Active Surveillance or Surgery?

Thanks John. For the avoidance of doubt, what is your main argument for delaying Surgery for as long as possible? Is it the risk of a permanent impact to "lifestyle" caused by Surgery?

Thanks Nick, I appreciate your reply.

My post-operative comments are these:

First, I am cancer free (for now🤞), I have lost 2” from my penis which is great for urinating through, but little else, although I can enjoy a muted dry orgasm in its flaccid state. The surgery itself was virtually painless, as you can read in my profile, and I was completely continent a few weeks post-op.

I don’t know the pros and cons of early surgery compared to AS with your age group, but the above may be what you have to look to forward to if you go for the op.

I reiterate, if I were you, I would put off radical treatment as long as you are advised you can ‘safely’ do so, although no consultant can tell you what is ‘safe’.

Best of luck.

Cheers, John.

I’m pretty sure it’s not Disneyworld, Kissimmee, FLA!

Cheers, John.

Focal Laser Ablation.

Focal means the treatment is applied only to the diseased area (cancer plus safety margin), not the whole organ.

Laser Ablation is destruction of tissue by heating and vaporising it with a laser.

FLA needs to be guided to the right spot(s), which can be done with things like ultrasound, MRI, CT scan, etc. I'm not sure which are used for prostate treatment.

By the way, I think it's offered at Luton and Dunstable Hospital.

I'm in a somewhat similar position, so thought I'd share and ask for opinions. I posted before in the "Early Detection" sub-topic.

Background:

I have been under the watch of a urologist for about 5 years. My PSA has risen steadily (with very brief periods where it stabilized before going up again). Test over the five years (when PSA increased) were: biopsy#1, biopsy#2, MRI#1, biopsy#4, MRI#2, MRI#3, MRI#4. After another PSA increase, urologist suggested going back to biopsy (as MRI is good for detecting higher grade cancer, but may miss low grade). Fourth biopsy found Gleason 6 in five of seven samples, with another three samples missing due to small prostate. My PSA has steadily risen to a very high 24. I am 57 years old.

Urologist Advice and My Questions.

My regular urologist (very experienced) is on medical leave himself. So I had a younger urologist advising over the last period when Gleason 6 was detected. After biopsy with Gleason 6, I asked for Bone Scan and CT Scan (which turned out clear), and he agreed. He mentioned that Active Surveillance might be more difficult due to my small prostate, so continuing biopsy may be harder.

After the bone scan and CT scan came back negative, I was surprised to hear this urologist say that their protocol is to not treat Gleason 6 (as at prior meeting he was implying AS might be difficult). Also, while Gleason 6 is consider low risk, my extremely high (and constantly rising PSA) suggests it is not as low risk. Also since prostate is small, what else could produce high PSA?

My regular doctor (very experienced) is also leaning to treatment. If I was older, AS would make sense, but I'm expecting to have more than 30 more years. Have asked for a second opinion and referral to a top urologist.

I noticed if you look at more US based prostate cancer forums, most US based patients lean heavily in favour of active surveillance for Gleason 6 (with many saying Gleason 6 is not even cancer). But as others have said, it's very possible that there is an area with higher Gleason score that was not sampled, plus high PSA, plus 5 of 7 cores showed Gleason 6. I'm already leaning to going for treatment.

He, like you, has had regular tests and scans.

Carry on surveilling!

Cheers, John.

Again, my history very briefly. PSA has increased from 8.0 in 2014 to 24.2 in 2018. Had three biopsies and four MRIs during that period, and all negative (MRI found only PIRAD 2). Finally fourth biopsy found Gleason 6 in five of seven cores. Another five core didn't not get a sample due to small prostate. I asked for Bone Scan and CT scan after Gleason 6 found, and both come back pretty clean.

My regular Urologist is on medical leave, and the younger urologist covering for him had a couple of conflicting comments. In meeting after Gleason 6 found (and before Bone Scan, CT Scan), the said that AS may be difficult due to small prostate -- harder to do follow-up monitoring. In meeting after Bone Scan, he said their protocal is to not treat Gleason 6 --- i.e. must wait for higher grade to treat.

I wasn't entire satisfied with the answer and got a second opinion at the top cancer center in my country (and one of the top in the world) -- the Princess Margaret Center in Toronto. Was seen by the head of the department and a resident. Head doctor recommends treatment. Princess Margaret is one of the centers that developed the general protocol in Canada and the US that you monitoring Gleason 6, not treat it.

But there are too many things about my case that are strange.

- steadily increasing and high PSA

- my prostate is very small, so no reason for it to be producing high PSA.

- strange 3 prior biopsies and four prior MRIs found nothing, and now 5 of 7 cores have Gleason 6.

- I'm quite young at age 57.

They recommend treatment. I will be schedule for Robotic Surgery.

Hi KingKenny

Any chance of letting me know consultant and where you had the work done.

in a pretty similar situation to you chaps having has a TPM biopsy on the 5th Sept in London and results yesterday which showed around five 3+3=7 lesions in four regions on my prostate. PSA back on July 1st was 5.6. (I’m 52).

Urology Consultant very good and is meeting with his London MDT first week of October to review options for me. He is leaning towards AS but like many of you here I’m thinking get a robotic RP done sooner rather than later when good margins can be done. 

My consultant appears to have a good track record but need to check the stats out more as baus data is 16/17 only that I can see.

best regards

LynEyre, thank you so much for this as very informative.

Best Regards

TG

Thanks John That is much appreciated. 

Hi techguy

Don’t know if they like recommendations for surgeons/hospitals on the forum so if you private message me I’ll be happy to pass on info  

cheers. 

Although my Cave of Retzius and half of my nerves were spared, there is no sign of erectile function - despite chemical enhancement - but continence is fine. A bonus with the Prof’s procedure is the supra-pubic catheter, i.e. no annoying pipe rammed down your dick.

I did ask him during my post-operative consultation: “Do you do penis extensions?”, as an inevitable consequence of prostatectomy is what the medics call “changes to physical appearance”, i.e. a truncated penis.

Anyway, the most important consequence of my prostatectomy is that I no longer have cancer!

Cheers, John.

Dear all,

I thought I would post an update for the general audience that may perhaps be of most interest to Techguy.

I bit the bullet. Rightly or wrongly, the surgeon I was referred to, believed that the prostate would have to come out at some point, given the progression over the previous 12 months. The more I thought about it, the less I could see to be gained in delaying the inevitable - in fact - all I could see was an increasing risk profile.

I had surgery 2 weeks ago. I didn't want it, who does, but I committed. I was in for 2 nights and made to feel a wimp for that extra night. Ah well!!

I took pain killers for a week, more out of fear rather than actual pain. My Catheter was removed after 7 days - Hooray!! I'm not dry, but I'm pretty damn close - clinicians seem impressed. 

It's too early to even talk ED and in the meantime, I need to rest, exercise a little and build my energy levels up. 

The only slightly sour note I have is that post surgery, I pressed the surgeon on whether he had spared my nerves? The response I got was something like, there was incremental nerve sparing on both sides (which is too complex to quantify). With regards to future Erectile function, I guess I need to aim high, put the training in and hope for the best - but if anyone has experience or knowledge of incremental nerve sparing, please let me know.

As stated by someone previously, my head is in a better place than 8 weeks ago. I have no regrets so far and hopefully, this is the end of the PCa for me.

P.S. Very many thanks to all for your contributions.

Edited by member 25 Sep 2019 at 10:28  | Reason: Not specified

Hi Chalkmate

Thank you so much for the update.

I think I’m in pretty much the same tracks as you albeit much earlier on the timeline. Will wait two weeks for MDT London meeting but will engage with the Prof Whocannotbenamed and get a second option with a view to RP. Even though I have low grade adenocarcinoma of the prostate you just don’t know what else is there plus when the cells could decide to go on a road trip around Route TG.

I guess they did the retzius sparing approach with NeuroSafe?

Sounds like you are an excellent road to recovery. Hope the long term outcome reflects this.

Makes so much sense to get it out when localised. I’ve only been diagnosed a week now and spent a lot of time researching. Playing roulette with time doesn’t seem prudent that’s for sure.

Best regards

TG

Thanks John

Yes, been reading up on it and great approach to get near real-time visibility. 

Thanks for clarifying about locations where available. They came up the other night when I had a good chat with a local friend who used to work in urology before retirement. 

The surgical procedures are coming on in leaps and bounds so if I go down this route I hope for at least continence. Would be nice also not put the little chap into retirement but if it’s at the cost of being PCa free then it’s a price I’m willing to pay.

Thanks again 

TG

Speak for yourself, love. I asked Professor Whocannotbenamedhere if he did penis extensions, and he just laughed.

You might find me on a future episode of ‘Embarassing Bodies’, but I doubt they take on hopeless cases.

Am I bovvered? Nah...