How to stop feeling devastated?

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Posted 31 Mar 2015 at 00:28

Steph, ramble away but then use some of your therapist skills to talk yourself back down. In the calm light of a few weeks or months down the line, you will realise that this initial panic and over-interpreting every tiny thing was just a coping strategy. Graham looks older becasue he is older, he is probably lethargic because he has been getting up for all those night time wees, there are all sorts of rational explanations for the things you are now inspecting in the tiniest details. It is extremely unlikely that any of these things are to do with his cancer; as far as you know, that is still a tiny (and I do mean tiny) cluster of cells which is in its earliest stage of differentiation and least aggressive form. The fact is that many members here diagnosed at the very late stages have absolutely no symptoms so it is rare for someone in Graham's situation to have any. Try to stop worrying about the things that are probably not applicable and instead set your mind to the things that you can and will have to deal with.

I worry that you are imagining the treatment as much more debilitating than it is. Comments about 'after four weeks you might be able to do some online stuff' for example. Some facts about after treatment for you to focus on:
- if he has open surgery, his sick note might be for 8-12 weeks but it depends on what kind of work he does. He is likey to be out of hospital in 3 - 4 days and they will expect him to be up and walking round the day after the op. My husband took it easy to begin with but was dealing with work emails & calls from about week 4 and back at work full time in week 12 (delayed only because he had to wait for his car insurer to agree to him driving)
- if he has robotic or keyhole surgery, he may only be in hospital for one night and most men are back at work within 6 weeks
- if he has radiotherapy, he will probably be able to continue as normal throughout, just rearranging his day slightly to allow for the appointments and maybe for an afternoon nap. My husband had his RT every morning on his way to work, worked all day, went to the gym on the way home, continued with his rugby and with our regular dance dates! He did a couple of times come home early for a nap or a quick kip at his desk.
- not sure why Rob the nurse has already discounted brachytherapy for you but if it does turn out to be an option, is for most men even less intrusive that the other options.
- it is possible that once all the scores are in, Graham decides (with your support) to go for active surveillance at least to begin with. This would give him time to get his head round the diagnosis and begin to assess how he feels about the lifestyle changes and possible side effects of wheichever options are available to him - there will probably be no need to rush into a decision. The best bit of advice we had from our urologist was to go away for a nice holiday, maybe enjoy the summer and then deal with it in the autumn. John didn't take this advice but afterwards we both wished he had.

Generally speaking, with your ME, I wouldn't worry too much about how you are going to look after him. He will be pretty self-sufficient fairly quickly.

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

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Posted 31 Mar 2015 at 02:01

Hi Steph it is natural to be concerned. However Lyn is right things will be fine. My husband is 4 weeks today post an open radical prostatectomy. He stayed in hospital for only 3 nights. Has been driving for a week and has very, very mild incontinence only. The only problem being a staple that did not heal so well and needs to dressed every day to facilitate it healing from the inside. His recovery is excellent. Not really noticing tiredness but he is retired and can take life a bit easier if he likes. Everyone is different of course but I was expecting a longer recovery time and have been pleasantly surprised. Cheers Georgina

Edited by member 31 Mar 2015 at 02:05 | Reason: Not specified

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Posted 31 Mar 2015 at 07:34

Chris,
Thank you. It feels like I'm overworking saying thank you, but I really mean it, thank you. I was lying in bed, awake before dawn, listening to Graham snoring gently and breathing and stopping breathing and stirring from the sleep apnea, and I felt so saddened by the fact that it used to annoy me because it stopped me getting back to sleep once it had woken me up, and now all I want to hear in the night is him breathing beside me.

I was trying to rein-in my galloping imagination; of what it will be like when ... of what it will be like when ... all the images crowding in and taunting me like demons. I gave up hanging on his breathing and came to the computer, to the only community that gets where I am at, where he is at, and found that I'm still heard - you took up the baton in the line of people who are listening, feeling, wondering what to say, running out of words, and yet again, I was reached by another hand in the chain. Thank you.

I was lying in bed praying to God, who seems so capricious, so inactive in His marking the sparrow's fall, and pleading yet again to spare Graham, and selfishly, me, the worst, and then all I could think of was all the children who pray for rescue, all the voices in the world crying out to Him for comfort and reassurance, and I thought, I'm just another voice in the wilderness. Why should I be answered?

'God bless you in your struggle' is not a phrase you hear - I hear - very often, but in that moment of darkness I heard it from an unseen friend who had answered my prayer before it was asked. So thank you.

And then I read your profile, and yet again the vice around my heart slackened off because I was reminded that men and women can live with prostate cancer, men like you and all the other kind, courageous, fragile, brave and tender humans, men and women, on this site. So thank you. And God bless you in your living.

Steph.

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Posted 31 Mar 2015 at 08:21

First of all, I did not see your replies until now, Lynn and Georgina - they came after Chris's when I opened the post and it opened on the first page; yours are on the second page. I’ve just seen them after his and, having released some of the terror and anguish, I’ve calmed down sufficiently to be able to absorb what you are both saying.

You’re both up in the night – especially you, Georgina … 2 in the morning?! (Or is that Aussie time translated to British summer Time, I wonder?) And you both took time and energy to talk to me – God, how I am grateful. All these hands, this chain of a lifeline.

But I can hear you now. Funny, isn’t it, when you find what and who you need just at the right time? You’re absolutely right, Lynne, about using the therapist’s techniques. I do, all the time, but I guess it really is the darkest hour just before dawn! It does take enormous energy to control the mind as I am sure you know only too well, so it’s in those times I am at my most vulnerable that the thoughts become too unruly to manage. But in this space where I can now read and absorb your reply, your pep-talk is so re-orientating. You’re right, you’re right, you’re right, and I can hear you.

Rob, as far as I can recall, said that brachytherapy was only recommended for those where the cancer is confined to the prostate and that the guy who did it was very picky about his customers – must be concerned with his scores on the doors or something – it’s hard to recall accurately, but whatever he said it was clear that he thought it was an unlikely option for Gray. Maybe he saw something the GP wrote, who knows?

But straight after Chris has released the vice around my heart I am able to absorb the factual, no-nonsense information that you wrote and Georgina supported. I’m back to being much more calm; the sick terror has slid beneath the waves again. It’s a bit like living with Jaws!

I’ve been looking back at all the replies I’ve had so far and I’m quite overwhelmed – I really mean overwhelmed. Please forgive me, all of you lovely people who have answered me, for not having answered or acknowledged you individually – I can’t get my head round the body of support or information, it’s still a bit of a blur and it’s taking all the energy I have to keep my head above the water, but each of you has enabled me to stay afloat; a human life ring. But I keep dipping in to all the wisdom and experience, and bit by bit it’s getting through. He’s alive, it’s treatable, it’s containable – my new mantra. Thank you, each one, for forging me this life ring when I am drowning.

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Posted 31 Mar 2015 at 09:15

The builder's house is usually the one that's falling down, the plumber's house leaks and the cobblers kids go to school with holes in the soles of their shoes. !

A therapist has it hardest of all I expect, since the other problems above are probably caused by being too busy to do the repairs.
You, on the other hand, are having midnight conversations with yourself and writing the horror story of the century!!

No good telling you to calm down. That's like telling somebody with depression to "snap out of it", not helpful.

The "what ifs" and the "maybes" are going to plague you until you have a definitive answer regarding treatment.

I don't know why your Rob said Brachytherapy wasn't an option but we were told EXACTLY the same thing by our nurse specialist. She also told us that nerve sparing wasn't an option if we chose an op because the cancer had impinged on the nerves.
None of that was exactly what had been decided. It was her interpretation of the results she was seeing on her screen.

By the time John's active surveillance had to end because the PSA had crept up a bit, we were also told by the surgical specialist that Brachytherapy wasn't an option and very sniffily told us we should have taken that option when it had been offered to us the previous year.

We opted to see the radiologist again who expressed surprise at a) what the nurse specialist had told us because the cancer wasn't affecting the seminal nerves and b) she thought John was eminently suitable for Brachy although they didn't do it at our local hospital. She did however refer us on and that new specialist thought John was ideal for it and that was at 73 with PSA of 6.7 and Gleason 3+4.
So, even the surgical consultant was incorrect.

Your own health is dragging you down too remember. Under normal circumstances, if you had a bad day, you'd rest up, and get back to life feeling a bit better.
Not happening because you are expending energy on worrying about Graham and his treatment and the future (or in your darkest hours - the lack of it!!). Seeing things that ARE there, like Grahams fatigue and looking older.
Without this cancer diagnosis hanging over you that situation would still have happened it's just that you would have been more pragmatic about it and put it down to the stress you had already been under, the disturbed nights and the general aging process.

Take a step back. Become a therapist again. How would you treat a patient who presented as you are feeling. What would you tell them.
When those dark thoughts appear again, tell yourself you WILL cope, no matter what.
But honestly, like a lot of members on here, I think you are overthinking it all. Yes it's frightening, but it's definitely doable.

Big breath in, big breath out and tell yourself, this isn't going to beat you.
YOU are going to be the strong one in this if Graham is wobbly when it comes to his health.
YOU are going to be the one to be matter of fact about the treatments and the possible results such as initial incontinence etc.

You will do it, because you have no choice, but you are not much good to Graham if you put yourself in hospital because you've frightened yourself half to death.

Keep posting. We'll keep listening. Keep reading and researching if it helps but do be careful of anecdotal stories on the general web pages.
Especially about magic treatments etc.

Best Wishes
Sandra

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

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Posted 31 Mar 2015 at 18:52

Hi,just a thought on practical matters. If Graham needs help after the op Red Cross offer volunteers who may assist,failing that you may qualify for District nurses or paid carers. Macmillan nurses have online sites as do Samaritans. Sending you love,El .

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Posted 31 Mar 2015 at 23:32

Steph, It is what we are here for, to help others. I know that I don't put so much in writing as most of the others do, in fact I reply a lot less that I once did, mainly because I don't know the newer treatments, so I leave that up to others, like Lyn, but I still look on here daily, sometimes several times, so I was more than surprised to see your thanks for those few words, that obviously caught the right nerve. I know what you mean about listening to Graham snoring and breathing as it brought back memories of when my wife had her chemo and I used to spend time at the bedroom door and watch her chest for signs of breathing for 3 days after each chemo session. "Why should I be answered", well why not, I'm sure HE has helped me to cope, he can give you more time with Graham, yes we can live with PCa, fact is more men die with it than of it, and saying that George H is about 8 months ahead of me, he has just about reached 10 years since dx.

So, God bless you in your struggle, look forward to Graham's treatment with hope, and keep on posting.

Blessings Chris. xxxx

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Posted 02 Apr 2015 at 11:13

Hi, Sandra – thanks for posting. As I recall, Rob said brachytherapy was not an option because the guy performing it was very choosy about who he operates on – Gleason 6 and under, I think, if I am recollecting correctly. Will have that discussion if and when – I’m not one for taking what they say quite at face value, once I’m up and running! But from what you say, this diagnosis and treatment is as much of an art as it is a science; there is no firm way or route through treatment, rather than a meld of opinions, which makes it a bit like shadow-boxing. Especially if you don’t have the results of the tests – ours are due in today. So we will be genned-up and ready to do battle, with the knowledge gathered on here especially. You and your OH sound like you’ve been on a manic roller coaster.

You’re right about being more phlegmatic about the changes if the diagnosis wasn’t hanging over our heads – I can see that. And in my less anxious hours I can control the wayward thoughts. But yep – “physician heal thyself” doesn’t cut it when the thoughts are in free-fall. It puts me in mind of a bolting horse. The way to stop it if possible is for another rider to come alongside and help slow it down – that’s what I find on here. The kindness and the patient “hang on, wait a minute, just look at this, just think of that” cuts through the mad flight and offers a bit of sanity which can’t be done when one is panicking and terrified. So after being checked in the mad long dash I can take in the words of sanity and wisdom and I do find they are building up a reservoir in strength. Big slow breaths, breathe ... actually, I guess the trick is to keep on breathing at all! But oh, thank you thank you all.

And you’re right – I am overwhelmed; I can’t be my own therapist at the moment because I’m in territory that is new and terrifying. Slowly I am getting a handle, but I’ve got to say, without the help and support of all you fabulous folk on here I would not have coped as well as I am doing. As the terror subsides I can grab hold of my thoughts again, but I will keep on posting and seeking support; I need it!

Thanks El for the tip. If it comes to it I’ll have a clue where to get some support. And thanks for the love – I am focusing on my heart to receive it.

And Chris, of course, for the reminder!

The results go before the danglies’ team today and Rob is going to call us. Don’t know if he’ll give the results over the phone, but at least things are still moving. I suddenly need a wee!

Love, Light and Power to all. x

User

Posted 02 Apr 2015 at 12:07

Hi Steph,

Fingers crossed and everything else for good results today. Hope they can at least give you an indication of how things are going, just so you can have a more relaxed Easter.

I'm preying that all turns out ok for you and Graham.

Steve x

User

Posted 03 Apr 2015 at 07:08

Hi, all. Telephone call with results: no bone involvement or spread on either scan. It appears that the cancer is confined to the capsule, but the protocol is that it goes to a second team in Preston for their opinion. The cancer may have reached the outer margin of the prostate but appears no to have breached it. If the margin is too close to call then they may urge radiotherapy treatment. If not, all options are open, but the aim is curative not containment.

Despite the prospect of treatment and all that that entails and engenders the difference this diagnosis has made to me is stark. I realised at the time that what I was carrying was grief; continuous, unyielding grief. It was as though somebody had already died and the pain was as intractable and un-amenable to reason as, say, diabetes. No matter how I confronted it, this terrible sorrow simply sat in my chest and guts like a vice. With the diagnosis from the unflappable Rob, it just went; gone. Melted away.

As a person I've been through profoundly traumatic events and felt this same vice-like sorrow. But it was always as a result of an event or events. I've never experienced such intractable, unrelenting grief for something that has not yet happened, nor may well not happen, and it has astonished me with how floored I felt. As a therapist I am committed to working out what exactly is the nature of this terrible, crushing feeling, because in doing so I become a better human, a better therapist.

All that said, what I do know is that kind words, words of reason, strength and knowledge - words showing the different ways people can send love, comfort and company - make it possible to just keep on moving through the day.

Last night I didn't lie there listening to his breathing; I slept. So for now, in this place where I am bruised but not broken, I just want to say again, thank you to each and every heart in the chain of my lifeline.

User

Posted 03 Apr 2015 at 07:15

Steve, empty your inbox!

User

Posted 03 Apr 2015 at 09:09

"As a therapist I am committed to working out what exactly is the nature of this terrible, crushing feeling, because in doing so I become a better human, a better therapist."

As a therapist you have a need and desire to help others, to take away their grief and pain as much as you can, bearing in mind that you are not inside that person's skin and therefore their grief or distress is secondhand to you, no matter how much you want to help them.

Well, you now have first hand experience and that will indeed make you a more caring and understanding person.
It can't do anything but, since you will now put yourself in the place of a number of your clients suffering as you have suffered.

I am so pleased that the results were curative. That is a magnificent word and all of us on here will be pleased for you both.

Whatever treatment path you travel, there will be some "knock on" effect, mild or serious, temporary or permanent.

You've been through hell and back in your imagination, but whatever those "knock on" effects are, they are never going to seem as bad as you worried they might be.

Best wishes to you both.
Enjoy your Easter with renewed faith and (if it were at all possible - which judging from your posts about him is unlikely) with a greater love for Graham than you've ever had.

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

User

Posted 03 Apr 2015 at 09:42

Hi Steph,

Good news from results.

Inbox a bit empty now. Not too much space.

Working at the moment.

Steve x

User

Posted 03 Apr 2015 at 09:53

That's really good news Steph
Yes there is a lot to get through now but the road ahead is a little less rocky for you both. You will always have the so-called "squeaky bum" affect at each PSA result over the next years, after treatment, as we all do and that will remind you of this experience and won't be pleasant. We all get it, cure or no cure as the results are usually meaningful in terms of successful treatment or a change to a new treatment or none at all.

I know what you mean about grief, I had the same type of experience when John was diagnosed, I felt intense grief for the loss of my husband, our intimate life, for my children (adults, but it's your dad right?) and our shared future and yet four years on he is still here, against all the odds. If someone had told me that at the time that we would have four years or more I would have jumped up and down and kissed them!

It does look like you will not have to know the reality of those feelings for a good time yet and with luck, your other half will live a normal lifespan. You may even find that your life together is enhanced in many ways as the realisation of what might have been dawns for you both. I mentioned before (I think) that despite my own husband's bleak future the last four years have been bliss from the point of view of love and partnership. We do strongly recognise our love for each other and despite the illness, we are grateful for that at least.

Time to now think carefully about your options, read, take advice and make the most of the time before the operation or RT, have a holiday if possible, get close and personal with each other and enjoy. It really is the best advice anyone can give you.

Delighted to read your post this morning,

Lots of love
Allison

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Posted 03 Apr 2015 at 10:13

Good news indeed, Steph. Now the difficult thinking of what option to go for! But enjoy the moment before getting your heads around the differing treatment paths. The biggest hurdle has been jumped. One change you will understand is that time will have become more precious. It has always felt so to me that after diagnosis you focus on life rather than the alternative and suddenly living that life purposefully and with passion becomes the norm. For me three years have passed by in this enhanced state of living. Enjoy this feeling.

Edited by member 03 Apr 2015 at 10:14 | Reason: Not specified

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Posted 03 Apr 2015 at 11:03

What a pleasure to read such lovely words. And humbling to read of the courage and grace faced on your own journeys. It’s a neat reminder that there will always be the ‘squeaky bum’ effect, but for now we are able to just let the majority of the tension go.

Allison, you are so in my thoughts – thank you for your mirroring so much of what the turmoil represented; you are so spot-on. And so are you Yorkhull; so thank you for your generosity. And Sandra, you’re right when you say my first-hand experience makes me a more empathic person – that’s why I’m a therapist. I’ve had more trauma and sorrow in my lifetime than some people's put together. What this has done for me as a therapist is to remind me that it is simply the presence of another that can make the difference sometimes, when the pain is too deep to even approach. In my profession, when I have so many ways and means of enabling people to claim back their true selves, this has been a wonderful and terrible reminder that sometimes, little is all.

That Gray and I have to endure and overcome perhaps awful circumstances is nothing new to us – but that we will have to do so is a gift! A little bit of rain in the desert of my faith.

User

Posted 03 Apr 2015 at 11:03

Hi Steph,

I'm pleased the scan results have shown no further cause for concern and the PCa appears to be localised.
Your worst fears have been allayed ....that's good news!...

Now you will need to wait until the verdict from the second team is in before you can decide on what treatment path is best suited for you both.
Whatever route you choose to take there will be peaks and troughs along the way, but I wish you both well on your journey.

Luther

User

Posted 03 Apr 2015 at 13:09

Good news Steph,

Now comes the choices on Grahams treatment path , you have time and will be in a better place mentally to take in the different options there is a lot to get your head round but there is always some one here that can give advice on the different treatment paths.

When anyone hears the big C word it is very frightening , I am so glad that you have found the forum and with Graham's grading have now realised that there is hope in fact being in the cure camp is indeed news for celebration.

As some others have said he may even opt for AS and other than regular psa checks (squeeky bum time ) this may be an option.

Congratulations.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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Posted 03 Apr 2015 at 17:48

Thanks, Luther and Julie. When we get the confirmation (P. G.), we'll be prepared for the next step. Gray is looking at the pamphlet - or has said he will (once the fright drains - he has hidden it from himself, but its affected him for sure). Apparently, AF is not an option, so it will be some procedure or other, but will keep you posted. Meanwhile the shock really is something to deal with, quite physical as well as mental. I feel like a wrung-out rag. Read your profiles - will be holding you up in my heart. Hope you don't think that's slushy or insulting.

Steph. x

User

Posted 03 Apr 2015 at 20:30

Dear Steph

I really can understand that feeling of grief that you describe. I have never known how to describe it before...but that sums it up perfectly.

I am pleased to read that your OH's results are positive in terms of the chance of a cure, that should give you real hope.

All the best

Alison x

User

Posted 03 Apr 2015 at 21:22

Alison - sending you love. x

User

Posted 04 Apr 2015 at 21:30

Delighted to read your husbands results, you have cause for hope so grab it quick !

Fiona. x

User

Posted 05 Apr 2015 at 00:06

You are a doll, fiona, thank you. x

User

Posted 05 Apr 2015 at 23:11

I will get back to you Stephanie.

Trying to do better than Mat 18 v20 !

Blessings,
Chris.

PS. Just seen your post on Steve's, try CAB first for advice for DLA or similar.

Edited by member 05 Apr 2015 at 23:16 | Reason: Not specified

User

Posted 06 Apr 2015 at 07:11

Well said Chris

Also I think what we're all trying to do here is 2 Corinthians 1:4

Arthur

User

Posted 06 Apr 2015 at 07:53

thanks, chris and Arthur - might try to get CAB appointment, if there is still a CAB around!

User

Posted 06 Apr 2015 at 10:46

I am just now able to read - and take-in and understand - all the replies to me when I was in such a blind panic, and I want to try and answer each of you who have been not only kind but have been a lamp to my feet in that dark time. I'm hoping that this is not a lull in the panic, but that Gray and I will simply deal with whatever it is that comes and I won't feel as though I've fallen off a cliff, but I keep reading and re-reading the posts to me and just want to respond - this may take some time!

Chris - we'll see how similar are our stories but so far, parallel stuff. It gives me a measure of relief to see that you are doing so well, and hope too, so thank you for taking the time to give me a leg-up.

User

Posted 06 Apr 2015 at 11:04

Yorkhull,

thanks for your understanding and compassion. I re-read your post yet again the other day and ordered the toolkit. Gray has read the booklet now and so I don't feel as though I'm pushing him against his will to know, or taking complete control - or bl*** well losing it from terror if I know more, so we're going to go into the next meeting with at least a degree of understanding. The scans so far look positive, but I'm trying to stay cool because they are going for a second opinion from a team in another hospital, and the nurse who gave us the results kind of changed tack half way through the phone call from "it has not spread" to "it looks like it might have reached the outer margin, so they might want to opt for radiotherapy as opposed to anything else". I wish he had been sure of what he was saying before he said it.

I love your balanced view of things, and the diet stuff as well. We are considering the diet changes, but Gray just loves cheese, so at the moment we're aiming to reduce it drastically in the short-term. Wasn't it Groucho who said that giving up smoking won'[t make him live longer, it would just feel like it? Maybe as time goes on we'll manage more Paleo with less red meat.

And I love your positivity; on this site it has such authenticity. From all of the people, fighters and family, it is quite difficult to describe what it means to hear reasoned voices of sanity, with fact and experience to back-up what your saying. Thanks, Paul.

User

Posted 06 Apr 2015 at 11:07

Arthur, verses 5 and 6 are apt too. [and up to end of verse 11 ]

Stephanie, the first dx throws us all into a panic, which is why having this site helps us all, it helped me when I had nowhere else to find info from, Cancer UK put the phone down on me because we were living in France, now you have to wait to see what the medics are going to do next, when you go to next appointment take a notebook and pen to remember what is said as it could be overwhelming, then take note of what PSA, Gleason and any other tests results are.

God bless,

Chris xxxx

User

Posted 07 Apr 2015 at 22:27

Thanks, Chris. You're not kidding - I must have sounded demented! It must have been a nightmare for you, in France. Could you not get treatment there? Would it be not as good or better than the UK? But how frightening, blimey.

I will take a notebook and pen. Waiting for the toolkit - hope it arrives before the meeting, but I'm already lining up a few questions after reading some profiles on here. Don't feel able to offer any support to others right now because I'm still a bit disorientated and I feel it would be a bit disingenuous, when I'm still wooley.

God bless you and your OH too.

Steph. xx

User

Posted 07 Apr 2015 at 23:11

Stephanie,
Treatment in France was brilliant, and you get all your results before the doctor as it is your responsibility to take them to him, [I still have a CD of my scans], (I actually feel that if we had have had treatment here at that time, then neither of us would still be here! )
NO, the problem there was the language barrier and trying to find out what should happen next as I found I was being told what to have done rather than making my decision, like in UK you make your decision as to what treatment you have with the medics guidance.

Good for you to have some questions lined up, and yes you are, in a way, giving support to others purely by posting on here and letting us all know how you are getting on, it could help newbys.

When is your next appointment?

God Bless you and Graham.

PS. I like the Labrador avatar.

Edited by member 07 Apr 2015 at 23:12 | Reason: Not specified

User

Posted 09 Apr 2015 at 00:12

hi, Chris,

Sad that you couldn't continue with such brilliant service in France. But I guess the BigY'n knows what He's doing! Got the right treatment at the right time for both of you then brought you back here to continue your work!

Just found out this afternoon - appointment with the urologist this coming Wednesday. Is a urologist good enough, do you think? I've started to read the toolkit and it seems that there's oncologists, radiologists and urologists - will a urologist have a favourite treatment like the other two might, do you think? Or will he or she be neutral enough to speak without bias?

Graham says he's fine, but he looks so strained. He says he hates being "poggled" with - he's actually really squeamish, and I think, 'How the heck are you going to cope?' But he will - he will have to. And Lynn said I might be surprised, so I'm banking on that. But he needs something to help distract him; he doesn't run or have hobbies as such - he reads, but this just drives him into himself, sort-of dissociates him from his life. He sometimes acts as though he's sleepwalking, in a way, and I don't really know how to ground him. My concern is that this coming onslaught of treatment might crush his spirit - I mean, when I say he's squeamish, he feels screaming tension when he has a b*** corn done: he felt very traumatised after the biopsy.

I'm really concerned that he needs something to lift him out of feeling this almost pathological loathing for all things medical - he wasn't mentally present when I was going through treatment because he couldn't cope. He's 10 times worse if there's something wrong with him. He doesn't want to join the site - it means that he has to accept he has prostate cancer and the way he's dealing with it in part is to fight it in his head with not accommodating that he's got cancer whilst saying, "game on! Let's kill this thing - get it gone!" And I support that to a large extent - he has to fight it in his way.

I'm stumped - all I can do is walk beside him.

But thanks for your support, Chris, it's good to know someone's there when I'm all over the show and talking irrationally (sorry if I go off on one!).

And God bless you and Shirley too.

Oh, and the dog is Bertie, our Golden Retriever cross. The other one we have is Wisley, a Patterdale Terrierist cross! They both keep Gray very fit, thankfully. And make us laugh. They are a bit mad, truth be told!

User

Posted 09 Apr 2015 at 01:29

The urologist is a surgeon so will probably lean towards prostatectomy. But usually a multi-disciplinary team looks at the results before your appointment and the uro will tell you what the MDT felt was available & suitable in your case. He / she may also recommend that you see an oncologist to discuss radiotherapy, brachy, etc.

John managed to get through the whole thing without ever reading anything and he has certainly never looked at this site. It worked for him - I did the research and the worrying, he developed a miraculous capacity to forget all bad news as soon as it was delivered and to wander through treatment, failure, recurrence, more treatment and then success without retaining any important stuff at all. Sometimes it has driven me mad but it has worked for him.

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

User

Posted 09 Apr 2015 at 14:07

I have mainly seen a urologist on behalf of a multi disciplinary team throughout the three years of my treatment so far. I will transfer to an oncologist when I move to more invasive chemo treatments. I did not have to face decisions about surgery or RT though did have that discussion early on with my uro. Although a surgeon he felt RT would have been the best option. In the end when bone met spread was discovered it became academic as I was on HT and on a different treatment path.

I have recently changed my uro as my original one has moved on. This was unsettling. I had become used to my first one, trusted him, got the explanations I needed etc the new one I am still unsure of. I guess what I am saying is that you have to feel comfortable with the lead contact for your treatment path. You have to trust their judgment. Of course if your OH has surgery the surgeon should be experienced so you can get the best outcomes.

User

Posted 09 Apr 2015 at 14:35

Hi Steph

We initially saw a Urologist and like Lyn's experience - he wanted us to go down the RP route.

We then met the Onco who was so different in terms of bedside manner and explained to us that we did have options, and gave us a lot more detail and a lot more of his time.

I must admit that we were in such a 'state' of devastation that we could not take it all in and did not know what to do.

We were also not privy to this site.

In a haze, we went for the RP but it failed (during the op) as they noticed the lymph nodes were involved so we reverted to the RT.

My advice would be to take your time, read a lot, get advice from here and do not rush into a decision like we did. We had an awful time as we were panicking to get the treatment underway. We thought my OH would die if we did not. We had no where near the support we needed but I think that you will be much better placed to handle this than we were, from utilising this site alone, and your own work experience.

Depending upon the route you take you will have a Consultant Urologist or Consultant Oncologist looking after your OH, just make sure that you have trust in them, they are recommended and they take time with you.If they do not - find someone else.

Thinking of you,

Alison

User

Posted 09 Apr 2015 at 18:45

I did not start using this site until I'd had my op, but this would not have changed my decision. Clatterbridge and Warrington hospitals gave me lots of PCUK material which was really helpful, but i get the impression this is not the norm. It should be!!!

Stay Calm And Carry On.

User

Posted 09 Apr 2015 at 19:47

Hi Steph,
I was referred initially by my GP to an urologist who arranged for all the tests / biopsies that resulted in my PCa diagnosis ..

He did explain that my PCa was 'treatable' and I had a choice of treatments.... This either was RP or RT with HT, or possibly a combination of both...

Brachy was not recommended as an option for me because of the size and volume of my tumours(s) I was told...

I did go away and consider my options, but it was pretty evident after discussing things with my OH and another follow up consultation with the urologist that I just wanted my prostate removed so no need for me to see an Onco
He said that if my details were presented 'blind' to MDT teams around the country, in my case, most would agree that a RP would be the best option for me...

I was made aware that there was a chance that some PCa cells may have escaped from the prostate microscopically and I may need follow up RT, but until the Lab ' had the specimen in their hand' no one would know for sure... This was a chance I was prepared to take together with the possible side effects of surgery to get rid of the offending gland.

Everyone has to make their own decisions based on their diagnosis and clinical staging at the time. As I understand things RT is just as successful as a RP in treating localised PCa
I learnt a lot from this site prior to my decision to go ahead with surgery and went ahead knowing that there would be risks involved no matter what route I took.

Good advice given by previous posters as always....

Easy for me to say now I know but, take your time and weigh up all of your options...... my consultant even offered to delay my op for a few months to allow me to go away in the caravan.... Needless to say I declined that offer and I told him the sooner it's out the better!
A decision I have not regretted.

Best Wishes
Luther

Edited by member 09 Apr 2015 at 19:48 | Reason: Not specified

User

Posted 09 Apr 2015 at 21:55

I met with three surgeons/urologists and the oncologist twice before I made my decision. In the end I decided I wanted it out. I didn't want the toxicity of HT and im not sure I'd have been happy with the not knowing.

I then had to decide what surgery I wanted ie laprosopic or open...They didn't do robotic. I researched my surgeon. Paul has mentioned that their experience is critical. If you do discuss surgery you need to ask the surgeon how many operations he has done...what's his sucess rates. ..what's his thoughts on side effects and nerve sparing...what's his sucess rate re minimising continence problems etc

My surgeon had done over a 1000 of these operations. This was one of the main reasons I chose him

Bri

User

Posted 09 Apr 2015 at 23:57

Wow. Am feeling a bit that people still want to answer me. This really is a place where real people are, isn’t it?

Firstly, thanks for the explanation, Lyn. I did actually reply, but it never got printed, it seems. Now I understand the different disciplines, it makes a bit more sense of who makes up the teams. And your John sounds a bit like Gray – wants to wander through the treatment, but Gray just wants to get it over with; a bit like what Alison says. Meanwhile, if the tension doesn’t give me a six-pack and cure the constipation life will be even more cruel! I guess I’ll be like you – the carrier of the info and the worry! Well, not really the worry – he’s very drawn and tired; not sleeping at all well, a bit disinterested in life, a bit withdrawn. He’s worried, of course. But it’s brilliant to read of the stories of triumphs, like John’s and all the other conquerors on here – and there are so many, so I’m squirreling those away if I need to shore him up.

Paul – I’m really sorry to hear how unsettled you feel at losing the urologist you trusted. I really hope you find the new one is even better than the previous one. I guess I’d not even thought of trust. I’ll be trying to get a ‘feel’ for this guy when we meet him. I didn’t even consider that we might have time to make a decision. I’ve been reading it but it hadn’t clicked until now.

Alison - how come they noticed the lymph nodes during the op? Did they not see them on the MRI scan? And I hear you and the others saying take your time – I’m not sure I could convince Gray, but we will be talking it through. It’s odd, from wanting to know about what we’re facing, I feel very sluggish now, as though I can’t be bothered to read it all. I think it’s a bit of delayed shock and the aftermath of the devastation – sounds like you went thought the same thing: panic, panic. I’ve slumped a bit. But I get we need to trust the consultant. If we wanted to see someone else for another opinion on treatment, might that not put us back to waiting lists and delay the treatment, do you think?

Luther - thanks for your reply. Gray is like you at the moment – if it is possible to opt for it to be removed, then let’s go for it. I’ve led him to look at the treatment options and side effects, and told him of some of the stories of the folks on here, but he is of the mind at the moment to cut the b***** out and be gone with it. I’m praying that is inside the capsule and if that were the case, Gray could make that choice. But can anyone tell me, how do you know if a surgeon has a good track record?

And Bri – how come you were given the opportunity to see all those ologists? Did you ask to, or are we just allowed on the NHS? And how come you knew what to ask? How do you get to research a surgeon? What made you plump for yours? What if I ask and they don’t give me an honest answer? Or if I piss them off? And that’s if I have the courage to ask! And what if they have only done a few – what if we then want someone else? And am I allowed on the NHS … and how would we find one and choose them?

Aaaargh!

Sorry. Meltdown averted, normal cycle resumed, cup of tea, have a wee … thanks guys.

God bless. xx

User

Posted 10 Apr 2015 at 00:17

You should be able to find loads of posts on here about the questions to ask the specialists - I have certainly posted them a few times as have others.

The best bit of advice we had from the urologist was to delay treatment, go away for a holiday and do loads of 'what couples do'. John didn't take the advice at the time he was in too much of a hurry to 'get it out' but we have both regretted this very much in the years since. It would have been so nice to have a last romantic holiday to remember and keep us going when things got tough later.

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

User

Posted 10 Apr 2015 at 01:06

Life for those of us diagnosed with PCa is never the same again moving on. How long is the "moving on" I wonder. And so do many, no doubt, the problem for most with that, is that nobody knows?

The diagnosis stage, as I understand it, is a journey, a journey where at some point one encounters the critical fulcrum point, the pivotal point at which if the right decision is not made, all is lost, potentially.

So, with PCa, a supposedly generally accepted "slo gro- cancer" what's to worry about on diagnosis? How many of us have been told how lucky we are to have ONLY "Prostate Cancer"?

Steph,

there needs to be a realisation of what you are facing. My thoughts on your Gray's position would be, if it were me, FFS get it dealt with asap and get him on the road to "cured" asap. The suggestion that you (He) should entertaining housing PCa, waiting and watching and wondering, is an interesting thought to entertain. At some point, and no one knows where or when, the tipping point at which a curable diagnosis becomes a "live a long as you can and medication allows" kick in, and of you have left it that long it is too late for a longer life.

He may be climbing the PCa hill and the peak (tipping point) maybe, or may no be, closer than he or you know?

If that optimum point has passed, this will be of little consequence, but if you have the luxury of time on your side, you may save the day?

IIWM I would not fanny about making choices and decisions. I would get them made and treatment started.

atb

dave

User

Posted 10 Apr 2015 at 07:11

Steph I Googled my urologist. I then asked them the questions about their experience. They were more than happy to tell me. One explained that there was a new urologist at Hallamshire but based upon my questions they would make sure I didn't have him.

They all have to gain their experience but not on me.

The nurses at PCUK as well as folk on here told me how important the surgeons experience is regarding achieving all the outcomes we want ie cancer removal and minimising side effects. The PCUK nuse recommended a surgeon who has done over 200 operations of this kind and is still doing them. One of the surgeons I met was doing an operation about once every two weeks..The guy I chose was doing more than this in a day.
I saw the oncologist as I had to hear from her what her thoughts were.
As Dave says I personally wouldn't delay too long but I would want to be confident I had an experienced person at the helm

Bri

User

Posted 10 Apr 2015 at 07:17

Lyn - how do I look for the questions in the posts when there are thousands of posts? Is there a section I've not spotted? And, oh, how we would love to be able to go on holiday. We have not been on holiday for over 10 years - and that was to Wales, never mind somewhere warm!

And Dave - thanks for answering: I'm more with you on the 'what's the tipping point' question, assuming the capsule's intact. We were told it looks like it may have reached the outer margin ... Gray is like you in the FFS get it dealt with asap, and I'm sure he won't be of the mind to adopt any wait and see - he wants it out and then deal with the aftermath, grateful that there will be one. There'll be no fannying here! If the capsule is intact, we go for it. Just remains to decide which way to jump, if we have the luxury of that decision.

User

Posted 10 Apr 2015 at 07:40

Hi Steph,

I think if I'd had the chance I would have opted for having the prostate out. It's just natural to want the thing that contains the cancer, out of the body.

Unfortunately, I didn't have that option and have to wait another year or so to find out if the radiotherapy has worked.

Could be a nervous wait but fortunately, a heart problem came along to help me take my mind off it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.

Steve

User

Posted 10 Apr 2015 at 11:32

Stephanie,
At the top of the page is a white oblong which says "Enter Search Item Here" try that.

Urologist is first "ologist" Radiologist deals with Radio therapy / ex-rays Oncologist deals with Cancer Treatment.

Than you could go to Radiologist or Oncologist next. Urologist deals with anything to do with Urine, then you go to whoever your 'TEAM' decide as to next treatment.

God Bless,
Chris.

Edited by member 10 Apr 2015 at 11:35 | Reason: Not specified

User

Posted 10 Apr 2015 at 11:36

You just put some key words in the search box and it brings up excerpts of relevant posts. To save time, the main questions would be:
- % of patients with positive margins on pathology
- % of patients who go on to need adjuvant RT or salvage treatment in the next 2 or 5 years
- % of patients fully continent by 12 months post op
- % of patients able to have penetrative sex 12 months post op without needing mechanical or chemical aids

Many of the surgeons actually publish their success rates and you can also check out Dr Foster's website which gives data for most hospitals. However, if you are deciding by raw data, it is worth noting that the NHS definition of 'continent' is using one pad or less per day which isn't necessarily what most of us would think of as 'dry' and most of the published stats on erectile function following treatment for PCa report on the % of men able to have any kind of erection, regardless of whether that is natural or using a pump, tablets, injections, etc, whether loss of length/girth has made it too small for penetration and also regardless of whether it is sufficiently hard to have penetrative sex.

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

User

Posted 10 Apr 2015 at 11:41

Dear Steph

You are in that minefield of information at the moment and just do not know what to do (we have all been there!). Once you make a decision it does make things a little easier. I agree with the 'no faffing about' route, once you are comfortable with the chosen route.

They noticed 3 Lymph nodes were enlarged on the scans but were unsure if it was related to the cancer and said it was 50/50. The only way to tell was to get them out at the beginning of the op, then depending upon the results proceed with the prostate removal or not (as was the case!)...it was devastating as they kept us in hospital and did not tell us what had happened for 24 hours (lots of whispering outside the hospital door lead me to breaking point!!).

If you are not happy with the Consultant (and you may well be) then there may be someone else in the same team that you could see? Or you could go private to speak to someone at a local Bupa Hospital or in London. I am afraid to say that it depends upon your finances and available time/transport. You could ask your GP for a recommendation. I agree that you do not want to delay treatment unnecessarily. You really do need all of the facts before you go forward ie all the scans and tests done.

Apologies that this is rushed - got a toddler begging for breakfast!

Alison x

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