Recurrence 6 years after Robotic Surgery

User

Posted 29 Jul 2022 at 12:15

Fully aware of that Lynn if I had consistent advice from Oncologists I wouldn't get so stressed about it all.

My local Onco says I have a recurrence and must get it zapped Inc lymph nodes asap.

The RM Onco says wait.

I am taking the RMs advice, hopefully I won't regret it!

User

Posted 29 Jul 2022 at 14:34

I share your frustration x

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

User

Posted 09 Aug 2022 at 12:16

So my Onco that wants to treat me at 0.1 (confirmed latest result is 0.100) is pushing me to attend a face to face consultation next week to talk about treatment plan.

I was happy with my second opinion from the RM saying OK to wait another 3 months.

Lots of other threads on here seem to align with RM position (ok to wait, some threads now even say wait until 0.4??).

I think I will attend and tell him about the second opinion and see what his reaction is? What does this forum think? BTW this is all private treatment and I must admit I am concerned about financial incentives to treat that may not be in my benefit.

User

Posted 09 Aug 2022 at 12:57

My friend Raiden who used to post on here ( great mates now ) had 4 consecutive rises from 0.05 and eventually hit 0.14. His Onco wanted to act on this , but Raiden like me was huge on QOL. His psa has stalled at this level for around 1 1/2 yrs now. I know you know that I’d wait …… in fact I’ve never even had a psa as low as mine is now at 0.77.

Best wishes brother

User

Posted 09 Aug 2022 at 16:38

Francij, I was surprised when my oncologist said a couple of weeks ago the salvage RT was still given as an educated guess. About 6 weeks ago the consultant radiologist said they had lowered the criteria for PSA prior to PSMA scans from 0.5 to 0.3 at our hospital.

Prior to my SRT at 0.2 I asked if the SRT could be delayed to sort stricture out, my urologist said he would be criticised for delaying salvage RT beyond a PSA of 0.4, I started at 0.27.

I don't know how long it takes a lymph node tumor to grow but mine is about 8mm, if that is the only source of the my 1.6 PSA could it have possibly been pick up before SRT five years ago. Presumably something was in the bed because my PSA did drop after SRT.

Thanks Chris

User

Posted 09 Aug 2022 at 19:49

Hi Francij1, your PSA seems to be rising very slowly. I think if or when it rises to 0.2 I would be looking to treat it with SRT. The evidence around SRT seems to show that outcomes are better and more sustained with early intervention at or before a PSA of 0.2. BCR after prostatectomy is very difficult for medics to deal with definitively. These articles summarise a couple of studies into BCR.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8833698/

https://www.karger.com/Article/Fulltext/481438

Ido4

User

Posted 17 Aug 2022 at 23:52

So I had my Onco consultation yesterday that he had insisted on to talk about planning for RT and great news (I think!) He has changed his mind and the consultation was almost word for word what the 2nd opinion said ie no benefit going before 0.2. So next PSA 3 months.

He went through why he would treat my pelvic lymph nodes and why this wouldn't be a problem (no lymph nodes removed at surgery). He also said surgical lymp node removal would have meant prostate bed only RT because of the danger of lymphoedema.

I also asked him what benefit private RT offered over the NHS and he said no "technical benefit" IE it's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?

User

Posted 18 Aug 2022 at 00:41

Originally Posted by: Online Community Member

It's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?

I had 15 doses of RT on NHS. For the first week they checked every day. In the second and third week they only checked one or twice. I asked why and they said, it didn't move in the first week so we don't need to check it as often.

I really doubt they would have done it differently if private. Might have got tea and biscuits though.

Dave

User

Posted 18 Aug 2022 at 13:00

I had a scan before all 20 treatments to make sure they had me n the right position.

I was treated on the NHS.

Ido4

User

Posted 18 Aug 2022 at 13:47

Varies between hospitals and treatment versions. If you have the gold seeds, you are in effect scanned every day. If you just have the tattoos, you may be scanned daily or weekly, or daily at the start of the treatment and less frequently once the RT staff are confident about your ability to keep bowel and bladder empty / full. Someone with a lot of gas problems may end up being scanned every day.

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

User

Posted 18 Aug 2022 at 13:50

"I also asked him what benefit private RT offered over the NHS and he said no "technical benefit" IE it's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?"

Presumably this is true at the hospital your onco works at.

John had his RT done privately but the private health care provider is a company within the NHS hospital and wholly owned by the Trust. All profits are ploughed back into their NHS oncology service and research team which appealed to my social conscience! The only difference it made was that John saw the onco every week for a catch up.

Edited by member 18 Aug 2022 at 13:55 | Reason: Not specified

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

User

Posted 18 Aug 2022 at 16:42

I had my 20 SRT fractions on the NHS. I was scanned every day after being lined up with my tattoos.

Regards,

Kev.

User

Posted 28 Nov 2022 at 23:52

Latest PSA = 0.096 so dropped 0.004 in 4 months. I'll take that. Next test in 4 months... Interestingly it didn't go up this time last year and seems to go up in spring and summer only? Anyway gets me another 4 months reprieve from RT so a great early Xmas present.

User

Posted 29 Nov 2022 at 00:18

Excellent.

John's highest reading is usually August / Sept each year, just after we get back from France .... it's either all the cycling or the red wine & cheese :-/

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

User

Posted 29 Nov 2022 at 05:30

Nice one bud !! That numbers so small I’ve forgotten how to say it 😀

User

Posted 29 Nov 2022 at 06:05

Great result Francij keep dodging the RT.

Cheers

Bill

User

Posted 29 Nov 2022 at 07:36

Franci ,great news.

Thanks Chris

User

Posted 29 Nov 2022 at 07:44

Nice one long may it continue 👍 gaz

User

Posted 29 Nov 2022 at 23:56

Great news, long may this continue for you x

User

Posted 30 Nov 2022 at 03:20

Somehow treatment often seems to correspond with Christmas, which takes the edge off it a bit. Good work on avoiding that one and the 4 month reprieve.

Jules

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