Post RP and SRT journey - Jan 2021 update - - Page 6Localised cancer

User

Posted 30 Nov 2018 at 13:30

I think much of the research is about cribriform identified at biopsy and what it means for treatment options. Yours was identified in pathology I think?

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.

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

User

Posted 30 Nov 2018 at 15:03

Hi Lyns

Yes it was post RP path.

I see what you are saying - I misunderstood what was being said as it was only a cursory paper review owing to only getting the full path report today.

The nurse did say something about finding new ways of assessing PCa above and beyond Gleason so that ties in.

The bucket line did make me chuckle, much more than I have of late. I have this vision of a small lump of mutant meat being dumped in a bucket by the surgeon and a tiny tinny voice shouting "let me out you B*******!" :)

Cheers

User

Posted 09 Dec 2018 at 10:30

Quick question

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?

User

Posted 09 Dec 2018 at 16:34

I don’t really know the answer to that one. Hope someone comes along that does.

Ian

Ido4

User

Posted 09 Dec 2018 at 19:43

Originally Posted by: Online Community Member

Quick question

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.

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

User

Posted 09 Dec 2018 at 19:51

Ta Lynn

I just read it somewhere and it twigged with what I had on my report.

I think I am going to burn that bl**dy report now :)

User

Posted 11 Dec 2018 at 21:16

it is the first year anniversary of my uncle's death from lung cancer shortly and I am seeing my old friend who has not got long.

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?

User

Posted 12 Dec 2018 at 08:22

These anniversaries and meeting your friend will be difficult.

I too looked at those nomograms, a year to BCR, 5 week doubling time etc, and the statistics were awful.

I can’t say I don’t think about it but I have decided I am going to beat those damn statistics!

Time will tell.....

Meanwhile I’m going to have good time!

Ido4

User

Posted 12 Dec 2018 at 10:57

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

User

Posted 12 Dec 2018 at 13:04

Thanks Ian. I went away over the weekend and forgot to pack my happy pills. Like an idiot I posted when I was not back up to "happy speed" which explains a lot of my OCD wittering. I feel like a fool now.

Bollinge - I realised after posting by doing some digging that there are too many different types of nomograms all using different data sources so they are risky using. The also require different parameters (some ask for PSADT some do not). Mortality does seem to worsen in some cases but as has been pointed out to me we are not statistics.

I do have one question - both Ian and Otherwisegreat were given PET scans but I was not. Is that an area by area thing? I would hace assumed they would have given me a PET scan if they were concerned about mets?

User

Posted 12 Dec 2018 at 16:56

Hi PP, I was given the PET scan because my oncologist was convinced (still is) that I have micromets in a lot of places. He ordered the Pet scan to have a look at that with the proviso that if the scan found mets then I wouldn't receive salvage radiotherapy.

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.

Ido4

User

Posted 20 Dec 2018 at 11:57

Oh joy of joys

I just got a letter stating that my first review post SRT has been put back a month.

Bit concerned that if things have not worked that is a month without active treatment.

Thoughts?

User

Posted 20 Dec 2018 at 15:13

Is your PSA undetectable? If so no further treatment would be happening.

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.......:)

Ido4

User

Posted 20 Dec 2018 at 15:16

That is the b;**dy problem - this will be the first blood test and review post SRT. I have no idea what is going on. Clearly they are not bothered even if it is potentially rising.

It has made me rather grumpy and more stressed but I guess there is nothing I can do. If the Reaper has my name on his scythe a month won't matter.

User

Posted 20 Dec 2018 at 15:34

My onco McMillan Nurse has ring me back, talked it over and moved it forward two weeks. They are absolute stars the two I have.

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

User

Posted 20 Dec 2018 at 16:21

No wonder you’re stressed, good they’ve brought things forward again.

Ido4

User

Posted 21 Dec 2018 at 16:33

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

User

Posted 21 Dec 2018 at 18:52

Hiya Pete, Same thing happened to me with a appointment rescheduled for nearly a month later. It was my first post SRT psa test and I'd already felt the tension building so to wait even a few more weeks felt like an age. Staffing shortages and increased demand were given as the reason. I could have got my psa score before my appointment but did'nt want to in case it spooked me and I would still have to wait to see the Oncologist. At least you've managed to get the sentence reduced mate which will help. I spoke to one of the nurse specialists at the hospital and she suggested I should take heart from the fact that if something was wrong such as any worrying rise in psa, my original appointment would'nt have been cancelled. Try and keep positive Pete and all the best.

Paul.

User

Posted 21 Dec 2018 at 19:41

I know about the 18 nadir. I just want to know if is an immediate failure of which there is a chance. As you say time to think about presents and booze not PSA. I do hope next year will be better.

User

Posted 29 Dec 2018 at 15:22

Been thinking about the future and making sure my family are provided for.

My life insurance runs for another 7 years and I have a fair but not brilliant pension cover for my wife plus some savings.

If someone has to split my dog tags in the shorter term, she won't be that bad off but if I linger, it will just be the pension.

Can one extend life insurance when one has cancer? What other alternatives are there to help make families financially secure?

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Post RP and SRT journey - Jan 2021 update

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