External Beam RT and HDR Brachytherapy - my path

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

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).

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

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.

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

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.

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.

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.

Congratulations, Andy. 

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

Steve 

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.

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

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.

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

Good to see everything is going nicely.

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.

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.

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 👍

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

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).

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

Excellent 👍

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.)