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Second line treatments after radiotherapy

User
Posted 02 Mar 2024 at 21:22

Mary,

I would not bother with surgery for T3b N1, and even the surgeon is saying it's likely to come back.

I would look to go for radiotherapy, which I suspect stands a better chance of curing, and with fewer side effects, in particular a lower chance of incontinence and impotence, and without the requirement for extensive pelvic lymph node dissection, so lower chance of lymphedema. There are no guarantees either way, but at age 56, I decided to go straight for radiotherapy for pretty similar reasons (although I was T3a N0), and I don't regret that decision yet. I would ask for the radiotherapy to include all the pelvic lymph nodes - I asked for mine to be done on a 'just in case' basis (which is done at a lower dose), although the two known ones with cancer will need the full dose.

I think it's perfectly reasonable to defer the surgery until after you've seen oncology - actually, it's pretty much your right to do that.

Do get his PSA checked 3-monthly while he's on hold on Bicalutamide, to make sure it's going down.

User
Posted 02 Mar 2024 at 22:01

On the subject of follow-up treatments if it recurs after RT...

This will depend where the recurrence is.

Recurrence is most often outside of the area which was treated, i.e. it is a metastasis which wasn't known about at the time of the original treatment because it was too small to show on scans. In this case, radiotherapy in the form of SABR can often be used, providing they can plan paths for the thin beams which don't go through areas already treated, and avoiding organs which won't stand the beams. There's also a limit on the number of these they'll treat, generally up to 3 mets.

If recurrence happens in the prostate which happens less often (particularly for external beam radiotherapy which can't very easily miss a bit), a focal therapy might be suitable depending on extent and location. Salvage prostatectomy can be an option too, but you want that done by a surgeon who specialises in it - there is one at Guys and St.Thomas's. The current UK view is that you can't have RT in the same area you've already had it because you have already been given the max lifetime dose to that tissue. However, there is some thought now that if that was a long time ago, the body can withstand more, and that is being done in some countries. I was speaking with a leading UK oncologist, and she said we really need to get braver about doing this in the UK, so it might come along in the future.

User
Posted 03 Mar 2024 at 00:03

Originally Posted by: Online Community Member
I would ask for the radiotherapy to include all the pelvic lymph nodes - I asked for mine to be done on a 'just in case' basis (which is done at a lower dose), although the two known ones with cancer will need the full dose.

Andy, I often read here about [what seems to be almost the opposite of the above], whole of pelvis RT but I've never seen it defined and I wonder if what it meant ten [or more] years ago is different to what it might mean now, where precisely targeted RT is possible. Here in Australia I had three lymph nodes treated specifically with a high dose RT and several "elective" lymph nodes treated likewise. I presume that the electives are an educated guess, given they don't show up on scans of any sort. I didn't have all my lymph nodes radiated but could treating the whole lot damage healthy lymph nodes in such a way as to cause lymphedema?

More broadly for a patient in the UK, is targeted RT of the type we're talking about here, widely available on request?

Jules

User
Posted 03 Mar 2024 at 10:03

Terminology is confused here, because in the context of prostate cancer treatment, we usually use the wrong term.

Whole pelvis here or as used by a prostate oncologist usually refers to to prostate, seminal vesicles, and pelvic lymph nodes, and is quite specific to just those. A radiotherapist/radiographer would call this prostate and nodes which is the correct term. It's an accurately targeted dose, and not just blasting the whole pelvic area. When I elected to have it, my lymph nodes were treated at 46Gy prophylactically. I asked about the risk of lymphedema, and my oncologist said it was rare anyway with radiotherapy, and he'd never had a case at the lower prophylactic dose, which is why I went ahead with it. A higher dose is used when there is known cancer in them.

Whole pelvis to a radiotherapist/radiographer (or anyone not talking about prostate cancer) is something completely different - it's a palliative treatment to the whole pelvic bone (and not soft tissues), and is very rarely done.

Treating lymph nodes can leave them working normally, so I imagine it can avoid lymphedema, but there's probably a risk too - I don't know how the two balance out. If a surgeon thinks significant pelvic lymph node dissection (PLD) is going to be required with a prostatectomy, that would certainly be a very significant factor swaying towards radiotherapy in my view. Lymphedema can be a significant disability, and it doesn't have any good treatments readily available. Lymph node transplants are being tried at in the US.

User
Posted 03 Mar 2024 at 10:25

Hi...I had radical prostectomy 14 months ago and a gleeson score the same as your husband.  It was my 1st every operation and was nothing like I expected ( walking with 2 hrs after op,no real pain just paracetamol during night and drink lots of fluid) Was discharged next morning and worst part of all was the cafiter for almost 3 weeks but all good..walked every day twice a day and wouldn't change anything as everything back to normal within 3 months.........unfortunately I trained too soon after and got a hernia at site of prostate extraction and that operation was far worse regards recovery and any pain.....I personally always tell people to get the thing removed and take it from there.....May psa now slightly up 0.06 and perhaps need radiotherapy on prostate bed but hey it's just the nature of the cancer unfortunately...keep strong and never be beaten 

User
Posted 03 Mar 2024 at 11:00

Originally Posted by: Online Community Member
Hi...I had radical prostectomy 14 months ago and a gleeson score the same as your husband

Yes, but so far as I can see you did not have spread to the seminal vesicles, prostate bed or, more importantly, lymph glands. It's a different ball game, if you'll forgive the expression.

Jules

User
Posted 03 Mar 2024 at 11:23
Jules....True ...I'd always get a 2nd opinion as well which is the path I took....well worth the input in what is a very difficult situation,....I was always going to remove "the mother ship" as someone else stated.....my wife was unsure

Take care and be focused as unfortunately this cancer is crafty!!

User
Posted 13 Mar 2024 at 12:38

To update all the great people on this forum who responded to my earlier posts, husband now has radiology appt BEFORE scheduled date for surgery - phew! Had to push for it though. He is leaning towards surgery now although will listen to what the radiologist says. This is partly due to the emotional toll of waiting and it being months before RT and the prospect of 3 years’ hormone therapy. We feel that he must be a viable candidate for surgery notwithstanding diagnosis, or surgeon would not have seen him. Accept likelihood of RT being needed later but surgery plus salvage RT feels like a two pronged attack whereas pathway on a recurrence after first line RT is less clear - although radiology appt may clarify.

My new question is what he should be asking about after care if he goes ahead with surgery i.e. as well as the incontinence and almost certain ED, presumably will still need to rehab penis etc just to feel a bit more like normal. Will the hospital provide rehab or support in this? He doesn’t care at the moment but I expect he will care afterwards. Also thinking about other issues like potential for lymphoedema. He is seeing specialist nurse before the op to talk about these things and the impact of surgery but only because he asked to. 

User
Posted 13 Mar 2024 at 21:32

The level of rehab support for ED is very much a post code lottery. If there are going to be some nerves spared then depending where you are, he may get prescribed 5mg daily Cialis (Tadalafil). This increases blood flow around the battered and bruised nerve bundles and is supposed to speed up healing. A vacuum pump is going to be needed down the line for the penile rehab. In the absence of natural erections  this will help prevent penile atrophy. The CNS was helpful in getting my GP to prescribe a vacuum pump and with a bit more pushing I eventually got a prescribed 20mg Tadalafil twice per week. This is more of an event dose than a rehab dose but it is better than nothing. It is good that he is talking to a specialist nurse about Lymphoedema. I felt was a bit glossed over with me. I do find it's a bit of a pain having to wear a full length compression stocking for the rest of my life. However I don't think lymphoedema to this extent is all that common.

 
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