Raised PSA after Radical Nerve Sparing Prostatectomy’s

   Hi RP6,                                                  

Your pathology from surgery was pT3b which your surgeon characterized as completely excised and a complete success. pT3b is stage 3 involving the seminal vesicles.

It is very disturbing to me that he said nothing to prepare you for the likelihood of further treatment. That was very unfair to you. Patients with pT3b have a high risk of recurrence. 

Your surgeon's work is done. Going forward your Oncologist should have the knowledge and the tools to get you through this. With the latest advances you may still be on a curative pathway.

Hopefully your scans will give definitive information on where to proceed from here. You are likely to have radiation and a period of hormone therapy in your near future. 

Pelvic radiation can affect continence after a prostatectomy.  If you are not fully continent, radiation often makes it worse. If you are fully continent, most men stay that way after radiation.

If it is determined that you need radiation, hormone theropy can be started so you can have a few more months to become fully continent before starting radiation. 

It is often stated here that this decision phase is the hardest, most stressful part of our journeys. This will get better for you.

I wish you good luck.

Hi Stampede,

Many thanks for that, my Oncologist did talk about HT and poss RT at my first meeting he seemed to think it would not be in the prostate bed as it was a negative excision but didn’t rule anything out, I’m completely dry at night and only leak about 4 mil a day at the moment so I’m hoping I’ll be completely dry in a month or two fingers crossed.

D-Day on the 31st when he should have all the test results/scans etc and I know what I’m doing.

Many thanks once again Stampede.

RP6

Hi there,

I hope everything goes well for you Cip8910.

very best wishes

RP6

Thank you,

When I was first diagnosed it did put the fear of God into me but because it was the lowest possible grade I soon accepted it and got on with my life, I was 60, fit and very active, 2021 when my wife was diagnosed and we fought the thing I started to become more conscious of my own condition and it really hit me when I was told I needed a procedure that’s when my mind started to go, anyway we fought the monster once as a team and got a result so we go again as a team.

All the very best & thanks once again.

RP6

A lovely person on here pointed me in your direction. I am following your story with baited breath and wish you well. Your ‘journey’ closely matches ours and we’re only days behind you. 

My husband (52) and I (48) were diagnosed with cancer a week apart last April, breast cancer for me (treatment finished in current remission) and prostate for him. He had radical prostatectomy non nerve sparing surgery via davincii on 19th December and first PSA 4 days ago was 2.8 so heading for pet scan (5 week wait here) to see what’s going on. Going out of our minds initially but more positive after reading others experiences on here. He had lymph dissection at the time and 2 of 16 were positive. Margins weren’t fully clear on one side of removed prostate where it meets bladder. They’re talking about HT and salvage RT so I’m wishing you the very best and hope you don’t mind me jumping on in here so we’re armed with as many possibilities and information that we can find. 

Our stories are not a complete match but very close. I’m hoping you and your wife are doing well and staying positive and keeping on the curative path. 

Hi MaryDoll,

No problem at all in joining in and I’m sorry to hear that you you and your husband have joined the club no one wants to be in but great news that you like my wife are in remission from the beast, long may that continue.

I had my Oncologist meeting on Friday and have been told the following.

PSA Level is stable at 7.4 ( After 4 more tests with GP and Hospital & a Superdrug test at £75 which was spot on)

The results of my PSMA-PET Scan were……(Oncologist words) spot on my bottom left rib…..1 spot on the back of my left hip bone and 2/3 spots in some lymph nodes at the back of my abdomen…..interestingly the MRI Scan did not show the one on my hip bone…go figure?

I was shown all the images and he told me there was non anywhere else or in any major organs, so that was good news…I hope!

The Plan:

I was told that in these circumstances that HT was the starting point for me and I was given all the different HT options available to me, after talking it over I have decided to go onto Relugolix, ( didn’t fancy injections) it’s a 1 a day tablet taken at home after the first day when you take 3 of them, I as told I would be on them for approx 6 months ( If I can handle them) then reviewed with the objective being that once the little swines are shrunk and put to sleep we nail them with targeted RT to kill them…..Fingers crossed.

My Oncologist told me that we are on “ A curative pathway” I hope he is right.

I hope that your husband has a positive outcome to his scans and I wish you all the very best on your journey…and please let me know how things progress…as you say it is a battle and the mental side of things never go away.

I am glad you have a plan, and more importantly that your treatment is going to be with curative intent. Please keep us updated on how you get on with the Relugolix as it is a newly approved hormone therapy in the UK. 

RoutePack6 said:

My Oncologist told me that we are on “ A curative pathway”

Now that is the best news you can get on this journey. Please do keep us updated and I wish you well with your treatment plan.

Best wishes - Brian.

Hi there,

I hope you are both keeping well and I will definitely keep you all updated with the Relugolix progress.

Very Best

RP6

Thank you Brian,

I will keep posting as to progress and thank you…… I would be interested if anyone has already experienced Relugolix treatment.

Very Best

RP6