Now on to SHT/SRT

If it’s any consolation I have felt blindsided, scared, unsure if the doctor had fully read my notes, looked at my scans.

They are unbelievably busy and I think sometimes lose sight of us as individuals.

I asked questions, also didn’t always get answers but when my oncologist told me he wasn’t prepared to risk major side effects of SRT in my instance I asked for a second opinion.

After recurrence the urological surgical professor referred me for a pelvic MRI.

My oncologist also sent me for an F18 choline PET scan, both scans showed problem areas which were targeted during radiotherapy. He told me my recurrence was high grade and that SRT had a 40% chance of cure. He told me my PSADT was 1,2 months.

A year post radiotherapy I am still on PROSTAP as my oncologist initially decided to treat me like I was a new patient going through the EBRT route.

I had 20 treatment fractions rather than the 30 you seem to be getting.

It is incredibly difficult dealing with recurrence and all it means. I am so sorry you are another person facing this.

But here I am a year post SRT, I don’t know how it will all go but right now I am enjoying life, thankful to be here and enjoying the company of my family and friends. I even went to Calgary in Canada for a holiday 6 weeks after RT with full insurance and my wif3 and I had a great time.

Do I have dark moments, yes but mostly I am happy and fulfilled.

Stay positive my friend, you will get through this with the support of family, friends and communities like this.

Ian.

And I'm having 33 VMAT treatments. I don't totally understand the differences in delivery methods, but I was told VMAT is more accurate and less likely to hit healthy organs.

And today they wouldn't treat me - my bladder wasn't full enough and my rectum was too full. They sent me away for an hour to get it all sorted. They also warned me about my weight saying I had put a little on and that my calculations would need to be redone if this continued.

Ulsterman

Hi everyone

Just a quick note as I am having a last blast on the red as this is my first day on the HT tablets so anything more than this will be a ramble.

I just wanted to thank everyone for the kind words and support.

Knowing that there are other people in the same boat to talk to is better than any anti-depressant tablet!

Carpe Prostatem!

Pete

Pete,

If you give up alcohol, you probable wont live any longer?

But it just may seem that way?

atb

dave

and for me, tonight is happy beers night!

Well I am on holiday so the alcohol embargo is off the books for a week 😂

I am on day 5 of the pills and so far the main change is that my sweat smells different - less teenagery.

I am also more up and down emotionally but that may be just my head playing games

One minute I am thinking the fact that I was t2c n0 m0 is a good thing and the next (based on a comment on another forum about the fact that I had a very small tumour volume means it has escaped and may be aggressive) I am updating my will.

I have tried to park the obsessive research as on one hand I find research that says that even with srt the chances are poor and on the other the standard gp update letter I got from the hospital suggest that even with bcr the chance of avoiding clinical reoccurrence is quite good.

Going to have to grit my teeth and press on.

Pete

Thanks to everyone responding to my survey. I am getting enough data to make some interesting interpretations!

Regarding my situation, I have been pondering what could have led me here with a t2c n0 m0 and I wonder if the fact that I had two biopsies and after the second one I bled like a stick pig might have had a bearing, by allowing cells to escape. Either that or just random chance that one snuck out. My daydream is that this is just a result of a tiny amount of benign prostate tissue being left behind.

Whatever, it is sort of sinking in now that what is done is done, and I need to look forward.

I do have a lot to be thankful for. Caught early, both sets of treatment (first RP and now SRT) happening quickly, a loving and supportive family, a job (for the time being as I am a contractor) and something of a rainy day pot. Focusing on these thinks is going to be critical for my state of mind going forward, whatever happens. I also have the opportunity to put something back, in terms of my thesis.

Carpe prostatem

Good to see such a positive post PP :-)

Four days after my first Trip jab and I have a stinking head virus and am REALLY angry out of the blue after a blue funk. I think it was some celeb saying he had been told he was ‘cured’ four months after RP that set me off. Bollocks can you say that after that time. Also had a call from GP scheduling second jab..

I have to put on a game face with everyone apart from my oldest friend and my own counsellor because you can’t show the cracks. I want my family to live their lives without propping me up.

I feel angry at myself for feeling like this when many are far worse but I hate unknowns.

Any advice on not being a wuss at this early stage?

P

Simple fact is more tgsn 2/3 of people who catch it early are effectively cured, ie they die of something else that isn't related to PC. Why should those people continue to be victims of PC when ultimately they won't be??

Of course the downside is if it does come back you have to go through it all again but at least you will have had 6 months of blissful ignorance!

@Lyn - thanks. I know the Kubler-Ross model well from my counselling work but it is one thing to study and another to experience! I do need to let go and break out of the cycle because you can see from the comment below I'm stuck on the numbers game.

@francij4 - thanks for doing the survey. I think it is definitely transferrance with a little bit of denial. I know the 2/3 number but in my case I am in a horrible grey area. G7(4+3) T2cN0M0 with low volume (3%) and no margins but PSA rising in less than a year. The discussions and research around PSADT is very ambigious. They do seem to suggest that a high PSADT in < 6 months means no chance of 15 years and > 1 year you stand a better chance but again I am in a grey area with a probably high PSADT somewhere between the two. BUT it was spotted quickly. I feel like it is Russian Roulette, especially having to wait four months for SRT and an onco who would not even touch prognosis. Really it all boils down to whether I have (agressive) mets or not, localised or otherwise. I guess one advantage is that (painfully slow as they are) trials are bringing new treatments on line every year. Just have to grit my teeth and plod on.

Hi Lyn

Yes - you are right. I'm flapping at the moment, mainly because I have been ill all week and am very tired.

I understand the wait for the RT. I just meant that it is a long wait to reflect and grow man-boobs and and even longer wait to see if it works :)

I wasn't aware of the profile thing but now you have mentioned it, it is a good idea, so I have added my potted history for all to see.

Cheers

P

Hi Pete,

good too read your positive upbeat posts, sorry to read the other ones.

Kubler-Ross eh?

I dont know your sense of humour, mine is dark, even if I am in the mire.

For a quick demonstration of the KR Model, you could You Tube - Homer Simpson -the 5 stages of grief.

Cracked me up when I saw it many years ago. Cracked me up again when I watched it having had my diagnosis.

It's not for everyone, but it may help someone deal with their demons?

Hope you can have a good weekend.

dave

Quick question based on something someone said in another forum - would a scan have helped in my current situation?

Some oncos would have scanned in your situation but based on your description of your onco, I suspect it would have been pointless in your case as he is hell bent on treating you in a certain way. If you ask him, i think he will say that at 0.17 your PSA was too low for a normal MRI scan to be able to pick anything up, and that he doesn't have access to any of the fancy, modern tracers that give more detailed images at small PSA levels.

Fact is, your PSA is fairly typical of stray cells left in the prostate bed so HT followed by RT is a sensible treatment option. If you had an atypical PSA trend (2.0 straight after op or something like that) we would probably all have been screaming at you to get a second opinion and a choline PET scan.

Gotta trust your doctor more than unofficial experts on forums :-/