Salvage RadioTherapy progress - plodding along

The thrust of a lot of the research seems to be the other way round to what you are interpreting. Some data is suggesting that while we see G7(3+4) as more serious than G6(3+3) and therefore needs radical treatment, some G7(3+4) cases might be suitable for active surveillance as long as there is no cribriform pattern. It is perhaps part of the ongoing drive to find ways of identifying which are the pussycats and which are the tigers?

Whatever the implications, it is out of you and in a bucket which can only be a good thing.

My path report said t2c n0 m0 but it mentioned invasive adenocarcinoma as opposed to non invasive. I had internal PNI but no extraprostatic PNI - no other details. Does that count for the invasive comment?

I think it is just medical speak. 'Invasive' means it has a capacity to spread - another way of saying it would be 'malignant'. In brain tumour world, some tumours are malignant or invasive while others are benign or non-invasive. All adenocarcinomas are therefore 'invasive' - I think they just wrote the full name on the path report. 

Both these events have put me in a blue funk over morbidity and like a fool I filled out an SRT nomogram with short BCR time and a guess at a fast PSADT. The results were grim. I'm kicking myself now but also angry that I was not given even a hint as to how crap they are.

I should have stayed in the dark. Why do I do these things?

In an idle moment I re-did my MSK Nomogram, now I am six month’s post-surgery.

I was surprised that if you put in different months of undetectable PSA into the calculation, the longer the chances of no recurrence rise exponentially. Even changing from six to nine and twelve months show appreciable differences.

They all look a bit grim at the ten year prognostication though. So much for being ‘cured’.😟

All say my chance of survival for fifteen years is 98%.😁

Cheers, John.

https://www.mskcc.org/nomograms/prostate

Edited by member 12 Dec 2018 at 11:07  | Reason: Not specified

The scan didn't find mets so we pushed ahead with SRT but he did warn me the scan was probably a false negative result due to the sensitivities of F18 Choline.

I so hope he is wrong or I am bgurred.

Unless there problems like a rising PSA or you are suffering bad side effects I wouldn’t be too concerned.

Easy for me to say though.......:)

Apparantly two weeks of clinics were cancelled. Something something Tory cutbacks.....

PP

It is always frustrating to get appointments changed, postponed or cancelled and I understand your concerns. 

If I understand comments on here regarding post RT results, it is the one 18 months post RT that gives a better indication of how successful RT had been. I do like to see a pattern in the results and fortunately I am at a hospital that tests to 2 decimal places. My post RT PSA results have fluctuated slightly since RT, January next year will be My 18 months PSA. I think we are both at the stage where there would need to be a significant PSA rise before any other treatment would be considered. 

Take care, forget about PSAs for a bit  and have a great Christmas.

Thanks Chris

Bl**dy shame I finally gave up caffeine - I think I am going to need it!

You will have to disclose your cancer to the employer between being offered the post and actual start date, if they ask about your health. But cancer is a protected characteristic under the Equality Act so they would be acting unlawfully if they discriminated against you because of it.

Edited by member 31 Dec 2018 at 14:47  | Reason: typo

Francij1 - think caffeine withdrawal and a mild hangover bit my bum there. The withdrawal is due to the fact I found out something this last week about my lifestyle that I was in denial about. I did a cold assessment of my caffeine intake recently owing to some palpitations and realised I was in denial about mega dosing caffeine with poor hydration. Not only the physical side effects (budum budum budumptity budumptity budumptity budumptity bum urgh that does not feel right) but the high levels of anxiety. I think the caffeine was countering the meds I am on. Allowing for Xmas booze I feel a lot better with the crashes directly correlated to naughty drinkies.

What was interesting about having a clearer head was that something was bugging me about what I originally posted about my recurrence and with a rare very clear head went back to my calendar and reviewed the dates things happened. It turns out I was a bit innacurate in my reporting due to no dount being in a right tizz and rushing things all the time. My BCR was actually nigh on ten months (not the random numbers less than that that I kept posting) and it was nigh on ten weeks between the 0.16 and 0.24 owing to the rebooked delayed onco appointment. Caffeine and stress clearly destroyed my mahematic ability. These numbers are a bit better but they are still what they are.

What it does show is that I needed to weed out lifestyle issues that were hidden to me or I was in denial about that were having an effect. The take out is that it is useful to stop, take stock and listen to yourself and see what feels off then do something about it.

Next steps - no booze after New Year and back on the diet and fitness and find a bl**dy job.

I wish you all a good new year and a 2019 full of good news and good people.

PP

I worked out I was on the equivalent of around 20 cups a day. I don't think I can go from that to one or two or have the occasional one. I have somewhat an addictive personality which is also why I need to can the booze (the hangover from last night was a good reminder why!)

She suspects it may well be RT related with IBS on top but is not concerned and says it is very common. She suggested lowering my fibre intake and upping my fluid intake and getting a GP appointment (which I won't get until after the first review most likely) if it continues to get some meds.

No red flags then (excuse the joke!).

PP

I have bleeding from time to time, very unpredictable.

Radiation proctitis was diagnosed after sigmoidoscopy. I have also had intermittent IBS over many years but the bleeding I get now is different. I would suspect radiation proctitis. My rear end is often uncomfortable, itchy or sore.

Advice seems to be to reduce fibre, caffeine and alcohol intake.

You've got to live though so no way I'm eating white bread! I also like caffeine and alcohol!

It will be of interest to see if  SpaceOar reduces instances and severity of this.

Bri

There will have been other researchers with other findings in the year since this report was written; the trouble is that if you want to find data to argue a particular point you will find it out there somewhere. My previous comment remains; you weren’t a 3+3, you didn’t opt for AS and the cribriform was removed from your body some time ago now.

Fingers crossed for your results x

I probably look better in a gimp mask than he does ... swings and roundabouts though as his car is better than mine

Edited by member 24 Jan 2019 at 22:26  | Reason: Not specified