Help With Decision

Help With Decision

User

Posted 20 Feb 2020 at 13:34

Thanks John. Scary stats on your mates re-occurance. Makes me wonder if heading straight to RT/HT might be least worse option.

Hopefully a long time to live whatever route is chosen.

User

Posted 20 Feb 2020 at 14:50

My two friends had the RT & HT (one is ongoing with HT, I believe) but they both now have undetectable PSA the same as me, and are doing fine. Our surgeries were all around eighteen months ago.

Two out of three is not ‘stats’, just my immediate my contacts.

You are entitled to second opinions from a surgeon, and from an oncologist, so go for that, and weigh up what they all say before you decide what to do.

Cheers, John.

User

Posted 20 Feb 2020 at 14:56

Thanks. Surgery not discounted yet. Will see surgeon next Thurs. Didn't mean to confuse. Will make a decision after meeting with Surgeon.

User

Posted 20 Feb 2020 at 16:40

Ah, I misunderstood your post - I read it that they had ruled out surgery and were recommending RT / HT.

If you are yet to see the surgeon, it will be important to clarify whether the op would be nerve sparing or non nerve sparing.

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

User

Posted 20 Feb 2020 at 16:51

Two very similar diagnosis, mine and a friends both with TA3. He had open surgery, needed blood transfusion and had some other probs. Because of rising PSA subsequently had HT/RT and 12+years on has non detectable PSA. He regrets having had surgery on assumption that the RT would have done the job.

My situation: Told by same surgeon who removed my friend's prostate that he doubted being able to remove all my cancer by surgery and recommended RT instead. At 2 years and minimal side effects seemed RT was a good decision but PSA started to rise persistently and with tumour subsequently found within prostate had HIFU and may have to have repeat HIFU or something else. I was told a Prostatectomy now would almost certainly lead to permanent incontinence.

Of course there is not assurance that had I gone the same route as my friend I would have had the same result but with the benefit of hindsight I would rather gone his route, at least I would not be facing further treatment to my Prostate now, and with likely more side effects.

Edited by member 20 Feb 2020 at 16:53 | Reason: Not specified

Barry

User

Posted 20 Feb 2020 at 21:54

Hi BB

sorry only just seen your question.

Mainly age and the impact of any RT at my age of 52. Plus potential negatives on bowel and bladder. My view while thought early stage(ish) and localised to look at surgical options. When I found out about the Prof and Retzius Sparing approach RP and neurosafe and the stats is made me more confident total removal was the best option for me. I figured I would probably lose my mojo and have a very good chance of regaining continence. As it happens I’m lucky as got both back same as pre-op (albeit dry climax). I’m now just over week 12 post op and starting back down the gym and getting back to relative normality in terms of jobs/tasks etc

btw you can see anyone you choose via NHS Choices.

Best of luck with your journey and it’s not an easy one and blew my mind quite a few times. Research and talking to folks that had been through various procedures was immensely useful in helping define which direction I’d take.

User

Posted 01 Apr 2020 at 21:58

Hi all. Thought it was time to update.

Saw the Onco on Feb 19th. All was going well until I was told 3 years HT. That was a shock. I was told all T3 treated that way. I thought I was T2a until then!

Met with surgeon Feb 27th. He was very confident of a good result. Also offered entry to NEUROSAFE trial. So I was all in. Being considered high priority and hopefully surgery in April.

Fast forward 3 weeks and Corona-virus rearing it's ugly head. No new entrants being taken on NEUROSAFE trial. More recently amount of surgeries being reduced. Now none being done!

I have been trying to discuss with anyone that will listen about the possibility of going on HT in the meantime. Got some positive feedback today that this could happen soon.

I'll get back to pulling my hair out!

Cheers,

Burghboy

User

Posted 02 Apr 2020 at 17:19

This is where we are now Burghboy...my husband has had no meetings since diagnosis and no contact from anyone at all. He wants to start HT to halt the progress but we can't get through to anyone and we feel stranded.

We are also pulling our hair out :(

User

Posted 02 Apr 2020 at 20:00

Hi Littlewren.

For what it's worth. I have tried to engage specialist nurse, surgeons secretary, and nurse that gave surgery school.

It might also be helpful if you provide more detail on your OH, in terms of PSA, Gleeson, staging. So much experience on this community to advise if you provide details.

User

Posted 02 Apr 2020 at 20:51

Yes, we've tried secretary and also specialist nurse. Left messages but no one ever gets back to us.

I think our next step us to ring the GP and see if she can stir them up.

I will up date in the profile.

User

Posted 29 Apr 2020 at 12:51

An update.

Spoke with surgeon 3 weeks ago and he formally offered the option of taking HT for time before surgery starts up again.

Also gave me the option to go back to Oncology to see if I could get RT going quicker. Spoke to them but was going to be two weeks before I could chat with consultant, so declined.

So I have opted to stay with the surgery team. Had my 14th bicalutamide (150 mg) today. So far, so good. No obvious side affects apart from maybe the odd tiredness. Will update on how things progress.

User

Posted 06 May 2020 at 17:35

I was diagnosed the first day of the lockdown

I thought surgery was the best option but with the lockdown the op was cancelled.

Now on 150mg hormone therapy and wondering whether to stick with surgery or go for radiotherapy when things restart.

I’d loose one nerve bundle with surgery but could save the other. No waterworks problems that I’d need surgery to solve.

nearly 58 so wondering if RP would lead to problems later in life and wondering why some people recommend surgery if you’re ‘fit and young’

PWf

Edited by member 06 May 2020 at 17:39 | Reason: Not specified

User

Posted 06 May 2020 at 18:23

Thanks PWf. Honestly I could have written your post.

This far in and I am still not sure. I have heard on this site of at least one person that had PCa come back in their prostate after RT. Don't know how unusual this is. Anyway, surgery takes away this possibility and that is where I am at. For good or bad!

Take care,

User

Posted 06 May 2020 at 19:12

I thought that when I saw your post. My dad had prostate cancer around 2002. He had an op to remove the cancer but not sure if it was radical. He was born in 1933 and both he and my mom are not in the best of health so my brother and me have decided it’s best not to stress them out by letting them know.

His cancer came back last year and I spent a few days taking him in to the hospital. It’s in his bones now but to be honest with the PC medication he’s getting it won’t be the PC that gets him.

Having RT does seem to make surgery afterwards more difficult but RT does seem to have less side effects. (Tried the predict prostate tool and that seems to say RT might be best.)

plus my sister in laws brother was diagnosed at our age. He went for surgery and2 years later he’s cancer free although it took several months to get over the after effects of the op

Edited by member 06 May 2020 at 19:16 | Reason: Not specified

User

Posted 06 May 2020 at 19:30

Hi PWf. Can I ask your information in terms of Gleeson and staging. Helps give perspective.

Also about the Predict app. I have not worked out how to differentiate between RP and RT. Is this obvious to you? For me it just looks like giving info between radical something and nothing.

Thanks,

User

Posted 06 May 2020 at 19:51

my Psa was10.4

Gleason 3+4

and staging was said to be early T3a? I.e not sure from the MRI if it’s a bulge and T2 or T3a

the predict app gives the same survival for either radical procedure so doesn’t distinguish between surgery or radiotherapy

scrolling down the predict page shows erectile dysfunction, incontinence and bowel issues.

however I don’t know if these reflect RARP as the data is from a while ago and not sure if RARP was in use. Haven’t read enough yet.

have you checked your surgeon on https://www.nhs.uk/service-search/other-services/Hospital/LocationSearch/8/Consultants.

User

Posted 07 May 2020 at 19:32

Thanks PWf. I am much the same. PSA 8.2. Gleeson 7 (4+3).

Staging not clear but given the same as you. i.e. maybe T3a.

Good luck with your decision.

User

Posted 07 May 2020 at 20:10

I had PSA of 9.5 and Gleason 3+4. Didn't get a staging, but it didn't matter as RARP was my only option - everyone agreed that RT with my Ulcerative Colitis (even though it's mild) would ruin my quality of life. At 68 I'm probably older than normal for RARP, but I don't have any other health issues, so the consultant wasn't worried. TBH given the option I would still have plumped for RARP, because my wife has had RT and had several side effects and I also prefer to know quickly if the procedure was a success.

Luckily got mine done just ahead of covid and have been told that PSA is undetectable and I had negative margins. However there was no nerve sparing on the left hand side. Continence-wise I've been dry all night from the beginning, and the consultant says I have good pelvic floor (not the slightest bit of stress incontinence), but I can have "urge" incontinence. Physio says that because my prostate was so big, I now need to re-train my bladder. I'm told it will probably take some months to sort out ED; we'll have to see.

In your position, providing that you are reasonably fit and healthy otherwise, I would have thought that the only real issue with RARP would be whether they can spare the nerves both sides. If so and at 57 you should have good outcomes, but of course nothing is guaranteed. You wouldn't normally expect bowel problems with RARP (unlike RT) unless you were very unlucky (i.e. your prostate was squashed up against your intestine, if I recall my chat accurately).

User

Posted 08 May 2020 at 10:28

Thanks Peter and J

I’m also aiming to spare a nerve bundle if I go for RARP . The other is to close to the bulge but hopeful for one to be saved. It would be a da Vinci machine at the lister. Slightly concerned that a couple of months HT courtesy of Covid delays will affect the success of the RARP but told it shouldn’t .

The early T3a with a question mark also makes me wonder if I’ll need RT anyway afterwards so looking into RT at mount vernon.

Lots to read on a bank holiday weekend!

so difficult to choose

Edited by member 10 May 2020 at 10:59 | Reason: Not specified

User

Posted 11 May 2020 at 12:30

Originally Posted by: Online Community Member

I watched Professor Whocannotbenamedhere’s pre-op video in full, despite having been there, done that.

Very informative, and I would recommend it to anyone considering surgery.

I note the Prof. is off to an international symposium shortly, with the other two world-renowned Retzius-sparing surgeons, the Italian Whocannotbenamedhere and the Korean Whocannotbenamedhere.

If you, like me, are interested in the gory details of the surgery, the Prof. has provided a video of what Da Vinci gets up to during his assault on your sexual organs:

https://youtu.be/kX777A8El18

I watched all the way through, but sadly there was no “money shot” at the end, which of course will be the case for the rest of that patient’s life.

Enjoy!

Cheers, John.

Glad I had finished my lunch before watching this!! Glad the Prof did mine though :-)

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.