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Chris J's Journey

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User

Posted 12 Aug 2015 at 19:52

Chris and El

Our pms have probably covered most of what I could and have said. I am so very shocked and sad that the pathology has come back the way it has. I know this is going to present a whole new set of challenges to you both.

I cannot put myself in your shoes it has taken me a long time to realise only the man himself can be there.

Nothing more I can add right now other than to say there are a whole gang of us here ready to give you any support and help that we can.

Xxx

User

Posted 12 Aug 2015 at 22:06

Chris and El,

I am so sorry that the results have come back this way, you have been so supportive to Stuart and I over the past couple of months and to so many others on here too. I am just so upset for you and want you know that I am here for you.

Much love from us both,

Trish and Stuart

User

Posted 12 Aug 2015 at 22:10

Just to say thinking of you and Elaine Chris.
Best Wishes
SAndra

We can't control the winds - but we can adjust our sails

User

Posted 12 Aug 2015 at 23:32

Hi Chris

At times like this, words are not enough. You have the love of El and your family. I truly hope you can still overcome all that has been thrown at you.

Paul

Stay Calm And Carry On.

User

Posted 13 Aug 2015 at 04:51

My thoughts are with you Chris. Your strength on your journey has been an inspiration to me and others.

Dick

User

Posted 13 Aug 2015 at 06:25

Regarding salvage RT , have any of the brains on here read that it should normally be started before the PSA gets to 1 to be effective , especially where original Gleason and PSA were high and also the doubling velocity was high ( mine was racing pre-op). I think that's why they removed the RT / HT route in the first place. Lots of questions to ask Onco but I hope he is so truthful. I've always been told on here not to rush into any decisions , and would not want unviable treatment that would make me really ill. Sounds silly but I'm not " I'll " at all in any way at the moment
Regards Chris

Edited by member 13 Aug 2015 at 06:27 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 13 Aug 2015 at 08:17

Hi Chris

Sorry the stats were not what you were hoping for, I know how that feels mine came back at 0.42 after RP and a rapid doubling time of 6 weeks. They wil want to keep you off of hormones until the choline PET/ CT scan is completed, but then I assume you will be given hormones to reign it back until treatment by RT is being carried out. They will probably want you to be on hormones for a few months prior to being zapped daily for several weeks and continue with the hormones afterwards. If it's any consolation I had spread to both the bladder and the prostate bed and the RT took care of it, but in my case it's now been found in my pelvis so the fight continues for me.

All the best

Roy

User

Posted 13 Aug 2015 at 10:10

Originally Posted by: Online Community Member

Regarding salvage RT , have any of the brains on here read that it should normally be started before the PSA gets to 1 to be effective , especially where original Gleason and PSA were high and also the doubling velocity was high ( mine was racing pre-op). I think that's why they removed the RT / HT route in the first place. Lots of questions to ask Onco but I hope he is so truthful. I've always been told on here not to rush into any decisions , and would not want unviable treatment that would make me really ill. Sounds silly but I'm not " ill " at all in any way at the moment
Regards Chris

I think the onco will want to have scan results and all your data before s/he answers that question Chris - if they offer you curative RT it will be because they believe it might work. I don't think the NHS offers treatments just to make people feel something is being done.

We did have someone else here fairly recently (name escapes me right now but it will come back to me) whose first PSA post-op was in the region of 4 and I am sure they had salvage RT so I don't think there is a set cut off point of 1

A few weeks ago, you thought being diagnosed was the worst thing ever and then you believed having treatment was the worst thing ever. You survived both. You will survive this as well :-)

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

User

Posted 13 Aug 2015 at 11:20

Hi Chris,

Not the news we were all hoping for. Sorry to read about this latest twist. But, I admire the way you are dealing with it.

If you look back to your earlier posts I think you will see how much better you have coped with everything as it has developed when you were so doubtful about your ability to handle your situation to begin with.

I wish you and El well.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 13 Aug 2015 at 12:21

Thanks for taking time to post everyone. Yes it sucks , but I feel determined to deal with it and be strong for my family. But then those of you who know me know that could all collapse in an instant. But I'll grit my teeth. I have the ' acceptance '. Family holiday tomorrow. It's going to be great. Onco appt 28th so straight back into it when home.

Thank you and wishes to all

Chris

If life gives you lemons , then make lemonade

User

Posted 13 Aug 2015 at 13:22

Hey Chris

You know how I feel about your results my friend from our daily texts away from this forum.

You have all our support and you have to soldier on, you've been my inspiration from my diagnosis and now you are my friend.

You be strong but most of all enjoy your holiday tomorrow.

Steve

User

Posted 13 Aug 2015 at 13:45

Ok so tears now - I thought i'd stopped ! I'd forgotten that huge smile mate . Nice to see you post mate

If life gives you lemons , then make lemonade

User

Posted 13 Aug 2015 at 14:26

Chris

I am sorry to hear of your news. So far I haven't had to travel the road you are on so I am not qualified to comment on the treatment you will receive. However, even though we do not know each other, I wanted you to know my moral support is behind you all the way.

You may disagree but I can see much positiveness in your posts and you come across as very supportive of others on the forum.

Whatever the future holds I wish you and your wife well. Make the most of your family holiday.

User

Posted 13 Aug 2015 at 15:07

Chris

Time and data usage, particularly on long threads, forces me to leave out most of the surgery posts. However experience tells me when replies come in pretty quickly it's either good results or not so good news. Upshot is I read the histology post. From your other upbeat posts I had a mental picture of you doing and coping well. So of course that post shocked me.

I always try to look for the positive. The one that comes first to mind is there're G9 T4 guys who take the view having the bulk of the tumour removed gives a far better outcome but are refused surgery. Although of course you would rather not be in this position you have achieved that.

From your other upbeat posts I've no doubts you will both pick yourselves up and fight on.

Keep strong and positive

Ray

User

Posted 13 Aug 2015 at 15:50

Hi Chris,

Just read your histology report........not the best news you could have had, and I'm gutted for you.

Your treatment path will now depend on the results of the PET scan together with all the other data available I would think.

I'm way out of my depth when it comes to any medical advice regarding possible treatments etc....so will leave that to the medics and more experienced members of this forum who have a similar diagnosis.

Just want you to know that you and El are in my thoughts, and I know you will find the strength to fight this together in your own way.

Enjoy your forthcoming holiday..

Best Wishes
Luther

User

Posted 13 Aug 2015 at 19:14

Hey Chris

I told you we were all here for you, wow even Raiden has posted, even though I know you two talk regularly.

Raiden I am really pleased you posted I hope you are doing well, you guys all look out for each other and that is so very important.

Have a fantastic holiday Chris and come back focused and ready to take on the next steps. You are doing so well dealing with this in the best way you can.

My very best wishes to you, El and your family

User

Posted 13 Aug 2015 at 21:24

Have great empathy for how you're feeling, Chris!

Felt saddened and dismayed by your post-op results. Am having salvage therapy though, of course, your clinical profile is different from mine.

Do feel free to PM me if you wish at any time.

Have a safe and restful holiday!

Jacey.

User

Posted 13 Aug 2015 at 21:48

Hi Chris,

Having had a few hours to consider your position, and also to look at your previous posts and hopes, and various responses from others, I think I would change the options or advice I have suggested for you now that things are, hmm, interesting, or different.

Whenever any of us starts out on "The Journey" we all have the same range of potential outcomes. Either good or sadly tihs. I am really sorry to read that you did not get the good one mate. When I had my follow up after my op, I determined that IF I was told actually "Dave, it's all gone "pu stit"" ( please read this backwardly) and your time on this earth is limited, I would enjoy whatever time I had left, in whatever way I could and do it to excess. Have you seen Scent of a Woman? If not do so.

Please ignore my suggestions that you should be causes about anything, yanking, tugging, pulling etc. Please just consider enjoying life and fun.

ATB to you and El. You are both so fortunate to have each other, you are blessed. Dealing with any of this parc on your own is hideous. You have each other. Wow, lucky you both.

really seriously, a heartfelt atb to you both

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 13 Aug 2015 at 22:17

Hi Chris,

You certainly have had a rough few months and those results must have been a blow. As others have said you have been so strong so far and I hope you remain as stoic and move onto the next phase of the treatment and hopefully beat this.

Enjoy your holiday and I wish you all the best for the battle ahead.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 25 Aug 2015 at 18:44

Hello all
Purely an info post. Home from hol and was supposed to see Onco tomorrow Weds. But had Oxford Churchill Hosp fone today asking for Choline PET-CT this Thurs. I obviously questioned this arrangement so now scan Thurs and Onco at Southampton next Weds 2nd. Gosh the waiting ( especially thru our holiday ) is killing us.
Good news is the scan is at 3.15pm and won't finish till 6pm , so I've booked the Premier Inn for steak and wine overnight. It actually makes sense as they said to stay away from my 5 yr old son for a good time ( honest Gov'ner).
So all will become clear next Weds for good or bad., and an action plan to follow
Many thanx and hopes and wishes on your journeys
Chris and El x

If life gives you lemons , then make lemonade

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