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External Beam RT and HDR Brachytherapy - my path

User
Posted 16 Aug 2019 at 23:18

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

User
Posted 17 Aug 2019 at 03:58

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

 

 

User
Posted 17 Aug 2019 at 07:59

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

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

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

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

User
Posted 17 Aug 2019 at 22:09

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

 

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

Barry
User
Posted 17 Aug 2019 at 23:19

Ross,

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

 

User
Posted 18 Aug 2019 at 12:01

Originally Posted by: Online Community Member

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

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

Cheers,

Chris

 

User
Posted 18 Aug 2019 at 19:08

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

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

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

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

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

User
Posted 22 Aug 2019 at 17:47

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

User
Posted 22 Aug 2019 at 18:57

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

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

User
Posted 26 Aug 2019 at 01:57

Originally Posted by: Online Community Member

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

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

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

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

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

 

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

User
Posted 26 Aug 2019 at 08:35

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

Debbie,

Yes. Prostate normal growth and function is driven by testosterone, and initially prostate cancer is driven the same way by testosterone. Hormone therapy stops testosterone (either by preventing production, or by preventing use, depending which drug used). This stops the prostate working, and prevents normal prostate cell growth (and often causes prostate shrinkage), and usually (although not always) stops cancerous prostate cell growth. A side effect of this is PSA produced by both normal prostate cells and cancer prostate cells falls.

However, this is not a cure for prostate cancer. A small number of prostate cancers can continue to grow without testosterone, but if you remove testosterone, eventually all prostate cancers will mutate to continue growing without testosterone.

So hormone therapy is used in two ways:

1.      To add to another treatment (usually radiotherapy) to prevent prostate cells from recovering between each radiotherapy session, whereas other cells hit by the radiotherapy (such as urethra, urinary sphincters, bowel/rectum, bladder, lymph nodes) are unaffected by the hormone therapy and get to recover much better than the prostate cells between each radiotherapy session.

2.      For people who are not regarded as curable, hormone therapy is the first of many stages used to slow the progress of the cancer to give them an increased life expectancy. Typically, it adds something between 2 and 10 years.

I was fortunately in position 1.
Two research papers show that if you can get your PSA down to < 0.1 before starting radiotherapy, the outcomes are significantly improved, so this is what I was aiming to do. My oncologist supported me in this, although it's not something they normally do by default. So I delayed my radiotherapy by 8 weeks. In the event, my radiotherapy started a week earlier than I was expecting, and I got my PSA down to 0.12 immediately before the first RT session, but I was well satisfied with that, versus the PSA 5.29 which it was when my radiotherapy would have originally been booked. There is a danger in postponing the RT, in that your PSA may stop lowering and start increasing, and then your outcome is not as good. My oncologist had had some patients who had tried this before, without success (PSA started rising before ever getting that low). I took the view my PSA was falling very rapidly on HT with no sign of plateauing, and it was therefore likely to continue falling rapidly over the next 8 weeks. That paid off (see PSA figures in my profile). I'll never know what impact it had on the outcome whichever way it goes, but it's one of the things I've done which I hope improve my chances.

Edited by member 26 Aug 2019 at 08:42  | Reason: Not specified

User
Posted 26 Aug 2019 at 10:19

Update 2.5 weeks after end of EBRT and 2 weeks after HDR Brachytherapy.

Number 2's (impacted almost entirely by EBRT, and not significantly by Brachytherapy)... Stools now back to firm, but smaller than normal (exactly what they said would happen). No blood for a week now (although I'm not to be surprised if I do get more for up to 6 weeks). Passing less than normal each time, but going more often, and no urgency. I never experienced incontinence or unsafe farts (accidentally releasing something other than gas), which were both listed as highly likely side effects. I've been on a no fibre diet (excluding the broccoli incident) for about 6 weeks, but just started trying a little fibre (e.g. a slice of brown bread yesterday, and normal breakfast cereal) without any bad effects so far.

Number 1's (impacted by both EBRT and Brachtherapy). Peak flow rate varies between 5 and 13ml/sec on different occasions - this is mostly due to the brachy, as it was between 13 and 24ml/sec in between the EBRT and the brachy. (Normal is about 25ml/sec.). Incontinence was short lived just after the brachy, and was always whilst on the way to the loo (finding you'd started peeing about 10 seconds too soon). Still have this feeling, but can hold it with pelvic floor muscles. Bladder capacity up to 360ml now (was 100ml just after brachy, but not yet back to the 640ml near beginning of EBRT. Still leaking small amounts of fresh blood and clear fluid continuously from urethra necessitating a pad - I think this is from the prostate as it smells like semen (not a smell I've otherwise experienced for some months due to HT) and bears no resemblance to urine.

Last night was first night I didn't get up for a pee during the night. Part of this will be because I was out during the evening, and didn't drink the excess amount of fluid I've been deliberately drinking during and since the treatments.

Erections - perfectly fine during and immediately after the EBRT. After the brachy, the mechanism still works naturally, but painful due to scarring of urethra which doesn't stretch to match erect length of the corpus cavernosums (the erectile bits). I'm imagining this may be similar to what someone who's had a prostatectomy and shortened urethra might feel? Urologist said I'm expecting too much too soon and prostate, urethra, and penis bulb will still be heavily inflamed for some weeks, which is likely restricting movement. There is a known risk of shortened erections after HDR Brachy, but it's far too soon to tell.

Edited by member 26 Aug 2019 at 16:00  | Reason: Not specified

User
Posted 26 Aug 2019 at 18:11

Originally Posted by: Online Community Member

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

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

I am very grateful for that Andy, thank you. I think I've been very lucky so far, just hope it stays that way. I have much more crossed than just my fingers!

User
Posted 18 Sep 2019 at 23:40

Back in July, I mentioned that I built myself a urine peak flow meter, based on a Raspberry Pi. This was to keep an eye on how treatment was impacting my peak flow rate, which I'm still monitoring during my recovery. (You might recall, I try to measure everything as part of monitoring my treatment.)

Today, at The FOPS support group meeting in ****, in a discussion about my treatment, I mentioned that I was measuring my peak flow rate, and showed the peak flow meter. ***** **** (Consultant Urological Surgeon at Mount Vernon and other hospitals) tested it with ***** **** (Consultant Urological Surgeon at UCLH, and other appointments), by slowly pouring a glass of water into it, and it worked very nicely. They were very impressed. Needless to say, this made my day!

 

Edited by moderator 19 Sep 2019 at 00:41  | Reason: Privacy

User
Posted 19 Sep 2019 at 14:51

Update 6 weeks after end of EBRT and 5.5 weeks after HDR Brachytherapy.

Just had my 6 week followup call with urology consultant.

Still on low fibre diet, but the end may be in sight. Last week, tried a portion of peas, which took me back several weeks progress to diarrhea, fortunately just for the following day. Tried again earlier this week, and it was OK. Next day I was at an event where the food was all vegan (pretty much all fibre), and I ended up eating quite a bit. The day after that was uncomfortably bloated, but not bad diarrhea I might have expected.

For peeing, still need a pad during the day, but there's much less in it now (two days ago, almost nothing). If I'm doing sport and the dangly bits might be bouncing around, I use a men's Tena level 2 pad, which has far more absorbancy than I need, but a large surface area and I bought several boxes of them early on which I might as well use up. If I'm not doing sport, a female sanitary pad is fine. No visible blood anymore, but a dip test still shows microscopic fresh blood present, and peeing still stings, I think as a result of the catheter UTI I got in hospital (dip test says no infection now, although they're not 100% accurate for a negative test). Peak flow rate 12-13ml/sec (half what it was before treatment), not showing much sign of further improvement, but perfectly livable.

Erections - the shortening of the urethra due to HDR (the brachy tubes go in through the penis bulb, and it gets some radiation dose) would seem to be mostly temporary in my case (it can be permanent in some cases). It initially caused 18mm shortening of erections, but that's now down to 2mm shortening and still improving. Stretching of the urethra during erections is still painful, but less so than before. (I discussed this in the open session at The FOPS support group meeting yesterday, in case any readers were there and think this sounds familiar.) Consultant checked that I am achieving regular erections given loss of libido, and to use erotica/porn if necessary to do so.

Next consultant followup is in 12 weeks, which will also be first PSA test after the radical treatments.

User
Posted 14 Oct 2019 at 01:07

Update 9 weeks after EBRT and HDR Brachytherapy.

A couple of recovery milestones...

Managed without pads for the first time this weekend, albeit mainly at home, but walked to the shops a couple of times. I wouldn't yet risk cycling in white shorts without them! Also occurs to me that I haven't been doing PFE for a while (although I did during treatment), but I do have to consciously use PF muscles to hold off until I'm ready and aiming at the toilet - my body usually wants to start about 10 seconds too soon (which I presume is weakened internal urinary sphincter relaxing too soon).

Also managed a number of nights recently without getting up to pee, and when I do have to get up to pee, it's always a substantial amount (i.e because I drunk a lot). No further improvement in peak flow rate though.

User
Posted 17 Nov 2019 at 11:10

Update 14 weeks after EBRT and HDR Brachytherapy.

Was going to wait for my 3 month followup appointment before next update, but that's been pushed out to 4½ months, and a couple of people asked me if there's any more news. The 3 month followup is not time critical, although it means I haven't got my first post-treatment PSA test done yet - I have the form to get it done, but I'll probably wait until the week before the appointment.

I stopped wearing pads completely just after my last update. I see staining evidence of one or two drips in my underpants at the end of some days, but not enough to go through the two layers of fabric in Y-fronts or to smell - just needs clean pants every day. Dip test no longer shows any blood in urine. Flow rate never recovered but is not a problem. No longer getting up to pee at night.

Bowel had got pretty much back to normal on the low fibre diet I'd been on since halfway through EBRT, and I was tending to forget the low fibre diet. That has brought back the wind and excess mucus (but not diarrhea) and going many times a day (basically, almost every time I go for a pee).

My oncologist and urologist both expressed some surprise in the past that I've not suffered any reduction in length/girth/hardness of erections after a year on HT. Oncologist said I probably would as a result of the HDR brachy, and I did temporarily, but it's almost back to before (sometimes it's completely back, sometimes it's just a few mm shorter). As I've mentioned on this forum many times, it's very much a case of use it or lose it, and, difficult as it is with no libido, I've tried to keep using it. However, when the urologist was going through my sexual health after the EBRT and HDR treatments, he thought I wasn't using it enough to maintain this, and booked me in for an ED clinic session. He apologised it would not be for 3 months, but also said you really don't want to have one within 3 months of the HDR to allow time for healing, and he was absolutely spot on with that.

So last week, I had my ED clinic appointment, which turned out to be two appointments when I got there, ED clinic, and Pump clinic as it's apparently known. The ED nurse was also surprised I'd had no permanent erection damage after a year on HT, and praised my GP for prescribing daily tadalafil. I spent most of that appointment getting her to review my presentation notes on ED treatments for PCa patients on HT and following RP, which she was really happy to do. The urologist who referred me had already said (unknown to me) that I should be given a pump to achieve erections for longer.

The pump clinic was a pleasant surprise, as I had not been expecting that. It's run by the company who make them (SOMAerect), with a representative to explain and demonstrate. He also had a young new guy on his first day training who sat in - I immediately noticed the new guy had a PCUK "man" badge on, as did I - apparently his father has PCa. The representative asks me questions about changes to penis during treatment, and is also surprised there are none - he says only 1% of people don't suffer permanent erectile damage after a year on HT (he's a salesman, I'll take that as a compliment, but not a piece of clinically researched data). Anyway, he asks if I want to try it out now, and I do. (I've read the research which shows people who try it in the outpatient setting are twice as likely to benefit from it as those who don't). We go though simple pumping, and using single and double constriction rings. It is much more comfortable than the sex shop one I bought off Amazon, which was far too uncomfortable to use. In particular, the SOMAerect doesn't tightly grip the base of the penis, unlike the sex shop ones. He draws up the prescription advice note, which tells the GP how to fill out the prescription and what size and extra parts I need. He noted I'm on daily tadalafil, and pointed out that erections I get from that are more effective than a pump, and I must not swap tadalafil for the pump if tadalafil is working, so if GP will only do one or the other, stick with the tadalafil. That was interesting advice - the tadalafil is working, but loss of libido means I'm not doing it often enough or for long enough according to both urologist and SOMA representative. I decided I'll buy the pump myself if there's any risk of losing the tadalafil, although you can't actually order the combination of parts I would get on prescription from them directly.

Anyway, back to the GP. I pass on the praise for prescribing the tadalafil from two ED clinic nurses and the Pump guy. GP says he always does - he knows it makes a significant difference which is why he put me on it the moment I started HT, and yes I can have the pump too. So now just waiting for it to arrive.

User
Posted 13 Dec 2019 at 21:53

Just had my 3 month post radical treatment telephone consultation. It's actually 4 months, as they were booked up. Had to get a PSA test beforehand, the first since radical treatments, and it came back as <0.01 which is very pleasing. HT had brought it down to 0.12 and still falling just before the radical treatments, and if the rate of fall under HT alone continued, it would be <0.01 by now anyway, so I'm not sure this really says anything much about the effectiveness of the radical treatments. That won't be known until I come off HT and see how much it rises.

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 15 Dec 2019 at 04:07

Hi Andy, 

Great news.  Just what you wanted to hear.  An early Christmas present. 

Hoping to go to the Macmillan gym class on Wednesday, see you there?

Hoping to finally exchange contracts on our house move by then but probably won't move until after Christmas. 

Steve 

 
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