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External Beam RT and HDR Brachytherapy - my path

User
Posted 25 Jul 2023 at 18:19

Fantastic news Andy 👍

User
Posted 25 Jul 2023 at 19:50

Thank you Andy, your email mail box is full so my PM thanks have bounced back. 


 


 


Steve

User
Posted 25 Jul 2023 at 22:42

Well done Andy!


I'm sure you know this definition but I feel it's worth quoting, although it's for LDR Brachy so guess that HDR must be similar. 


A Biochemical Definition of Cure after Brachytherapy for Prostate Cancer.


Since 98.7% of patients with PSA ≤0.2 ng/mL at 4 years after LDR prostate brachytherapy were disease-free beyond 10 years, we suggest adopting this biochemical definition of cure for patients with ≥4 years’ follow-up after LDR brachytherapy.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7442607/

User
Posted 25 Jul 2023 at 23:59

I hadn't come across this paper, but I've now saved it away. It is interesting. I was thinking this may not apply equally to HDR because because high risk patients (in the UK at least) don't get offered LDR, so most of those having HDR will be higher risk of recurrence in the first place (like me). However, the paper does say its results apply regardless of risk. It does also briefly mention Brachytherapy boost and HDR, but that's not what its results are based on.
Thanks.

User
Posted 26 Jul 2023 at 02:11

Thanks for posting your ongoing good news Andy. Roughly in sequence Dave, you, gaz and myself have successfully gone through RT, in slightly different forms, and come out the other end with results that indicate we have a good chance of staying cancer free for many years [or more :-)].


If results like yours and this thread encourage people who have doubts about having their cancer treated, then you can give yourself a pat on the back and try to get rid of that guilt :-)


Jules

User
Posted 26 Jul 2023 at 08:58
Great news Andy, really pleased for you. And like others have said absolutely no guilt should be felt. I honestly believe no matter what anyone’s situation is on this forum when we read good outcomes and stories like yours we just feel genuine happiness for you. It also gives lots of hope to everyone knowing that it is possible to be ok after a PCa diagnosis 👍
User
Posted 26 Jul 2023 at 09:56

Great post really pleased for andy but I also suffer with guilt I know where he is coming from and the fear off reaccurance never goes away I am a shadow off the person that was diagnosed a few years ago but try to carry on the best I can in the circumstances but it has been really challenging I really salute those like Phil and others that are constantly battling this horrible desease they are the real heroes gaz 👍

User
Posted 31 Dec 2023 at 09:34

4½ years after RT, I found myself peeing blood. It wasn't fresh blood (not bright red) and it only happened once. I have some dip sticks at home and so next time I peed, I tested it, and although it looked fine, the dip test did show microscopic blood. Tested again next day, and no blood. Obviously, this is not unexpected after RT, but not having happened since the RT (and back then it was microscopic), it was a bit of a shock.


A few days later, I ejaculated for the first time since then, and stale blood in that just like after a biopsy (but not as bad), and has been for a week or so since, although it's become more diluted since. No more in urine. So it looks like the blood came from my prostate. It would be more worrying if it came from bladder or kidneys, but that doesn't seem to fit with the symptoms.


I'm due a oncology consultation in a month's time, so I'll mention it then.


Interestingly, 4½ years after RT is the peak incidence of late onset rectal bleeding. As you may recall, I've had that side effect since 5 months after RT, although minor and no impact on QoL, so it's never bothered me. Ironically, over the last few months, that's been diminishing and is now only happening about once a week (and so far this week, not at all).

Edited by member 05 Jan 2024 at 14:44  | Reason: Not specified

User
Posted 31 Dec 2023 at 10:12

Morning Andy


I hope whatever the cause, its easily sorted out. Having taken the surgery option, I have no idea of the side effects you lad's who had radiotherapy, suffer from.


I just wanted to wish you well. You've been a great help to me.


Adrian

Edited by member 01 Jan 2024 at 08:36  | Reason: Typos

User
Posted 31 Dec 2023 at 10:33

Sorry to hear this Andy, I hope you can get it sorted out. I’m only 8 months since the end of RT. I see you had treatment to the whole pelvic area which my Onco didn’t want to do as he thought there was too much risk of permanent damage to the bowel.
Although I’ve not had many issues with the bowel, I did have an ‘accident’ whilst out walking last week…my bowel just decided to evacuate and there was NOTHING I could do about it.  I was furthest away from home and had just left the Fife Coastal path and in amongst houses and getting the bus back! I had gained so much in confidence with these side effects that I didn’t carry my emergency kit with me! My kit is with me every time now I am out walking or on my ebike. It was quite distressing at the time but now I can laugh about it…I find it’s the only way to keep me sane.


I really appreciate all the knowledge you impart on this forum…it’s been a great help to me.


All the best for 24!


Derek

User
Posted 31 Dec 2023 at 12:14

Hi Andy, 


On my thread I made a post on the 17 June 2022. About a similar incident. It has not occurred since. I wouldn't know if it were in my ejaculate as that doesn't happen anymore.


https://community.prostatecanceruk.org/posts/t23141-Hooray-I-m-off-zoladex--let-s-hope-for-good


I hope yours turns out to be as uneventful as mine.

Dave

User
Posted 31 Dec 2023 at 12:44

Thanks Dave, that does sound similar to my case.


I'm aware even a single incident of blood in urine should result in a 2WW, but I think I narrowed it down to the prostate rather than bladder or kidneys, which is not so worrying, or surprising, so I'll wait until my next oncology consultation as that should be in about a month. I'll be doing a PSA test before that, but will try to get things flushed out first so I can tell is it's still bleeding when I have the PSA test, which I guess might impact the result. Flushing things out is definitely not as effective as it was prior to treatment. I had that also with my second biopsy which was after I'd started HT, and couldn't really get the blood out of my prostate, and as a result, a blob of iron oxide (from the breakdown of the excessive blood) showed up brightly in my prostate when I had a full body MRI a few months later (shows up well because it's magnetic).

Edited by member 05 Jan 2024 at 14:40  | Reason: Not specified

User
Posted 02 Jan 2024 at 21:32

Sorry to hear this, Andy.  I hope you can get an early investigation, and hopefully get it sorted a.s.a.p.  It seems a long time to wait for your next scheduled consultation in about a month.


Take good care of yourself.


JedSee.

User
Posted 02 Jan 2024 at 23:01

Oh, dear, Andy.  Sorry to hear this.  Still, here's hoping it's just a blip in the overall tide.  You more than any other I know is so completely armed with information.  I'm sure you can steady this ship and sail on to yet more glory.  Here's hoping the month progresses quickly and without event in this regard.  May this New Year be among the happiest you have ever known.  

User
Posted 05 Jan 2024 at 14:38

I got an unexpected call from a urology consultant this morning. Apparently they have written to me to tell me there was a phone appointment, but I haven't received that letter yet. He just wanted to know how things were going and if there were any problems. They did this a couple of years ago too - I'm very impressed (even more so that it happened during a junior doctor's strike).


I mentioned the blood in urine and semen. I will be booked in for a flexible cystoscopy and ultrasound kidney scan, but as it won't be on the 2WW pathway (he thought around 6 weeks), I'm guessing he also thinks bladder or kidney cancer are unlikely causes.

User
Posted 05 Jan 2024 at 19:39

Thanks Andy 62.  Hopefully, it's just a blip and you might take comfort from the fact that they don't seem to think it calls for an urgent assessment as potentially cancerous.


Take good care of yourself.


Best wishes,


JedSee.

User
Posted 14 Jan 2024 at 19:00

Ultrasound appointment has come through for end of the month. Still waiting to hear about flexible cystoscopy appointment (hope the letter arrives before the appointment this time!).


Symptoms were getting worse, more blood, urgency, only peeing a bit, wondering if I was going in to retention. The visible blood wasn't in the urine though - it seemed to appear in response to my body involuntarily closing the internal urinary sphincter, together with a good deal of the pain. I eventually decided I wasn't going in to retention - quite the opposite in that as soon as there was a small amount of urine in the bladder, the urgency to empty it kicked in.


Asked GP for Tamsulosin and a urine test - got both. Urine heavily infected - to some extent that was a relief to at least know what part of the cause was. Nurse said infection could be the cause of all the symptoms, but also I think the infection might have been caused in part by some internal damage from radiation cystitis, so I can't really tell which way around things happened. 2 days into the antibiotics, the visible bleeding has stopped, although a home dip test still shows lots of microscopic blood and protein in urine, which is a sign of cystitis according to the nurse, given I don't normally have either in my urine test results. On the plus side, not showing infection markers any more. Still pain and urgency, but I guess things may have got quite raw in there from the infection and still need to heal. Too painful for a cystoscopy at the moment, so I'm pleased that appointment hasn't come through yet. Drinking lots including lots of sugar free cranberry juice in case it helps (and I do quite like it).

User
Posted 14 Jan 2024 at 19:37

Good to get an update from you Andy and hope the infection clears up soon.


Derek

User
Posted 15 Jan 2024 at 20:24

Thanks Andy62,


You've certainly been through the mill.  Hope all clears up and nothing found on scan when you eventually have it.


Best wishes,


JedSee.

User
Posted 22 Feb 2024 at 15:26

My next 6-monthly PSA test has just come in at <0.03. It's been 0.04 for the previous couple of years during which I haven't been on HT, my Testosterone has been back (and rather high), and I still have a prostate. I'm surprised that 4½ years after external beam and HDR brachytherapy, it's gone down even further - I was expecting it to go up slightly, if anything. Actually, I think this change might be due to a change of lab test equipment or assay (chemicals the tests use), because the lab now measure down to 0.03, whereas it used to be 0.01, and <0.03 is not really significantly different from 0.04 I've been for a couple of years before.


Testosterone has gone up, from 20.9 nmol/L a year ago to 28.8 nmol/L, which is now above the normal range (25.7 max at my age). It doesn't seem to have had any bad effect on PSA though. It was above the max level 18 months ago too.


The peeing blood at Christmas is being investigated. Ultrasound scan was OK, but cystoscopy wasn't, probably due to still healing from a UTI, but it will be repeated in 4-6 weeks to check things again. I asked for another consultation with colorectal too, to talk more about minor rectal bleeding which I've had for 4 years now. It's not really causing me a any problem, but what do I do about bowel cancer screening (given I'm now at higher risk), and is there any other implication of this continuing indefinitely or something I should be doing?

Edited by member 22 Feb 2024 at 15:27  | Reason: Not specified

User
Posted 22 Feb 2024 at 15:38

Brilliant news about the PSA reducing even further and your T is going great guns………..


Long may it continue .


Phil

User
Posted 22 Feb 2024 at 15:44

Great news Andy, I hope my outcome is as good as yours….and I can’t wait to get the old testo back🤞

User
Posted 22 Feb 2024 at 15:52

and I can’t wait to get the old testo back🤞


I miss my Testo soo much. Gone forever and I didn’t really get to say goodbye 😪

Edited by member 22 Feb 2024 at 15:53  | Reason: Not specified

User
Posted 22 Feb 2024 at 17:33

Excellent 👍

Dave

User
Posted 22 Feb 2024 at 20:14
This is super news. I wouldn't worry too much about the increased risk of bowel cancer - it increases the risk such a small amount. The important thing is that as a man of a certain age, you have a risk of bowel cancer anyway and should engage with the screening programme when offered ... unless you have any symptoms, in which case you will act decisively and remind the GP of your pelvic RT if s/he prevaricates!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Feb 2024 at 20:03

Friday night fist pump from me Andy.


 


Jamie.


 


 


 

 
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