External Beam RT and HDR Brachytherapy - my path

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

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

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.

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.

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.

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

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.

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.