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Now on to SHT/SRT

User
Posted 18 May 2018 at 22:31

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

User
Posted 18 May 2018 at 23:30

Nah, you are not being a wuss. It is okay to be angry - your counsellor has no doubt explained to you that you may go through grief phases - for the loss of the bits of you that you never fully appreciated before like your sexual identity / prowess, for the realisation that you are not indestructible, for the fact that you may not outlive all your friends, or just for having to deal with something that seems indiscriminate and unfair. I think most people diagnosed with cancer feels these things at some point (or their loved ones do). I was very angry and sad in the early days that J & I probably won't live to be 100 together, that at 44 my sex life was more or less over, that I was dealing with PCa 3 times over. But a new normal sets in eventually and I just made a decision that we were going to cram all our adventures in now while we can, just in case. Nine years on I am wondering if we can actually afford to keep on having all these adventures since he is still here, still well, still with a PSA of 0.1, etc, etc!!!!

Be angry about the celeb and then feel a bit sorry for him. He may have paid a fortune for private treatment from a urologist with an ego the size of a small planet who has told him he is cured. We had a member on here recently who was told before he was even discharged "I got it all, consider yourself cured" which is preposterous but a patient will believe it if he has no reason not to. Alternatively, the celeb may have agreed to go public at the request of one or other of the campaign groups who do I think sometimes want to play down the negatives so as not to discourage men from going to the doctor. On the other hand, John tells me that Jeremy Vine did yet another phone in on PCa this week and it was handled really well including the 'survivor' who talked openly about ED when Vine was waffling with euphemisms.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 May 2018 at 05:04
I think for some people it helps to have surgeons with big egos who tell them they are cured provided they are still monitored. This bravado allows them to get on with lives and transfer all their worries onto the surgeon.

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!
User
Posted 19 May 2018 at 05:09
survey completed BTW
User
Posted 19 May 2018 at 16:12

@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.

User
Posted 19 May 2018 at 16:34

You see and read what you want to believe.

‘Having to wait 4 months for RT’ is a bit of an odd comment. You are aware, presumably, that this is deliberate? The science shows that the longer you are on HT before RT starts, the better the outcome. Some oncos are going for 6 or even 9 months between starting HT and starting RT.

It is hard to keep track of your story with no profile completed :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 May 2018 at 17:36

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

User
Posted 19 May 2018 at 17:55

Tomorrow will be a better day

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 May 2018 at 18:09

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

User
Posted 20 May 2018 at 09:50

@Dave


I will see you Homer Simpon's 5 stages of grief and raise you American Dad's 5 stages of grief https://www.youtube.com/watch?v=8JOpLm1UiLQ


Yes, I survive on black humour too!


@Lyn


Now I know that profiles are a thing, I had a read of some of the others here. Notwithstanding what may or may not be going on with me there are a lot of men here with far bigger challenges who are being very brave. I feel kind of sheepish now...


P

User
Posted 21 May 2018 at 20:52

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

User
Posted 21 May 2018 at 21:11

What sort of scan Pete?

dave

User
Posted 21 May 2018 at 22:08

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 :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2018 at 16:26

Thanks Lynn

Can you tell I am a worrier? :)

It is a bit stressful at the moment as my contract is coming to an end and I doubt I will get another one for the two months before RT and I let it all nibble away at me. I do have a fair lot of savings but still...

Luckily today is a good day (I got through my personal training session in one piece) and the sun is shining.

P

 
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