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Radio Therapy or Surgery??

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User
Posted 27 Sep 2023 at 22:38
Are you on HT as well Chris?
User
Posted 28 Sep 2023 at 20:37

Mark, I  was on Bicalutamide for six months in conjunction with my SRT. Chris

User
Posted 03 Oct 2023 at 17:17

I am T3bN1 meaning the thing has broken out of the prostate into the seminal vesicles and at least 1 lymph node.

RP out of question, so oncologist had an easy decision, external beam radiation and High Dose Radiation therapy with HT for at least 2 years. Absolutely no choice but to go with that and brace myself for whatever side effect package comes. I did my digging up but most sources quite unclear, saying oh depends on individuals, some can be really bad, external beam only is adequate etc... Didn't know what to do. Go for external only and then find myself having to do the Brachy again later? or go for both at same time and risk those nasty side effects? So have started the external beam or EBRT and due to go for the brachy HDR beginning of November. If this is a mistake, please people, shout as I can still change and go for the EBRT and HT only. My oncologist insists on all three. I will keep you all posted.

So, in answer to your question, I agree, T3b would most likely mean there is a node affected. It does look like RT needs serious consideration?

Good luck.

User
Posted 03 Oct 2023 at 17:52

Hi Makus,

Im T3bN0M0  and surgery was ruled out for me too. I wouldn’t wish HT on my worst enemy but then again I know it is helping rid me of this disease. Also some men don’t seem to have ANY side effects, or very mild ones. Whether it requires 3 years(as my Onco is suggesting) is questionable and there are some on here who have stopped their HT early because the effects on their QOL were just so bad. If my joint issues get any worse then I will seriously consider doing this.

RT for me was a breeze.

For me joint weakness is the biggest concern, so I would recommend if you do go on HT to get to the gym …and don’t stop until you’re finished, not even temporarily during RT for instance, as I think that was my downfall.

Good luck with whatever you decide.

Derek

User
Posted 04 Oct 2023 at 05:34

Originally Posted by: Online Community Member
So have started the external beam or EBRT and due to go for the brachy HDR beginning of November

I think I'm right in saying that Dave had that combination and it's worked well for him. From a similar position to that you're in I went for RT with HT and no brachy. If they can offer you the very latest LINAC RT it might be reason to drop the brachy out of the equation but I think you've chosen the safest path.

Jules

User
Posted 04 Oct 2023 at 09:47

That is correct I had HDR, EBRT and HT. I was T3N0M0. Five years down the line my latest PSA is  <0.1 . Until you reach ten years post treatment, with undetectable disease, there is little point in saying if it is a success or failure. Even if my treatment were 100% successful, all we can say about yours is it has about 70% chance of success.

Though it involves a one night stay in hospital the HDR is the easiest of all three and also probably the most effective element of the treatments. EBRT is also very easy, just inconvenient that it needed 15 visits to hospital. HT for me was not too big a problem. With your N1 you may need more EBRT than I did.

 

Dave

User
Posted 06 Nov 2023 at 19:33
Hi everyone,

So first post op PSA and it’s 0.14 which is a little disappointing.

I know I had one node involved but was hoping that I would be undetectable for a good few months.

Can anyone give me some info on what I can expect next please.

I’m having another test in 4 weeks to see where the PSA then.

Thanks

Hope everyone is doing well and saying strong

Best wishes

Mark

User
Posted 06 Nov 2023 at 20:08

Sorry to hear that Mark, I’m sure there are many on here who are more qualified to give you advic.

User
Posted 06 Nov 2023 at 21:09

Sorry to hear it wasn’t the result you hoped for Mark. Wait and see on the next test and hopefully it may go down a bit more 🤞🏼 

If that isn’t the case and it goes up then I think SRT will be required, I think there is a certain amount of time that they would wait post op to allow you to heal, so it might be that they would start you on HT in the meantime.

Really hoping all will be ok for you. I know you may feel if it goes up that you made the wrong decision, but there is alot of talk these days about removing the main tumour, and even if that hasn’t put you into remission then the hope is it will slow down any progression. I always hope this has been the case for Rob.

Best of luck for your next PSA and keep positive and keep us posted.

Elaine x

User
Posted 06 Nov 2023 at 21:33

Sorry to hear - that’s  really tough so early on. Can only hope the next reading stays the same or even improves. Think we might be close behind given my OHs lymph node involvement. Good luck x

User
Posted 06 Nov 2023 at 22:54

Sorry Mark, that's not what you wanted to hear.

I would push for a PSMA PET scan to try and find it, but your PSA is currently too low for that to have much chance of finding anything, so you will probably need to wait until it's risen some more. They might do some other scans in the mean time. Did you have a bone scan during diagnosis? If not, that's one you could have now.

User
Posted 06 Nov 2023 at 23:01

Makus, the protocol you are describing is called HDR Boost. It's a good compromise between hitting the cancer hard, but side effects not usually too bad. I had it, and I would make the same choice again. I think you're being treated same place as me, as only one place does the HDR brachy after the external beam radiotherapy.

User
Posted 06 Nov 2023 at 23:09

Hi Andy,

yes had a bone scan and it was clear.
Had the first post op blood test 6 weeks after my op. Some sites and guys on this site say should be 8 weeks.

not sure if a few more weeks will make a difference, but we will see and hope it will!

Best wishes

Mark 

User
Posted 07 Nov 2023 at 00:20
Sorry to see this.

Testing 6 weeks post-op is fairly standard in the UK and more than enough time for the PSA reading to be considered fairly reliable. As the result is well above 0.1, the surgeon should really have referred you straight to oncology to discuss adjuvant RT with or without HT. The results of the next PSA test will help inform next steps but I wouldn't let the surgeon delay any longer than that.

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

User
Posted 04 Dec 2023 at 11:40

Hi all,

so latest PSA is 0.32 which is disappointing.

Was hoping for some time before I needed SRT. 

Not sure what I’ll be offered as waiting to see onco.

Any advice would be very welcomed.

im pretty gutted to be honest.

Hope everyone is doing ok.

rRegards

Mark 

User
Posted 04 Dec 2023 at 12:43

So sorry to hear this Mark and I can understand why you’re feeling gutted. I suppose that’s the risk you take when surgery is kind of borderline. As I’ve said before,  in Scotland they wont do surgery if there’s any risk of spread which is why I wasn’t given that option, which I would have chosen if it had been….and then quite possibly I’d been where you are now. That’s not much help to you but theres  many on here who have had SRT and can advise you better than me and  I wish you all the best with any further treatment required. I’m sure you’ll cope well if SRT is required and hopefully the side effects will be minimal.

Derek

User
Posted 04 Dec 2023 at 13:26

Not good news Mark. I've been there and I know what it feels like. Yours seems to have doubled in the four weeks since your first post op PSA. It is getting to a level where something might be detectable with a PSMA PET scan but Oncos all seem to have their own magic number that triggers a referral. The big question is, is it just confined to the prostate bed or is it in another node? I had my PSMA PET scan performed when my PSA would have be around 0.4. It didn't pick up any hotspots, although it did seem to indicate I have an arthritic spine (that comes as no surprise). My Onco decided just to do SRT on the prostate bed (educated guess). It's now over a year since SRT and so far so good. However PSA test is due next week 😬. Good luck with your journey.

User
Posted 04 Dec 2023 at 18:39

Thanks for the reply Chris.

It is quite demoralising when this happens, especially so soon after surgery.

Im speaking to my onco about a PSMA scan which he is organising for me so will take it from there when it’s done.

its a scary time again too:. Just like when you are diagnosed!!

good luck with your PSA test. Let me know how you get on.

All the best

Mark 

User
Posted 04 Dec 2023 at 18:57
So sorry Mark to hear about this - can’t fully imagine how stressful it must be for you. Hope the PSMA scan result is as positive as possible and that any treatment required is as tolerable as possible. Such a ruddy rollercoaster all of this x
User
Posted 06 Dec 2023 at 16:32

Can anyone tell me which is the best PET scan.

F18 or Gallium 68? 

my hospital is offering F18 as I think that’s all they do but I have read the 68 Gallium is better and more accurate for detecting recurrence after a prostatectomy.

thanks all

Mark 

User
Posted 06 Dec 2023 at 20:32
User
Posted 03 Aug 2024 at 00:33

Hi Mark, can you clear your inbox. It's full and so dm's aren't getting through

User
Posted 23 Sep 2024 at 22:52

Hi Clive,

try again please.

great to hear from you!

Mark 

 
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