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

Notification

Error


External Beam RT and HDR Brachytherapy - my path

User
Posted 21 Jul 2019 at 20:05

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

User
Posted 23 Jul 2019 at 23:19

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

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

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

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

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

User
Posted 25 Jul 2019 at 23:52

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

Ha!

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

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

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

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

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

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

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

User
Posted 26 Jul 2019 at 18:45

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

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

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

User
Posted 08 Aug 2019 at 19:31

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

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

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

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

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

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

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

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

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

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

Hope the Brachytherapy goes well.

User
Posted 08 Aug 2019 at 21:41

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

Good luck going forward with the brachytherapy.

Ido4

User
Posted 12 Aug 2019 at 07:19

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

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

User
Posted 14 Aug 2019 at 19:23

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

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

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

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

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

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

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

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

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

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

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

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

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

User
Posted 15 Aug 2019 at 14:29

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

User
Posted 15 Aug 2019 at 18:21

Peter,

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

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

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

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

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

User
Posted 16 Aug 2019 at 05:40

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

No - I'd never heard of him.

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

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

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

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

User
Posted 16 Aug 2019 at 11:18

Lynn,

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

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

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

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

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

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

User
Posted 16 Aug 2019 at 19:20

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

User
Posted 16 Aug 2019 at 22:32

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

From Prime

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

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

Barry
 
Forum Jump  
©2025 Prostate Cancer UK