Gleason 7 - Post RP - Psa rise soon! - Localised cancer - Prostate Cancer UK Online Community

User

Posted 25 Aug 2023 at 01:48

Writing regarding my dad. Worried and dont get any answers.

Dad 63 years old now, was diagnosed with prostate cancer october 2022.

2 small tumors 5x3 mm was shown on MR, no spread shown there. Biopsy showed gleason 3+4 ( 4 was 40%). Ralp surgery robotic was performed january 2023. Dad recovered well and first psa check 8 weeks later in march 2023 was untectable below 0,1. Our lab do not perform ultrasensitive psa tests :/

They confirmed that in his case its was very low % to get Biochemical recurrence ( did nomogram) but he should be checked every 3 month for 2 years. He was happy and so were we.

Pathalogy came back after operation, T2 - no positive surgin margins, no cancer cells in seminal vesicals. No extracapsular spread. The only thing they found ( that did not showed in biopsy was that on the other side of prostate was a lot of micro cancer cells 3+3. Pre PSA surgery was 7,6 and 9.1

We were able to leave this. Atleast what we thought. Fast forward 4 months after last PSA check. And 6 months from surgery. PSA was 0,25! And he got tested again week after, it decreased to 0,18. We met the doctor/ urologist 2 weeks later and PSA was now 0,19.

They did not want to rule it out as biochemical recurrence and said we should wait and monitore it. Dr was kind of suprised and said that a low / intermediate risk cancer with low PSA, stage T2 and no positive margins should not behave this way. He said one scenario can be mets somewhere ( and I kind of died there). Mentioned also the word micromets in lymf nodes. But also this could be benign tissue from the prostate and no need to worry.

The check up one month later PSA climbed to 0,23. I asked for PSMA Pet Scan and they said they will discuss on a medical conference and probably offer. The dr ( another one this time) said its probably local recurrence and we can have SRT in mind.

Anyone with similar experience? Just waiting and not knowing is so hard on us.

I am soo close my dad and just gave birth the same time that he had his surgery. We need him in our lives many many years head. 🙏

Having worst case scenario is not helpful, I guess. But just need to hear some advice. Did his slowly growing cancer ( what they said after the biopsi) become spread all of a sudden?!

Thanks for reading until here.

- Devasted Daddysgirl

Edited by member 27 Aug 2023 at 11:42 | Reason: removed white space

User

Posted 25 Aug 2023 at 08:39

Hi Daddysgirl. I'm sorry to hear about your dad but don't despair. A lot can be done to treat your dad whatever the reason for his rising PSA. It is very unusual for sudden increase in PSA given the results of his histology. A PSMA PET scan may reveal more about what's going on but the PSA is still relatively low and might not pick anything up. I had rising PSA after surgery and the PSMA scan didn't pick anything up. I had SRT to my prostate bed. That was 10 months ago and my PSA has so far remained undetectable. In your dad's case they may consider RT to the whole pelvis. It's not the news you were wanting to hear but your dad is still on a curative pathway.

User

Posted 26 Aug 2023 at 00:13

If it was my dad I would insist in a PSMA PET scan AND ask for a second opinion on the post OP pathology.

The PSMA PET will inform any salvage treatment and make sure you have the best chance at a lasting remission.

If the pathology was mis judged that too could impact the salvage treatment.

User

Posted 26 Aug 2023 at 01:18

Sorry to hear about your dads PSA rising.

My husbands started to rise in February this year after having RARP in Dec 2021. His was less than 0.025 then the first increase was 0.029. I made sure his blood was tested every 6 weeks from then and it continued to increase. He had a PSMA pet scan at 0.221 but that was clear. He’s decided to have the salvage RT to the whole prostate along with 2 years hormones. My husband Gleason was upgraded to 4+5 so didn’t want to take the chance of waiting. Although he had negative margins post op he did have cancer in one lymph node so it was highly likely he would get a recurrence.

There’s no reason why your dad won’t still be on a curative pathway, lots that can be done. I think the PSMA is worth a shot if you are offered it. For me although it didn’t show anything it did give some peace of mind that there was no cancer cells large enough to be picked up so we’re hoping this RT will kill off any micro mets 🤞🏼

I know it’s so difficult though and your mind goes into overdrive! Wishing all the very best to your dad.

Elaine

User

Posted 26 Aug 2023 at 08:58

DG 11, Unfortunately far too many of us were or are in the same situation. I had a poor histology, positive margins and extra prostatic extension yet my post op PSA was 0.03 and took three years to reach 0.23 and SRT. The route to take after recurrence is almost as mind boggling as choosing the initial treatment.

I was refused a PSMA scan and had salvage RT without HT,there was obviously something in the bed as the PSA went down but something was also outside the bed as the PSA continued to rise.

Last year and again this year I have had SABR treatment to two separate pelvic lymph nodes , the second node treatment 3 months ago also included bicalutamide for six months. My PSA has dropped from 6.2 before the last SABR treatment to 0.32 now.

I may have been better off having HT with the original salvage RT but it wasn't given because it was thought too toxic for a stricture I had formed.

Lots of options still available but knowing what is the right one is difficult. My onco said my SRT was given based on a " very educated guess and years of experience".

Thanks Chris

User

Posted 26 Aug 2023 at 13:54

I understand! Hope everything goes better from here for you. Guess they are no given solutions and treatments, feels sometimes like the dr just are guessing. And being here is harder then when we first found about the cancer diagnos. 😕

User

Posted 26 Aug 2023 at 16:26

Not likely to be in the bones at that level, much more likely a node or 2 or a local bit the surgeon missed.

PSMA PET is your best option to identify where it is now.

User

Posted 28 Aug 2023 at 20:27

Hi Daddy'sgirl.

I am not in the same position as your dad but have gone down the same route.

RARP June 2020. Gleeson 4+3 Positive margins and immediate PSA 0.2, 3 months after surgery. Raised to 0.5 after another 3 months.

Immediate plan for SRT and two years HT.

It's still early days but PSA <0.1 ever since secondary treatment.

My message is don't get downhearted at this stage. It seems your dad needs more treatment, so stay positive with the intent still to cure.

Best wishes to your dad, you, and your family.

Jim 👍

Edited by member 28 Aug 2023 at 20:29 | Reason: Typos

Show Most Thanked Posts

User

Posted 25 Aug 2023 at 08:39

User

Posted 25 Aug 2023 at 09:58

Thank you for taking your time and replying! I try not to loose faith. Our fear is not RT but to be not curable on meds only. Its hard to take in that this was low risk and curable to dr saying maybe mets spread. :(

User

Posted 26 Aug 2023 at 00:13

If it was my dad I would insist in a PSMA PET scan AND ask for a second opinion on the post OP pathology.

The PSMA PET will inform any salvage treatment and make sure you have the best chance at a lasting remission.

If the pathology was mis judged that too could impact the salvage treatment.

User

Posted 26 Aug 2023 at 00:34

Yes I have done that and we are waiting to see of they accept the PSMA Pet scan, but we know also with PSA 0,23- 0,25 its kind of still low and not sure it will show anything.

To get a second opinion on the last op pathalogy is hard, its one of the best dr that they say have gone throught it. However something in my gut say I am not sure its a negative margin as they say it is. It also says hard to determine if some areas are clear.

User

Posted 26 Aug 2023 at 01:18

Sorry to hear about your dads PSA rising.

I know it’s so difficult though and your mind goes into overdrive! Wishing all the very best to your dad.

Elaine

User

Posted 26 Aug 2023 at 08:58

I was refused a PSMA scan and had salvage RT without HT,there was obviously something in the bed as the PSA went down but something was also outside the bed as the PSA continued to rise.

I may have been better off having HT with the original salvage RT but it wasn't given because it was thought too toxic for a stricture I had formed.

Lots of options still available but knowing what is the right one is difficult. My onco said my SRT was given based on a " very educated guess and years of experience".

Thanks Chris

User

Posted 26 Aug 2023 at 13:51

Thank you so much for these kind words 🙏 Hope everything goes well with your husband.

I guess they can target the lymf nodes if its regional lymfnodes and not many of them with radiography. My concern is if nothing shows and he does pelvic radiation and hormone therapy but eventually psa keeps rising because they did not target right or if its in the bones!

I guess my mind keeps making this stories which is not helpful. Praying alot these days.

User

Posted 26 Aug 2023 at 13:54

User

Posted 26 Aug 2023 at 16:26

Not likely to be in the bones at that level, much more likely a node or 2 or a local bit the surgeon missed.

PSMA PET is your best option to identify where it is now.

User

Posted 26 Aug 2023 at 17:30

Thank you! Fingers crossed that its just a local bit and that SRT will help.

🙏

User

Posted 27 Aug 2023 at 12:11

Originally Posted by: Online Community Member

Thank you so much for these kind words 🙏 Hope everything goes well with your husband.

I guess my mind keeps making this stories which is not helpful. Praying alot these days.

I completely understand what you’re feeling here and have to say I’m exactly the same.

My husband was originally diagnosed with bone metastasis but a second opinion disagreed….he’s had 2 PSMA pet scans (nearly 2 years apart) which both showed nothing in the bone, but it often goes through my mind the original diagnosis could have been right and the radiation is targeting the wrong place 🤦🏻‍♀️

We talk about it often and realise that we can only do and make decisions on what we think is best for us at that time. If we do that we can’t have any regrets and will know that we tried everything.

I guess see what comes up on a scan for now and take it from there, but try not to over think and worry too much x (easier said than done I know!)

User

Posted 27 Aug 2023 at 19:11

Gosh I totaly feel you!

Trying here and wish so much that this whole thing goes away ☹️

But having hard time accepting that we are here after surgery. And afraid if there will not be radiation only meds.Thank you for your encouraging words. And best wishes to you and your husband.

Edited by member 27 Aug 2023 at 19:11 | Reason: Not specified

User

Posted 28 Aug 2023 at 20:27

Hi Daddy'sgirl.

I am not in the same position as your dad but have gone down the same route.

RARP June 2020. Gleeson 4+3 Positive margins and immediate PSA 0.2, 3 months after surgery. Raised to 0.5 after another 3 months.

Immediate plan for SRT and two years HT.

It's still early days but PSA <0.1 ever since secondary treatment.

My message is don't get downhearted at this stage. It seems your dad needs more treatment, so stay positive with the intent still to cure.

Best wishes to your dad, you, and your family.

Jim 👍

Edited by member 28 Aug 2023 at 20:29 | Reason: Typos

User

Posted 28 Aug 2023 at 20:46

Thank you 🥹 I really hope this will be our case aswell. But they claim negative margin here - but I hope SRT will make the PSA low. We are now waiting for PSMA pet can, praying not any spread. 🙏

Wishing you the best and that PSA will continue being undectable from now on.

Edited by member 28 Aug 2023 at 20:46 | Reason: Not specified

Notification

Gleason 7 - Post RP - Psa rise soon!

Join the online community now.