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Chris J's Journey

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User

Posted 17 Sep 2015 at 13:49

Hi Chris,

I would suggest a second opinion- but in a different (geographical) area.

My onco recently referred me to another area, without any prompting from me, and it does open possibilities, different approaches to treatment and perhaps different funding structures.

Dave

Not "Why Me?" but "Why Not Me"?

User

Posted 17 Sep 2015 at 14:22

Thank-you Dave -- that's exactly what El and I have been thinking. Although he will do his very best for me im sure , at the end of the day a hospital is a business and they have their budgets and treatment limits. I trust him and all the care I have had so far , but he wasn't offering anything other than pure " salvage " with no expected outlook for the future . He wouldn't commit to any success. He actually stated " there is no evidence that having this therapy will be better than having no therapy ( in life terms ) -- but it is advisable ". Life extension was really his only gambit . Which is ok as long as quality of life isn't too disrupted in my case .
Thanks Chris

Edited by member 17 Sep 2015 at 14:23 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 17 Sep 2015 at 19:32

Chris wish I was knowledgeable enough to know what to say.

Thinking of you both,

Love Trish xx

User

Posted 17 Sep 2015 at 19:40

Chris

sorry I have also been off the air a bit .. well in the air actually but that is another story.

A second opinion is always an option, it does not always change the advice given but it may just offer an alternative approach.

When PSA is being generated something is doing it,that could be in the area immediately around the prostate bed or it could be something that has moved out but not yet formed into anything visible on a scan and not even viable at this stage as a true progression. These are sometimes referred to as micro mets. That may not be as bad as it sounds as any of these still have to find a way to actually survive and then invade another area like the lymph nodes or bones or any soft tissue and that can take a while. Salvage treatment such as adjuvant RT or HT aims to kick their little asses before they get clever. I have also recently heard of some Men in USA having adjuvant chemo post RP but I am not sure if that is considered here in UK.

The literal translation of adjuvant is "to aid" and I believe that this treatment is usually given fairly soon after the thing it is meant to be aiding.

I am hoping one of the much more knowledgeabe and technical experts can assist here.

I think having a clear explanation of what can be done, what to expect and just how this might affect you physically will be something you need to get done quickly whilst you are so on top of things mentally. I am sure your GP and BP specialists will give you any help you need to get things moving.

I wish you all the very best

User

Posted 17 Sep 2015 at 20:17

Hi Chris

The Choline PET/CT scan has its limitations as you know at lower PSA levels it doesn't always take up enough Choline to show up on a scan, so maybe it was performed to early, so are they willing to repeat the scan at a later stage if the PSA continues to rise.

I underwent a PET/CT scan in Munich utilising 68Ga-PSMA which is able to pick up spread at a lower PSA, but this was privately funded by me as it is not available under the NHS. The procedure is different in that the PSMA is injected and also contrast under pressure whilst in the scanner as it has a very short life span, but the clarity of the scans are amazing.

All the best

Roy

User

Posted 17 Sep 2015 at 21:59

How soon is your next PSA? My worry about a second opinion is that you may find other hospitals would not be prepared to offer you the RT - with multiple lymph nodes affected and at least one bone met, they may not feel that RT is going to be a good route to go. You apparently have a very determined cancer - it isn't behaving like typical adeno but nor does it act like small cell or mucinous which must be good news. The next PSA will be very telling. Hopefully it will have dropped like a stone with the bicalutimide.

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

User

Posted 18 Sep 2015 at 07:24

Hi Lyn
Yes next PSA apparently wont be for 3 months before the RT starts ( or deciding if the RT starts ). I pick up tablets and start them Monday and my GP will measure it for me . Surprisingly it was ME again who requested a PSA on Wednesday . They weren't going to do it. Interesting comment you made about another hospital maybe not bothering to offer RT . As I spoke to you before , I'm not on a death-wish but at the same time don't want to feel ill and have side-effects if its not going to work. My doc gets that and my "wider" health picture. You are bang on the money ( again ) as he stated I was a strange case and that they couldn't understand how it had got so far despite all the tests , biopsies , scans !!
Thanks
Chris

If life gives you lemons , then make lemonade

User

Posted 18 Sep 2015 at 12:53

Hi Chris

Just a note to wish you all the best with your forthcoming treatment. I hope it all works out for you and side effects are kept to an absolute minimum.

Kind regards.

Edited by member 18 Sep 2015 at 12:54 | Reason: Not specified

User

Posted 18 Sep 2015 at 20:31

Hi chris,

Frustrating for you. Hope you soon find out what's causing your psa rise so it can be managed appropriately. In the meantime I hope the bicalutamide works for you.

Lesley

User

Posted 18 Sep 2015 at 21:53

Chris

I hope the tablets start to work quickly for you, on a good note you have several months to get used to the taste of flat scrumpy Jack 😉

Steve is raising his glass of J20 to you! (this weeks' non alcoholic drink choice)

All the best, as ever

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 19 Sep 2015 at 08:35

Hi Chris

I've been on bicalutamide for 5 weeks now and it's lowered my PSA from 9.2 to 1.3 so hope you see a big reduction.

Roy

Edited by member 19 Sep 2015 at 08:46 | Reason: Not specified

User

Posted 19 Sep 2015 at 09:23

Thanks for that great input Roy !
I've spoken at length with my retired head-of-practice GP and she got me a long phonecall with my current GP . He presently works 3 days a week palliative care now and only 2 days in the practice . As such , he knows all the consultants in the area and their experience and the finances of this area / services available etc etc. He has assured me I am in the best hands and that I will now work alongside him and the consultant and Psychiatrist together to try to keep me balanced and on the best path.
So Bicalutamide and Tamoxifen start Monday and my GP will measure outcome
Thanks Chris

If life gives you lemons , then make lemonade

User

Posted 19 Sep 2015 at 09:57

Chris

I am so pleased that you have got some more professional support, sometmes who you know is an advantage over what you know. At least now you can feel confident that the specialists looking after you are recognised locally as being the best.

All my best wishes

User

Posted 19 Sep 2015 at 21:49

Glad something has been sorted for you Chris.
It should take some of the worry off your shoulders

All the best Sandra

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

User

Posted 20 Sep 2015 at 07:37

Hi Chris,

Pleased that someone is listening and helping out. It can be very reassuring when someone takes time to explain things to you.

Hope everything goes well with the new tablets.

Keep fighting.

Steve

User

Posted 05 Oct 2015 at 10:04

Hi Everyone
Im really really struggling again today with this all . In fact for a good few weeks now. Most of you that have followed this post know what I am like with my mental issues. Ever since I saw the Onco ive felt terribly down . The LRP was too late and all that is offered is the HT / RT . I don't want to be a baby but I just feel so " cheated " . I was dragged kicking to the operation but slowly but surely things were improving and I felt like life could go on if you know what I mean .
It took me over a week to start the HT , and now ive been on it 9 days I GENUINELY feel awful already. Ive checked this post and when I was put on it ( Bicalutamide 150mg ) before it wiped me out in days. So ive not taken it for 2 nights. Yes I know im bl****y stupid . And although I had to sign the dotted line on the day , I desperately feel I don't want to go ahead with RT in the New Year . I can barely get through a winter as it is with dark thoughts and chronic fatigue . How will I manage it with HT in me , and 33 visits to hospital during the coldest darkest 2 months , to irradiate myself and risk further short term and long term side effects.
Im sorry if you think im whinging but I just cant find the fight like loads of you on here have , and some of you have been through loads more trouble than me . I just feel like giving up instead of fighting it . I don't want " life " to feel like this :-((

If life gives you lemons , then make lemonade

User

Posted 05 Oct 2015 at 13:08

Originally Posted by: Online Community Member

Hi Chris,

Pleased that someone is listening and helping out. It can be very reassuring when someone takes time to explain things to you.

Hope everything goes well with the new tablets.

Keep fighting.

Steve

Hi Chris

Take note of what Steve said in the last line of his post above

We're here to hold your arms up

All the best, Arthur

User

Posted 05 Oct 2015 at 13:19

Hey Chris

I can only repeat what Arthur has said.
We're all here to help you see this through and truly want you to keep fighting.

My Very Best Wishes,
Cobbles

User

Posted 05 Oct 2015 at 13:36

So sorry to hear that you are struggling Chris!

PM me if you need a chat!

User

Posted 05 Oct 2015 at 14:28

Dear Chris

This may not help now, but once you get started on the treatment it may not be as bad as you fear.

Not everyone has all the side effects of HT, some people have some, others have very few.

This tiredness I think is normal at the start of these drugs, and yes, it has been a blow that the RP did not work.

Our situation was slightly similar in that my OHs op was cancelled on the operating table as the node spread was there discovered. A real blow in that they did not tell us this til 36 hours later as the surgeon had gone home and everyone else was acting dumb!

So we know how low you are feeling. But there is a plan b, and you have started upon it.

Please keep with it, the days to come maybe dark, but better to spend the winter this way, than the summer when instead you could be out and about.

Once RT starts the time will pass quickly.

All the best

Alison

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