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External Beam RT and HDR Brachytherapy - my path

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 

User
Posted 15 Dec 2019 at 09:29

Thanks very much Steve.

I've got the Mount Vernon Hospital support group meeting on Wednesday. In theory it's just about possible to do both if it finishes on time and no traffic on the M25, but that's never been the case so far.

If you want a hand moving, let me know when you have a moving date, and have a good Christmas if I don't see you beforehand.

User
Posted 21 Jan 2020 at 18:43

Thought I'd do a minor update at what's just over 5 months after the EBRT and HDR Brachy.

I haven't eaten any broccoli for 6 months (almost to the day), following the broccoli incident during my RT. It's one of my favourite vegetables. Last week, I had a cauliflower cheese (first time since treatment) in a restaurant, and that went OK, so yesterday, I chanced half of a very small broccoli. Well, that's taken me right back to the mucous and blood when I last had one, during the RT, something I've not seen for months. Oh well.

On the plus side, my urine peak flow rate which halved after the EBRT and HDR, and had not changed since, started slowly rising over last couple of weeks. Wasn't expecting that so long after the procedures.

User
Posted 21 Jan 2020 at 19:23
Good that you know what not to eat but be aware that mucus can occasionally be experienced for many months after RT.
Barry
User
Posted 04 Apr 2020 at 15:06

Minor update.

A week before my 6 month review (at 7.5 months), erections, which has been working fine all through treatment (except just after the HDR bracky) suddenly got less effective. A couple of days later out of the blue, one of the urology consultants called me to ask how I was doing - perfect timing. He said the erection issue was almost certainly late onset radiation damage to blood vessels, and to try 100mg sildenafil. Somewhat to my surprise, that worked perfectly, phew! My GP prescribed them the next day. I'd had a PSA test test done earlier that day in preparation for my consultation the following week, but didn't have the result yet.

I called the hospital about my oncology appointment, and they said if I hadn't heard anything, it was still on, so I went in, to find the department empty, and no oncologist. Waited in the empty waiting room in case my oncologist called, but he didn't, so I left. Half way up the road, I got a call from another consultant urologist filling in for my oncologist, so I ended up having another conversation about erections and sildenafil in the middle of a residential road while sitting on my bicycle. I could now give them my PSA, which came back same as last time, <0.01 which he was very pleased with. However, one of the things to be discussed at this meeting was my duration on hormone therapy, and the urologist didn't know, so he's pinged my oncologist and suggested I ask for another appointment in 4 months time.

So a bit disappointed I didn't get to talk with my oncologist, but the out-of-the-blue call from a consultant urologist was bloody wonderful, as I didn't think I'd be able to get any support for that problem so quickly, but in practice it was fixed in days.

User
Posted 04 Aug 2020 at 23:54

Had my 12 month followup today with my oncologist. (The 9 month one got skipped due to slippage of all the ones beforehand.) It was a video call. I much prefer face-to-face consultations to phone consultations, but the videocall was pretty close to face-to-face in feel.

He's pleased my PSA has been undetectable since the EBRT and HDR Brachy, and said I can come off the hormone therapy any time I want now. I've been on Zoladex for almost 18 months, and I'm not having bad side effects. I already have my next injection for 8 weeks time, and decided I'll do that one for luck, then I'll stop.

Some painless rectal bleeding had started 5 months after treatment. Urology had told my GP to do a 2 week referral to colo-rectal. I discussed with GP at the time. It was peak COVID, a year before diagnosis I'd been pulled onto a trial of men who have their age 55 bowel screening as a full colonoscopy rather than a poo on a lollipop stick, which was completely clear, and you don't get bowel cancer from radiotherapy in 5 months, so it was most unlikely to be bowel cancer - we decided to defer it. I put this to the oncologist today and he agreed with me. As it happens, the bleeding stopped 4 weeks ago, but he said it might well come back.

So that means all the side effects of the EBRT and HDR Brachy have just about worn off. I even managed a portion of broccoli a couple of weeks ago for the first time since treatment, without the previous rear end explosions.

So, all in all, very pleased at the moment.

I've also been doing lots of presentations to local support groups, and one-to-one support, and I find this work really rewarding. Consultant was encouraging me to restart the half day Surviving Hormone Therapy group sessions I had been running at Mount Vernon prior to COVID (but over Zoom instead).

User
Posted 05 Aug 2020 at 08:15
Great news - congratulations
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Aug 2020 at 08:23

Hi Andy, 

Really great news on your progress.

Also a big thank you for the support work you do, and especially for taking the time to telephone me when I was at a low point post op. 

Best wishes. 

Kev.

User
Posted 05 Aug 2020 at 08:45

Great news. Interesting to read about the support work you do too, fantastic.

 

Ido4

User
Posted 05 Aug 2020 at 13:58

Congratulations, Andy. 

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

Steve 

User
Posted 05 Aug 2020 at 15:24

Thanks Steve and everyone else.

I do struggle with good news - everyone deserves to have good results.

It's a bit like a game of snakes and ladders. Still plenty more snakes out there to step on...

User
Posted 06 Aug 2020 at 07:40
Excellent news Andy and thanks for all the help you give to others

Cheers

Bill

User
Posted 21 Aug 2020 at 14:15

Just been reading what you said at the top of page 2 Andy, about getting your PSA down as low as possible before starting RT. My GP surgery never said anything about this and nor did my Oncologist! In fact due to the old virus, my surgery really didn't want me anywhere near them, even though my Onc really wanted me to have a PSA test prior to beginning RT. Thankfully I eventually forced them to do me a test 14 days before it started. This result was 2.9, which was a lot better than the start of the year, when it was up at 9.0, but still not good enough. I've had another test since RT finished, (ordered by the surgery at the same time as my yearly diabetic review) and that came back as 0.1, thankfully, so I really hope it stays down there! I'm still on the HT too of course.

My Oncologist is speaking to me over the phone, rather than a face to face on September 18th. So I'll try to have another test (which he requested and gave me a form for) before then (if the surgery will allow it). Here in the East, we don't seem to have the same level of care from the hospital staff as everywhere else, (according to this site). I didn't feel lost or anything when the treatment was over, but was just really glad to get the hell out of there! It's all more regimented at my hospital, (go there, sit here, do this, do that! So I definitely wouldn't miss that). The side effects started reducing within one week of my treatment finishing thankfully, but hope the higher PSA at the beginning doesn't mean anything bad!

User
Posted 21 Aug 2020 at 15:09
I don't think it will affect your outcomes Ross - most oncos go for a set period of time on HT prior to RT (3 months / 6 months / 9 months) and I had never seen any comment or guidance about getting it below 0.1 until Andy posted it on here so it would be interesting to know where that comes from. NICE simply says that men with intermediate or high risk PCa should have 6 months HT before, during or after the RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Aug 2020 at 17:33

Lyn,
Looking back at my notes of the time, here are some of the relevant research papers I read, and discussed with my oncologist (he was aware of them too anyway). They aren't fresh in my mind now, so I'd have to go through them again if there are any questions. The first two, if I recall correctly, suggest aiming for 0.1, and if achieved the benefits are such that adjuvant HT is no longer needed (although my onco took the view you do it anyway, and get further reduced chance of biochemical recurrence, but he's let me stop early on the basis of achieving low pre-RT PSA nadir and undetectable since). The third is based around reaching a pre-RT nadir of 1.0 with a slightly different stance.

Neoadjuvant hormone therapy and external-beam radiation for localized high-risk prostate cancer: The importance of PSA nadir before radiation
Improved bDFS in patients with high-risk prostate cancer was associated with lower initial PSA level, lower Gleason score, and lower preradiation PSA level. The duration of NAHT did not have an impact on outcomes, but the preradiation PSA was an important predictor of bDFS in high-risk patients.

Extreme-risk prostate adenocarcinoma presenting with prostate-specific antigen (PSA)>40 ng/ml: prognostic significance of the preradiation PSA nadir
In prostate cancer patients with high presenting PSA levels, >40 ng/ml, treated with combined modality, neoadjuvant ADT, and RT, the pre-RT PSA nadir, rather than ADT duration, was significantly associated with improved survival. This observation supports the use of neoadjuvant ADT to drive PSA levels to below 0.1 ng/ml before initiation of RT, to optimize outcomes for patients with extreme-risk disease.

Failure to achieve a PSA level <or=1 ng/mL after neoadjuvant LHRHa therapy predicts for lower biochemical control rate and overall survival in localized prostate cancer treated with radiotherapy
The results of our study have shown that patients with a PSA level >1 ng/mL at the beginning of external beam radiotherapy after >or=2 months of neoadjuvant luteinizing hormone-releasing hormone agonist therapy have a significantly greater rate of biochemical failure and lower survival rate compared with those with a PSA level of <or=1 ng/mL. Patients without adequate PSA suppression should be considered a higher risk group and considered for dose escalation or the use of novel treatments.

 

He was happy for me to aim for the 0.1, but with a warning that he'd had some other patients do this, and not all will succeed, and if your PSA stops dropping at a significant rate under neoadjuvant hormone therapy, you mustn't hang on waiting any longer as further delay is detrimental.

I have since seen other papers suggesting pre-RT PSA nadir should be various values between 0.1 and 1.0.

In the UK, we don't routinely monitor PSA during neoadjuvant HT as far as I know, which is probably why NICE simply recommends a time period. This probably is a good compromise - if your PSA is dropping quickly, you will probably be at these low levels by 6 months (I didn't wait quite 6 months, but longer than the 3 originally suggested), whereas if your PSA isn't dropping quickly, you shouldn't wait any longer anyway. I was lucky that both my consultant and my GP were happy to monitor my PSA during this period, and my consultant was very happy for me to influence my treatment in this way, having seen I'd put in some considerable research on it and understood what I was doing.

Edited by member 22 Aug 2020 at 06:59  | Reason: Edited in the papers' Conclusions

User
Posted 22 Aug 2020 at 15:53

Well Lyn, I'd never heard anything about timescales of HT prior to RT, though it's interesting about what you say. My HT started in March, about 3 months before the RT began. But when I first had it, a short while later, they postponed my RT until September, but said that the HT would continue until then. After the hospital had completely run out of patients attending for RT and many other treatments, they decided to start up again, if people were prepared to risk the whole 'Covid-19' thing. I decided that I would, as delaying treatment any further I thought, probably wouldn't do me any good.

Wow Andy, that's a whole lot of useful research right there! I only wish I'd thought to do so much myself, but thought the Uro must know what he was talking about. I certainly didn't hear anything about trying to get your PSA levels down to any certain level, though reading all this, it seems to make perfect sense!

I did try that 'Pomi-T' treatment for a while, when I was on AS, but as it was horrendously expensive and didn't seem to affect my PSA levels at all (They went from 7 down to 6, then back up to 9), very quickly gave it up again! I was on it for about 6-8 months. The second and third parts of your research there looks a bit scary to me, as I am?/was? classed as a 'High Risk' patient.

My HT will continue for another three years from the start of July this year, so seems to be completely different than yours Andy, which has already stopped! I only hope that when it does stop, that the levels stay the same. Maybe they realise that they should have been monitoring the PSA levels better before my treatment started? Anyway, we are all different and as your treatment was different to mine, I suppose it's wrong to compare them like-for-like?

User
Posted 23 Aug 2020 at 08:49

Hi Ross,

Shortly after I was diagnosed, I decided not to renew my work contract, and instead spend time learning about this disease, so I understood my options and pathways better, and could understand and talk with the consultants. I also found this fascinating, which helped, and was probably my way of coping with and taking control of my cancer diagnosis. My diagnosis was quite a long process as I was scheduled for more and more tests, which gave me plenty of time to do this - I probably did it for a fairly solid 3 months, combined with taking advantage of my freedom to do more cycling. I've never stopped since - I'm often looking up more things in research papers, but it's not like my full time job now, and it's often not related to my treatment, but background to presentations or supporting others. At my first or second consultation after being passed to my oncologist with a CNS present, the CNS referred to me as an Expert Patient - I must have looked a bit worried, because the consultant said he loved dealing with patients who have sufficient knowledge to take control of their treatment. At subsequent meetings he would mention things like the various STAMPEDE trail arms, knowing I would have read about them already, and I did end up following some of them, although not as part of the trial. My GP was brilliant too in supporting my choices and did warn me some clinicians really don't like expert patients, but I was lucky to have ones who did.

As I met more clinicians, particularly in a couple of the support groups where they saw me talking with other patients, they encouraged me to take a more active role in support, and one consultant in particular gave me time with him to learn more about issues I was getting from patients - that was brilliant.

I take Pomi-T too, although I never recommend my complementary therapies to others. I took the view after looking at the contents that it was, at worse, harmless. For much of the year after RT, I couldn't eat as many vegetables as I used to, in particular broccoli, and figured it might make up for some of that. Buying it in 4-packs from Amazon works out around £15/month, which was the cheapest I found. You can't know it didn't do you any good - you might have come off AS sooner without it, but equally you can't tell if it did you any good either. I am high risk on two counts (Staging and PSA), or Extreme Risk (PSA >= 40) as some research papers catagorise me. My onco has left it up to me when I stop HT, but wanted me to do at least 18 months regardless of post treatment PSA, which I have. He said if my PSA was still around 1, he would recommend the full 3 years. 3 years is normally the total duration before and after treatment, not just the after treatment duration. You might want to clarify that with your onco.

There is never any point in worrying about treatment decision afterwards - everyone makes the best decision they could based on their knowledge and feelings at the time, and you can't do better than that. Decision regret is pointless mental anguish. Everyone will learn more as they go, and research will discover new things, but you can't beat yourself up about not knowing that at the time. A comment I sometimes make to people thinking about this is everyone would prefer their cancer 10 years later, but you have to deal with it now. Wishing you the best on your path.

User
Posted 23 Aug 2020 at 20:47

Thanks Andy. You are right what you say about Pomi-T, I don't know if it did me any good or any harm! I think it mostly hurt my wallet, as I'm far from being 'well-off', but life is more important than money, so I splashed out to try it out. My biggest problem with it was actually the size of the capsules! I've never been good with taking tablets of any size, but these were humungous compared with what I'm used to! So that is the main reason for my ditching them, I'm embarassed to admit.

I should have read up on my PC a lot more than I did, as my docs don't seem to like giving out information to patients! Yet I would have thought that WE are the ones that matter most? My disabled partner needs a lot of care, so that takes most of my possible studying time. But thankfully, my treatment is now in the past and I hope my PC is too. I still get the odd bit of urinary trouble, but compared to some, I seem to have gotten off lightly. Seven weeks post RT and (touch wood), I've nearly forgotten about all the pain and discomfort of side-effects! I just hope it's all worked. The best of luck to you too Andy!

 

User
Posted 25 Dec 2020 at 02:16

An update at 16 months after the EBRT and HDR, and 22 months on Zoladex. My last Zoladex technically wore off this week, although I'm not expecting anything to happen suddenly. By all accounts, it takes somewhere between 3 and 15 months for testosterone to start to recover (and occasionally it never does). My PSA tests will now include testosterone tests, until my testosterone recovers, as a PSA test without knowing what the testosterone level is at this stage isn't very meaningful.

I did a test 10 days before the Zoladex ran out to get a baseline. PSA still <0.01 and testosterone 0.4 - I'm expecting both to start going up now, but it might take a while.

I upped my Tamoxifen to 3x20mg/week a while back because I was getting some breast gland growth on the Zoladex. Having previously found my liver didn't like Tamoxifen much, I got a liver function test added to the blood test too, but that came back fine, so it looks like my liver is OK with this dose. I should be able to drop the Tamoxifen when my testosterone starts recovering - you don't need much testosterone to stop breast bud growth.

Minor rectal bleeding is still a thing, but not a quality of life issue.

Edited by member 25 Dec 2020 at 09:17  | Reason: Not specified

User
Posted 26 Dec 2020 at 17:44

I'm not on Zoladex, but Prostap 3 instead. I think it's the same thing, just a different name and type. I feel secure, knowing that I still have over a year to go on it, though it does cause the side effect of killing off my sex life!

I have my latest injection coming up on the last day of the year, but when arranging it, I asked the receptionist to book me in for a PSA test too (I've been having them every three months since diagnosis in Oct. 2017), but she said no! My surgery has given far too much power to their receptionists now and it's impossible to speak to a doctor or nurse, or even arrange to see one, without their say so first!

Anyway, so this young girl said to me, "No, it's not showing anything from your doctor or hospital that you need one, so I won't arrange that for you, but you can still have the injection." I just wonder Andy, whether you think that's right? I suppose I may not need one, as since EBRT back in June/July this year, my PSA has always been less than 0.1, but I just didn't like the cheeky way that receptionists now seem to be the people with the most power in my surgery these days and have complete control over our health matters now!

So whad'ya think? Should I still be having regular PSA tests? Or is she right that I have no right to one anymore?

User
Posted 26 Dec 2020 at 18:57

Hi Ross, 

My first psa was 28, when I went to see doctor a week later to discuss my results I requested a second test. The doctor was reluctant, but she could see I was a bit stressed at the thought of life changing treatment based on one sample of blood, so she agreed. 

Whilst on zoladex my psa quickly went to <0.1. I have an appointment with onco every six months and have been told to get psa prior to each appointment. I think I would have been hard pushed to get psa tests every three months instead.

I have managed to get testosterone tests added to my psa tests since coming off HT. The receptionist said "has the hospital requested this?" I deliberately misunderstood her, deliberately confused myself with whether she was asking about the psa test or testosterone test and said "yes". So in short I now get psa and testosterone test every six months.

As far as I can see in your profile your psa has never got to undetectable, so I think your psa probably should be monitored a little more closely. 

Dave

User
Posted 26 Dec 2020 at 18:59

Ross,

It depends who is supposed to be doing your PSA tests. At this point, it will be the responsibility of your oncologist, but they may have asked your GP to do it every 3 or 6 months. Do you get a copy of the letters from your oncologist to your GP?

Sometimes my oncologist gives me blood test forms, and sometimes I ask my GP. The receptionist can't order blood tests, so no point in asking them (unless the protocol at your surgery is they go and ask the doctor). I can message my GP directly through the patient portal, and he prints off a form and leaves it to pickup from reception (I've suggested emailing it, but that's a bridge too far so far). I always justify why I'm asking, and he's never refused. Usually, it's in preparation for a consultant appointment, but I have asked for a couple of testosterone tests (one when I saw a reversal of some hormone therapy side effects and wondered if an injection hadn't worked, and the other because my consultant has asked for them now that I'm coming off HT). I have asked for liver function tests a couple of times to make sure my liver is coping with Tamoxifen, because it didn't to start with. My GP has always done them, but that's probably because I had a valid justification. If you just ask for a test without having a valid justification, I can imagine they might say no.

The last consultant letter says he wants 3 monthly PSA and testosterone tests, and it seems to be up to me to ask the GP when one of these is due, but he's given me the test form for a test just before my next consultation 10 months after the last one, and that one has a load of other stuff on it too which I've never had tested before (like bone profile) as well as blood counts, liver, kidney, PSA, testosterone, etc.

So you could ask the receptionist to book you a doctor appointment (assuming you can't do it on a patient portal), and when they ask why, say it's to ask the doctor for one of your routine PSA tests.

I think NICE says you should be tested at least ever 6 months - my consultant has asked for it every 3 months (although in practice, I have slipped that to 4 or 5 months to it lines up with consultations).

User
Posted 26 Dec 2020 at 23:19
Ross, do you get copies of the letters from onco to GP? Does it say in any of the letters that the responsibility for PSA tests has been handed back tobyourcGP and how often they should be done? If it specifically says every 3 months then the receptionist cannot refuse to book you in but if it doesn't mention frequency then the GP practice is reasonable in only doing it every 6 months. My worry for you is that the onco never said anything and so technically, your GP practice could be difficult every time you are due because it has never been formally handed to your GP and is not in your medical notes. If that is the case, you need to get on the phone to your specialist nurse (if you have one) or the onco's secretary and ask them to write to the GP requesting that you have a PSA test every 3 or 6 months at your local surgery. The last thing you need in the current situation is to have to go back to the hospital for regular blood tests.

Looking back at my notes, it seems it was about 5 years before John's PSA tests were handed over to the GP practice.

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

User
Posted 01 Jan 2021 at 03:29

Hi all of you and thanks for your replies. Sorry mine is so late. I'll put it down to being busy at Christmas, but you can guess that's a lie, due to all this 'tier 4' nonsense! It's really due to my awfully bad memory, for which I can only apologise. Dave, I really must get my profile updated, as my psa is now around the 'less than 0.1' mark and Andy and Lyn. No I don't get many of the letters from onco to my gp, although I did get the one following my EBRT back in July.

I suppose I don't need PSA tests at 3-monthly intervals, as the latest three have all been 0.1 or less (if that's possible?) But seeing my HT injecting nurse today, she recommends discussing them with my onco, when I next speak to him in February. He used to give me a blood test form each time I saw him, to use before the next time, but there are no more 'next time's' at the moment, so I don't get them anymore. There's no point in asking to speak to my doctor, as that will never be allowed! And I can't use the 'patient portal' option for an appointment at the moment, as it's been suspended until all this nonsense is over. I also had a specialist nurse, who I've never actually managed to speak to, but I suppose I could try again, if she's still attached to my case somehow?

So I'll just plod along and wait for my phone appt. with onco in Feb. and hopefully that will resolve everything. But once again, thank you all for your help and suggestions.

User
Posted 06 Jan 2021 at 13:38

I've got BO !!!

I didn't expect anything to happen this fast, but 13 days after my last Zoladex expired, BO returned. Thought it might be a once-off, but it's been 3 days on the trot now. It did happen one day while I was on hormone therapy, and I went and got a testosterone test done in case the hormone therapy had failed to work, and it was 0.2 which is about as low as hormone therapy can get Testosterone (latest measurement 10 days before last Zoladex expired was 0.4).

Anyway, dug out my deodorant, only to find that after two years without use, it's dried up!

I'm still somewhat dubious this is related to ending hormone therapy - it seems far too soon.

User
Posted 06 Jan 2021 at 14:36
Congratulations! 😁

It is remarkably quick. It took a good 6 months after stopping HT for me to start needing to use deodorants again.

Cheers,

Chris

User
Posted 11 May 2021 at 19:20

Just had what amounts to my 21 month review after HDR Boost (radiotherapy), and 4½ months after Zoladex ran out.

PSA has been <0.01 since the radiotherapy (ignoring one spurious reading 2 days after COVID vaccination, which returned to expected value 2 months later).
Testosterone is still 0.2 nmol/L, which means I'm still effectively on hormone therapy, but that's unsurprising at this point.

Consultation was going to be with consultant, but was with CNS instead as I'm stable and he's overloaded. They're very happy with PSA remaining undetectable since RT, but that's mainly because testosterone hasn't returned yet 4½ months after HT ran out (not surprising).

I will be continuing with 3-monthly PSA and Testosterone tests at least until testosterone is back to normal, but they're now regarding my treatment as complete, and GP will be notified. Next appointment would normally be 6 months, but this one was 10 months since the last and I said I was OK with another 10 months.

I will be referred to colo-rectal for the rectal bleeding, and back to urology which they do at the end of oncology treatment. Also will have a second holistic needs analysis (HNA).

I know only too well there's plenty of opportunity for things to go wrong, and as yet I have no clue what my PSA will become when testosterone returns, but I think I've hit a notable milestone with oncology marking my treatment complete.

User
Posted 11 May 2021 at 22:41

Hi Andy, good to hear from you. As you know from my thread it took nine months before my testosterone recovered. I was getting worried it may not come back. I was surprised that it didn't come back gradually; I just woke up one morning with a hard on and from then on I would say "I've got my mo-Jo back".

My psa is 0.2 the first time it has been above undetectable, I'm curious as to what it will settle down at. I know I'm going to be anxious as it will almost certainly get higher, but if the oncos deem anything less than 2.1 to be OK then I just need to draw a line in the sand <2.1 happy: >2.1 not happy. 

Dave

User
Posted 24 Sep 2021 at 16:32

Barry, I'm 9 months since HT ran out now. Having more unexpected erections, including the unexplained semis that just spring up, and make you wonder what your dick can see that you can't, a phenomena I had almost forgotten about. However, still no libido and I don't think there's a noticeable increase in body hair yet. Should get another PSA and testosterone test next month, but don't know if that will happen in the current climate.

The consultation for my rectal bleeding referral came through, and confirmed to be radiation proctitis. I can choose if I simply ignore and live with it (it's not causing any QoL issues), or try treating it with steroid foam. I'll try the foam after my next PSA test (as steroids do impact PSA levels).

The colo-rectal consultant was a very nice lady. She loved the diary, chart, medications, and blood test spreadsheet I brought along, and spent a while looking through it, and asked me about my prostate treatment and commented on things like my PSA readings. She asked if I was an expert patient and I said yes for prostates, but not an expert patient on bowels. She responded, "Not an expert patient on bowels, *YET*!". I was the last patient of the day, and we then talked about my support group work.

User
Posted 25 Oct 2021 at 23:02

Just had another 3-monthly PSA/Testosterone test, 10 months after the last Zoladex ran out. PSA still <0.01, but Testosterone has gone from 0.3 to 9.8 in those 3 months. (Hospital says normal for my age is 6.7 to 25.7.) Probably most of that change was in only the last 6 weeks. So I'm now within the normal range for Testosterone, albeit at the lower end, but it may still go up some more. I've no idea what *my* normal was, as it wasn't measured before starting hormone therapy. A bit surprised the PSA is still <0.01 as I still have a prostate, but maybe it takes time to respond to the Testosterone recovery.

As mentioned before, unplanned erections had returned, but I don't think my libido has returned yet. Maybe it needs some time or a higher Testosterone level.

User
Posted 25 Oct 2021 at 23:30
Unplanned Hard-Ons, now I miss those!
User
Posted 26 Oct 2021 at 10:04

Originally Posted by: Online Community Member
Unplanned Hard-Ons, now I miss those!

Me too ✋

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

User
Posted 26 Oct 2021 at 10:05
Looking good Andy x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2021 at 11:00

That is great news. It is a very scary thought that the testosterone might not come back after HT. I have over a year to go and hoping for a similarly good outcome.

Best wishes. 

Jim

User
Posted 26 Oct 2021 at 11:36

Jim, it's quite rare that testosterone doesn't return, although I know only too well that doesn't stop it being a worry. It usually doesn't return to the same level, but as your level declines with age, it wouldn't be the same level in any case if you hadn't ever had hormone therapy.

It used to be very difficult to get TRT (Testosterone Replacement Therapy) if testosterone failed to return, because there was a thought that it would bring the prostate cancer back. This has now been disproved - the down side is that if the cancer was going to come back anyway, it might do so sooner if you're on TRT.

I was even offered TRT by urology 4 months ago, but declined it, as it is likely to slow or prevent your own testosterone returning.

 
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