External Beam RT and HDR Brachytherapy - my path

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.

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.

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...

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!

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 05:59  | Reason: Edited in the papers' Conclusions

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

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.