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Chris J's Journey

User
Posted 13 May 2015 18:48:42(UTC)



 This is the second time ive tried to post this today -- hopefully the site wont crash again.

Im chris 47 , psa 34 , 3 biopsies , 2 mri's , bone scan , CT scan . I've posted once before .

 

Had my CT Saturday and yesterday consultant guided TRUS . Very unpleasant and punctured my bladder
unfortunately but seem ok now . My CT results were already through and showed a
lump high up and to the rear of my prostate against the bladder . He thinks it
cancer and took 4 samples but said it just MIGHT be a lymphoma etc -- ive only
2 tiny cancers detected and my PSA just doesn't add up -- his own words .

 

UNFORTUNATELY the scan revealed two lumps on my adrenal glands which need investigating -- they
took blood and I need to do two 24 hour urine samples . They were very
interested as im on Testosterone and Thyroid replacement re hypopituitarism .
He said these tumours although probably non-cancerous could deffo have caused a
multitude of issues both mental and physical -- I was medically retired in 2013
after 24 years employment . He said prob need a laproscopomy to remove them
anyway.



We discussed prostectomy with or without bladder removal re the proximity . Another option
was High intensity Radiotherapy whereby I keep my organs . Impotence probable
anyway which im massively keen on avoiding being 47 yrs old .



Anyway there we are . El and I find out 27th after a massive journey of general ill-health . Here's
hoping . Thanks again for support and for the site in general which has given
me hope and insight .



My psyche has been in contact to help smooth things a little






If life gives you lemons , then make lemonade
User
Posted 01 March 2017 14:56:51(UTC)

Hello all
Saw Onco today. Didn't take a PSA sample. But it's all sorted. Yes I can have the PSMA PET scan at UCLH in approx 5 to 6 weeks time. 95% likely to be covered by NHS. I won't need to see a different Onco. Just turn up for the scan. He quite excited as I will be the first Southampton Prostate patient to have this scan. I was one of the first to have Choline PET last year.
So I'm pioneering scans and ED treatment et al !! I may be quite a negative person but I like to get things done right if I possibly can.
He feels the results of the scan will be fairly conclusive. He would still like me to have RT to my bladder neck but we will decide for sure at end of April when all the results are in.
Feeling positive , winter is over , days are lighter , I've even got myself a new job even though I am retired on a pension.
Good luck to all
Chris




If life gives you lemons , then make lemonade
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User
Posted 04 January 2017 15:59:07(UTC)

Just an update to keep my post factual. PSA test today 1.4 up from 0.91 five weeks ago. So still effectively a six week doubling time.
Now on 4 weekly testing.
Interestingly I asked Onco today if I could have a PSMA PET scan anywhere in the country and he said no and that trials are over. Tentatively booked for Choline PET scan in six weeks time.
Cheers all you amazing people and may 2017 be good to you all xx




If life gives you lemons , then make lemonade
Thanked 6 times
User
Posted 21 April 2017 18:47:22(UTC)

Can't even put into words the running around this week, but I shouldn't complain at our grand NHS.
After the heartache I got another call yesterday saying they could scan me today due to a cancellation. So off I went to London again and stayed the night , and today successfully underwent the PSMA PET scan. I consider myself very lucky even though I fought for it. Quite out of pocket , but considering I was willing to pay for the whole scan two months ago !!!
Anyway , maybe results Wednesday at Onco appt. Im actually not too stressed tbh. Worn out.
Thanks all for replies




If life gives you lemons , then make lemonade
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User
Posted 14 May 2015 19:05:55(UTC)
Chris
Here you go up to the top of the board. I will come back later and reply properly. In the meantime I hope you get some responses now.

It is a daft system as we all really want to help and encourage new members. More later xx
Mo
User
Posted 14 May 2015 22:29:37(UTC)
Hi Chris

well now you are in the waiting game ... there is really no more you can do until 27th when you and El go for that consult.
All in all it sounds as though everythig is treatable and that could mean surgery, RT hormone treatment or a combination.
Unfortunately until all the results are in, biopsies confirmed etc. There is not much you can do. Have you got the toolkit from this forum ?

with regard to posting, I have sent you a reply to your PM which should help a little.
Best wishes
xx
Mo
User
Posted 14 May 2015 23:02:36(UTC)

I would just like to echo what Mo has said, and say that you are in the right place for support.

We will be able to help you more once you have your diagnosis in full.

You are going through a really difficult time waiting and sadly there is no easy way of getting through it, we have all been there and it is ongoing with the routine blood tests etc so we do understand.

I wish you the best of luck with the results.

Stay as positive as you can. Easier said than done though I know.

Alison

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User
Posted 15 May 2015 10:49:22(UTC)

Thankyou everyone very much .
I've just been called and they have had the MDT meeting , and I now need a flexible camera to look at my bladder re the proximity of the lump . Monday !!
Its never ending it seems .




If life gives you lemons , then make lemonade
User
Posted 15 May 2015 17:58:49(UTC)
Ah but Chris there is a positive, u are getting everything checked out quicky now so you should get answers and a good insight on what happens next much quicker than some do.
You sound a lot more upbeat so hopefully you and El can have a relaxing and chilling out weekend.
Mine started at 6pm with a nice glass of wine, well I did do 5k in 40 mins at the gym today followed by a 45 minute pilates class so I felt I had earned it !!
Best wishes
xx
Mo
User
Posted 18 May 2015 17:49:06(UTC)

So got hauled in early by specialist .... jumped all the queues. Explained immediately that biopsy results came back 18mm growth , Gleason 4+4 , and PSA up from 34 to 43 in 3 weeks . Touching on bladder .

His advice for me and El is immediate full prostectomy and lymph removal and hopefully save bladder . Did cystoscopy and it hurt like merry hell but said inside of bladder looked ok . Gave the option of High Intensity Radiotherapy with Bracchy implants but basically said the only way forward is surgery . SHELLSHOCK . Oh and immediate hormone treatment I pick up tomorrow .

Utterly my worse day ever not to mention cystoscopy which was prob worst experience of my life .

Adrenal gland tumours ongoing with bloods , further CT scan and 24hr urine samples .

 I think I am going to need you guys awfully in the next year or so and will pledge to share my experience to give hope or be honest to people like me who are going to need help a lot .

I don't think ive even been given chance to choose . As I said if I was on my own I think my standard of happiness would lead me down the road to no treatment . I think the only reason im doing this is for my family to be honest . Actually im realising this is a forum for hope and treatment , and not for doom-and-gloom so ill be quiet .

We are shattered , and my survival instinct is not there. Two weeks of being "normal" . WTF !

Im only 47  :-((       48 in June

Chris




If life gives you lemons , then make lemonade
User
Posted 18 May 2015 17:53:21(UTC)

So got hauled in early by specialist .... jumped all the queues. Explained immediately that biopsy results came back 18mm growth , Gleason 4+4 , and PSA up from 34 to 43 in 3 weeks . Touching on bladder .

His advice for me and El is immediate full prostectomy and lymph removal and hopefully save bladder . Did cystoscopy and it hurt like merry hell but said inside of bladder looked ok . Gave the option of High Intensity Radiotherapy with Bracchy implants but basically said the only way forward is surgery . SHELLSHOCK . Oh and immediate hormone treatment I pick up tomorrow .

Utterly my worse day ever not to mention cystoscopy which was prob worst experience of my life .

Adrenal gland tumours ongoing with bloods , further CT scan and 24hr urine samples .

 I think I am going to need you guys awfully in the next year or so and will pledge to share my experience to give hope or be honest to people like me who are going to need help a lot .

I don't think ive even been given chance to choose . As I said if I was on my own I think my standard of happiness would lead me down the road to no treatment . I think the only reason im doing this is for my family to be honest . Actually im realising this is a forum for hope and treatment , and not for doom-and-gloom so ill be quiet .

We are shattered , and my survival instinct is not there. Two weeks of being "normal" . WTF !

Im only 47  :-((       48 in June

Chris




If life gives you lemons , then make lemonade
User
Posted 18 May 2015 18:10:14(UTC)
Hi Chris,

Sorry to hear your news, we are new to it all too my Husband is 46 psa 3.5 Gleason 6 8mm tumour on one side. He has decided to have Da Vinci op which us now set for 9th July. We were walking around in a daze for a while but now after doing some research my husband now feels more ready for the next step. All I can say is to read everything you can and make your decision on either surgery or Brachytherapy, my husband chose surgery because he has poor urine flow so would have had to have a TURP first and then 6 months later Brachytherapy so didn't want to prolong things. You wiĺl get a lot if support on this forum for everything.

Good luck to you and your family,
Trish
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User
Posted 18 May 2015 18:53:30(UTC)

I wish you both so much luck and best wishes . Its like shellshock isn't it although tbh I was kind of expecting it . My surgeon assures me he can do this keyhole and try to save nerves , and even re-section bladder and even re-construct a bladder using bowel tissue if needs be . But I like the idea of robot da-vinci . It wasn't offered . Then again I don't like gadgets in cars haha . I just hope he aint in a rush or had an argument with his wife that day . So I prob will be in a month before you . I think the only way forward is surgery . I either want to beat it or don't , but feel rail-roaded . Ill do the right thing !

Thankyou for your reply Trish. Really. I want help , and will give it . This site is important as this disease is life-changing and distressing to a man to the extreme .x




If life gives you lemons , then make lemonade
User
Posted 18 May 2015 19:30:46(UTC)
Hi Chris,

Will keep an eye out for your posts, one tip I've been told lots of pelvic floor exercises might help reduce incontinence after so start doing them now!

Trish
User
Posted 18 May 2015 19:33:23(UTC)
Chris
you and I have had several PMs over the last week, your results are not the best I agree but they are most definitely not the worst. You say you have not really been given a choice, that is because your specialist wants you to go down the surgery route and he thinks that is the best option. Now that could be just because he is a surgeon and not an Oncologist who would probably advise you to have Brachy or RT.
It is a crappy thing to have to choose on. Your surgeon may not have offered da vinci because he cannot, you may need to go to another health area to get that but it is your right to choose.
Most men I see post on here in a similar situation to you say "I want it out and I want it done quickly" I know you feel you are doing this for your family but that is your BP talking not you. I really believe that once you have had surgery and hopefully have given the big C a whopping great reverse V sign that will help you not hinder you in dealing with your BP.
WE are all here for you as long as you need us .. try checking in with some of the other guys who have had the surgery either Robotic or by a mere human being (keyhole or open)
In the meantime if El wants to post or chat with others here do encourage her to, she can use her own profile or do like a lot of others do and just share yours.

Best wishes
xx
Mo
User
Posted 18 May 2015 20:15:09(UTC)

Thank you both xx Will start those exercises with my cheese and bics !




If life gives you lemons , then make lemonade
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User
Posted 18 May 2015 21:39:41(UTC)
Sorry to hear that it is PCa, and not the lesser alternatives mentioned.

Now you know - you can get stuck into doing something about it, which is far better than not knowing.

You are young and it is not fair, I was 38 when my OH was diagnosed although he is a bit older than me!

All I can advise is to research the options and speak to a urologist and an oncologist if you can, to view all aspects and options.

You are at a really difficult point, not knowing quite what to do, we have all been there in that state of disbelief, shock and being so frightened.

As Mo said, you have caught it now and can do something about it. Take strength from that if you can.

Alison




User
Posted 21 May 2015 15:06:38(UTC)

Arghhhh
Please any help - I know you can only do your best . I promise to help others and share my journey ! This bloody disease.
The cystoscopy showed no bladder penetration , so because of this I was actually given the chance of Oncology . Lovely specialist and he swore he could get same outcome with HDR Bracchy and 3 years Hormone Therapy . They both say that 10 year survival is 70%.
I DESPERATELY want to preserve sexual function being only 47 , and Oncology said Bracchy was the way to go. But Urology said surgery was the way to go . Ive spoken to all Prostate nurses and two on this website and they all awfully lovely and helpful , but basically non-committal .
At least im positive ( Elaine said she would kill me anyway if I didn't have treatment ). But really what to do regarding long-term side-effects of incontinence and impotence .

They said I had upto 18 mnths to live , PSA 43 and rising 5 points per week . Gleason 4+4 and 18mm touching bladder which is rare ?? We have a week to decide . Ive started hormone treatment anyway to stop it while we choose .
I will SCOUR this site in that time if it stops bombing out .

ANY ANY comments well received
Thanks Chris




If life gives you lemons , then make lemonade
User
Posted 21 May 2015 17:17:37(UTC)
Chris and El
I posted a little reply on MLJS thread as well but here is what I think for what it is worth.
You have a whole week ahead of you so time to research, ask anything you need to here and of your medical team and try to make an organised approach to the decision making.
First of all what are your priorities and in what order. ..Living, EF ,continence etc.

Surgery may have several options in itself Robotic guided by a surgeon, laparascopic or open by a surgeon.

Brachy has things to consider like how the seeds might affect El or small children..here I know very little so can't offer any info. Others will though I am sure.

Surgery, Brachy, RT all offer a "cure" solution if there is such a true word I prefer to use long term remission.
They all have possible side effects and nobody can give you guarantees on any of them.
You can only make a decision based on what you know amd once you have you need to have faith in it and not look back.
I really hope you get lots of responses to this post.
Best wishes
Xx
Mo
User
Posted 21 May 2015 17:36:48(UTC)

Mo ,
I hope I get some replies too , but I guess searching the site is the best bet . At least I really am in the right mindset now . You've helped enormously but as you say it has to be our decision in the end -- just such a massive one with nasty bits anyway . The surgeon is excellent according to this site's nurses . He was going to do lapro but by hand . The Oncologist was lovely and gave us 50 minutes . Bless the NHS - ive had nothing but sheer quality and commitment by lovely professional people . He swears my standard of life will be better with him , but THREE years of tiredness ?? The surgeon feels I am young enough to "easily" get thru the side-effects . Here we go then x

Chris




If life gives you lemons , then make lemonade
User
Posted 21 May 2015 20:06:25(UTC)
Chris

Sorry for the delay in getting back to you, I have a temperamental wifi connection at the moment.
I really do understand the difficulty that you find yourself in regarding making a choice as Steve was given 3 to choose from, He said that he wished there had only been 1 option then the decision would have been made for him. Although it has to be your personal choice I will list below the things Steve took into consideration when making his choice:

He's 57 years old, young according to both oncologist and urologist!
He's not got, and never has had, any urological problems.
He's a healthy weight and fit, not quite a gym bunny but he goes regularly.
He's self employed, so if he's not working he's not earning.
He's a London taxi driver so he doesn't always have easy access to a toilet.
We've been married for 29 years, together 32 and have a 17 year old daughter- our family is complete and our daughter old enough to understand what's going on.
He's rarely in the company of young children but 2 of his nieces are pregnant so he will have to give them a wide berth when he's radioactive.
Order of priorities: life expectancy, continence and ED. ED is the only thing that I commented on as Steve was worried about how it would affect me. I told him that I would happily settle for a kiss and a cuddle and know that he was in remission, I married for love not sex.
Depression: he had this following his heart attack 5 years ago as he couldn't work for 18 months, he's terrified of it coming back if he ends up being off of work long term again.

I realise that you are younger than Steve and your priorities maybe different but please make a list of the pros and cons for each treatment. Both his oncologist and urologist said that they will always promote their own specialisms if they are appropriate but they would also steer patients to each other if it was more appropriate, it's not a numbers game!

I hope that you and El don't have too many sleepless nights, if I / Steve can be of any further help please shout!

With all very best wishes
Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 21 May 2015 20:49:33(UTC)

Thank you Maureen so so much for taking the time to reply . Yes its very much personal choice isn't it , and ive realised I didn't read your original post quite correctly in the first place ! If I take the HT / BT route , then mine and Steves treatments are still different based on me being 3 yrs HT , but seed implant and then only 15 RT days . I think they DO try to tailor their treatments to your own specific goals . I think they have taken notice of what is important to myself and my family . But yes they still both promote their specialities , but yes it seems they are talking to each other fully . MDT tomorrow them we meet surgeon again Weds , then we make a decision as it seems a nasty aggressive badboy .
I liked your words on relationship and marriage , and Steve seems a very lucky guy indeed . We have known each other 15 years but only together 6 , but produced a little man of 5 ! I have been assured El's full support and commitment to this , and she too will accept the outcome and we can move forward together . Im leaning to the HT / Brachhy / RT route at the mo , but will await Weds.
Thanks Chris




If life gives you lemons , then make lemonade
User
Posted 21 May 2015 22:23:19(UTC)
Chris

You and El will be fine, just as Steve and me are now. The initial panic has subsided, normality has been restored (as much as possible) and we're moving on with our lives again!

Gather your thoughts and questions for Wednesday and don't sign on the dotted line until you are 100% certain that all of your questions / concerns have been answered.

Stay in touch

Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 21 May 2015 22:37:46(UTC)

I opted for surgery with the I want it out asap attitude. No regrets, but touch wood, I have been told the cancer was contained, and at my review 11 months post op, PSA was undetectable. However, in your position, I might have looked at other options in more detail, and would urge you to do so.

Paul

Stay Calm And Carry On.
User
Posted 23 May 2015 16:37:42(UTC)

On a lighter note , can 4 days of Bicalutromide knock you flat on your back for 3 hrs , or was it 3 pints of St Miguel sat in the beautiful New Forest sunshine , after nearly the worst week of my entire life ?

Absolutely torn with what to do us both ( Chris and El ). We now 60/40  non-surgery / surgery .

Kind of wish I didn't have the choice anymore . It is Sooooooo tough. Enjoy bank holiday everyone

Chri J




If life gives you lemons , then make lemonade
User
Posted 23 May 2015 17:28:40(UTC)

Hello Chris and Elaine.
Just to say thinking of you really and hoping you can get some relaxing done over this Bank Holiday weekend.

Tough decisions to make, especially when you are so young.

Make your list of questions then place them in order of importance to you, rather than a random list. That way you get the ones really relevant to you answered first.
If you don't do it in order of importance you may get distracted by answers to a lesser question and get sidetracked.

Let the consultant see you have a list, he won't be phased by it, it's perfectly normal. You have a massive decision to make and he'll understand that you need the reassurance of your list.

My husband was more fortunate than you and was able to opt for low dose seed Brachytherapy and that is the only form I know about.
If your oncologist assures you that he can preserve your sexual function and it is important to you then you have to take it into consideration.
For what it's worth, and I do appreciate that it was a different Brachy, my soon to be 75 year old had this in June last year and is coming up to his first anniversary.

He didn't have youth on his side as far as sexual function was concerned but even he, at 75, can still get stirrings that are usable. With Sildenafil it makes it more than possible.

Whatever you decide both you and Elaine are in it together. She loves you enough to want to kill you if you don't take the treatment. Now that's love !!
You will need to stand strong with each other over the next few years.
There will be times for both of you when it becomes very difficult but remember that between you there is "a little man" who needs you both.

We are here for both of you. It's what we are good at.

Any questions, no matter how personal, there will be somebody who has experienced what you are asking. If you feel you want a more personal answer then click on the name under an avatar and you should be able to message that person directly.

Good Luck, and best wishes
Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 23 May 2015 17:36:12(UTC)

Hi Chris and El,

Meds and beer may take it out of you, but stress is also known to make one very tired and prone to sleeping. And you are probably stressed at the moment, handling it as you normally do, but still feeling it.

So, choosing the best of the bad?

FWIW, and I am no medical expert and thankfully I have very limited experienced and knowledge of PCa unlike many here, so I am lucky, so far, no one can really say what is the best treatment. If they could then all the others would be unemployed.

As I understand it the earlier you get diagnosed and the fewer symptoms you have the better your chance of recovery, or continued long term remission?

The specialist will all promote their specialism, in my experience. If you base your decision on what you read from members here bear in mind that you are only reading a fraction of all those men who have been where you are now, where we all have been not so long ago. Also bear in mind that with few exceptions mainly those with issues will be prominent here. I suspect that the majority of men fade away quietly and get on with their recovery? Lucky things.

Which ever choice you make, bar in ind that the range of side effects listed are just that "a range". And there may be other side effects, you may be the one in a million that cops it, or you may be the mango the many who make a full and complete and marvellous recovery. Sorry if this sounds confusing or grim, but the more you know about the after math, the better for you to be able to choose wisely.

When you go for your final meetings before deciding perhaps you would ask what other treatments may be available if needed later, back up treatment? Find out if any treatment option is off the table after your initial choice has been completed.

Take a notebook and a pen with you and someone to write and listen for you, you will be surprised what you will forget when something is said, especially if it is serious, the next few words tend to get lost in a fuddle of blur.

I hated being where you are now, and once I made my choice I went for it full pelt, no looking back. And try to not et worrying about tomorrow soil your enjoyment of today. That is one thing, those of us further along the journey", what a parc term, have all learned to a greater or lesser degree.

atb

dave


Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 23 May 2015 17:52:36(UTC)

Hi Chris J

Don't know why San Miguel is not available on the NHS...

I can't help you with your choice of primary treatment, as this is for you and your wife/partner to decide after having all the facts and figures presented to you.

This is in my experience the most difficult time for someone with a diagnosis like yours..... having a choice of treatments as you describe  does have a positive side though, as it does indicate that there is a curative intent with either choice...

All I will say is that, once you have made your choice, don't look back and concentrate on road ahead...

Whichever way you decide to go there will be ups and downs.......no treatment path is without side effects to some degree..

You will find plenty of support on here to help you through your journey if you need it..

Best Wishes

Luther

User
Posted 23 May 2015 18:29:14(UTC)

Damn it Sandra you started the tears up again -- and I actually thought they had completely dried up .
Very kind words and thanks Dave and Luther for taking the time for me.
It really doesn't help that ive suffered depression for 23 years and am bi-polar . My self -esteem is critically low at the best of times, and I find the things in life that bring people pleasure so hard to do . So yes its going to be maybe even harder because of my stupid head. And my poor poor wife having to put up with this aswell. Im not so sure we are strong enough for the times ahead , but have been advised that actually we are .
Wish hubby a happy birthday and first anniversary Sandra . My birthday is 7th June . I'll be 48 . it will be tinged im sure .




If life gives you lemons , then make lemonade
User
Posted 23 May 2015 19:03:54(UTC)
Hi chris
All the best with which ever way you chose to go.
Cant offer much advise as am still waiting to find out my own options
But you have a wife who is supporting you all the way where would be without them
run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 23 May 2015 19:06:27(UTC)

My husband's Brachy anniversary is 3rd June.
It would appear from his latest PSA that the treatment is/has worked.
He will be checked for the next 5 years which he says will do him as it makes him getting on for 80!
We shall certainly be celebrating with a glass or two of wine. ! I might even buy him a good bottle of red instead of expecting him to drink my home made white. Now there's love for you!

As for your "Stupid Head" and your "Poor Wife" well you are very attached to both and I'm very sure that if she is prepared to kill you if you don't accept treatment then she is well able to cope with the future, even if she will sometimes feel like kicking you too at times.

You are aware that you have mental health issues and that may make it difficult for you. Make yourself (and your wife) a promise that you will always take whatever medication is necessary to help you along the road to recovery.

And yes, you WILL be strong enough for the times ahead because you have to be.
Take it all one step at a time and please, If or when you need help because it's all getting too much, ask for it before it gets out of hand.

Best wishes
Sandra


We can't control the winds - but we can adjust our sails
User
Posted 23 May 2015 23:27:05(UTC)
Hi Chris

I don't have anything to add other than we're (me &Steve) thinking about you and your family, we know how difficult it is for you.

Try to enjoy the rest of the long weekend and have fun with El and your little boy.


All the best

Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 24 May 2015 07:56:05(UTC)
Chris
You are doing a brilliant job staying chilled enough to imbibe the San Miguel

You readily acknowledge your BP so that is a really positive thing as you will recognise when doubts and worries start to over power you. I am sure El is fantastic support too.
Take all the informative support from those posting nurture these contacts because once you have decided and started treatment you will always have us here to chat with.
In Bruges today and I don't drink beer but I will think of you when friends have one and say cheers and good luck.

Xx
Mo
User
Posted 24 May 2015 09:21:34(UTC)

Hi Chris

I remember how you are feeling now and wishing someone would make the decision for me.

Has their been any consideration by your treating teams about how either treatment could impact on your MH wellbeing? Has the professional who is overseeing your care/treatment for BP been consulted?

You mentioned your surgeon said they would attempt nerve sparing which sounds positive. Perhaps get a bit more clarity on that. The specialists without a doubt will have their bias but should provide you with all the information to make a decision.

I suppose one thing you may want to consider is if you have RT/HT will you be able to cope with the not knowing straight away. With surgery at least you get an idea of how sucessful the treatment has been after six weeks.

I opted for surgery but made sure I had a very experienced surgeon. Ask your surgeon how many operations of this nature they have done. What are their sucess rates both in terms of PCa removal and minimising side effects.

Having said that I had follow up RT. But my PSA is dropping, 0.028 at last count. I am fully continent and do have some life in the nether regions.

Please feel free to read my profile.

I hope you make the decision that you are happy with

Bri

User
Posted 24 May 2015 10:33:14(UTC)

Hi Brian
Thanks for your time. Had a bit of a relapse mentally last night where I was shaking "internally" . Vivid awful images involving me etc etc . I remembered that I had been in that state before . I am fully medicated up for my Bipolar and always take my pills . My Psyche is fully aware of what is going on , as ive already had some BIG wobbles . It has left me fearful of how I will cope in the near future , and which decision will be more "mentally Friendly" for me . I personally don't think I will be able to cope with what is ahead . Im not just saying that for sympathy . Ive been like this for 23 yrs .
Apparently my surgeon is the bees knees with loads of experience , and helped pioneer the robotic stuff . He said it would be laproscopic and that he could deffo spare the nerves due to the position of the tumour . Its bloody annoying as when I saw Onco I was Sooo relieved I didn't have to have surgery , but now we are slowly edging back towards it due to my estimated recovery time , and expected success etc . I am obviously shallow , as the only thing about the surgery that bothers me so much is the sexual things . Ill be honest -- im terrified of the whole shorter penis , no ejaculating , weird orgasm thing ? What the hell is that all about ? For the rest of my life .
Oncology choice just seems nicer , but then 3 years of feeling rough , and then eventual inevitable impotence and continence problems .
Felt very ill last night as I sais and that's not a good sign . Maybe some more San Miguel ?




If life gives you lemons , then make lemonade
User
Posted 24 May 2015 16:55:11(UTC)

Chris
if he can nerve spare and with the right support from the ED nurse and/or your GP you have a real chance of regaining erectile function and I would say continence, but obviously there are no guarantees.

Your thoughts about sexual fuction are normal but no more ejaculation..In my experience you get used to that. Orgasm - just as good, some men say it's better. Shorter penis- slightly but "does size really matter" I will let the ladies answer that one lol.

Any questions, just ask

Bri

User
Posted 24 May 2015 19:41:02(UTC)
Hello, I just thought I would say I feel for you. I don't think the worrying gets any less. Even after treatment. My other half was 57 at diagnosis, psa 3.7 (up to 4.9 by treatment time) Gleason of 6 so we were lucky it was caught early. He was never really recommended surgery, but having read all about it I think he would not have had it unless it was essential, mostly due to ED fear, incontinence fear and also as he is a farmer he can't take time off
I can understand why men "want rid" and go down that route, also as my other half chose brachytherapy there are fewer treatments available should it return. If it returns after surgery you do have radiotherapy to fall back on.
We thought brachytherapy was the easier option, but he had it beginning of Jan and has had no end of problems, radiation induced cystitis and prostatitis. I won't go into details but whatever you choose you can have problems, or complete opposite and breeze through it all. With the brachytherapy we had to keep the children off his lap too as our youngest is only 6. But it wasn't a problem in the end.
We do have a friend that had his prostate removed in his early 40's due to being young he had virtually no side effects, You do have age on your side too
I wish you all the best in choosing your treatment, it is a tough decision.
Thanked 1 time
User
Posted 24 May 2015 21:20:40(UTC)

Thank-you so much really really welcome advice sjtb We have been told there are zero radiation problems ( our son is 5 ). Im so sorry things haven't worked out as well as you would both have liked for your husband , but as you say I suppose some of it is just plain luck .
One thing I have noticed that just plain petrifies me , is that my PSA has hit 43 in just 1 1/2 years or less . And it rose 10 points in 2 1/2 weeks . And people on here everywhere I look are far more poorly than me ( I think ) and way further down the line , with a PSA value of 10 or less . Scaring me to be honest -- no wonder they want it out
Thanks again Chris




If life gives you lemons , then make lemonade
User
Posted 24 May 2015 22:42:52(UTC)

Hi Chris,
just to be clear - whichever treatment you end up choosing, the impotence and incontinence are not inevitable. And the PSA score does not directly correlate to the severity of your disease; if it was that easy the doctors would be able to group men into treatments based on their PSA rather than waste money on all the additional tests, etc. There are men with advanced disease whose score was less than 10 and men in the 100 - 130 range with no spread. The highest recorded PSA result our uro ever came across was something like 160,000!

What I would say (based on a husband, father and father-in-law) is that it is essential you choose the treatment that gives you the best chance of getting rid, rather than opt for the treatment whose side effects seem most manageable. My husband was 50 at diagnosis and would have had brachy if it had been available but it wasn't. He opted for the op at which point they realised it was already in his bladder so he ended up having the RT/HT as well. If he had understood that the surgery might not get it all, he would have gone for RT in the first place. He is now happily chugging along towards official remission :-)

Just out of interest, did the rise from 34 - 43 come after the biopsy? It could be a bit of infection.

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


User
Posted 25 May 2015 08:31:35(UTC)

Originally Posted by: Online Community Member

Chris
if he can nerve spare and with the right support from the ED nurse and/or your GP you have a real chance of regaining erectile function and I would say continence, but obviously there are no guarantees.

Your thoughts about sexual fuction are normal but no more ejaculation..In my experience you get used to that. Orgasm - just as good, some men say it's better. Shorter penis- slightly but "does size really matter" I will let the ladies answer that one lol.

Any questions, just ask

Bri

 

I could not speak for all Ladies, but I would say that a considerate and skillful lover is far more important than the size of a Man's penis ! As for the lack of ejaculate again some would say what a blessing!!

Of course there are many aspects of lovemaking where neither of those matter at all so Chris,  you should be able to take those ones off your list of concerns I hope.

 

Best wishes

xx

Mo

Mo

User
Posted 25 May 2015 09:01:08(UTC)

Thank-you Lyn for getting back to me, I appreciate it . And all comments the last week well taken on board and I think they are massively going to help make a decision later this week . I genuinely cant thank people enough for their kind and factual input to both my posts.
Lyn no my PSA wasn't after a biopsy , but I take your point about " higher isn't worse " - I think its the alarming rate of climb which is important . I took the time to read blog of your husband and his op and your story . It was important info for me thank-you.
Maureen thanks for replying again with your comments . The silly thing is that El and I agreed if anyone can probably adapt sexually then its us !! I wont add detail to that haha.
El and I actually get to have a whole day and night together today -- something we never manage due to no parents around etc. But friends have rallied round to make it happen . So lucky us .
Its strange that surgery was the worst thought in the whole world , yet I might be slowly getting drawn back towards it . But im hopeless at making decisions . I think I already said that ! Any way for 24 hrs starting now im not even going to think about it !

Chris x




If life gives you lemons , then make lemonade
User
Posted 27 May 2015 15:56:00(UTC)

So I dont know if this is good or bad!! El and I met surgeon today and basically the MDT meeting had removed my opportunity for Oncology treatment ( i.e. HT / Bracchy / RT ) .. They decided I need radical prostatectomy with bladder reconstruction and try to preserve nerve bundles ( although some at meeting wanted them out aswell ). Lymphh nodes too .

Sort of glad the choice has been removed from us , but at the same time gutted this is our future !! Incontinence may be ok , and maybe sexual function , but he obvs aint assuring anything !!
Operation 15th June , a week after my 48th birthday .. Yet again surrounded by "" much older "" men in the waiting room . Just seems so unfair but I will have to live with it.

Not feeling great as you must imagine , and reverting to bipolar mode . But we'll see ! Im not sure this is what I want , and it IS my life , but I basically i have no choice due to my circumstances. and responsibilities .

Sorry for rambling -- San Miguel again !




If life gives you lemons , then make lemonade
User
Posted 27 May 2015 17:23:30(UTC)

Not rambling Chris, San Miguel or not.
You are expressing your thoughts on today's events. San Miguel may be in the background but he can't make any decisions for you can he !!

The choice - no choice- well as you say it's been made.

At 48 you have many many years ahead of you. It may be a different life but it will still be an interesting one.

El is there by your side. She is fully aware of what the consequences of your op MAY be.

You can tell from the operation results of the men on here that not all are the same. Some are far worse than could have been expected given their original scores, some are better off than they ever thought they could be.

Keep focussed on your wife, your little lad and the fact that you want to be there for many years to come, to watch that little fella grow up and make you proud.

I can't comment on your bipolar mode except to say you are very aware of how it affects you so hang in there until you can come out the other side.

Best Wishes to you and El Chris.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 May 2015 17:26:41(UTC)

Hi Chris,

Sorry to read that your options appear to be limited to surgical intervention only. Did your MDT explain why they felt that this was the only route forward?

As for the side effects, they can not assure you of anything. None are guaranteed to happen just as none are guaranteed not to happen. The most likely side effect is for a ling and happy life, albeit a different lifestyle but you do get used to that as time passes as you adapt to your new normal lifestyle. Bear in mind that you will tend to get here the worst case scenarios I suspect as these will be people looking for help and ideas to improve their lot after surgery etc. Most men will cope with zero or minor consequential interference and not be online asking for help. Or they may be elsewhere on others sites.

If you are to have the op, will it be open or robotic? I am not sure how much work you will have done but it seems a lot, so may be open?

We have all been in the waiting room full of older men, wait until you get to the ward. I thought I was a youngster at 55, but you are lucky that you were diagnosed, do not forget that.

atb

dave

Edit to add, EF may take some time to recover, some men get it straight away or PDQ, some men take a while, some men need artificial help. No point worrying about this until you have to deal with whatever state you are dealing with.    

Dry orgasm, some women prefer this.  For example no damp patch in bed, no potential discharge if engaged in oral sex.

Urinary incontinence, may take a while to recover this, some men get to back straight away, or PDQ, others tale longer, some need artificial help.   Again, no point worrying about this until you have to deal with it.  

Whatever issues you encounter you are fortunate to have beside you a loving and supportive partner, so you will not be dealing or coping alone.

 

 

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 27 May 2015 18:07:31(UTC)
Hi Chris,

My Husband is pretty much in the same position as you and a young pup at 46! His only option is also Surgery, he is having Da Vinci on. 9th July. When we saw Oncologist they said he has poor Urine flow so if the wanted Brachytherapy he would have to have a TURP 6 months before so really decision was made as there was no need to have 2 ops in 6 months - he has now got his head around it and at least we know the PSA will go down straight away. As for the ED and incontinence somebody had written here recently that you need to decide what is most important to you and in what order so we agreed that Life, Continence and ED are the most important to him. Also our Oncologist said if he was talking to a man 10 years older he would advise watchful waiting but as Stuart is so young he couldn't guarantee how quick/slow the Cancer would progress in a younger man and we could be in a worse position 10 years down the road when he is still a young 56.

I hope it all goes well and as you said the decision has now been taken out of your hands so now is the time to do your pelvic floor exercises before the big op, it helps with the incontinence😊

Best wishes to. You and El,
Trish
User
Posted 27 May 2015 18:15:38(UTC)
Definitely not rambling Chris, you've been in turmoil trying to select your option and then finding out that there was actually only one on offer - a spanner in the works to say the least!!!

Steve said he wished that he had been "told" what he was having done then he wouldn't have had to make a choice, it would've been made for him. But your choice has now been made for you, a treatment plan sorted and your surgery booked.

El is there for you every step of the way and the PCUK "virtual buddies" are here for you too if you need a little extra support, but you know that already.

Enjoy your San Miguel, you earned it, I hope El's getting a glass of something nice too?

All best wishes

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 28 May 2015 16:10:13(UTC)

Hi its Chris
Thankyou for your support as always . I got drunk last night so haven't responded politely as I should have done . Maureen it will be interesting to track your journey as it was what I was offered then taken away from me . But I couldn't make my mind up anyway haha .
And Trish its nice to meet you . So your husband and I will be on the same journey but me first Grrr . It will be great to exchange notes and advice etc . All the best luck .x
Thankyou Countryboy as you have given me some hope and good advice these last few weeks and it will be taken on board . Its going to be Lapro by hand . Ive not nagged for robotic or anything but he has great pedigree -- I have a consultant friend who had a major sniff around.
Thankyou Sandra for ongoing support. It all helps . Im trying to be brave ( I am brave and used to pain ) . And im not going to post on here whinging. Im not great inside -- in fact im distraught massively. And I cant read the future . And im going to hate incontinence ( might be worse due to bladder reconstruction - the cancer is on the bladder but not in it ), and im TERRIFIED about erectile dysfunction as it has always been so important to me ( maybe unhealthily so ) . But we are who we are .
Obviously I wont be posting now other than to maybe help others on their posts . I want to try and share my journey with others ., as ive taken comfort and support from reading theirs .

So here we go -- awesome 48th on june 7th hopefully , then in someone elses hands on 15th June . We'll see how it goes !!

Chris




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 28 May 2015 19:50:26(UTC)

John had his bladder reconstructed as part of the RP (but open surgery not LRP) and if anything, he was dry more quickly than most.

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


User
Posted 28 May 2015 21:49:31(UTC)

Chris

I have a brother who is bipolar, so I have some understanding of your thought processes. You will worry more but, easy to say and not so easy to do, trust in whatever decision you make, ensure you get full physical and emotional support from day 1 by talking to all parties involved, (medical and family), and you won't regret your choice.

I am enjoying life more than ever 13 months post op, and you can do the same.

Paul

Stay Calm And Carry On.
User
Posted 29 May 2015 14:02:27(UTC)

Thank you Paul and Lyn. I AM distraught but am accepting what has to be done and will just grit my teeth and get on with it. We have good back-up and support both mental and physical - even spiritual from some friends

I today UPDATED my profile to explain exactly my journey should anyone wish to read it or someone new maybe compare it to their own circumstances . Thank-you to Prostate Cancer UK online Community




If life gives you lemons , then make lemonade
User
Posted 31 May 2015 10:28:36(UTC)

I had such an enormous wobble last night , feeling violently ill , tired , depressed , shaking inside etc . I just had to hit the sack after what had been a spell of slight positivity.
Just feel so wretchedly unhappy about what is about to happen me , and how it will effect everybody. I massively have to apologise to people on here that are in the sensible camp , but not once since this happened to me have I thought "oh no i've got cancer / I must get this out of me / I'm going to die " . All I can think , and what keeps going round and round in my head is " I don't want the operation / I don't want to go on / I don't want this to change my life / I don't want this to affect my marriage as it will / I don't want the inevitable horrible arguments ahead , I don't WANT to be blo...dy Impotent at 48 "
Round and round in my head making me sick to the stomach , as I don't have any choice . I keep making the right noises to people saying " Yeh well I have to do the right thing for my wife and family " . When in fact I don't want to do it !
Is it always the right thing for a man to "man-up" , "do the right thing " and " be there for everyone" , or do you get a choice in your own life - as at the end of the day it is your own life !
El and I see the family doctor together on the 2nd , and straight after we get an hour together with my lovely compassionate female psychiatrist , who is genuinely worried about my near future .
I followed Louise's post so closely yesterday and it broke my heart . I feel so sorry for them both and hope that it all comes good. I sympathise for them both . It made me so sad as I know in months I will be in the same boat and it sucks to be honest that people have to go through this .
I read her last post last night , and just saw me down the line......

Quote
""" I think the fact that he has (touch wood) been cured is part of the problem in a weird way. He had no symptoms so went from being completely well to incontinent and impotent. And because it was caught early and he was cured, everyone keeps telling him he's been very lucky. And he doesn't feel it""""




If life gives you lemons , then make lemonade
User
Posted 31 May 2015 11:27:12(UTC)

I wonder if you will be able to receive or process the help that you need here? Maybe you could consider altering your thought cycle? Have you considered speaking to a counsellor, your GP or anyone else who may be able to help you?

Most if not all the possibilities that you have expressed concern about may not happen, yet you appear to be planning for the future as if the worst case scenario has happened?

The only fact that you have not considered is that you may not come around after any surgery? When you are about to go under and the anaesthetist casually informs you that there is a 1 in a, I forget how large the next figure was, but it wasn't large enough for me, it is rather sobering. And then you wake up, and it is done.

While there may not be much control that you can exercise over the physical medical aspects of your situation, there is something that you can do to control how you deal with it mentally and this will impact on how those around you deal with it and you.

Irrational thinking serves no useful purpose.

Hopefully you can alter yours?

artb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 31 May 2015 12:34:18(UTC)

Chris I think the fact you are seeing your Psychiatrist on Tuesday is good. Hopefully she will be able to offer you the support you need.

I am aware that bipolar can cause delusional or irrational thinking. But for what it's worth, and in my opinion, I don't think your thoughts are irrational. If someone had said to me there's a real chance you will be incontinent and impotent by your mid fifties I would have requested they put me down first.

Your thoughts are rational as you have read some of the stories on here and it makes your dx real. However, most of the people on here are here as they have ongoing problems. The majority of men with PCa won't even have seen this site. A lot of those men will now be getting on with their lives and will have got over their side effects.

I hope your consult with your Psychiatrist goes well and you get the support you need.

Keep posting mate as people who are on here are standing with you

Bri

 
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