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Local advanced prostate cancer - treatment pathway qu

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User
Posted 02 Jan 2024 at 09:27

My husband has recently been diagnosed with Gleason 4+7 T3b - cancer in all 10 areas of prostate that were biopsied and it has started to spread to one seminal vesicle. Cambridge PG score of 3. Bone scan and CT were clear but he is having a PSMA PET scan because one lymph node in groin looked big on MRI in October (although this may be due to cellulitis in same leg the week before MRI so hoping it will be nothing). If the PET scan is clear, he can choose between surgery and HT plus radiotherapy. My question is, due to the stage of the cancer ie. it isn’t localised in prostate, is it better to opt for HT plus RT rather than have the trauma of major surgery and then maybe end up having salvage RT anyway? This possibility wasn’t mentioned at his recent hospital consultation with a specialist nurse but I’ve been reading up. This forum is really helpful, thanks all. 

User
Posted 02 Jan 2024 at 20:55

I went down the surgery route for my T3b diagnosis, although my PCa wasn’t quite as extensive as your husband’s. I was offered RT/HT or prostatectomy (open surgery) with surgery being favoured by the MDT. Brachytherapy wasn’t an option because of the reason’s mentioned by Andy62 but that was never explained to me at the time. I was made aware that there was a likelihood of needing SRT as a secondary treatment at some stage. The surgery included removal of 34 local lymph nodes (one of which was found to be cancerous). The histology on the prostate also showed up a positive margin so, sure enough, six months later I was undergoing SRT. I am now 14 months post SRT with an undetectable PSA. My choice of treatment achieved the desired result in the end but whether it was the best route to get there I’ll never know. I do draw some comfort from the thought that if I had chosen the other route, I would probably still be looking at a further 12 months of hormone therapy to endure.

User
Posted 02 Jan 2024 at 11:31

Not many surgeons will offer to do a prostatectomy for T3b, because T3b increases the risk of needing salvage radiotherapy afterwards.

With T3b and the whole prostate being infected, I would think the risk of micro-mets outside the prostate must be higher even if the PSMA PET scan doesn't find any, so I would consider asking for radiotherapy, and also to include the pelvic lymph nodes at a lower dose (unless cancer is found in them, in which case they'll include them at normal dose anyway).

If the scan doesn't show any spread to local lymph nodes, then another option might be HDR Boost, where they do lower level external beam radiotherapy to prostate, seminal vesicles, and pelvic lymph nodes, and then boost the radiotherapy to the prostate and (in your case) seminal vesicles using high dose rate brachytherapy. This is what I had, except I was T3a so the HDR brachytherapy didn't include seminal vesicles in my case. Not many centres can do HDR Brachytherapy (and LDR/seed Brachytherapy can't be used for T3b because you can't get permanent seeds in the seminal vesicles), so if you wanted this option, you might need referring to another treatment centre.

User
Posted 03 Jan 2024 at 20:50
Mary - as there is spread to the SVs, it seems pretty important to clarify with the surgeon whether the proposed surgery would be nerve-sparing or non-nerve-sparing - the impact and side effects of the two are quite different. If the proposal is not to preserve the nerves, RT / HT starts to look much more attractive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2024 at 22:23

I had advanced prostate cancer, Gleason 4-3 tb3 , I went for robotic surgery, lymph nodes,nerves semial sack all removed-   8 weeks later all samples came back , with nothing found , psa now undetectable now psa to be checked every 3 months for next two years then twice a year for 3 years total 5 , now At physio which is going well, e d and night pads down to 1 day pads 4-5. ,slow progress but am not give up yet 

they say your first choice is your best , that’s how I fell ,good luck with your choices

User
Posted 25 Jan 2024 at 22:42

I’m so glad you were given that choice Gerry, I would have chosen that route too if I’d been given the option. I do sometimes question the motives for the MDT ruling out surgery but I will just have to get on with dealing with the side effects of what was not my first choice…and hope the outcome is curative.

Derek

 

User
Posted 02 Jan 2024 at 13:31
It may be that they are just waiting for all the scans to be complete before they discuss the best treatment options but it does sound as though HT/RT will be the preferred route.
User
Posted 02 Jan 2024 at 14:45
You say your husband is under a major city teaching hospital and in that case I would think he could be offered the most appropriate form of RT which from what we have been told would seem to be a good way forward.in his circumstances.
Barry
User
Posted 03 Jan 2024 at 15:33

I am in a similar situation, full results last week , psa 36.7 , Gleason 4+4 , T3b, I was told removal was not an option as too high risk and may cause spread , started on HM straight away and also to get steroids and injection plus also Abiratone , for 12 wks then a month of RT 

It’s all a bit overwhelming to be honest at 59 yrs and working fulltime

mental side effects more than meds at moment , not sure if I should consider time out from work 

or continue , work in admin , but can be taxing ?

any advice welcome , regards what to expect in lead up to RT

Edited by member 03 Jan 2024 at 15:34  | Reason: Not specified

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User
Posted 02 Jan 2024 at 11:31

Not many surgeons will offer to do a prostatectomy for T3b, because T3b increases the risk of needing salvage radiotherapy afterwards.

With T3b and the whole prostate being infected, I would think the risk of micro-mets outside the prostate must be higher even if the PSMA PET scan doesn't find any, so I would consider asking for radiotherapy, and also to include the pelvic lymph nodes at a lower dose (unless cancer is found in them, in which case they'll include them at normal dose anyway).

If the scan doesn't show any spread to local lymph nodes, then another option might be HDR Boost, where they do lower level external beam radiotherapy to prostate, seminal vesicles, and pelvic lymph nodes, and then boost the radiotherapy to the prostate and (in your case) seminal vesicles using high dose rate brachytherapy. This is what I had, except I was T3a so the HDR brachytherapy didn't include seminal vesicles in my case. Not many centres can do HDR Brachytherapy (and LDR/seed Brachytherapy can't be used for T3b because you can't get permanent seeds in the seminal vesicles), so if you wanted this option, you might need referring to another treatment centre.

User
Posted 02 Jan 2024 at 12:41
all sounds sensible, thanks. I can’t understand why surgery is being offered with equal weight to radiotherapy given the diagnosis so he will ask once through the PET scan. It seems like so much of this the patient has to work out for themselves. Other treatment options haven’t been mentioned but he is under a major city teaching hospital so I would have thought they would offer a range of treatments and new treatments.
User
Posted 02 Jan 2024 at 13:31
It may be that they are just waiting for all the scans to be complete before they discuss the best treatment options but it does sound as though HT/RT will be the preferred route.
User
Posted 02 Jan 2024 at 14:45
You say your husband is under a major city teaching hospital and in that case I would think he could be offered the most appropriate form of RT which from what we have been told would seem to be a good way forward.in his circumstances.
Barry
User
Posted 02 Jan 2024 at 20:55

I went down the surgery route for my T3b diagnosis, although my PCa wasn’t quite as extensive as your husband’s. I was offered RT/HT or prostatectomy (open surgery) with surgery being favoured by the MDT. Brachytherapy wasn’t an option because of the reason’s mentioned by Andy62 but that was never explained to me at the time. I was made aware that there was a likelihood of needing SRT as a secondary treatment at some stage. The surgery included removal of 34 local lymph nodes (one of which was found to be cancerous). The histology on the prostate also showed up a positive margin so, sure enough, six months later I was undergoing SRT. I am now 14 months post SRT with an undetectable PSA. My choice of treatment achieved the desired result in the end but whether it was the best route to get there I’ll never know. I do draw some comfort from the thought that if I had chosen the other route, I would probably still be looking at a further 12 months of hormone therapy to endure.

User
Posted 02 Jan 2024 at 22:21

Thanks so much for sharing your experience and that is a really good point about lengthy hormone therapy. A lot of unappealing options unfortunately! 

User
Posted 03 Jan 2024 at 15:33

I am in a similar situation, full results last week , psa 36.7 , Gleason 4+4 , T3b, I was told removal was not an option as too high risk and may cause spread , started on HM straight away and also to get steroids and injection plus also Abiratone , for 12 wks then a month of RT 

It’s all a bit overwhelming to be honest at 59 yrs and working fulltime

mental side effects more than meds at moment , not sure if I should consider time out from work 

or continue , work in admin , but can be taxing ?

any advice welcome , regards what to expect in lead up to RT

Edited by member 03 Jan 2024 at 15:34  | Reason: Not specified

User
Posted 03 Jan 2024 at 17:44
User
Posted 03 Jan 2024 at 20:50
Mary - as there is spread to the SVs, it seems pretty important to clarify with the surgeon whether the proposed surgery would be nerve-sparing or non-nerve-sparing - the impact and side effects of the two are quite different. If the proposal is not to preserve the nerves, RT / HT starts to look much more attractive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2024 at 12:28

So my husband’s PET scan results came back and he has cancer in one seminal vesicle and lymph nodes at top of both legs (it was a phone call to him so I’m not sure how many nodes). Not the results we wanted but could be worse as no further spread. Specialist nurse says they can remove prostate and lymph nodes which he said is recommended for someone of 57. This seems to be the opposite of what others say here about treatment for cancer at the stage he has it - T3b G 4+3 and now N1. He was CPG 3 but must be CPG 4 now?

He can expect to see a doctor (for the first time other than the doctor who did his biopsies and frightened him to death) in March. I don’t know if this will be a surgeon or urologist or oncologist but March is ages away. Privately I’m expecting him to need radiotherapy afterwards but obviously I’m not a doctor.

He’s started hormone tablets today (not sure what they are as I have to take a softly softly approach with my questions) which is good but no one has advised on the side effects so he has emailed the nurse for a conversation. I’m unimpressed with the care he has had so far honestly.

 

Also finding  it hard because I can’t ask all the questions I want to, and also being supportive without making a fuss is a tricky balance.

On a more positive note I’m glad no spread other than locally and also that he went for PSA in September, otherwise we still wouldn’t know. There should be a national screening programme. 

I’d be interested to know if others have had similar experiences to any of this. 

User
Posted 25 Jan 2024 at 13:10

Hi Mary,

Im T3bN0M0, so spread to a seminal vesicle and PSA 36. They wouldn’t give me the option of surgery because there was too much risk of requiring SRT after it, so in Scotland they seem to take the attitude that they might as well just go down the HT/RT route in the first place so that you don’t have to deal with both. It also might be due to my age, I’m 67.

The tablets he has been given may be Bicalutamide. I took these for a month and 2 weeks before my first HT injection. They stop Testosterone flare when you get the injection and work differently in that they stop the testosterone reaching the prostate, whereas the HT injections stop you producing testosterone.

It’s a shame you feel you have to walk on eggshells with your OH, as communication is so important in being able to give him the support he needs. I’m wondering whether he might benefit from going along to a local support group such as Maggies….it’s sometimes easier to discuss your feelings with other men in the same boat…and the support he will get is amazing…as well as the experiences of other guys who’ve been through it.

I also feel sad that you feel you’ve not had the care you were hoping for. My care in Fife has been first class. I just need to phone my CNS,leave a message and they phone you back within 24 hours if they’re not available when you call. My treatment has also been very good apart from a breakdown in Communications between 2 different health boards - Fife don’t have Oncology so it had to be Edinburgh. You DO sometimes need to be proactive in chasing up treatment and appointments but that’s something you could certainly help with.

All the best for the future.

Derek

User
Posted 25 Jan 2024 at 13:25
I was G7 when I went in for my RARP and G9 when it was on the lab table so although I have a PSA of 0 after the op, it has now started to rise and SRT is on the table for later this year I imagine.

I think one of the considerations is how much radiation is involved if they leave the prostate/SV and lymph nodes that are known to be cancerous in place - it is likely to be much higher without surgery than with.

I do wonder whether surgeons not performing RP with a T3b is because SRT post surgery would be considered a 'failure'?

User
Posted 25 Jan 2024 at 14:18

Steve, sorry to hear you are looking at radiotherapy but I’m expecting the same for my OH. It makes sense to me (similarly for breast cancer - many people have surgery plus further treatment). I hope you get sorted quickly. What you say about levels of radiation and the perceived failure of surgery plus radiotherapy makes sense to me.

Decho, I told my OH about the range of views and he said he’ll wait to talk to the consultant thanks very much! Not sure he 100% values my armchair assessments but that’s ok. We have different ways of coping so meet somewhere in the middle. Glad I can talk things over with friends and in this group. He’s going to talk to a couple of people who have been through this and come out the other side, which is good.

Best of luck to you both. 

User
Posted 25 Jan 2024 at 22:23

I had advanced prostate cancer, Gleason 4-3 tb3 , I went for robotic surgery, lymph nodes,nerves semial sack all removed-   8 weeks later all samples came back , with nothing found , psa now undetectable now psa to be checked every 3 months for next two years then twice a year for 3 years total 5 , now At physio which is going well, e d and night pads down to 1 day pads 4-5. ,slow progress but am not give up yet 

they say your first choice is your best , that’s how I fell ,good luck with your choices

User
Posted 25 Jan 2024 at 22:42

I’m so glad you were given that choice Gerry, I would have chosen that route too if I’d been given the option. I do sometimes question the motives for the MDT ruling out surgery but I will just have to get on with dealing with the side effects of what was not my first choice…and hope the outcome is curative.

Derek

 

User
Posted 27 Jan 2024 at 06:49

Thanks it’s helpful to know what treatment you have had with similar diagnosis. I’ve decided they must still think he is a good candidate for surgery - PET scan not standard at this point but I assume that’s why they did one - so I think he’s going for surgery. Just another long wait now but hormone tablets in the interim. 

All the best with your progress. 

User
Posted 27 Jan 2024 at 07:17

Hi Mary,

Almost  a year ago, I had T3a, Gleason 8 (4+4) cancer and had RARP , non nerve sparing, and he removed SVs and 9 lymph nodes. Since then I've had 3 PSA checks which have all come back undetectable. I've got another on Monday.

I was put on HT whilst they decided I was fit enough for surgery. They think this maybe the reason the Gleason of my removed prostate had risen to 9 (4+5).

Best of luck k to you both.

Adrian

 

 

User
Posted 27 Jan 2024 at 07:55

Thanks Adrian and I hope everything continues to go well for you - sounds like it will! Can I ask how long you were on HT before your surgery? Thanks 

 
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