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T3B SV1 choice of surgery or radiotherapy?

User
Posted 15 Sep 2024 at 22:08

After nearly 3 years of monitoring PSA levels around the 8 level they went to over 10 and I was given a biopsy showing a Gleason score of 9 (4 +5). Started on hormone therapy in 11th July 2024.  After a PET scan was told it was a T3B with SV1 and was given an appointment for an oncologist on 16th October 2024 to discuss radiotherapy.

Because of the delay I paid for a second opinion with a private specialist who recommended surgery as soon as possible saying they could be a large degree of nerve sparing on one side and quoting 95% of patients have no leakage within a year.  The cost quoted for the hospital stay and operation was over £19K.

I then spoke to another locum (about the 13th) at my NHS trust about having a prostatectomy done under them and finally spoke to a consultant this week in person.  He basically said the decision is mine but gave me some worryingly statistics that the private consultant has not discussed.

Only a 20 – 30% chance of gaining back and erectile function as opposed to 40 – 50% with radiotherapy. Also because there is a protrusion from the prostate towards the large bowl there is a danger of perforation leading to a colostomy bag and a 5% chance it not being revisable.

I have also seen from a paper that a study in Sweden that there is a 50% rate of reoccurrence of after surgery of T3B SV1 cancer after surgery.

I got the impression from the NHS consultant that surgery would not be the preferred option in his opinion and we have a follow up consultation this Wednesday 18th September and was asking from other patients with a similar diagnosis which route they took and there outcomes, good or bad.

Thanks.

Kimpy

User
Posted 16 Sep 2024 at 18:40
I was T3b with spread to seminal vesicles, gleason 8 later up to 9 (after TURP). My oncologist was pretty clear saying no point in prostatectomy as already escaped the prostate & RT/HT will be needed anyway so I didnt have a choice. I didnt have any potential issues with bowel etc. Quite happy with treatment as its worked, up to now obviously, treatment finished summer 2018. Times change and some consultants may say its best to get rid of the prostate whatever the 'score'-I'm clearly not qualified to comment on that.

Peter

User
Posted 15 Sep 2024 at 22:08

After nearly 3 years of monitoring PSA levels around the 8 level they went to over 10 and I was given a biopsy showing a Gleason score of 9 (4 +5). Started on hormone therapy in 11th July 2024.  After a PET scan was told it was a T3B with SV1 and was given an appointment for an oncologist on 16th October 2024 to discuss radiotherapy.

Because of the delay I paid for a second opinion with a private specialist who recommended surgery as soon as possible saying they could be a large degree of nerve sparing on one side and quoting 95% of patients have no leakage within a year.  The cost quoted for the hospital stay and operation was over £19K.

I then spoke to another locum (about the 13th) at my NHS trust about having a prostatectomy done under them and finally spoke to a consultant this week in person.  He basically said the decision is mine but gave me some worryingly statistics that the private consultant has not discussed.

Only a 20 – 30% chance of gaining back and erectile function as opposed to 40 – 50% with radiotherapy. Also because there is a protrusion from the prostate towards the large bowl there is a danger of perforation leading to a colostomy bag and a 5% chance it not being revisable.

I have also seen from a paper that a study in Sweden that there is a 50% rate of reoccurrence of after surgery of T3B SV1 cancer after surgery.

I got the impression from the NHS consultant that surgery would not be the preferred option in his opinion and we have a follow up consultation this Wednesday 18th September and was asking from other patients with a similar diagnosis which route they took and there outcomes, good or bad.

Thanks.

Kimpy

User
Posted 16 Sep 2024 at 17:07

Hi Kimpy,

I was T3B and surgery was ruled out, I didn’t have the choice much to my disappointment. I had no option but to go with what the MDT advised but had I known more at the time I might have got a second opinion. There is no doubt with T3B, there is a high chance of reoccurrence, but at least you have a Plan B if it does by getting SRT. If I remember correctly my Onco told me I had a 60% chance of success have HT/RT, and if it didn’t work I would be on HT for life which I find quite scary. There’s also a danger of damage to other organs with RT…I was suppose to have 37 fractions to the Prostate, seminal Vesicles and Pelvic area, but that was ruled out because there was a serious risk of damaging my bowel….which part of was in the wrong place according to my Onco. HDR Bracytherapy boost was also ruled out because there was too much risk of having a long term catheter.

It must be difficult for you to decide when you are getting conflicting opinions and I can’t really advise which would be your best option as I’m not medically trained. Both treatments can have significant side effects and going down the HT/RT route is no walk in the park for some people(including me). With regards to ED you might also get that after RT…. I developed Peyronie’s disease, so although I can still get some kind of erection, it is deformed like and hour glass which causes me some distress and makes me sad to the point where I don’t really want sex ATM. I don’t know how I am going to feel when my libido comes back🤞🤞🤞 and I’m the meantime I am trying to correct the Peyronie’s….which is not easy.

All the best with your decision whatever it is.

Derek.

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User
Posted 16 Sep 2024 at 09:51

Hi mate.

I'm sorry that you've had to join 'The Club' Welcome to the forum. 

There are blokes on here who had Gleason 9(4+5) and Tb3 who had surgery and others who opted for RT/HT. Hopefully they'll make comment on their treatment and outcomes.

There seems to be a difference of opinion as to whether Tb3 is suitable for surgery. For some one here, surgery with that staging was ruled out.

I was T3a, Gleason 9(4+5) and had robotic surgery. Here's a link to how I got on.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

From the research I've done,  my risk of reoccurrence is far greater than 50%. Although, 18 months later, my PSA is undetectable, I still fear that at some time I'll have BCR had need further salvage treatment. 

Best of luck pal.

Edited by member 16 Sep 2024 at 10:00  | Reason: Additional text

User
Posted 16 Sep 2024 at 10:02

Hi Kimpy,

With the odds of ED and bowel problems, I would have to think twice about surgery. I had nerve sparing surgery, and ED wise, recovery was a long frustrating journey. I can see why the NHS surgeon gave you the impression that surgery would not be the preferred option for you. 

As far as treatment goes though, the fact that you started hormone therapy in July indicates that you have already started treatment. 

I hope this helps and others will comment with more expertise and advice. 

Good luck, 

Kev.

Edited by member 16 Sep 2024 at 13:58  | Reason: Typo

User
Posted 16 Sep 2024 at 17:07

Hi Kimpy,

I was T3B and surgery was ruled out, I didn’t have the choice much to my disappointment. I had no option but to go with what the MDT advised but had I known more at the time I might have got a second opinion. There is no doubt with T3B, there is a high chance of reoccurrence, but at least you have a Plan B if it does by getting SRT. If I remember correctly my Onco told me I had a 60% chance of success have HT/RT, and if it didn’t work I would be on HT for life which I find quite scary. There’s also a danger of damage to other organs with RT…I was suppose to have 37 fractions to the Prostate, seminal Vesicles and Pelvic area, but that was ruled out because there was a serious risk of damaging my bowel….which part of was in the wrong place according to my Onco. HDR Bracytherapy boost was also ruled out because there was too much risk of having a long term catheter.

It must be difficult for you to decide when you are getting conflicting opinions and I can’t really advise which would be your best option as I’m not medically trained. Both treatments can have significant side effects and going down the HT/RT route is no walk in the park for some people(including me). With regards to ED you might also get that after RT…. I developed Peyronie’s disease, so although I can still get some kind of erection, it is deformed like and hour glass which causes me some distress and makes me sad to the point where I don’t really want sex ATM. I don’t know how I am going to feel when my libido comes back🤞🤞🤞 and I’m the meantime I am trying to correct the Peyronie’s….which is not easy.

All the best with your decision whatever it is.

Derek.

User
Posted 16 Sep 2024 at 18:40
I was T3b with spread to seminal vesicles, gleason 8 later up to 9 (after TURP). My oncologist was pretty clear saying no point in prostatectomy as already escaped the prostate & RT/HT will be needed anyway so I didnt have a choice. I didnt have any potential issues with bowel etc. Quite happy with treatment as its worked, up to now obviously, treatment finished summer 2018. Times change and some consultants may say its best to get rid of the prostate whatever the 'score'-I'm clearly not qualified to comment on that.

Peter

User
Posted 16 Sep 2024 at 20:58

I was G9, T3 not in the seminal vesicles, but with extra prostatic extension. I don't know if that is T3a, b or c. Surgery was ruled out by the MDT with that diagnosis.

Brachy HDR and EBRT and HT was the treatment. That was in 2018, all is going well so far.

Dave

User
Posted 16 Sep 2024 at 21:51

Surgery not normally offered for T3b because recurrence rate is too high.

Sometimes it's only found to be T3b after the surgery, and those often need salvage radiotherapy.

User
Posted 16 Sep 2024 at 21:56

Originally Posted by: Online Community Member
Brachy HDR and EBRT and HT was the treatment. That was in 2018, all is going well so far.

I had the same treatment. Another patient was talking with my oncologist about this treatment (called HDR Boost), and asked what happens if it comes back? Oncologist said if it does come back, it won't be there. I found that comment quite reassuring.

User
Posted 17 Sep 2024 at 02:09

Hi Kimpy,

 

I'm in the US, but I had Retzius Sparing Robotic RP exactly 4 weeks ago today. I was stage T3aN0M0 (cancer broke through the capsule, PNI in right nerve bundle, but no SV invasion). PSA 12.7. My Gleason was 4+5 (w/ cribriform) at biopsy but was downgraded to 4+3 after the post RP histology report. My surgeon removed roughly 25 ~ 30% of my right nerve bundle, left side was fully spared. Despite all that, I have NO ED issues AT ALL post surgery. I'm not even using any pills (Cialis, Viagra). Don't need 'em. Don't want 'em.  As far as continence goes, I was 99% continent the day my catheter came out and at this point am not using any pads around the house (except overnight). I do wear one when I go out just in case. The only time I leak (and it's very little when I do) is during any straining like a hard cough or passing wind. I will also mention that I returned to my office job last week (at week 3 post surgery). I go in 3 days a week.

 

If you are considering surgery, I would say, the two most important factors (aside from degree of cancer) are 1) Your age and overall general health  and 2) The experience and skill of the surgeon. I was fortunate to have a very experienced surgeon who performs over 300 robotic surgeries per year. I am also relatively young (51) and am in good physical shape. My surgeon said that with regards to incontinence, he usually sees greater post-op issues in men that are overweight going into surgery. He also mentioned that the "Retzius sparing" technique helps patients to recover continence more quickly. I don't know if the Retzius sparing technique is considered par for the course nowadays or not but it might be something to ask about. He actually did expect me to have some degree of erectile dysfunction after surgery but assured me that there are enough therapeutic options available that I would be ok in the long run. And as it turns out, I beat even his expectations! So maybe I just got lucky, but I'm doing fine.

 

 

Another tidbit you might want to ask about with regards to surgical technique being you are T3b is whether or not the surgeon is able to check the margins of the tissue removed from you DURING THE PROCEDURE. If you've been reading through this forum you will see that when you get your post-op histology report, they check the tissue removed to see if there are any areas where the cancer spreads all the way to the edge. If so, this is considered a "positive margin" and means there is a high probability that some cancerous tissue was left behind. At some facilities (at least here in the US), if a lab exists onsite, the surgeon can freeze the tissue removed from you (while you are still on the operating table) and shave off some of the outer edges and have the lab take a quick look to see if the margins are clear or not. If not, the surgeon can then remove more tissue from you where the cancer went out to the edge giving better odds of getting it all out. In all the research I did online when I was trying to decide between surgery and radiation, I never read anything about this. But in my final appointment with him pre-surgery, my surgeon mentioned very nonchalantly that he does this at his hospital. This really boosted my confidence going in and it did in fact result in me walking away with clear margins. Again, I'm in the US, but having never heard of this before I asked the doctor if this was common practice or not and he seemed to indicate that in fact it is relatively common these days.

 

 

Finally, keep in mind, that no matter which route you go (radiation or surgery), there are likely going to be some side effects, some healing time and NEITHER can guarantee you won't have recurrence. There is no right or wrong answer, but if you are fit enough and willing to go through surgery, at least you will still have the radiation option in your back pocket as another weapon to fight the beast with, should it return.

 

 

Best of luck to you,

 

 

-Mike

User
Posted 17 Sep 2024 at 10:35

Hi Kimpy,

I was diagnosed as T3B N0 M0 with the notes saying "T3B (very early stage)". I was given the option of HT/RT or RALP. Both were suggested as the better route by different professionals! I went for HT/RT in the end after speaking to a surgeon who I felt had given my a more informed view, he said HT/RT was the best curative route for me, but he would do the surgery if I wanted, however it would not be nerve sparing and salvage radiotherapy/HT was very likely required. I made my choice based on why go through the surgery and all the side effects involved with that, then have to do the same with HT/RT as well.

I've been on HT for a two and a half months with radiotherapy to follow next month

 

All the best to you in which ever route you choose, its very difficult, you get good news stories from both routes, Mangia Miguels experience sounds brilliant!

 
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