Active Surveillance or Surgery?

User

Posted 14 Jul 2019 at 17:55

Hi, Dog,

We ‘on here’ are not experts, and have never purported to be, but some have undergone treatment and survived, and are happy to share our experiences and collective wisdom with others who have not.

We also know the difference between prostate, a male gland of regeneration, and prostrate, a body lying face downwards and incoherent, much like your last post.

Cheers, John.

User

Posted 14 Jul 2019 at 18:12

Harsh John??? We are not the spelling police after all. Many people don’t know their there’s from theirs yeh. Just saying. : —))

User

Posted 14 Jul 2019 at 18:14

Love it when i touch nerves!!

User

Posted 15 Jul 2019 at 07:18

"Right, stop that. It's silly."

Thank you for your posts and sharing your respective wisdom, I appreciate it. I need to hear what the Surgeon up at Kings has to offer and at some point, hopefully someone might refer to my MRi scan!!.

For now, thank you.

..Twist.

User

Posted 23 Jul 2019 at 21:12

Hi Everyone.

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.

User

Posted 23 Jul 2019 at 23:23

Your PSA isn't that high, so whether or not AS is suitable rather depends on where the 5 positive cores were taken from, and what % of each core was affected?

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

User

Posted 24 Jul 2019 at 07:52

My friend, in his seventies, is looking forward to his sixth year of active surveillance and he is Gleason 3+4=7.

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

Carry on surveilling!

Cheers, John.

User

Posted 26 Jul 2019 at 13:11

Janus is only 56 though......

Whole different ballgame in my view...... I’d want it gone, and that’s what I did. No regrets.

Nick

User

Posted 29 Aug 2019 at 19:02

Hi Everyone, I thought I'd provide another update.

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.

User

Posted 06 Sep 2019 at 17:58

Dear Chalkmate

I am 52 and had 3+3 in biopsy and PSA 10.

I chose surgery and the cancer was upgraded to 3+4

The point I am making is the degree of cancer I am told gets generally upgraded following surgical histopathology as was in my case.

3+4 becomes intermediate risk and more risk of needing Radiotherapy etc.

There is also the fact that the surgeon can strive to preserve your nerves needing for erection if surgery at an early. Delay in surgery can also lead to something called positive surgical margin. (which has happened in my case and awaiting the first PSA test anxiously).

Becoming infertile and losing erection function (in early cancer if nerve sparing may not be a long term problem) are small prices to pay to have your cancer treated without radiotherapy and harmone treatment etc, in my view and hence I agreed for surgery.

Hope this helps you in making your choice.

Thala

User

Posted 07 Sep 2019 at 21:01

Hi Chalkmate

I am much older than you 72 now, but I opted for RP earlier this year to get rid of the cancer that was contained in the prostate. So glad that I did as I am now 14 weeks post op and dry, sexually getting better. My decision was made with my wife and made quickly, surgeon to op in a week. I do understand that we are all different and we react differently to the same situation. I feel so much better that I made a quick and for me the correct decision. Hopefully this may help you.

Regards

Peter

User

Posted 19 Sep 2019 at 14:25

Hi Chalkmate,

Don't know if you've chosen a path yet, and everyone's is different, but just thought I'd share my experience. I'm 58 and was diagnosed (via MRI-guided perineal biopsy) with Gleason 3+3 just over a year ago. It was localised in one area with no breakout, so I was low risk and had all options open. Chose AS, but after six months decided I wanted to take control rather than having the decision taken for me, or having my options limited down the line.

Started to investigate all possibilities and RP was the obvious choice for me as it seemed that it was the route that would give me the best chance of getting rid of the PCa for good. I didn't want another 15 years of PSA tests and biopsies, or to be a cancer patient at all. So, after finding a surgeon I felt happy with (you can check out their records on baus.org) I went for it and the prostate (and cancer!) went on July 2.

Ten weeks post-op I have no regrets. My head is in a much better place and I'm able to plan my future without worrying about PSA levels and what's happening down there.

After effects: The one we dread - ED - which I hope will improve given that RP on early-stage localised PCa gives you a much better chance of nerve sparing. Err, that's it: I suffered no incontinence, was pain free within 2 weeks, back at work in 4 and am back running with no issues.

I wouldn't presume to give you advice but the things that helped me most once I'd decided on RP were: finding a surgeon I was totally confident in, speaking to other guys who'd had the op (including via PCUK's One to One service) - and just knowing I was in control of this thing rather than the other way around.

Appreciate I'm lucky, with minimal side effects, but hope a positive report post-RP will help you with your next move, whatever it might be.

Best Regards

User

Posted 19 Sep 2019 at 23:52

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

User

Posted 20 Sep 2019 at 00:17

Techguy, just ask him for his more recent stats. The most useful are:

% positive margins

% needing adjuvant treatment

% biochemical recurrence within 5 years

% able to get an erection sufficient for penetration without chemical or mechanical assistance at 12 months post-op

% using no continence pads at 12 months post-op

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

User

Posted 20 Sep 2019 at 12:45

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

Best Regards

User

Posted 20 Sep 2019 at 15:15

3+3=7? Is that from the Diane Abbot school of mathematics?😉

If you are 3+3=6, definitely go for AS, and a friend in his seventies, 3+4=7 has been on AS for five years and is doing fine. He has however, seen consultants all over the world, and is following an ‘anti-cancer’ diet cooked up for him by the Mayo Clinic in America.

I was very happy with my surgeon, Professor Whocannotbenamedhere, who came highly recommended to me and is a veteran of more than 3000 prostatectomies world-wide, with an average of 300-400 a year.

You can locate him if you look up ‘Santis Prostate’ - that website also gives lots of other information about the disease as well.

Best of luck.

Cheers, John.

Edited by member 20 Sep 2019 at 15:28 | Reason: Not specified

User

Posted 20 Sep 2019 at 15:27

Thanks John That is much appreciated.

User

Posted 20 Sep 2019 at 15:33

Cheers John 🤪

OMG slipped up there as I was on Sauvignon Blanc therapy after the news... Definitely Gleason 6 :-) Just had the formal GP letter through and full diagnosis is: Gleason 3+3=6 adenocarcinoma in all 4 quadrants or prostate (5/20 cores) Maximum core length is 5mm. so low grade Stage 1

best regards

User

Posted 23 Sep 2019 at 09:30

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.

User

Posted 23 Sep 2019 at 09:46

Thanks KK

I tried DM but think I am too new as block mechanism in place.

On the plus side I think I have worked out the prof’s details so will be engaging shortly for a second opinion. Looks like he does some of the highest volumes around plus stats are very positive.

Best Regards

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