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Salvage RadioTherapy progress - always look on the bright side of life

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
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 :)

P
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!
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.
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?

P
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.......:)
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.
User
Posted 21 Dec 2018 at 16:33

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

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?

PP
User
Posted 29 Dec 2018 at 19:52
I’m not sure of the answer to this one. Hopefully someone will come along with experience.
User
Posted 29 Dec 2018 at 21:34
Taking a new policy now would be very expensive for a poor return. You could look at those ‘no medical’ funeral plans but again, poor returns. Basically, you needed to be a fortune teller and buy security before you were diagnosed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2018 at 21:43
So it is back on with the harness to get as much money put away as possible before I have an argument with my perch.

Bl**dy shame I finally gave up caffeine - I think I am going to need it!
User
Posted 30 Dec 2018 at 01:50
Do you have critical illness cover? Have you asked your insurers whether you are covered for an early claim? John's insurer rejected his claim because they don't consider G7 to count as cancer but I know others here have been successful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 07:13
I was planning early retirement before PC and Divorce. That is not an option for me now but strangely I actually enjoy being in the harness more now and work helps remove the "what if's" from my mind. As an employee I get a large death in service benefit so that is my comfort for my family and soon to be new wife.
User
Posted 30 Dec 2018 at 19:44
No critical illness cover or similar as it is a rip off.

Will aim to get a permanent job to get all the pension and death in service benefits.

I hope they give full cover in the short term as I may well be dead in five years.
User
Posted 31 Dec 2018 at 00:33

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2018 at 01:00

Originally Posted by: Online Community Member


I hope they give full cover in the short term as I may well be dead in five years.


Well with your stats its safe  bet you will still be here in 5 years time!!

User
Posted 31 Dec 2018 at 13:41
Lynn - thanks. I forgot that I am protected (It a;so counts as a disability). I am also going to review my retirement options as well as I hate idea of of being a desk jockey for any length of time, illness notwithstanding!

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
User
Posted 31 Dec 2018 at 16:39
Pete, I haven't had caffeinated coffee at home for decades, always decaffeinated, but luckily whenever I do have the caffeinated in our local coffee houses I notice no effect from the drug at all. Just lucky, I guess. Why be so drastic as to give up booze altogether? It has its place in moderation. If you are a caffeine junkie, just go for decaffeinated tea and coffee!

AC
User
Posted 01 Jan 2019 at 18:16
Auld

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!)

User
Posted 22 Jan 2019 at 11:54
Hi all

Over the weekend I had the joys of the red tide when I went for a sit. Fresh blood and a fair bit. It subsided for a day or so and is back today but less of it. Is this usual several months after RT or is it just co-incidence?

I have been on the IBS train for a few weeks and I do seem to get the red tide with that on occasion. I also drank way too much over Xmas and New Year as I was really fed up (in full existential crisis mode at the moment - God hates me / reaping Karma / all that guff). I have only really cut back a week ago. I wonder if that has contributed?
User
Posted 22 Jan 2019 at 13:10
I would question whether you do actually have IBS or whether it is radiation proctitis, for which there are treatments. Push someone to explain to you why they believe it is IBS.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2019 at 13:18
Hi Lynn

I have had stress related IBS for years and know the symptoms likke the back of my hand. It has returned due to the stress of my pending test. I would occasionally get the red tide with that (possibly diet related too) and it is a known side effect of IBS.

Thinking back I did have a short bnout over Xmas.

I have not yet talked to the hospital as it is on a day or so since it kicked off. Based on what you said I think it makes sense to give them a call.

Cheers

PP
User
Posted 22 Jan 2019 at 13:30
Just rang the onco nurses and had a chat.

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
User
Posted 22 Jan 2019 at 14:35
Much of the self-help is the same whether it is proctitis or IBS. However, you could ask for a hydrocortisone rectal foam such as Colifoam, which a number of members here have found very effective.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2019 at 14:44

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.


 

User
Posted 22 Jan 2019 at 14:57
Hi

@Lynn - I'll get to see them and ask about the foam. Thanks for the advice. I'll quote "radiation damage" when I book - that way I might get something quicker than a four week turn around :)

@Ian - sorry to hear that. My symptoms and bleeding are all usual IBS ones for me but they may be masking the procitis. I have removed caffeine altogether. Am going to reduce harsh fibre. I think the fact that I drank like a depressed fish over Christmas and New year may have been at the root of this outbreak. I am cutting down my drinks to one mild session a week and the occasional "eff it" session every month or two to see if that helps. Oddly giving up caffeine was a doddle and made my anxiety levels plummet. Fibre is just eating habits which I can change. Booze is all in the head - I need to get kick out the demons of self blame and fear of the future and whatnot to get sorted. Funnily I was watching a documentary about exorcism last night. We need prostate exorcists :) :)
User
Posted 23 Jan 2019 at 07:42
I just read a BBC report about daily aspirin and bleeds. I’ve been (when I remember) taking dst aspirin. Could that impact radiation proctitis?
User
Posted 23 Jan 2019 at 12:58

I was taking daily aspirin since starting on tamoxifen (since May)


 


i developed IBS symptoms, guts were like a washing machine


 


i put it down to SRT last year, spoke to GP then stopped the aspirin - hey presto - bowels quickly returned to normal

Edited by member 23 Jan 2019 at 14:28  | Reason: Not specified

User
Posted 23 Jan 2019 at 13:12
Interesting. Going to look at ginger supplements as an alternative
User
Posted 24 Jan 2019 at 18:48

On my other forum someone posted that they had cribriform elements like I do and found an extremely pessimistic report and they were panicking like mad saying there were all sorts of reports that came out in 2017/18 giving gloom and doom over it.


I panicked at the time but Lynn talked me down by saying the research simply meant that 3 goes to 4 with cribriform.


This report suggests it is worse and is comparable to intraductal.


https://journals.lww.com/anatomicpathology/Pages/articleviewer.aspx?year=2018&issue=01000&article=00004&type=Fulltext


Thoughts?


I'm kind of in an angry resigned place at the moment just waiting for my first test knowing that whenever I think I am getting in a better place Karma comes and kicks me in the goolies.


P

Edited by member 24 Jan 2019 at 18:57  | Reason: Not specified

User
Posted 24 Jan 2019 at 20:13
Maybe time for the mild booze session mate
Bri
User
Posted 24 Jan 2019 at 21:18

Already started 

User
Posted 24 Jan 2019 at 21:28
It is a literature review (written 12 months ago) of previous research, all of which must be at least 2017 and mostly older than that. It doesn’t say anything different to what we would expect; cribriform is a significant finding at biopsy which should be reported on pathology reports because it means any G3 should be treated as if it was a G4 when determining treatment v AS. It seems more pathologists do mention it now but the researchers think all pathologists should include it if present.

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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2019 at 21:42

Thanks Lynn


Voice of sanity. I think  the OTT Daily Mail phrasing got under my skin a bit. Thanks for the Giibbs style slap round the back of the head to get me back to sanity 😂


Pp

User
Posted 24 Jan 2019 at 22:08
I can afford to be nice this evening, I have had a great day scaring the tihs out of head teachers
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2019 at 22:10

Originally Posted by: Online Community Member
I can afford to be nice this evening, I have had a great day scaring the tihs out of head teachers


 


Nearly as good a cool job as being Batman 😂😂

User
Posted 24 Jan 2019 at 22:24

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2019 at 22:27

Matt black spray paint, tinted window plastic and a couple of fireworks tied to your exhaust and you will be good to go. Don't forget to shout "Dinner Dinner Bat Lynn" out the window as you chase the head teachers wink

 
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