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Second line treatments after radiotherapy

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User
Posted 27 Feb 2024 at 12:35

Hello,

I’ve been on this forum a few times and found it really helpful in my husband’s journey through diagnosis and considering treatment options.

My question today is whether anyone here has experience of treatment other than hormone therapy on a recurrence after radiotherapy as first line treatment eg. focal therapies or targeted radiotherapy (not in same place)?

He has been diagnosed with Gleason 4+3  T3b N1 (two lymph nodes showed up on PSMA PET scan).

Specialist urse said he was still a candidate for surgery but when we saw the surgeon he indicated that radiotherapy might be a better option because it might be hard to remove all the cancer through surgery.

No real guidance but the impression is that he would be likely to need salvage RT later anyway so why endure surgery too? This is what I had thought previously from reading around and asking questions here. But second line treatment is a key consideration because whether he chooses surgery or RT recurrence is quite likely. He doesn’t want to limit options down the line by not choosing surgery now. Thanks in advance for any info. 

User
Posted 29 Feb 2024 at 20:37

I am with LynEyre- definitely try to get a private consultation. You are in an impossible situation here and the very least you need is a decent set of information. You may or may not have many choices in reality- but as Lyn and many others on here have said, the most important thing is to be at peace with whatever the game plan is.

I am probably breaking all sort of site protocols here but needs must- if you can't fund a private consultation, DM me.

User
Posted 27 Feb 2024 at 12:35

Hello,

I’ve been on this forum a few times and found it really helpful in my husband’s journey through diagnosis and considering treatment options.

My question today is whether anyone here has experience of treatment other than hormone therapy on a recurrence after radiotherapy as first line treatment eg. focal therapies or targeted radiotherapy (not in same place)?

He has been diagnosed with Gleason 4+3  T3b N1 (two lymph nodes showed up on PSMA PET scan).

Specialist urse said he was still a candidate for surgery but when we saw the surgeon he indicated that radiotherapy might be a better option because it might be hard to remove all the cancer through surgery.

No real guidance but the impression is that he would be likely to need salvage RT later anyway so why endure surgery too? This is what I had thought previously from reading around and asking questions here. But second line treatment is a key consideration because whether he chooses surgery or RT recurrence is quite likely. He doesn’t want to limit options down the line by not choosing surgery now. Thanks in advance for any info. 

User
Posted 27 Feb 2024 at 17:25

Mary , I had surgery in 2014 , salvage RT to the prostate bed in 2017. In 2022 I had SABR treatment to a pelvic lymph node and in 2023 had more SABR treatment to another pelvic lymph node. Just waiting to see what happens next. SABR treatment on the NHS is limited to 3 hot spots at my hospital,at the moment. 

I used our health insurance for the second lot of SABR treatment. A few years ago I would have been put on HT for life after salvage RT didn't eradicate the cancer.

It is often said, why have surgery if you are going to need follow up RT, our senior oncologist believes in getting rid of the mother ship.

Good luck with your decision.

Thanks Chris 

 

User
Posted 27 Feb 2024 at 18:17

Hi Mary,

Has he seen the Oncologist yet? Or have they given him an idea of how long he would be on HT if he chose the HT/RT route. I’m T3bN0M0 but wasn’t offered surgery because they felt that there was too high a risk of needing SRT and they felt ‘why put me through that’. So my choice was taken away much to my disappointment(I’m in Scotland). RT was a breeze for me and I wouldn’t worry about that. HT on the other has for some people(including me) has some serious QOL affecting side-effects and he could be on it for 3 years like me.
Maybe someone who has required SRT could highlight how long they were on HT? My impression is that it wouldn’t be for 3 years.

Good luck with the decision and treatment.

Derek

User
Posted 27 Feb 2024 at 19:05

This is going to depend heavily on where the recurrence is, and exactly what treatment has already been given.

What was the original diagnosis and treatment?

Also, besides two lymph nodes and the seminal vesicle(s), is the recurrence anywhere else?

Edited by member 27 Feb 2024 at 19:08  | Reason: Not specified

User
Posted 27 Feb 2024 at 21:05

Hi MarySmith. Your husband has more or less the same diagnosis as me, apart from the fact I didn't get have the benefit of a PSMA PET scan at the time of diagnosis. I opted for surgery which was the recommendation of the MDT but I was also given the option of RT with three years of HT. It seems different regions take different views as to the surgical option with a T3b, as Decho can testify. I didn't like the idea of the prolonged HT so I chose surgery, although I was  aware that follow up SRT was a distinct possibility at some point. The RP included extensive lymphadenectomy. One of the 34 removed was found to be positive. Had that been known at diagnosis maybe the MDT recommendation might have been different.

The outcome was that I needed SRT to the prostate bed 6 months later (along with six months of Bical). 14 months later PSA is still undetectable. I gambled (and lost) on RP because the surgeon felt there was a good chance getting all the cancer out. In your husband's case it seems the surgeon is not confident of achieving that. If two nodes have lit up on the scan it is possible that other pelvic nodes have undetectable micro mets. It's a tricky decision for your husband but it's always worth listening to the advice of the medical team. Good luck.

User
Posted 27 Feb 2024 at 23:05

Originally Posted by: Online Community Member

Hi MarySmith. Your husband has more or less the same diagnosis as me, apart from the fact I didn't get have the benefit of a PSMA PET scan at the time of diagnosis. I opted for surgery which was the recommendation of the MDT but I was also given the option of RT with three years of HT. It seems different regions take different views as to the surgical option with a T3b, as Decho can testify. I didn't like the idea of the prolonged HT so I chose surgery, although I was  aware that follow up SRT was a distinct possibility at some point. The RP included extensive lymphadenectomy. One of the 34 removed was found to be positive. Had that been known at diagnosis maybe the MDT recommendation might have been different.

The outcome was that I needed SRT to the prostate bed 6 months later (along with six months of Bical). 14 months later PSA is still undetectable. I gambled (and lost) on RP because the surgeon felt there was a good chance getting all the cancer out. In your husband's case it seems the surgeon is not confident of achieving that. If two nodes have lit up on the scan it is possible that other pelvic nodes have undetectable micro mets. It's a tricky decision for your husband but it's always worth listening to the advice of the medical team. Good luck.

You see Chris, I don’t see you ‘gambled(and lost)’, I think you won , ok maybe not the ideal initial outcome, but instead of 3 years of HT you had 12 months of treatment, of which 6 months on HT was Bicalutamide,  the side effects of which are not as severe as anything like Prostap according to my research. And now 14 months later you are undetectable. If you’d gone down the HT/RT route you’d probably still be in the middle of HT. I am delighted for you and anyone else that can avoid long term ADT. Given the choice I too would have gambled, and the cynic in me says there was another reason why surgery was ruled out.😟

Edited by member 27 Feb 2024 at 23:07  | Reason: Not specified

User
Posted 29 Feb 2024 at 09:11

Firstly Mary, don’t feel bad because other people are ‘dealing with worse’, this forum is here for everyone…and everyone is dealing with their own battles, big or small.

It’s very poor that your husband is not able to see the Oncologist before his Op, would it be an option to postpone the Op until after he has seen the Onco? You really would think they could squeeze in an appointment given the situation, even a telephone appointment.

It’s unwise for anyone on here to give you advice on which option your husband should choose, all we can do is relate our own personal experiences from our own treatment. It also seems that the medical profession don’t want to make a decision for you if you have a choice, although it seems that some will certainly push you to choose one way or the other. If your husband lived in Scotland he wouldn’t be given a choice, it would be HT/RT,  but I’m still unconvinced about the reasons given why.

Try do as many things together that bring you happiness and make you smile, it really helps to take your mind of this disease and decisions you have to make, and it will perhaps make it clearer for you on which way to go.

Good luck whichever way you choose.

Derek

User
Posted 29 Feb 2024 at 19:41
Oh Mary, I feel really cross for you - that is awful!

Is there any way you could fund the £250 - £300 to see the oncologist privately? That 20 minutes or whatever could be all you need - an opportunity to ask questions and get some clarity / peace of mind - in which case it is money well spent. We are members of Simply Health (used to be the Hospital fund) and can claim back £100 of a private appointment - are you a member of a similar club / employer benefit?

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

User
Posted 01 Mar 2024 at 00:12
I think perhaps some crossed wires - you can see a consultant for an appointment without it affecting your access to the planned NHS treatment and I think olefogey & I were suggesting that you pay to see the onco that you have already been referred to ... not a different onco. No additional copies of scans, etc needed when you are paying to see the person you are waiting to see anyway!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Mar 2024 at 17:39

Marysmith: It's really all about giving you some properly informed choices. This gig is hard enough without feeling that you have not had a decent range of options which allow you to pick a treatment strategy which meets your preferences and priorities ( both clinical and emotional). You and your partner will never know if you make the right choice, but having a choice - if it's possible- is emotionally important.  

 

Lyn- delete as necessary now😊. I knew I was probably pushing it a bit, but as you say, at the beginning and at end of the day this site is all about helping out where one can. 

User
Posted 02 Mar 2024 at 20:22

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 21:01

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 09:25

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 13 Mar 2024 at 11:38

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 20:32

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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User
Posted 27 Feb 2024 at 17:25

Mary , I had surgery in 2014 , salvage RT to the prostate bed in 2017. In 2022 I had SABR treatment to a pelvic lymph node and in 2023 had more SABR treatment to another pelvic lymph node. Just waiting to see what happens next. SABR treatment on the NHS is limited to 3 hot spots at my hospital,at the moment. 

I used our health insurance for the second lot of SABR treatment. A few years ago I would have been put on HT for life after salvage RT didn't eradicate the cancer.

It is often said, why have surgery if you are going to need follow up RT, our senior oncologist believes in getting rid of the mother ship.

Good luck with your decision.

Thanks Chris 

 

User
Posted 27 Feb 2024 at 18:17

Hi Mary,

Has he seen the Oncologist yet? Or have they given him an idea of how long he would be on HT if he chose the HT/RT route. I’m T3bN0M0 but wasn’t offered surgery because they felt that there was too high a risk of needing SRT and they felt ‘why put me through that’. So my choice was taken away much to my disappointment(I’m in Scotland). RT was a breeze for me and I wouldn’t worry about that. HT on the other has for some people(including me) has some serious QOL affecting side-effects and he could be on it for 3 years like me.
Maybe someone who has required SRT could highlight how long they were on HT? My impression is that it wouldn’t be for 3 years.

Good luck with the decision and treatment.

Derek

User
Posted 27 Feb 2024 at 19:05

This is going to depend heavily on where the recurrence is, and exactly what treatment has already been given.

What was the original diagnosis and treatment?

Also, besides two lymph nodes and the seminal vesicle(s), is the recurrence anywhere else?

Edited by member 27 Feb 2024 at 19:08  | Reason: Not specified

User
Posted 27 Feb 2024 at 21:05

Hi MarySmith. Your husband has more or less the same diagnosis as me, apart from the fact I didn't get have the benefit of a PSMA PET scan at the time of diagnosis. I opted for surgery which was the recommendation of the MDT but I was also given the option of RT with three years of HT. It seems different regions take different views as to the surgical option with a T3b, as Decho can testify. I didn't like the idea of the prolonged HT so I chose surgery, although I was  aware that follow up SRT was a distinct possibility at some point. The RP included extensive lymphadenectomy. One of the 34 removed was found to be positive. Had that been known at diagnosis maybe the MDT recommendation might have been different.

The outcome was that I needed SRT to the prostate bed 6 months later (along with six months of Bical). 14 months later PSA is still undetectable. I gambled (and lost) on RP because the surgeon felt there was a good chance getting all the cancer out. In your husband's case it seems the surgeon is not confident of achieving that. If two nodes have lit up on the scan it is possible that other pelvic nodes have undetectable micro mets. It's a tricky decision for your husband but it's always worth listening to the advice of the medical team. Good luck.

User
Posted 27 Feb 2024 at 21:34

Mary

If you have a choice you could seriously consider surgery after consulting an oncologist. Removing the prostate and the lymph nodes eliminates the source of the disease and you are then left with RT for dealing with the cancer which may have spread. Of course the surgery has the risk of ED and incontinence. If you follow the RT route the prostate gland is very difficult to remove afterwards. I suggest you get more advice before making up your minds. Best you can do is try and eliminate the possibility of regret, once you have made the choice. Good luck. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 27 Feb 2024 at 21:42

Originally Posted by: Online Community Member
But second line treatment is a key consideration because whether he chooses surgery or RT recurrence is quite likely.

Have you been told that is the case by a specialist?

Jules

User
Posted 27 Feb 2024 at 23:05

Originally Posted by: Online Community Member

Hi MarySmith. Your husband has more or less the same diagnosis as me, apart from the fact I didn't get have the benefit of a PSMA PET scan at the time of diagnosis. I opted for surgery which was the recommendation of the MDT but I was also given the option of RT with three years of HT. It seems different regions take different views as to the surgical option with a T3b, as Decho can testify. I didn't like the idea of the prolonged HT so I chose surgery, although I was  aware that follow up SRT was a distinct possibility at some point. The RP included extensive lymphadenectomy. One of the 34 removed was found to be positive. Had that been known at diagnosis maybe the MDT recommendation might have been different.

The outcome was that I needed SRT to the prostate bed 6 months later (along with six months of Bical). 14 months later PSA is still undetectable. I gambled (and lost) on RP because the surgeon felt there was a good chance getting all the cancer out. In your husband's case it seems the surgeon is not confident of achieving that. If two nodes have lit up on the scan it is possible that other pelvic nodes have undetectable micro mets. It's a tricky decision for your husband but it's always worth listening to the advice of the medical team. Good luck.

You see Chris, I don’t see you ‘gambled(and lost)’, I think you won , ok maybe not the ideal initial outcome, but instead of 3 years of HT you had 12 months of treatment, of which 6 months on HT was Bicalutamide,  the side effects of which are not as severe as anything like Prostap according to my research. And now 14 months later you are undetectable. If you’d gone down the HT/RT route you’d probably still be in the middle of HT. I am delighted for you and anyone else that can avoid long term ADT. Given the choice I too would have gambled, and the cynic in me says there was another reason why surgery was ruled out.😟

Edited by member 27 Feb 2024 at 23:07  | Reason: Not specified

User
Posted 27 Feb 2024 at 23:36

Yes we were told recurrence is fairly likely by the urologist. 

User
Posted 28 Feb 2024 at 02:00

With the spread you've mentioned it would seem almost certain that there'll be a need for secondary treatment after a prostatectomy, if that's the first choice. Surgery does have side effects of course, for example removing lymph glands often strips out a number of glands some of which will not be cancerous. Oedema can be a result.

If there's spread to seminal vesicles and lymph glands things do get tricky but it is possible in some cases to treat the prostate, seminal vesicles, lymph glands [and due to proximity the prostate bed] with RT. It rather depends on which lymph glands are involved and if they're "in range" for a LINAC RT machine.

I'd be asking your oncologist the question, about recurrence with RT. Can the lymph glands be treated at the same time as the prostate with RT if you went that way?

Secondary treatments have a slightly lower success rate than primary treatments.

In answer to your original question, I think there are people on this forum who have had targeted therapy after RT.

Another factor here will be your husband's age.

Jules

 

Edited by member 28 Feb 2024 at 03:34  | Reason: Not specified

User
Posted 29 Feb 2024 at 04:38
They won't want to do focal if cancer is outside prostate so reasons for other treatments in this case need to be carefully assessed and explained.
Barry
User
Posted 29 Feb 2024 at 08:39

Thanks so much for all the helpful replies.

Unfortunately my husband’s care/clinical advice has been quite fractured and yesterday the specialist nurse indicated that he might not get to see a radiologist/oncologist until after 4 April when surgery is scheduled. The whole point of that discussion would be to make an informed decision after the surgeon was equivocal about surgery vs radiotherapy so useless really.

He is feeling quite depressed, probably because of the situation but perhaps also because he has been on bicalutimide for six weeks to stop the cancer spreading.

I know lots of people are dealing with worse but it’s a challenging time, also trying to keep it all together for our teenage children. Personally I would probably go for surgery (accepting the side effects as would not be nerve sparing) and embrace the likelihood of salvage RT to blitz it but it’s not my body so I don’t know how it feels. 

Thanks again.

User
Posted 29 Feb 2024 at 09:11

Firstly Mary, don’t feel bad because other people are ‘dealing with worse’, this forum is here for everyone…and everyone is dealing with their own battles, big or small.

It’s very poor that your husband is not able to see the Oncologist before his Op, would it be an option to postpone the Op until after he has seen the Onco? You really would think they could squeeze in an appointment given the situation, even a telephone appointment.

It’s unwise for anyone on here to give you advice on which option your husband should choose, all we can do is relate our own personal experiences from our own treatment. It also seems that the medical profession don’t want to make a decision for you if you have a choice, although it seems that some will certainly push you to choose one way or the other. If your husband lived in Scotland he wouldn’t be given a choice, it would be HT/RT,  but I’m still unconvinced about the reasons given why.

Try do as many things together that bring you happiness and make you smile, it really helps to take your mind of this disease and decisions you have to make, and it will perhaps make it clearer for you on which way to go.

Good luck whichever way you choose.

Derek

User
Posted 29 Feb 2024 at 19:41
Oh Mary, I feel really cross for you - that is awful!

Is there any way you could fund the £250 - £300 to see the oncologist privately? That 20 minutes or whatever could be all you need - an opportunity to ask questions and get some clarity / peace of mind - in which case it is money well spent. We are members of Simply Health (used to be the Hospital fund) and can claim back £100 of a private appointment - are you a member of a similar club / employer benefit?

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

User
Posted 29 Feb 2024 at 20:37

I am with LynEyre- definitely try to get a private consultation. You are in an impossible situation here and the very least you need is a decent set of information. You may or may not have many choices in reality- but as Lyn and many others on here have said, the most important thing is to be at peace with whatever the game plan is.

I am probably breaking all sort of site protocols here but needs must- if you can't fund a private consultation, DM me.

User
Posted 29 Feb 2024 at 22:37

Thanks for sympathy and input! Sometimes I feel like we are the ones who are crazy but the NHS is really dire at the moment. Anyway OH got the radiologist’s number today and spoke to their secretary who said they were reviewing his file next week so he should call back if he hasn’t heard by Friday. So fingers crossed. 

olefogey thank you, we could fund a private consultation (and actually my OH had one in the initial stages when referral took too long) but at this point feel overall that he is better off under the NHS for time being if he can get this consultation. If he does have surgery it will be early in April which is not too far away and presumably radiotherapy if he chooses it will go ahead after a few more months of hormone treatment. 

It shouldn’t be this difficult though - talk about making a difficult situation worse. 

If he doesn’t get the consultation we will definitely consider going private so I guess we should ask for copies of scans and results now? Is that easy to do? Thanks again. 

User
Posted 01 Mar 2024 at 00:12
I think perhaps some crossed wires - you can see a consultant for an appointment without it affecting your access to the planned NHS treatment and I think olefogey & I were suggesting that you pay to see the onco that you have already been referred to ... not a different onco. No additional copies of scans, etc needed when you are paying to see the person you are waiting to see anyway!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Mar 2024 at 00:17
Sorry Mary - off topic and I don't want to take away from your thread so I will delete once I think OF has seen this.

Olefogey - it probably breaks some rule somewhere and opens us up to spammers but humanity wins! In the past, members here have had a whip round to pay for a member's taxis to & from hospital, someone's heating bills and, some years ago, contributions towards a funeral. In each case, the member was well established here and much loved.

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

User
Posted 01 Mar 2024 at 14:29

Thanks that’s really helpful and now i understand. I think there has been a conversation missing in all of this about treatment choices. Specialist nurse sent leaflets but that is not enough. If he doesn’t get a pre surgery radiology appt by the end of next week we’ll find out about seeing them privately. 

User
Posted 02 Mar 2024 at 17:39

Marysmith: It's really all about giving you some properly informed choices. This gig is hard enough without feeling that you have not had a decent range of options which allow you to pick a treatment strategy which meets your preferences and priorities ( both clinical and emotional). You and your partner will never know if you make the right choice, but having a choice - if it's possible- is emotionally important.  

 

Lyn- delete as necessary now😊. I knew I was probably pushing it a bit, but as you say, at the beginning and at end of the day this site is all about helping out where one can. 

User
Posted 02 Mar 2024 at 20:22

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 21:01

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 02 Mar 2024 at 23:03

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 09:03

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 09:25

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 10:00

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 10:23
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 11:38

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 20:32

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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