Decision time! (Locally Advanced PCa)

User

Posted 16 Nov 2020 at 18:44

Hi folks

My first post, as I'm desperately feeling the need to share something about my current situation, having been recently diagnosed with locally advanced PCa on 3/11.

Like many here, I'm beginning to feel totally overwhelmed by the amount of information that I'm being asked to process at the moment, and not least the difficult (but hopefully, and eventually better informed) decision that I am being asked to make about which treatment option to pursue.

Notwithstanding all the obvious issues around Covid-19, I'm being offered either RARP or HT/IMRT through my local NHS in Cambridge..

I'll take the positives (at the moment) from recent CT and Bone Scans that have returned negative outcomes, with my presumed current staging now at T3aN0M0.

I've just reached 63, and am now ironically fitter and (until this point) likely healthier than at any time in the last 30 years or so - I've at least got lockdown(s) and remote working to thank for that! I probably wouldn't otherwise have raised the frequency and reduced urinary flow issues that I've been experiencing with my GP - I initially (and perhaps somewhat naively) related them to my dramatically increased exercise levels since March and my necessary increased uptake of fluids.

I'd be grateful for any support, and obvious insight, in helping me down whichever path I eventually choose, as once I've reached at least this point it will be a tremendous weight off my mind!

My stats as I understand them currently are:

PSA of 8.69 (15/9/20).

mpMRI (4/10) confirmed large M5 lesion (30x18mm) centred on left anterior gland. Prostate volume is 24cm3.

TRUS biopsy (21/10): Grade group 3, Gleason 4+3=7, and 3+4=7 Grade group 2, with core involvement in 10/13 cores (albeit 15 samples were actually taken?)

Have spoken already on phone with Urologist/Surgeon who has indicated that it should "theoretically" be possible to undertake nerve-sparing procedure, but also that he will undertake lymph node dissection (despite negative evidence) and that there is a 15% chance of adjuvant RT (and HT?) becoming necessary?

Another telephone appointment is scheduled with the Oncologist later this week (18/11).

ANY help is appreciated (already making my way through the information in the brilliant "Toolkit" highlighted elsewhere on this site).

Very best wishes to all

David

User

Posted 16 Nov 2020 at 19:50

One issue to consider with a T3 cancer is the quite high likelihood of microscopic traces of cancer having migrated outside the prostate resulting in the need for RT subsequent to a prostatectomy. In that circumstances, why be faced with two sets of side-effects (those of both surgery and RT) rather than just going for RT in the first place?

I had RT because of a PSA too high to be satisfactorily explained by the cancer actually visible in the biopsy and hence the strong likelihood of undetectable cancer in surrounding tissue. I have no regrets about doing so, two years on.

Best wishes,

Chris

Edited by member 16 Nov 2020 at 19:50 | Reason: Not specified

User

Posted 16 Nov 2020 at 20:15

Hi David, sorry you are here. I was also diagnosed T3 my gleeson was 4+5 and psa 25. So I am a bit worse off than you. I was not offered prostectomy. I had HT, High dose rate brachytherapy, and EBRT. The brachytherapy is a very good idea if you can get it.

As Chris says, even if you have RARP you will probably also need RT. I would say the side effects of RT are better than those of RARP.

Dave

User

Posted 16 Nov 2020 at 21:56

Hi David,

It's a tough decision. I usually favour surgery but from what I read when it isn't contained in the prostate then radiotherapy can be a better solution as it can better cover surrounding areas. It's not a small lesion so shrinking it with hormones sounds a good option.

Although I strongly favoured surgery it was in the back of my mind it would be good to get rid of the main lesion and if necessary have radiotherapy afterwards. Although as Dave suggests why do both if you could just do one. I've read others saying that. Not sure I'd agree. Once you have RT you don't have surgery.

The surgeon may try to save nerves but it's far from guaranteed. We're all different and for me nerve saving was a luxury if achieved.

Your psa isn't particularly high although it doesn't always reflect the situation.

I have read of people who had Radiotherapy and Brachytherapy. The profile below is one, Andy62:

https://community.prostatecanceruk.org/default.aspx?g=profile&u=37293

The thing I like about surgery is that if it's cut out there is often a good chance it's totally gone, it doesn't take long, and you have more definite measures of success earlier.

I think the stage, grade and size of your lesion pushes it towards strong intervention which may involve 2 treatments: RP+RT, Hormones+RT+Hormones (+Brachy?).

Not everywhere offers Brachytherapy. They didn't where I had treatment although it was 4 years ago.

I realise I haven't made a strong recommendation but I hope it's some help. All the best.

Regards
Peter

User

Posted 16 Nov 2020 at 22:03

Hi David,

Sorry that you find yourself here, but you will get a wealth of information and advice here. I’ve found the support of everyone here brilliant.

I was given HT and RT

My diagnosis in January 2013 was:

T3b NO MO Gleason 8 TRUS biopsy shows right lobe 2/3 cores involved Gleason 4+4=8 and left lobe 3/3 cores involved Gleason 4+4=8. Gleason score 8 both lobes, PSA 408

My bio is here:

https://community.prostatecanceruk.org/profile/16078-AWR1946

Best wishes, Arthur

User

Posted 16 Nov 2020 at 22:03

Hi David

Did your biopsy report mention any EPE (extra prostatic extension) or PNI (perineural invasion)?

My husband had surgery 16 weeks ago for a G8 T2b, they removed 15 lymph nodes (negative). However his post op histology upstaged him to a T3a with positive margins and EPE (not diagnosed on biopsy). He started adjuvant RT 2wks ago.

We wish you well.

User

Posted 17 Nov 2020 at 05:37

I was diagnosed three years ago with PCa, together with three friends of a similar age - I was 62. I was presumed to be G 4+3=7, T2aN0M0, which after surgery was upgraded to G4+3=7, T3aN1M0, lymph node involvement. I have been cancer-free for two and a half years so far, next PSA test next week🤞.

However, my three friends all had to have adjuvant HT and radiotherapy following surgery, and I might have to eventually as well, because of my lymph node involvement, so my completely unscientific survey of four shows a 75% chance of adjuvant treatments after surgery.

Your individual case will have been assessed by the Multi-disciplinary team, but do get individual second opinions from oncologists and surgeons if you want, before you decide which path to take.

I am sure your medics are looking at your case with what they call ‘curable intent’, i.e. curable, so best of luck.

Cheers John.

User

Posted 17 Nov 2020 at 11:17

My other half had no doubts he wanted surgery. There were several reasons....firstly he wanted the main bad guy out of his body asap. Secondly he was aware that after RT in the first instance, a lot of,surgeons won't go in and perform surgery afterwards. Some do, it has to be said but a lot won't because of the mush left by the RT. It's more complicated I believe. Thirdly he wanted to know exactly what was there ( via the post op path). This turned out important to him because the MRI said it had spread to the seminals which concerned him greatly. Post op it was found the seminals were clear which was relief all round.

Our surgeon was highly recommend by the team at the hospital and we looked him up on the BAUS website. The majority of his work is with T3 and he does high volume ops so we went in with confidence. So check out your surgeon if you want to go down this route.

The lesion was small, it had just 5% on one side and 1% on the other. The 1% was a grade 1 but the 5% turned out to be a grade 4 though so we couldn't mess about.

Continence wise, he is pretty much there after 5 months. Down to one pad which he only really really needs walking the dogs. It's odd, he can garden, cut down trees, chop up logs all leak free but get them dogs out.....

It's a very personal decision and every man walks his own path. This is just our path. He has no regrets so far on having surgery. Hope this helps.
LW

Notification

Join the online community now.