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Hi all, I'm newly diagnosed with Prostate cancer

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User

Posted 06 Apr 2024 at 11:38

https://ascopubs.org/doi/10.1200/JCO.20.03282

I thought I'd post the results from this trial as always the results should be treated with caution.

It's a trial comparing whole pelvis RT to Prostate only RT for high risk and very high risk Pca patients and enrolled between 2011-2017 so it's a lot more recent than a lot of studies that are used to predict outcomes.

There's a lot to wade through and stats isn't my strong point, but for both groups the low 5 year reoccurrence rate does look encouraging, it was much lower than they expected, long may the study group continue to make it difficult to detect the effect!

"Given the higher risk profile of the included patients, the 5-year BFFS was estimated to be 45% with PORT, to be improved to 62% with WPRT. With a two-sided alpha error of .05 and 80% statistical power, a total of 120 events were required to detect the effect. Totally, 224 patients were required to be randomly assigned (112 in each arm), allowing for a 5% rate of loss to follow-up.

After a study period of 9 years, only 36 events of biochemical failure were observed, which was considerably lower than anticipated and statistically planned for. It was considered by the trial steering committee that the planned number of events for the primary end point may need an inordinately long time to occur or may never be reached."

Edited by member 06 Apr 2024 at 11:41 | Reason: Not specified

User

Posted 07 Apr 2024 at 12:31

I still come back to your high gleason score possibly being due to inflamation I'm not saying you don't have prostate cancer but urinary system inflamation impacts on PSA

What's your diet like ?

Lots of men go on a low inflamation diet to prevent prostate cancer progression

User

Posted 07 Apr 2024 at 15:13

That’s encouraging news about the whole pelvis radiation!

Edited by member 07 Apr 2024 at 15:18 | Reason: Not specified

User

Posted 08 Apr 2024 at 00:17

Originally Posted by: Online Community Member

Lots of men go on a low inflamation diet to prevent prostate cancer progression

If so, they're deluded.

Refusing medical advice and treatment for diagnosed prostate cancer and relying on diet to stop progression is a sure path to advanced cancer and ultimately, death.

Jules

User

Posted 08 Apr 2024 at 12:07

Originally Posted by: Online Community Member

Lots of men go on a low inflamation diet to prevent prostate cancer progression

If so, they're deluded.

Refusing medical advice and treatment for diagnosed prostate cancer and relying on diet to stop progression is a sure path to advanced cancer and ultimately, death.

Jules

Where do I advise refusing medical advise or treatment ? (I dont )

Where do I advise relying on just diet to stop progression of prostate cancer ? I don't - I am pointing out that many guys have gone on specific diets (after treatment) to prevent reoccurrence - I have read their stories ?

You are reading into things mate ?

Richard is undeniably worried and alarmed about his relatively high PSA and has been left in a state of fear - fear shouldnt be a motivation for treatment FACTS are better and its a fact that inflammation plays a part in prostate health it can impact PSA yes Richard has prostate cancer but inflammation may be responsible for the high psa - I could be wrong - but I am raising this point

Or do you deny inflamation plays a part in cancer ? sometimes inflammation leads to cancer ? Do you deny this scientific fact ?

User

Posted 08 Apr 2024 at 20:37

Lizzo, you are here representing your husband and from what you say, he has an elevated psa reading.

It might be helpful for your husband if you were to fill in a profile for him. Has he had scans, a DRE and maybe a biopsy. If so, what is his staging?

Fear is inevitably a part of getting or having prostate cancer and the "FACTS" that counter that are tests, results and treatment.

If your husband [not Richard] has not got this far in his diagnosis and treatment, perhaps that should be the next step?

Jules

Edited by member 09 Apr 2024 at 09:01 | Reason: Not specified

User

Posted 08 Apr 2024 at 22:41

Microcolei, I think you have misread it - Lizzo is responding to Richard99 - I don't think she is married to him!

Lizzo's husband (who is not Richard99) has supposedly been diagnosed with advanced PCa and was prescribed HT which Lizzo says she has put in the garage because she doesn't agree with the doctors and years of medical expertise - she is apparently treating him with her hormone patches instead. We have no information about how Lizzo's husband feels about missing out on his chance of a longer life.

Edited by member 08 Apr 2024 at 22:46 | Reason: Not specified

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

User

Posted 08 Apr 2024 at 23:11

Oops, sorry about the [edited out] Richard bit but thanks for the clarification.

I stand by the rest of my post 🙂. A full profile would be both helpful for Lizzo's husband and respectful of this forum.

Jules

Edited by member 09 Apr 2024 at 11:59 | Reason: Not specified

User

Posted 09 Apr 2024 at 08:38

Originally Posted by: Online Community Member

We have no information about how Lizzo's husband feels about missing out on his chance of a longer life.

Oooft!... 💣

🍿🤣

User

Posted 09 Apr 2024 at 14:47

I just want to say I am not anti treatment?

My poor Dad died 20 years ago of advanced Prostste Cancer aged 73 it was too late for him it had spread

My husband is 76 he had da Vinci robotic surgery in 2018 psa 8.63 gleason 4+4 pT3 we both think he is very lucky to have had an excellent surgeon he recovered well then begining of 2022 his psa reached 0.09

They wanted him to have bicaltumide then Zoladex then salvage RT without finding mets I said to hold on and not rush in he leads a sedentary lifestyle?

Lynn - actually I dont give Geoff hrt patches I don't have any

I give Geoff a very potent phytoestrogen called aguaje ( I dont advise buying aguaje off eBay from sellers from India bc it isn't genuine)

We are going to see his GP to ask for another scan in a couple of weeks bc his psa is creeping up slowly

Everyone happy with that ?

Edited by member 09 Apr 2024 at 14:53 | Reason: Not specified

User

Posted 10 Apr 2024 at 07:14

Thanks for the post Lizzo.

Clearly life is not easy for you and your husband for a number of reasons, including age and a sedentary lifestyle plus you've only given us a part of it.

This place has been helpful and supportive to me and a huge number of others [men and the partners/wives] so I hope it can do the same for you.

Geoff has a psa test coming up soon, plus you might have some scans to consider. In the spirit of this community I hope you'll share whatever happens next and maybe benefit from an exchange of ideas.

Having bulldozed Richard99's thread [I'm talking about myself], maybe it's time to take this topic elsewhere. Could I suggest to you, Lizzo, that you start your own thread? This would have the advantage of not getting ideas tangled up between different treatments.

In addition, if you're willing to add some details to your/Geoff's profile it makes it possible for others to see where you've been and where you're going before responding to your thoughts.

I know that when I was first diagnosed with cancer and told the treatment choices, I searched for less threatening options than the ones I was offered. I've seen other people here make the same comment but the reality is, that unless a treatment has a proven track record it's unlikely to succeed.

I wish you both well. You might well have a significant battle ahead of you but from what you have said conventional treatments still offer Geoff a good chance of surviving cancer for many years.

Me? Now aged 77, previously diagnosed G9, psa 11, locally advanced with 3 mets, now through HT/RT the treatment with no signs of recurrence. That's as good as it gets with this curse but there's no reason that you both can't get through this. Don't let the health system get you down!

Jules

Edited by member 10 Apr 2024 at 09:59 | Reason: Not specified

User

Posted 10 Apr 2024 at 07:42

Originally Posted by: Online Community Member

I'm 10 years younger than Geoff but had a very similar PSA, Cancer staging and Gleason score. I had the same op about 14 months ago. So far my PSA has remained undetectable but on the back of my mind I dread recurrence.

Best of luck to you both if further treatment is deemed necessary.

User

Posted 10 Apr 2024 at 15:03

I have absolutely no problem with anyone posting about anything on this thread, I really aren't that precious!

Lizzo,

I wish you and your husband well, hopefully your non standard attempt to tackle his rising PSA will work, but if not I hope you pursue or at the very least consider conventional HT, if either of you are unhappy with it's effects you'd be at liberty to stop at any point and Bical probably offers the swiftest exit strategy despite your reservations.

Edited by member 10 Apr 2024 at 17:59 | Reason: Not specified

User

Posted 10 Apr 2024 at 19:34

Originally Posted by: Online Community Member

I have absolutely no problem with anyone posting about anything on this thread, I really aren't that precious!

Lizzo,

Estrogen was the original conventional HT treatment for prostste cancer

I have always found Wikipedia to be excellent for science you may want to check this out

https://en.wikipedia.org/wiki/Side_effects_of_bicalutamide

Edited by member 10 Apr 2024 at 19:52 | Reason: Add more info

User

Posted 16 Apr 2024 at 19:26

I had a telephone appointment scheduled today for 11am with my Radiologist re confirming RT treatment and sat patiently by the phone with a list of points I wished to discuss, but unbeknown to me my phone doesn't accept calls from withheld numbers hence I later found out he'd not been able to contact me.

I will have to mess around with my phone to try remedy ID caller issue, but will in all probability consult a young person to help sort it out.

I also had my first Prostap injection this afternoon, given the size of the box and needle I was expecting it to be painful, but fortunately not. I'm rather dreading the effects and have found myself pacing the living room like Lon Chaney waiting for a full moon, but obvs it won't be that dramatic.

I did ask the nurse at my GP's if they could schedule a PSA and Testosterone test in 6 weeks, but he was having none of it.:(

I've been scheduled a bladder scan and flow test for Thursday, I'm expecting to ace this as my flow has definitely improved since I started on the Bical, I could probably jet wash the moss off the decking with it.

I've also been prescribed some Adcal tablets to help with bone thinning, they were described as chewy, I was expecting chewy like Opal Fruits, but they turned out to be chewy like plasterboard.

Edited by member 16 Apr 2024 at 21:10 | Reason: Not specified

User

Posted 16 Apr 2024 at 20:26

Ha ha ha yes the ad-cal are anything but chewy, more like chalk I think designed to reduce the farting. The Prostap injections in the belly no problem although I think after my first one after a couple of days it did feel like a wasp sting for a while. I also missed my radiotherapy pre-planning call, so don’t worry they will go through it with you when you go (it’s just a checklist of side effects etc but you’re in for a penny so c’est la vie eh?).
I do certainly hope that you fair better than me on Prostap, beware it might creep up on you! 😱.
Good luck

Spingebob ps my PSA now 0.02 😬😬😬😬😬

User

Posted 16 Apr 2024 at 21:09

Great news re the PSA and you must be feeling on the up to have ventured to France, have a wonderful trip.

User

Posted 18 Apr 2024 at 17:30

My Radiologist must have reviewed my notes before our missed telephone appointment, hence he'd booked me in for the flow test and bladder scan!

I turned up at the allocated time, but despite joining a waiting room full of people I was swiftly ushered through.

When the nurse booking the test had telephoned she'd asked that I turn up with a full bladder.

I enquired as if she wanted a normally full bladder or a "super full bladder"

"A normally full bladder will be just fine", she replied in a tone of voice that indicated she thought she was dealing with someone a few shillings short of a pound.

400ml of apple juice imbibed and 400ml similar looking expelled in what I thought a respectable time, a few seconds later the teleprinter sprung to life as if the first footy result of the afternoon was in and a respectable peak flow of 30ml/sec was recorded and a scan showed a residual of about 25ml.

I'd fully expected to pee and pee off, but unbeknown to me I'd been allocated a slot with a Urologist.

He was very pleasant and genial and explained that he'd fully expected to be booking me in for a TURP on the evidence of my previous Flow test. I explained to him that it had been carried out 20 minutes after I'd given a urine sample to check for infection and 10 minutes after I'd been first told that I almost certainly had cancer, he smiled and stated that he too would have struggled to pee on demand in those circumstance.

One thing that did suprise and slightly concern me was that the PSA test that was taken just before I started on Bical came back as 32. I know these tests can vary a bit but that's quite a lot less than my initial 42 from 3 months ago and I can think of no good reason for such a decline, but he didn't seem unduly worried and was viewing it as a positive I'm less than convinced and would have been happier with 42 again or a little bit higher.

He said my rescheduled appointment would be in a couple of weeks and we rambled on about dads, diet and dogs, but I did use the opportunity to bring up Abiraterone......

Edited by member 18 Apr 2024 at 17:40 | Reason: Not specified

User

Posted 18 Apr 2024 at 17:50

Richard, I'm sorry you've had to join this forum. But OMG you've made me laugh.

Cheers mate.

User

Posted 19 Apr 2024 at 13:05

Thanks Adrian,

I've learned so much from reading bios and threads on this forum, I'm nowhere near knowledgeable to offer any advice to others, but pleased that if I've managed to raise an occasional smile.

Edited by member 19 Apr 2024 at 23:58 | Reason: Not specified

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