Testosterone is now normal. It was too high - no idea if that's a possible side effect of the ADT - I asked at UCLH and they'd never heard of that but they stop measuring when it reaches normal.

As mentioned 6 months back, I have been slowly trying to lose weight. No fancy diets, but avoiding meals when I'm not actually hungry, and more recently, having more fruit in the house for snacking, rather than biscuits. Some days ago, I dipped below 70kg (69.9kg), and today my body fat was the lowest level for 5 years.

Asked about the rectal bleeding again as I'd like another chat with colorectal, even though it's minor. I need to go back through my GP, which I will.

My GP has had me back to do two more Prostate Cancer awareness presentations for his patients, 100 at a time. At one of them which was specifically a male health event, I also covered the health implications of erectile dysfunction (it's an early warning sign for lots of potentially serious conditions), and that went very well. I was also quite chuffed to be asked to do an awareness talk for the local Kenyan society.

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.

User
Posted 30 Dec 2021 at 19:31

Had another PSA/Testosterone test a couple of months after the last. Testosterone has doubled from almost 10 nmol/L to almost 20 nmol/L, and PSA is now detectable at 0.02 for the first time since RT treatment (not a surprise as I still have a prostate - I expect PSA to rise). This test wasn't really clinically indicated, but because I have been accurately graphing my Testosterone and PSA as I've come off hormone therapy, the urologist was just as interested as me to see how it was going. I think it was a bit of a surprise to him that nothing happens for months after the HT runs out, and then it can come back quite suddenly. So, I think that my Testosterone has gone from nearly nothing to normal levels in about 3 months, starting 9 months after last HT injection ran out. During those initial 9 months, Testosterone had remained at nearly nothing.

I have no idea what my normal Testosterone level is, as it was never measured before HT. That means it might still go up further (not much more I hope!). I don't yet have body hair back, although things like that probably take time. Having said that, I never completely lost it, and it's not easy to tell if what remained might be getting slightly more now. My beard is growing faster - back to twice weekly trims rather than every 2 weeks during HT.

User
Posted 30 Dec 2021 at 21:33

Thanks for the update Andy. As you know my testosterone followed a similar path, about nine months of nothing then a rapid rise. Neither of my testosterone tests were clinically indicated, my GP thinks the hospital ordered it the hospital thinks the GP ordered it. I know that I ordered it. Anyway as mine leveled out at just under 20 I won't order any more.

Dave

User
Posted 01 Jan 2022 at 18:40
Jules about recovery after HT etc. I was on Zoladex for 3yrs included in that was 2yrs via trial with abiraterone, enzalutimide and prednisolone. HT finished summer 2018 and I have to say think I had most of potential side effects - hot flushes, big weight gain mostly around stomach, muscle loss, strength loss, emotions to pot, loss of all body hair etc etc. I was pretty active, not overweight etc and tried best to carry on some exercise throughout.

It's been said a few times on this forum that recovery from side effects can take as long as treatment lasted and that was practically the case with me. Although I gradually got fitter, leaner etc think it was only half way through 2021 I felt anything like I did, can do most of what I want now. Weight was a big emotional thing for me, rightly or wrongly, I've just got a few kgs to go to get back below 70kg from 'worst' of 83kg.

But I'd go through it all again if needed, it's done its job up to now.

Peter

User
Posted 11 May 2022 at 08:52

Andy62 

Good to hear things are going well, hope it continues for a long time.

Thanks Chris

 

 

 

User
Posted 26 Jun 2022 at 02:19

Good to see everything is going nicely.

Dave

User
Posted 25 Jul 2023 at 15:40

Great news Andy long may it last,I am at 6 years ten months with a PSA test due next month.I feel the same as you with guilt about doing  so well and having so little problems over the years.

I still sign in every day to offer advice to  members that have or are thinking about brachytherapy.

John.

User
Posted 25 Jul 2023 at 16:12

I too suffer from survivor's guilty as you put it. You may have noticed I am quite active and every now and then I respond to any questions men/wives/partners ask about prostatectomy and living with its side effects. My wife and I feel that we have been extremely lucky to have survived and still enjoying our life together following surgery over 12 years ago. My wife always edits my writing before I post a message and makes sure that it has the right tone. When I was diagnosed robotic-prostatectomy was in its infancy and there was very little help before and after my treatment. My surgery lasted over 6 hours and very difficult and the recovery wasn't any easier. Facing this disease can be a very lonely business and forums like this provides a comforting place to talk to one another.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 25 Jul 2023 at 16:36
Bravo!

Try to avoid the survivors' guilt thing - you were there in that situation and now you give back ten-fold. If anyone should feel a pang of remorse it is the person who recovers from a life threatening situation and then causes only harm to others with their life.

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

User
Posted 26 Jul 2023 at 02:11

Thanks for posting your ongoing good news Andy. Roughly in sequence Dave, you, gaz and myself have successfully gone through RT, in slightly different forms, and come out the other end with results that indicate we have a good chance of staying cancer free for many years [or more :-)].

If results like yours and this thread encourage people who have doubts about having their cancer treated, then you can give yourself a pat on the back and try to get rid of that guilt :-)

Jules

User
Posted 26 Jul 2023 at 09:56

Great post really pleased for andy but I also suffer with guilt I know where he is coming from and the fear off reaccurance never goes away I am a shadow off the person that was diagnosed a few years ago but try to carry on the best I can in the circumstances but it has been really challenging I really salute those like Phil and others that are constantly battling this horrible desease they are the real heroes gaz 👍

User
Posted 31 Dec 2023 at 09:34

4½ years after RT, I found myself peeing blood. It wasn't fresh blood (not bright red) and it only happened once. I have some dip sticks at home and so next time I peed, I tested it, and although it looked fine, the dip test did show microscopic blood. Tested again next day, and no blood. Obviously, this is not unexpected after RT, but not having happened since the RT (and back then it was microscopic), it was a bit of a shock.

A few days later, I ejaculated for the first time since then, and stale blood in that just like after a biopsy (but not as bad), and has been for a week or so since, although it's become more diluted since. No more in urine. So it looks like the blood came from my prostate. It would be more worrying if it came from bladder or kidneys, but that doesn't seem to fit with the symptoms.

I'm due a oncology consultation in a month's time, so I'll mention it then.

Interestingly, 4½ years after RT is the peak incidence of late onset rectal bleeding. As you may recall, I've had that side effect since 5 months after RT, although minor and no impact on QoL, so it's never bothered me. Ironically, over the last few months, that's been diminishing and is now only happening about once a week (and so far this week, not at all).

Edited by member 05 Jan 2024 at 14:44  | Reason: Not specified

User
Posted 31 Dec 2023 at 10:12

Morning Andy

I hope whatever the cause, its easily sorted out. Having taken the surgery option, I have no idea of the side effects you lad's who had radiotherapy, suffer from.

I just wanted to wish you well. You've been a great help to me.

Adrian

Edited by member 01 Jan 2024 at 08:36  | Reason: Typos

User
Posted 31 Dec 2023 at 12:44

Thanks Dave, that does sound similar to my case.

I'm aware even a single incident of blood in urine should result in a 2WW, but I think I narrowed it down to the prostate rather than bladder or kidneys, which is not so worrying, or surprising, so I'll wait until my next oncology consultation as that should be in about a month. I'll be doing a PSA test before that, but will try to get things flushed out first so I can tell is it's still bleeding when I have the PSA test, which I guess might impact the result. Flushing things out is definitely not as effective as it was prior to treatment. I had that also with my second biopsy which was after I'd started HT, and couldn't really get the blood out of my prostate, and as a result, a blob of iron oxide (from the breakdown of the excessive blood) showed up brightly in my prostate when I had a full body MRI a few months later (shows up well because it's magnetic).

Edited by member 05 Jan 2024 at 14:40  | Reason: Not specified

User
Posted 14 Jan 2024 at 19:00

Ultrasound appointment has come through for end of the month. Still waiting to hear about flexible cystoscopy appointment (hope the letter arrives before the appointment this time!).

Symptoms were getting worse, more blood, urgency, only peeing a bit, wondering if I was going in to retention. The visible blood wasn't in the urine though - it seemed to appear in response to my body involuntarily closing the internal urinary sphincter, together with a good deal of the pain. I eventually decided I wasn't going in to retention - quite the opposite in that as soon as there was a small amount of urine in the bladder, the urgency to empty it kicked in.

Asked GP for Tamsulosin and a urine test - got both. Urine heavily infected - to some extent that was a relief to at least know what part of the cause was. Nurse said infection could be the cause of all the symptoms, but also I think the infection might have been caused in part by some internal damage from radiation cystitis, so I can't really tell which way around things happened. 2 days into the antibiotics, the visible bleeding has stopped, although a home dip test still shows lots of microscopic blood and protein in urine, which is a sign of cystitis according to the nurse, given I don't normally have either in my urine test results. On the plus side, not showing infection markers any more. Still pain and urgency, but I guess things may have got quite raw in there from the infection and still need to heal. Too painful for a cystoscopy at the moment, so I'm pleased that appointment hasn't come through yet. Drinking lots including lots of sugar free cranberry juice in case it helps (and I do quite like it).

User
Posted 22 Feb 2024 at 15:26

My next 6-monthly PSA test has just come in at <0.03. It's been 0.04 for the previous couple of years during which I haven't been on HT, my Testosterone has been back (and rather high), and I still have a prostate. I'm surprised that 4½ years after external beam and HDR brachytherapy, it's gone down even further - I was expecting it to go up slightly, if anything. Actually, I think this change might be due to a change of lab test equipment or assay (chemicals the tests use), because the lab now measure down to 0.03, whereas it used to be 0.01, and <0.03 is not really significantly different from 0.04 I've been for a couple of years before.

Testosterone has gone up, from 20.9 nmol/L a year ago to 28.8 nmol/L, which is now above the normal range (25.7 max at my age). It doesn't seem to have had any bad effect on PSA though. It was above the max level 18 months ago too.

The peeing blood at Christmas is being investigated. Ultrasound scan was OK, but cystoscopy wasn't, probably due to still healing from a UTI, but it will be repeated in 4-6 weeks to check things again. I asked for another consultation with colorectal too, to talk more about minor rectal bleeding which I've had for 4 years now. It's not really causing me a any problem, but what do I do about bowel cancer screening (given I'm now at higher risk), and is there any other implication of this continuing indefinitely or something I should be doing?

Edited by member 22 Feb 2024 at 15:27  | Reason: Not specified

User
Posted 22 Feb 2024 at 15:44

Great news Andy, I hope my outcome is as good as yours….and I can’t wait to get the old testo back🤞

User
Posted 22 Feb 2024 at 15:52

and I can’t wait to get the old testo back🤞

I miss my Testo soo much. Gone forever and I didn’t really get to say goodbye 😪

Edited by member 22 Feb 2024 at 15:53  | Reason: Not specified

User
Posted 22 Feb 2024 at 17:33

Excellent 👍

Dave

User
Posted 12 May 2024 at 00:18

Had a flexible cystoscopy on Thursday, my second one in 3 months, and actually my third in total (the first being during original prostate cancer diagnosis nearly 6 years ago).

This was kicked off by peeing blood at Christmas. Actually, the blood was immediately after peeing - it didn't seem to be in my urine. Then it was in semen too. Being around Christmas/new year, I was wondering what to do about it. Then bizarrely, I got a call out of the blue from a urology consultant who asked me how I was doing. I'm under oncology, not urology, so this surprised me on many counts. Someone jokingly suggested my toilet must be connected via the Internet back to the hospital! He said he'd bring me in for ultrasound scan of upper urinary tract (I know that's to check for any cancer or other problem with kidneys/upper urinary tract) and a flexible cystoscopy (that's to check bladder/lower urinary tract). I wasn't referred on a 2WW, but did get the ultrasound quite quickly, which was all clear.

Then I got a UTI, although it took me a while to realise the increasing pain and urgency might be that. I do have a tub of the Multistix dip tests at home which would have told me instantly, but I was not at home for a week when it happened. Got a GP nurse appointment last thing on a Friday which I rushed back for, which showed a UTI, and immediate antibiotics prescribed, which fixed it, although it did turn in to prostatitis for a couple of days before it completely went. A UTI causes positive leukocyte/nitrite dip test results, but usually also causes positive blood and protein in urine by the time it's bad enough to notice you have it, which indeed mine was. I monitored this with periodic tests, and the leukocyte/nitrite test went negative quickly showing the infection had gone, but the blood and protein took a month to clear as tissue damage heals more slowly.

My flexible cystoscopy came through the day the protein level went negative and blood level was down to the lowest detectable on the dip test. The cystoscopy showed my bladder was quite a mess with loads of large red blotches (which definitely weren't there nearly 6 years ago). The urologist was clearly thinking bladder cancer and said it looked worse than is typical for radiation cystitis (which I also guessed wouldn't be all around the bladder), but I was thinking scarring from the recent UTI. Urologist wanted to book me straight in for a rigid cystoscopy under general anesthetic to take biopsy samples. I wanted to wait a bit longer for the UTI scars to heal if that's what it was, so he agreed to do another flexible cystoscopy in 4-6 weeks. The followup letter suggested the MDT (who I presume must have watched the video later) didn't think it looked like bladder cancer.

The 4-6 weeks became 3 months, and a different registrar did it on Thursday. Getting rather used to these now, I asked if she could give a commentary on where we were looking, which she did. Bladder was now completely clear of the red blotches, and looked fine. There wasn't even any sign of radiation cystitis in it (and I've never had any symptoms of that). I think she took me on more of a tour around because I asked for a commentary, which was very interesting, pointing out the bladder neck looking back from inside the bladder, the ureters, the inside of the prostate, etc. Although I have a large prostate (it was 93cc and 97cc on a couple of the early scans), the urethra through it isn't occluded, but does have lots of exposed blood vessels. I think this is where the bleeding was coming from, in which case it's of no significance (or surprise) after radiotherapy. My urethra is narrowed in the penile bulb where the HDR brachytherapy catheters passed through, but no scarring, so it might not be an active stricture, but something to keep an eye on if my flow rate reduces. She had to dilate it a bit to get the camera through. That stricture was probably caused by the HDR brachy, because that wasn't there before treatment.

Anyway, no further followup required, unless I notice my flow rate reduce.

User
Posted 12 May 2024 at 09:20

Hello JasperM

I couldn't see if you maintain a treatment thread, and searching isn't good on here. I just read through your profile. You had one bone met at diagnosis. What scans showed this, just a nuclear bone scan? On one hand, that's not surprising with an N1 diagnosis. On the other hand, nuclear bone scans are now known for generating false positives when reporting only a very small number of bone mets, but I don't think this was known in 2018. If no other scan has ever confirmed that met existed, it might just be that it wasn't really a met in the first place. Also, if they targeted that met during the radiotherapy, that could have cured it. Either of these could mean you aren't Advanced/Stage 4 now, and don't have to stay on hormone therapy for life. Definitely something worth discussing with your oncologist - maybe you could try intermittent hormone therapy, which if the current treatment has actually effected a cure, you'd never need to restart. I don't think the risk in trying this is high, but again, that's a question for your oncologist.

You also mention T4, which means the tumour has grown (rather than metastasised) out of the prostate into another adjacent organ, but you don't say what that is. (T4 is not the same as Stage 4; Stage 4 means M1.)

User
Posted 25 Nov 2024 at 10:06

Hello Andy,

Firstly thanks for posting your journey! I read it a couple of weeks ago and on the back of it ordered some daily tadalafil tablets whilst waiting for an appointment (there is a long waiting list) at the hospital to discuss the ED issues I'm having.

It's made a huge (no pun intended) and noticeable difference. I had tried Viagra which was disappointing, but didn't realise there was an option to have a daily dose of an equivalent. I had been really worried about atrophy.

I'd also not realised this was something I could possibly get from my GP, until recently I'd never really been to the doctors so I'm a bit ignorant of what I can and can't ask for, still don't actually know if I have a doctor assigned to me. Anyway I assumed I was under the care of the hospital and so all matters related to my treatment would come through them.

Anyway, thanks again, I hope I can get the tadalafil on prescription going forward as it's quite pricey!

 

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

 
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