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Post RP and Adjuvant RT recurrence

User
Posted 17 Jul 2024 at 21:00
Tarkadahl you still have options for targeting lymph nodes in your pelvis as you only had prostate bed RT previously (not sure why they took that route,??)

If you get to the HT stage I would also consider doubling down and asking for chemo too, lots of good evidence it's worthwhile to hit it as early as possible (checkout Dr Kwon on you tube).

Re diet I am a big fan of keto and intermittent fasting, if nothing else you will lose weight and as my urologist once told me the best way to lower risk in PC is don't carry ANY fat. Apparently it gives off hormones that just make everything worse.

User
Posted 17 Jul 2024 at 21:29

When I had my salvage radiotherapy they targeted the prostate bed plus the surgical area where 34 pelvic lymph nodes had been removed (this was all educated guess work as nothing showed up on the PSMA PET scan). The additional assault on the lymph nodes did cause some Lymphoedema in my right leg but I have no regrets. It seems to have done the trick. I've now been undetectable for nearly two years 🤞. It's a difficult decision on how radical you go and your QoL. If it was me I would be prepared to throw the kitchen sink at it if it avoided a lifetime of HT.

User
Posted 18 Jul 2024 at 09:19

They took very many lymph nodes out during surgery and there was no sign of cancer, so given the positive margin they decided to go big on the prostate bed is the best explanation I received, though it was probably like Colwick Chris an educated but ultimately wrong decision.

Diet is interesting if only to give me a sense of control over the uncontrollable I guess, which may be mentally beneficial.

User
Posted 24 Oct 2024 at 12:23

Hi Tarkadahl, 

Sorry to hear about your dx and the anguish you are going through. I am wife to a husband who's going through a similar PCa journey. He was 46 at initial diagnosis in 2016. Your conversation here popped up as I was searching for "Thyroid". He has been called in for an ultrasound scan to the thyroid on following a PSMA PET. He had SABR once already and his PSA has increased again since then. Did you have the thyroid glow investigated at all - or was it incidental? Sorry to be nosey, but I am looking for something positive at the moment. Best wishes. Rach.

User
Posted 24 Oct 2024 at 21:36

Hi Tarkadahl, on my multiple trawl of the site again today I just discovered your thread.

Very similar picture to my husband - RALP July 2020 then adjuvant RT commenced October 2020. Like yourself he had an extended pelvic lymph node dissection too (all negative). His RT was to prostate bed only too.

Now has a PSA of 0.2 after being <0.1 for almost 4yrs. His oncologist requested a PSMA scan but the radiology department have rejected this on the basis that he’s had both surgery and RT. He awaits an MRI of pelvis.

 I am taken aback that they’ve refused to perform the PSMA scan given lymph nodes weren’t irradiated and we want to discuss the option of SABR. We don’t see Oncologist until December. 

Good luck, I will be keep my eye open for your updates.

User
Posted 16 Jan 2025 at 18:34

Back in for update on my journey.

Despite glow from the PSMA and a rather painful biopsy. Nothing obvious in my thyroid.

PSA continues to rise 0.40 in October 24 and 0.45 in Jan 25.

So next PSMA likely to be in next 3/4 months.  Hopefully something will turn up somewhere they can zap.

Just over 6 years since diagnosis. Best wishes to you all.

User
Posted 16 Jan 2025 at 19:27

Hi, 

It's doubled in a year. That's not a very high rate.  If it carried on at that rate it would be 16 in 5yrs. You could manage with no treatment until around then, and then have chemical treatment for several years with new options appearing more regularly.  But actually you're hoping for another psma and RT.

I've not been watching Dr Scholz on YouTube much lately but he's big on younger people having aggressive treatment, triple drugs. You could look it up. It's in the US and he treats psma tests as everyday treatments. 

It does depend on your hospital as I was offered RT at 0.11 and a psma test when it gets around 0.2.  I'll need to see what is actually offered at the time as I suspect delays will push it back when the button is pushed for treatment. 

Good luck with your situation.  Regards Peter

User
Posted 16 Jan 2025 at 20:04

T, I had surgery followed by salvage RT three years later. Histology was poor. They were going to let my PSA go to around 10 before going into HT. With the development of PSMA scans I changed to having SABR treatment to a pelvic lymph node. I did have another pelvic lymph node treated, unfortunately my cancer is still progressing, but I have dodged HT for a while.

Thanks Chris 

 

 

 
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