Please help guide me !

User

Posted 06 May 2017 at 08:42

Hi everyone it's Chris J. A very stressed Chris J

I know a lot of you don't follow my journey but I'm in a very important place with a huge decision to make and I would genuinely be grateful for any comments you have , even if you don't really like me. We all have different Oncos with different ideas and treatment seems to be different all over the country.

So I'm 23 months post op. Feeling lucky in that I'm fit healthy , fully continent , regained erectile function completely ( with meds ). Working again etc. Generally rosy. But the PSA is on the up and won't stop. I was in HT for a year but since last August it has risen to above 3 again. I've had the best scans available which show NOTHING. My Onco has always insisted I'm locally advanced / advanced. I have bladder margins and spread to 5 of 18 lymphs removed during surgery.

The only thing he thinks he can offer is 35 RT which I've rejected twice on the basis he says it won't cure me. It could prevent a painful death though if I get bladder cancer.

I'm SO scared of RT and with my very significant anxiety issues I just don't think I could go through with it. Apparently I must decide in four weeks or the offer will be removed ( exactly 2 yrs post op ).

I know a lot of you have had it with no probs but I'm simply terrified of continence / bowel issues whether they be short or long term. Terrified of becoming impotent again after all the damn effort I've put in. The very real risk of lymphodiema as he will be targeting them as well etc etc.

Or I just stay on Bical HT until that fails in which case I'll go on injectables which I know aren't pleasant and remove libido etc. Seems the RT could deliver the best outcome but then again possibly the worst.

Elaine and I are in a terrible place again. Sorry for long post and many thanks in advance to anyone who replies

User

Posted 08 May 2017 at 18:30

Thanks all so much. Really great advice and some touching kind words which have led me to some tears. There's been a few the last few days. I'm quite scared sadly.
Anyway I'm going to update my original thread with the results of today's phone calls etc , rather than have two threads running.

User

Posted 06 May 2017 at 10:20

Dear Chris, I don't post much, but I read and observe. I felt moved to respond as I could almost see the pain and anguish from your words. However you overcome the anxieties and decide which route to take with bi- polar could I imagine feels like an impossible task.

When I had a few low moments of posting on this site, you gave me encouragement, time,patience and written care, your words encouraged me, and helped me cope with the fears I had, and to keep a positive mindset for David.

You have helped so many people here with your words of encouragement praise and warmth. I suppose what I'd hope for is you just might be able to look in the mirror and tell that guy who looks back at you what is his best path, for himself self, and his lovely Elaine, and family.

I have not had serious mental health illness, I'm aware of it, lived with it, and seen it, I'm also aware of its crippling impact on life, decisions.

I have admired the way you've addressed sexual function, with a strong assertive manner,and I hope you and Elaine are enjoying the fruits of your labours.

Living with those bloody awful anxieties and demons daily with the PCa I can't imagine what it's like..... how can another person understand what's in your head.

You are currently working as a carer I think if my memory serves me right., again it's the ability to care, support others showing through, maybe that Chris bloke could do with some of that in depth love care and kindness you have for others. Is it time you helped him along the road, or do you feel he does not deserve care and help.

I hope you are able to offer that scared Chris the best advice for himself and his family.

Thank you for your help and sensitivity when I needed it.

Leila

User

Posted 06 May 2017 at 11:41

Hi Chris,

I had my appointment with Jamie Thursday night and as i was the last one and with not much to talk about i showed him your bio ( hope you don't mind) so;

Firstly all scans have a flaw he has had patients that have had PSMA scans and nothing has shown up until the PSA has reached 8/9/10

IF he was treating you on the limited information he would be offering;

Waiting for a further rise in PSA and try to get another scan,

IHT he thinks would be a good option possibly 6 months on 6 months off.

Chemo with HT, As David had mentioned chemo without HT i asked about that and he said this is not a recognized treatment path, he then looked at me and said please tell me you have started HT, and that as they say is another storyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I must agree with the others and get a second opinion, what ever you choose we are all here for you.

Don't deny the diagnosis; try to defy the verdict

User

Posted 06 May 2017 at 12:48

Superman Si combined with Jamie the magician, Julie's strap-on and my autism .... you can't fail CJ

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

User

Posted 06 May 2017 at 15:54

Hi Chris,

First of all, I am concerned by your "..even if you don't really like me". I hope nobody has given you that impression because I am sure this is not the case and from what we know through your posting and support you have given members regard for you is high.

It is good to share your dilemma with us and seek views but ultimately it is for you to decide the way forward. As you say, this is a major decision and in your shoes I would go with those who have suggested a second opinion because although even professionals may have different ideas, the best suggestions are likely to come from them provided they have your full histology and scans. A second opinion may well require a further scan(s).

It really goes without saying that RT is only likely to be beneficial if there is a good chance that the target for it has been identified., whereas HT and chemo will attack the cancer cells systemically. What you are looking for is the best way to treat but with potentially minimum side effects and this might involve combinations of treatment and your acceptance that you might have to risk ED.

I very much hope that effective treatment is forthcoming.

Barry

User

Posted 06 May 2017 at 19:49

Hi Chris ,

I am glad Old Barry has referenced your comment re people not liking you because that struck a chord with me as well ! So just for the record we not only like you but we bloody well LUV you X

BFN

Julie X

Ps glad the strap on comment made you smile 😂

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 May 2017 at 22:59

What's not to like ? Why would you think that.

You've fought very hard to get to where you are now.

You were strong to get through it and, once you've got your head round this latest, you'll do it and be strong again.

I agree with Clare on the 4 week deadline. It can't be on the basis of it's safe one day and not the next so it must be that he is pushing you to agree with his option.

If you make a hasty decision you will always wonder if it was the best route for you.

Whatever you decide you know we have your back. You've always known that (or at least you should always have known that !!!)

Best Wishes

Sandra

******

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

User

Posted 08 May 2017 at 10:53

Hi Chris,
I too like you and more importantly respect you for your honesty and caring manner when responding to posts. You have already and continue to help me through a very difficult time with my OH. I totally understand where your head is at though.
I think mostly everything has already been said but after reading all of the responses and reflecting over the weekend here are my thoughts.
1. You must get a 2nd opinion, it is clear that there are different treatment paths open to you and your current Onco doesn't seem able to either explain why his route is the best or indeed what else might be possible. if he could say I am offerring you this treatment and it is the best possible scenario for you because... I might be more inclined to listen but it seems to me he is just reading from an instruction book.
2. Where to go for the 2nd opinion.
Local Private Onco. Pro - easy to get to for appointment. Con - most probably works at the same center as your current Onco and may work from the same instruction book. Pro If he does have other ideas accessing this treatment may be easier.
Jamie. Pro -No idea who he is but seems to be well thought of here and capable of thinking outside the box. Con - even if he has a different plan are you going to be able to get your completely different health authority to carry it out.
Go back to London (those who carried out your scan sorry can't remember hospital) Pro's - you already have an in and they have your history as well as an interest in finding out why your scan did not show anything. Con - it means more trains
3. the 2 year cut-off seems completely arbitrary and more of a threat than anything else. What if your PSA only started rising at 22 months would they then withhold RT. Doesn't seem so from what I have read of other's profiles.
4. Does your GP have any thoughts on this
5. don't be pushed into a treatment you are not signed up for because as you say you are unlikely to follow it through.

I really hope you get this resolved and can get a plan together so that you can move out of the turmoil you currently find yourself in. You have worked so hard at getting your life back on track from where you were at the start of your journey and deserve to be back in that good place very soon.

Julie

User

Posted 08 May 2017 at 22:14

Hi Chris,

Like the others, I wish you well on your decisions. I haven't much experience in your line of treatment but do know how unsettling and scared it can be.

Best of luck

Steven

Show Most Thanked Posts

User

Posted 06 May 2017 at 09:17

Chris, I wish I could help. Knowledged ones will soon give you an opinion.

I know about anxiety too much so I guess how you feel. First of all try to control your emotions. I assume your are under anxiety treatment, aren't you?

Try to calm douwn by thinking of worse cases than yours that are doing well.

Best wishes from the bottom of my heart.

Lola.

User

Posted 06 May 2017 at 10:06

Chris,

I'm sorry mate but I just don't know what to suggest beyond what I posted on your other thread:

Originally Posted by: Online Community Member

I know how important your sexual function is to you. Is Chemo without HT an option? I'm assuming chemo and the associated steroids one has to take don't affect sexual function, this assumption would need checking.

User

Posted 06 May 2017 at 10:20

I have not had serious mental health illness, I'm aware of it, lived with it, and seen it, I'm also aware of its crippling impact on life, decisions.

I have admired the way you've addressed sexual function, with a strong assertive manner,and I hope you and Elaine are enjoying the fruits of your labours.

Living with those bloody awful anxieties and demons daily with the PCa I can't imagine what it's like..... how can another person understand what's in your head.

I hope you are able to offer that scared Chris the best advice for himself and his family.

Thank you for your help and sensitivity when I needed it.

Leila

User

Posted 06 May 2017 at 10:33

You already know my view. It seems your onco is a little behind the times in relation to new treatment approaches & combinations. I can't see the point of RT - I think he is suggesting it because he doesn't know what else to do. I would want to see another onco for a second opinion - Jamie maybe? I would also want to repeat the choline scan from last year just in case the PSMA was flawed.

It is preposterous to suggest that if you don't agree to have RT in the next 4 weeks the option is gone. Dad is 15 years post-op and has been offered salvage RT ... possibly the onco is just trying to manage your mental health by time-limiting you OR another indicator that he is a bit old-fashioned?

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

User

Posted 06 May 2017 at 10:58

I am half way through my 33 salvage RT sessions, not where I wanted to be but that is life. I declined primary RT because I feared the possibility of debilitating side effects, I think techniques have improved and I hope the side effects will not be to bad. There is still a chance of damage to my urethra, but so far so good.

Thinking about the outcome of your scan, I spoke to my oncologist yesterday about what was being targeted, he said in my case just the prostate bed. I was surprised when he said, "we do not know if the cancer is there" I asked if it was an educated guess and his reply was a very educated guess along with knowledge and experience. Radiotherapy while the PSA is low has a good chance of zapping the cancer.

Not sure what the definition of low is.

The process is a little tedious but my staff are very attentive, and meeting other patients in a more dire position puts your own situation into prospective.

Part of my thinking is ,even if the RT does not give a cure it might delay things and there are always new treatments on the horizon, although they nearly always seem to be 3 or 5 years away. I nearly backed out of my op three years ago,now I am more determined to give myself a fighting chance.

To pick up on previous comments what would you tell yourself.

Thanks Chris

User

Posted 06 May 2017 at 11:21

Hi Chris,

I have pondered on your dilemma this morning ( my understanding of radiotherapy, chemo, HT is very limited...my FIL had the lot in 2016 but he was diagnosed at 72 with advanced stage so never had the prostate out).

However I agree with Lynn that a 4 week deadline makes no sense ( why would something be considered sensible at day 28 but 'expired' at day 29?).

I would definitely want a second opinion consult and I would be looking at other peoples experiences with Onco's .. I have no idea who Jamie is but by golly I would now find out! I would be reallocating some of that 'scan fund' to see him privately if that would be an easier option to get your file in his hands and get a recommended viewpoint.

However my first step would be to make sure I had copies on CD of that most recent scan and hard/soft copy of the report that came with it... Do you have the CD and report?

I would certainly be wondering if the scan was flawed or the reviewer of said scan not experienced enough?

Positive thoughts being sent to you Chris

Clare

User

Posted 06 May 2017 at 11:25

Hello Chris,

I think you need to change your oncologist - sorry, but to me the guy (your hospital?) seems to be very much in the "dark ages" (i.e. naughties) re. advances in PCa treatment e.g. multi-modal, drug combinations. Sticking to the one guy now after what he has said cannot do anything than make you more anxious I think.

Flexi

User

Posted 06 May 2017 at 11:41

Hi Chris,

I had my appointment with Jamie Thursday night and as i was the last one and with not much to talk about i showed him your bio ( hope you don't mind) so;

Firstly all scans have a flaw he has had patients that have had PSMA scans and nothing has shown up until the PSA has reached 8/9/10

IF he was treating you on the limited information he would be offering;

Waiting for a further rise in PSA and try to get another scan,

IHT he thinks would be a good option possibly 6 months on 6 months off.

I must agree with the others and get a second opinion, what ever you choose we are all here for you.

Don't deny the diagnosis; try to defy the verdict

User

Posted 06 May 2017 at 12:19

Thanks so much everyone so far for taking time. I really need this stuff to look at and help me reason.
I wouldn't know who to pick as an Onco though even though I think it's a great idea.

User

Posted 06 May 2017 at 12:20

Hi Chris,

I think you would be surprised at how many people actually follow your thread on the old forum you could see how many people had read it.

I wholeheartedly agree with everything that has already been said. Definitely a second opinion is worth a go and seeing Jamie would be top of my list I am not sure how realistic that would be maybe Si could ask if he does private clinics.

I am by no means an expert but am with Lyn ref the chemo route .

Keep your chin . X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 May 2017 at 12:30

Hi Chris,

if a second opinion is the route you want to look at Jamie does a private clinic at The Park hospital Nottingham on a Thursday evening.

More than happy to pick you up from the train station and run you across, you can crash at ours Thursday night we have some cracking real ale pubs here for a good night out. Bet David is booking his ticket http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif good beer

I see Jamie in 5 weeks time.

If you want scans reviewed Dr A [full Doctors name removed by Moderator] ( i know Lyn http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif) absolute diamond geezer.

If you need any details let me know

Edited by moderator 06 May 2017 at 12:34 | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict

User

Posted 06 May 2017 at 12:48

Superman Si combined with Jamie the magician, Julie's strap-on and my autism .... you can't fail CJ

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

User

Posted 06 May 2017 at 13:01

Haha Julie's strap-on. Legend.
Thanks Si very much. I'm away at the moment chilling ( painting ). On Monday I'll get going again and set things in motion. I don't think I'll take the HT. Will be safe for a while. And will check local private hospitals for second opinion. I think London and back twice put me off trains a bit lol.
Thanks again everyone. I thought you were all going to say have the flipping RT you pussy.
Glad you all thinking outside the ball park. Feel quite fragile again and I can crash very quickly sometimes :-(

User

Posted 06 May 2017 at 14:52

Chris

I'd do what Lyn says! It just seems to make sense to get a second opinion. You don't need to go private to get one, but I suppose it may be quicker. I can't remember if you're still receiving support for your mental health issues, but maybe that might help you too.

Ulsterman

User

Posted 06 May 2017 at 15:54

Hi Chris,

I very much hope that effective treatment is forthcoming.

Barry

User

Posted 06 May 2017 at 19:49

Hi Chris ,

I am glad Old Barry has referenced your comment re people not liking you because that struck a chord with me as well ! So just for the record we not only like you but we bloody well LUV you X

BFN

Julie X

Ps glad the strap on comment made you smile 😂

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 May 2017 at 19:55

I'm away at the moment but will message you tomorrow.

Bazza

User

Posted 06 May 2017 at 22:41

Chris you were supportive to me when my dad was diagnosed last year, Always commenting on my posts for which I am very greatful for, for what it's worth to u I like you !!,lol I have followed your journey since joining the forum, I don't have the knowledge to offer advice unfortunately, But by the looks of the comments above you have been given some food for thought,

Take care
Viv
X

The only time you should look back is to see how far you have come

User

Posted 06 May 2017 at 22:59

What's not to like ? Why would you think that.

You've fought very hard to get to where you are now.

You were strong to get through it and, once you've got your head round this latest, you'll do it and be strong again.

I agree with Clare on the 4 week deadline. It can't be on the basis of it's safe one day and not the next so it must be that he is pushing you to agree with his option.

If you make a hasty decision you will always wonder if it was the best route for you.

Whatever you decide you know we have your back. You've always known that (or at least you should always have known that !!!)

Best Wishes

Sandra

******

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

User

Posted 07 May 2017 at 23:03

Hi Chris,

Have you read this

http://www.birminghamprostateclinic.co.uk/prostate/treatments/oligometastatic-prostate-cancer/

do you think it describes your circumstances? I am just wondering as sometimes having a name for what you are dealing with helps you to consruct your argument for the next steps plan...which to me is still your original plan of needing another good diagnostic scan...

Hope you had a good weekend.

With tons of respect

Clare

User

Posted 08 May 2017 at 00:37

Hi Chris

Thinking over this today. Revisited your profile.

Barry spot on. What is RT targeting ,?

Lyn.. can't add much more and agree

.1.

I would certainly get all your files digitally if you haven't already.

2. You deserve a 2nd professional opinion to review everything. ..

.. needs a new pair of eyes.

You are extremely resilient. . You would not have gotten this far or bother to post on here.

Don't beat yourself up..

Take care

Gordon

User

Posted 08 May 2017 at 01:11

Claret, Chris's onco was already of the opinion that Chris Is oligometastatic - see his post of January this year. The fact that the PSMA has come back clear rather refutes this; extensive micro mets may be more likely now

Edited by member 08 May 2017 at 01:16 | Reason: Not specified

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

User

Posted 08 May 2017 at 07:17

Thank you for clarifying Lynn

User

Posted 08 May 2017 at 10:53

Julie

User

Posted 08 May 2017 at 18:30

User

Posted 08 May 2017 at 22:14

Hi Chris,

Like the others, I wish you well on your decisions. I haven't much experience in your line of treatment but do know how unsettling and scared it can be.

Best of luck

Steven

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