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External Beam RT and HDR Brachytherapy - my path

User
Posted 25 Jul 2023 at 18:19

Fantastic news Andy ๐Ÿ‘

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 anyoneโ€™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 ๐Ÿ‘
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 ๐Ÿ‘

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 back๐Ÿคž

User
Posted 22 Feb 2024 at 15:52

and I can’t wait to get the old testo back๐Ÿคž


I miss my Testo soo much. Gone forever and I didn’t really get to say goodbye ๐Ÿ˜ช

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

User
Posted 22 Feb 2024 at 17:33

Excellent ๐Ÿ‘

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.


 


 


 

User
Posted 12 May 2024 at 00:18

Had a flexible cystoscopy on Thursday, my second one in 3 months, and actually my third in total (the first being during original prostate cancer diagnosis nearly 6 years ago).


This was kicked off by peeing blood at Christmas. Actually, the blood was immediately after peeing - it didn't seem to be in my urine. Then it was in semen too. Being around Christmas/new year, I was wondering what to do about it. Then bizarrely, I got a call out of the blue from a urology consultant who asked me how I was doing. I'm under oncology, not urology, so this surprised me on many counts. Someone jokingly suggested my toilet must be connected via the Internet back to the hospital! He said he'd bring me in for ultrasound scan of upper urinary tract (I know that's to check for any cancer or other problem with kidneys/upper urinary tract) and a flexible cystoscopy (that's to check bladder/lower urinary tract). I wasn't referred on a 2WW, but did get the ultrasound quite quickly, which was all clear.


Then I got a UTI, although it took me a while to realise the increasing pain and urgency might be that. I do have a tub of the Multistix dip tests at home which would have told me instantly, but I was not at home for a week when it happened. Got a GP nurse appointment last thing on a Friday which I rushed back for, which showed a UTI, and immediate antibiotics prescribed, which fixed it, although it did turn in to prostatitis for a couple of days before it completely went. A UTI causes positive leukocyte/nitrite dip test results, but usually also causes positive blood and protein in urine by the time it's bad enough to notice you have it, which indeed mine was. I monitored this with periodic tests, and the leukocyte/nitrite test went negative quickly showing the infection had gone, but the blood and protein took a month to clear as tissue damage heals more slowly.


My flexible cystoscopy came through the day the protein level went negative and blood level was down to the lowest detectable on the dip test. The cystoscopy showed my bladder was quite a mess with loads of large red blotches (which definitely weren't there nearly 6 years ago). The urologist was clearly thinking bladder cancer and said it looked worse than is typical for radiation cystitis (which I also guessed wouldn't be all around the bladder), but I was thinking scarring from the recent UTI. Urologist wanted to book me straight in for a rigid cystoscopy under general anesthetic to take biopsy samples. I wanted to wait a bit longer for the UTI scars to heal if that's what it was, so he agreed to do another flexible cystoscopy in 4-6 weeks. The followup letter suggested the MDT (who I presume must have watched the video later) didn't think it looked like bladder cancer.


The 4-6 weeks became 3 months, and a different registrar did it on Thursday. Getting rather used to these now, I asked if she could give a commentary on where we were looking, which she did. Bladder was now completely clear of the red blotches, and looked fine. There wasn't even any sign of radiation cystitis in it (and I've never had any symptoms of that). I think she took me on more of a tour around because I asked for a commentary, which was very interesting, pointing out the bladder neck looking back from inside the bladder, the ureters, the inside of the prostate, etc. Although I have a large prostate (it was 93cc and 97cc on a couple of the early scans), the urethra through it isn't occluded, but does have lots of exposed blood vessels. I think this is where the bleeding was coming from, in which case it's of no significance (or surprise) after radiotherapy. My urethra is narrowed in the penile bulb where the HDR brachytherapy catheters passed through, but no scarring, so it might not be an active stricture, but something to keep an eye on if my flow rate reduces. She had to dilate it a bit to get the camera through. That stricture was probably caused by the HDR brachy, because that wasn't there before treatment.


Anyway, no further followup required, unless I notice my flow rate reduce.

User
Posted 12 May 2024 at 08:23

Morning Andy.


It must have been a very worrying time for you. I'm delighted that you've been given the all clear mate. ๐Ÿ‘

User
Posted 12 May 2024 at 08:29
Good news Andy, always followed your journey with interest, we got diagnosed around the same time in August 2018.
User
Posted 12 May 2024 at 09:20

Hello JasperM


I couldn't see if you maintain a treatment thread, and searching isn't good on here. I just read through your profile. You had one bone met at diagnosis. What scans showed this, just a nuclear bone scan? On one hand, that's not surprising with an N1 diagnosis. On the other hand, nuclear bone scans are now known for generating false positives when reporting only a very small number of bone mets, but I don't think this was known in 2018. If no other scan has ever confirmed that met existed, it might just be that it wasn't really a met in the first place. Also, if they targeted that met during the radiotherapy, that could have cured it. Either of these could mean you aren't Advanced/Stage 4 now, and don't have to stay on hormone therapy for life. Definitely something worth discussing with your oncologist - maybe you could try intermittent hormone therapy, which if the current treatment has actually effected a cure, you'd never need to restart. I don't think the risk in trying this is high, but again, that's a question for your oncologist.


You also mention T4, which means the tumour has grown (rather than metastasised) out of the prostate into another adjacent organ, but you don't say what that is. (T4 is not the same as Stage 4; Stage 4 means M1.)

User
Posted 12 May 2024 at 10:40

Andy, good news that nothing too serious was found.


Thanks Chris 

User
Posted 13 May 2024 at 19:03

Good news Andy I’m really pleased to hear you’re ok.
your contribution and knowledge on this forum is so much appreciated.


all the best moving forward,


Derek

User
Posted 13 May 2024 at 19:52

Originally Posted by: Online Community Member


Good news Andy I’m really pleased to hear you’re ok.
your contribution and knowledge on this forum is so much appreciated.


all the best moving forward,


Derek



Exactly the same from me Andy


Cheers


Bill

User
Posted 14 May 2024 at 09:15

That’s great Andy. Keep up the resistance.. 


Phil

User
Posted 14 May 2024 at 20:43

Andy 62,


That's great news, but you've certainly been on a roller-coaster ride.  Here's hoping for a long period of stability.


Best wishes,


JedSee.

User
Posted 12 Aug 2024 at 11:39

Today marks my 5th anniversary of finishing radiotherapy.


PSA test a week ago was 0.03, and Testosterone which was above the normal range 6 months ago (which isn't great for skin complexion) has come down to 25.7 which is exactly the top of the normal range as advised by my lab.


Long term side effects are occasional minor rectal bleeding which has been going on for 4½ years now so I presume it's permanent, and a couple of cases in last 6 months of blood in semen and after peeing. Nothing impacting quality of life. Everything works perfectly. I consider myself very lucky.


My GP ran a health day for 100 patients on Saturday, and asked me to do 20 minutes talk on prostate health and awareness, which was a good experience. Another GP has me doing a longer talk in a few weeks.


 

Edited by member 12 Aug 2024 at 11:40  | Reason: Not specified

User
Posted 12 Aug 2024 at 19:19

Andy62,


Happy Anniversary!


Best wishes,


JedSee.

User
Posted 12 Aug 2024 at 19:35

Brilliant new Andy, I hope in 5 years time I’m in your position. Your knowledgeable contributions on this forum are invaluable and it’s so nice to see you helping raise awareness. I find Maggies so rewarding knowing that perhaps I’ve helped a few new members who come in so scared….and go away with hope for the future.


Cheers to you!


Derek


 

User
Posted 12 Aug 2024 at 20:12

Thanks for the update.

Dave

User
Posted 12 Aug 2024 at 20:18

Great news Andy. For those of us on a curative pathway that's where we all aspire to be (and remain). Chris

User
Posted 12 Aug 2024 at 20:33

Andy , great news on the PSA, pity about the bowel issue. I did have a bit of blood after salvage RT but seven years on from SRT all has settled down.


Here's to another 5 years.


Thanks Chris 

User
Posted 12 Aug 2024 at 20:50

Great news Andy. All the best!


I saw your note re rectal bleeding. I'm sure you checked everything out as is your way, but my experience may be of interest. Three years after RT/LDR Brachy I started to have rectal bleeding, sometimes weekly and my confidence dropped. It didn't help being on anti-coagulants which I had started 3 years previously. Earlier this year I had a flexible sigmoidoscopy that confirmed no tumours etc, in my lower bowel but noticed some radiation proctitis. 


Then I vaguely remembered somewhere on the web where one person attributed this bleeding to eating nuts. (my thoughts that this is akin to passing sandpaper as I don't think they are digested well). I then recalled my high consumption of cashews, macadamia, brazil etc as I liked to snack on them. So three months ago I stopped eating all nuts, also ensuring nothing was in muesli etc. I'm delighted to say that the bleeding has since stopped...


Vince

User
Posted 12 Aug 2024 at 21:38
Great stuff
User
Posted 12 Aug 2024 at 23:18

Originally Posted by: Online Community Member
PSA test a week ago was 0.03, and Testosterone which was above the normal range 6 months ago (which isn't great for skin complexion) has come down to 25.7


You can't do better than that Andy and the 5 year mark is a milestone of course. Congratulations!


Jules

User
Posted 13 Aug 2024 at 07:23

Great news Andy.

User
Posted 08 Oct 2024 at 11:57

Today is my last day taking MCP (Modified Citrus Pectin). I started taking it when I was diagnosed 6 years ago. Of course, I'll never know if it did me any good. Now is probably a good point to stop anyway, but this is somewhat forced as it's no longer available in the UK except at really silly prices. I was buying it direct from Swanson in the US, but they stopped shipping to the UK, and their UK reseller is really silly prices. Fortunately, I still had 2 years stock at that point, but that's now run out.


I finished hormone therapy in Dec 2020, but never managed to lose the weight gain - actually put more on. A month ago, I was doing an awareness event in Guildford market, and bought a large flapjack to keep me going - that was the only thing I had time to eat. Spent the next few days on the toilet. Having lost some weight, I resolved not to put it back on, and so far I've succeeded. Last time I was down to 71.5kg was 3 years ago.

User
Posted 08 Oct 2024 at 12:51

We’ll done Andy, even though it was a rather dramatic way to lose it๐Ÿ‘๐Ÿ‘๐Ÿ‘


I put on about 9kg whilst on HT and am finding it very hard to lose it ATM. Maybe when my testosterone returns I’ll have more success๐Ÿคž


Derek


 

User
Posted 08 Oct 2024 at 20:45
Andy, you are going to have to educate me on MCP, a pharmaceutical that has totally passed me by!

I also put on weight during my (salvage) HT, curiously I became most aware of it after the treatment had in theory stopped. I have lost about half that gain but seem to have found a new equilibrium - which conceivably could simply reflect a lower post-treatment testosterone level.
 
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