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Amarone Lovers story so far

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User
Posted 22 Feb 2016 at 12:22

Hi Everyone,

I thought I would share my story with you. Aged 54, fit and healthy, no symptoms. Had routine health screen at end of November, DRE normal. Got results of blood test result 3 weeks later and PSA is 39! Trip to GP a day later for repeat test, result back next day now 49 . Saw urologist in new year, another DRE, he felt something he wasn't happy about but didn't seemly overly worried but said I should have a 3T MRI. Results came back with suspicious areas on both sides with a 5/5 score with a possibility of some seminal vesicle involvement. Trans perineal biopsy performed under general anaesthetic showed 6/20 positive, Gleason 3+4, stage T3b N0 M0. Had PET/CT scan as well (PSMA F18 Choline), results showed no cancer outside what had already been determined. Discussed all results with radiation oncologist and urologist and have decided to go for open radical prostatectomy (Da Vinci or keyhole is not appropriate for me because of previous stomach/bowel surgery), a coupe of reasons for this, 1) I wanted the thing out, 2) It is easier to have radiation treatment after surgery than vice versa. On bicalutamide 150mg and awaiting appointment for surgery. I just hope that everything is removed so even though I am quite young I am more worried about my life life than my sex life.

So have felt like a zombie on planet unknown since December, only really started to feel a little better once I had confirmation (strange I know) and all the facts to enable me to make an informed decision about the road ahead.

Thanks

Amarone Lover

User
Posted 22 Feb 2016 at 14:31
Hi Mr. Lover,

Sorry to hear you are joining us. I had my prostate removed 11 months ago. All is going well. Hope all goes well for you. Please see my journey on my profile.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 22 Feb 2016 at 14:55

Hello Amarone Lover and welcome to the site.

Sad that you find yourself here, but with no symptoms to speak of it was lucky you had the routine health check.

It isn't at all odd that you should feel better and less like a Zombie than you did. A lot of people on here, men and their wives and partners like me, will tell you that the waiting, the wondering, the fear and the "what ifs" are possibly harder to take than the knowledge that you do, in fact, have cancer.

You want the thing out and have made your decision. There are also people on here that will definitely agree with you that the dead don't have sex and life is more important. We each make our choices according to what we hope and pray will be the right one but whatever happens in the future, this is your choice and hopefully it will all work out right for you.

Glad you found us, even if the reasons are pretty naff!!

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2016 at 21:06
Hi Amarone lover

oh man I love your choice of wine ....

So sorry to find a fellow fan on this forum though. Thank goodness things have moved quickly in your diagnosis and that you have been able to choose your treatment path. Telling family and friends is always a tough call.

I hope everything goes smoothly with your suregry et al.

Best wishes

xx

Mo

User
Posted 22 Feb 2016 at 21:18

Hi AL,

Best wishes on your cancer journey. It would be appreciated if you will clarify whether you had the PSMA scan or the PET/CT F18 Choline one, as these are two different scans which you appear to have combined into one. A link comparing the two :- http://www.ncbi.nlm.nih.gov/pubmed/24072344

and

 http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

 

 

 

Edited by member 22 Feb 2016 at 22:00  | Reason: Not specified

Barry
User
Posted 23 Feb 2016 at 17:04

AL

Good to know you have made your decision. Now you need your shopping list for the trip. There have been some good lists of bits to get for your op and tips for the journey. I can never find the conversations but the link below is a recent one and I am sure our caring members will be along soon with more items. All the best for your op My number one tip is no straining to pass that first motion post op.

http://community.prostatecanceruk.org/posts/t11307-Operation-29-Dec#post139160

Thanks Chris

 

User
Posted 02 Mar 2016 at 14:15

All the very very best from me. You'll be fine. Red wine is essential for recovery I found although most will disagree. Good luck
Chris

User
Posted 02 Mar 2016 at 14:15
Amarone

Hope all goes well for the OP tomorrow. Will have to look out for the wine.

Thanks Chris

User
Posted 02 Mar 2016 at 14:23

Good luck Al. I'm sure you'll be fine, even allowing for daytime TV !

I won't even cross my fingers. You won't need me to.

All the best to you

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Mar 2016 at 22:11
Best wishes for the surgery, look forward to hearing from you in a day or so

xx

Mo

User
Posted 02 Mar 2016 at 22:29

Good Luck for tomorrow, Al, hope everything goes well for you.

Best Wishes,

Steve

User
Posted 03 Mar 2016 at 07:37
Hi

All the best for the op today.

Debbie

User
Posted 03 Mar 2016 at 08:55

All the best for your op x

User
Posted 08 Mar 2016 at 15:08
Hi everyone,

Thanks for your best wishes before my op.

Back home yesterday after four nights in hospital. Surgeon happy with op nothing unexpected. Awaiting pathology results, will get those in a couple of weeks along with catheter and staples removal.

All in all happy with my recovery so far no real issues to report, nursing staff were brilliant never allowing me to be in discomfort or pain (had my fair share of narcotics but for the last couple of days only paracetamol). Plenty of bruising from a number of needle and cannula sites but the ol boy and his two mates have escaped punishment. Sleeping and appetite not normal yet but will get better. Nightly self administered claxane injections needed for the next month.

I will however be looking for a refund as the waxing on my leg, back and stomach is only partly completed!!!! Oh and fed up of drinking squash.

Happy to post more details if anyone wants.

Take care all

AL

Ps don't get picked up after an op in a z4!

User
Posted 08 Mar 2016 at 16:14
AL

Good to hear all went as well as planned. Pleased to hear your three pals escaped unscathed. I know what you mean about the squash.

Now it is time to take it easy but keep mobile.

Thanks Chris

User
Posted 08 Mar 2016 at 16:24

Glad it all went according to plan Al.

You must have looked very sporty in the Z4, even if you didn't feel like it!

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2016 at 17:29

Ditch the squash !!
Glad it went well

User
Posted 08 Mar 2016 at 20:01
Al

Soon as you can have a glass of the good stuff to celebrate.

Take things easy though

Xx

Mo

User
Posted 08 Mar 2016 at 23:13

Hi Al,

Glad op went well. Don't be tempted to do too much too soon, you have just undergone very major surgery and complete healing takes time.

Barry
User
Posted 22 Mar 2016 at 14:08

Very good news AL!

Sounds like you are well on the way with your recovery.

Hopefully the PSA test will confirm your histology results.

Best wishes
Luther

User
Posted 22 Mar 2016 at 14:34

Well done Al. So pleased for you.

Just remember to take it easy. Don't get carried away by the excellent results. A little caution now could make all the difference

We can't control the winds - but we can adjust our sails
User
Posted 22 Mar 2016 at 18:03
Really good news especially the change in staging.
User
Posted 22 Mar 2016 at 18:18
A

Well done to you and of course your medical team. As J said do not get carried away and do too much.

Thanks Chris

User
Posted 22 Mar 2016 at 19:12
AL

fabulous news, a better than expected pathology report, healing well and continence already looking good.

Time to celebrate but do listen to the other Men who have been through this, take it steady.

as far as naming surgeons, hospitals etc then the site has quite a strict rule on this, it is to protect everyone I think including PCUK. You can say which hospital, NHs or Private and refer to the surgeon as Mr P or similar. You can give out a name in context of a published article they have written I believe.

i wish you all the best

xx

Mo

User
Posted 16 May 2016 at 14:51
Great news, definitely a day to celebrate!

Always good to see encouraging posts like this

Best wishes,

Arthur

User
Posted 16 May 2016 at 15:24
Great news on a good score !

John

User
Posted 16 May 2016 at 16:59

A/L good score and I bet you are well chuffed about it. I was in Jan this year when given a 0.01 and again last week.

Very good reason to celebrate and like you I have been on Cialis 20 mg for the last month and there are Deffinitely stirrings afoot, I managed to get a pump prescribed as well.

Best wishes for the future low scores

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 16 May 2016 at 17:42

Lovely news Amarone Lover. Very pleased for you.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2016 at 19:41
A

Great news, long may it continue. Remember the pump is another aid to rehabilitation.

Thanks Chris

User
Posted 22 Aug 2016 at 21:00

Glad (most) things are going well for you Al.

Well done on the recent PSA.

I'm sure the rest of it will improve as time goes on.

All the best to you too

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2016 at 23:32

Great update - glad that all is going in the right direction :-)

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

Show Most Thanked Posts
User
Posted 22 Feb 2016 at 14:31
Hi Mr. Lover,

Sorry to hear you are joining us. I had my prostate removed 11 months ago. All is going well. Hope all goes well for you. Please see my journey on my profile.

Regards,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 22 Feb 2016 at 14:55

Hello Amarone Lover and welcome to the site.

Sad that you find yourself here, but with no symptoms to speak of it was lucky you had the routine health check.

It isn't at all odd that you should feel better and less like a Zombie than you did. A lot of people on here, men and their wives and partners like me, will tell you that the waiting, the wondering, the fear and the "what ifs" are possibly harder to take than the knowledge that you do, in fact, have cancer.

You want the thing out and have made your decision. There are also people on here that will definitely agree with you that the dead don't have sex and life is more important. We each make our choices according to what we hope and pray will be the right one but whatever happens in the future, this is your choice and hopefully it will all work out right for you.

Glad you found us, even if the reasons are pretty naff!!

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2016 at 14:58

Hi Paul,

Thanks very much for the reply.

Can I ask if you had any treatment post op ie rt or ht. It hasnt been mentioned for me (the bicalutamide is only a short course) or I guess they may wait and see how the op goes.

Regards

AL

 

 

User
Posted 22 Feb 2016 at 15:12

Hi Sandra,

Thanks for the reply.

Yes the routine check may well have saved my life but really should have had a psa earlier in life as father had PCa (although he died with it not of it), but you never think it will happen to you.

It's good to chat with others in a similar situation but very difficult emotionally with close friends and family, still haven't told my mum as she worries about anything and everything so have decided to wait until I have an op date before telling her-that's not going to be fun.

Regards

AL

 

User
Posted 22 Feb 2016 at 21:06
Hi Amarone lover

oh man I love your choice of wine ....

So sorry to find a fellow fan on this forum though. Thank goodness things have moved quickly in your diagnosis and that you have been able to choose your treatment path. Telling family and friends is always a tough call.

I hope everything goes smoothly with your suregry et al.

Best wishes

xx

Mo

User
Posted 22 Feb 2016 at 21:18

Hi AL,

Best wishes on your cancer journey. It would be appreciated if you will clarify whether you had the PSMA scan or the PET/CT F18 Choline one, as these are two different scans which you appear to have combined into one. A link comparing the two :- http://www.ncbi.nlm.nih.gov/pubmed/24072344

and

 http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

 

 

 

Edited by member 22 Feb 2016 at 22:00  | Reason: Not specified

Barry
User
Posted 23 Feb 2016 at 09:41

Hi Barry,

 

Thanks for the reply.

I have almost certainly confused myself (during numerous recent foggy moments!!) with what I was told, what I have read and what actually happened.

Going back over the info this morning what I do know is that the uro has written down "PSMA Choline PET/CT". When I asked the nurse at the clinic about the injection she told me it was a gamma emitter with a half life of 68 minutes (which points to Ga 68) so probably got confused as F18 rather than Ga68 is mentioned on their website.

I will try and get a bit more clarification and let you know.

Regards

AL

 

User
Posted 23 Feb 2016 at 14:42

Thank you AL,

I have had the Choline scan but the 68 Gallium PSMA one was not available in the UK until recently and because of this one of our members had it in Munich. I am particularly interested as if my PSA continues to rise I will be seeking the PSMA one in the UK and failing that in Germany.

Barry
User
Posted 23 Feb 2016 at 15:11

Hi Everyone,

 

Op scheduled for next Thursday(3/3) and everything crossed for the start of my recovery.

 

Cheers

AL

User
Posted 23 Feb 2016 at 17:04

AL

Good to know you have made your decision. Now you need your shopping list for the trip. There have been some good lists of bits to get for your op and tips for the journey. I can never find the conversations but the link below is a recent one and I am sure our caring members will be along soon with more items. All the best for your op My number one tip is no straining to pass that first motion post op.

http://community.prostatecanceruk.org/posts/t11307-Operation-29-Dec#post139160

Thanks Chris

 

User
Posted 02 Mar 2016 at 14:02
My big op day tomorrow, booked in for five days. Feeling a little dizzy/lightheaded over the last couple of days not sure if it's the anxiety about the surgery or side effect of the bicalutamide. I would just like to take this opportunity to thank everyone for their advice and support . I will post again when daytime tv becomes intolerable (which will be sooner rather than later!).

Can't wait to open the amarone😀

Cheers

AL

User
Posted 02 Mar 2016 at 14:15

All the very very best from me. You'll be fine. Red wine is essential for recovery I found although most will disagree. Good luck
Chris

User
Posted 02 Mar 2016 at 14:15
Amarone

Hope all goes well for the OP tomorrow. Will have to look out for the wine.

Thanks Chris

User
Posted 02 Mar 2016 at 14:23

Good luck Al. I'm sure you'll be fine, even allowing for daytime TV !

I won't even cross my fingers. You won't need me to.

All the best to you

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Mar 2016 at 22:11
Best wishes for the surgery, look forward to hearing from you in a day or so

xx

Mo

User
Posted 02 Mar 2016 at 22:29

Good Luck for tomorrow, Al, hope everything goes well for you.

Best Wishes,

Steve

User
Posted 03 Mar 2016 at 07:37
Hi

All the best for the op today.

Debbie

User
Posted 03 Mar 2016 at 08:55

All the best for your op x

User
Posted 08 Mar 2016 at 15:08
Hi everyone,

Thanks for your best wishes before my op.

Back home yesterday after four nights in hospital. Surgeon happy with op nothing unexpected. Awaiting pathology results, will get those in a couple of weeks along with catheter and staples removal.

All in all happy with my recovery so far no real issues to report, nursing staff were brilliant never allowing me to be in discomfort or pain (had my fair share of narcotics but for the last couple of days only paracetamol). Plenty of bruising from a number of needle and cannula sites but the ol boy and his two mates have escaped punishment. Sleeping and appetite not normal yet but will get better. Nightly self administered claxane injections needed for the next month.

I will however be looking for a refund as the waxing on my leg, back and stomach is only partly completed!!!! Oh and fed up of drinking squash.

Happy to post more details if anyone wants.

Take care all

AL

Ps don't get picked up after an op in a z4!

User
Posted 08 Mar 2016 at 16:14
AL

Good to hear all went as well as planned. Pleased to hear your three pals escaped unscathed. I know what you mean about the squash.

Now it is time to take it easy but keep mobile.

Thanks Chris

User
Posted 08 Mar 2016 at 16:24

Glad it all went according to plan Al.

You must have looked very sporty in the Z4, even if you didn't feel like it!

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2016 at 17:29

Ditch the squash !!
Glad it went well

User
Posted 08 Mar 2016 at 20:01
Al

Soon as you can have a glass of the good stuff to celebrate.

Take things easy though

Xx

Mo

User
Posted 08 Mar 2016 at 23:13

Hi Al,

Glad op went well. Don't be tempted to do too much too soon, you have just undergone very major surgery and complete healing takes time.

Barry
User
Posted 09 Mar 2016 at 08:26
It's difficult to get the compromise right between resting and exercising. My mind is quite active and I want to push on and I'm not really one for sitting still (unless there is some good sport on TV ) I think I will just do a little more and rest a little less than the day before-simples!

AL

User
Posted 22 Mar 2016 at 13:47
Good afternoon everyone,

I am feeling rather pleased after yesterday's visit to consultant and thought I would share with you.

Had all 22 staples removed with no fuss or pain.

Had ct scan to check bladder and then had catheter removed, a bit of discomfort but only lasted a few seconds. Wore pad until nighttime, quite a few dribbles, but overnight completely dry (did have to get up 3 times though) and today I'm almost dry even after a gentle walk to village. I know it's early days yet but it's all pointing in the right direction. Still stingy when I pee though.

Good news also from histology-all cancer removed with clear margins, none in lymph nodes or seminal vesicles so staging changed from T3b to T2b. At this point in time I do not need any further treatment, however I will have a super sensitive psa test early May so things may change again.

I mentioned to the consultant that I write on this forum and he was more than happy to be mentioned by name along with the hospital where I had the op. I know there are rules for this so maybe someone could advise. Thanks.

I hope this brings a little help to others and to know that in the doom and gloom of Pca there is a lot of light.

Best wishes to you all

AL

User
Posted 22 Mar 2016 at 14:08

Very good news AL!

Sounds like you are well on the way with your recovery.

Hopefully the PSA test will confirm your histology results.

Best wishes
Luther

User
Posted 22 Mar 2016 at 14:34

Well done Al. So pleased for you.

Just remember to take it easy. Don't get carried away by the excellent results. A little caution now could make all the difference

We can't control the winds - but we can adjust our sails
User
Posted 22 Mar 2016 at 18:03
Really good news especially the change in staging.
User
Posted 22 Mar 2016 at 18:18
A

Well done to you and of course your medical team. As J said do not get carried away and do too much.

Thanks Chris

User
Posted 22 Mar 2016 at 19:12
AL

fabulous news, a better than expected pathology report, healing well and continence already looking good.

Time to celebrate but do listen to the other Men who have been through this, take it steady.

as far as naming surgeons, hospitals etc then the site has quite a strict rule on this, it is to protect everyone I think including PCUK. You can say which hospital, NHs or Private and refer to the surgeon as Mr P or similar. You can give out a name in context of a published article they have written I believe.

i wish you all the best

xx

Mo

User
Posted 22 Mar 2016 at 21:06
Thanks everyone,

I will take all your advice and take it easy, don't want to jeopardise recovery at all.

Mo, As for naming names I don't think I will mention anyone as don't want to drop anyone in it, safer that way.

Cheers

AL

User
Posted 16 May 2016 at 13:28
Hello everyone,

Just thought I would update you all on my latest news. Have just returned from seeing consultant with the result of my first post op. psa test. Level is undetectable at 0.01. I am so relieved and will be celebrating tonight with a curry (after all turmeric is supposed to be good for you!).

So at this point in time no further treatment is required just three monthly psa tests. Only other med is cialis of which I am taking 20mg every three days (since April 1st), seems to be working slowly and as a rough guess may well be half way there😀.

I hope this news helps and gives hope to others. Full info just tap on my profile.

Cheers

AL

User
Posted 16 May 2016 at 14:51
Great news, definitely a day to celebrate!

Always good to see encouraging posts like this

Best wishes,

Arthur

User
Posted 16 May 2016 at 15:24
Great news on a good score !

John

User
Posted 16 May 2016 at 16:59

A/L good score and I bet you are well chuffed about it. I was in Jan this year when given a 0.01 and again last week.

Very good reason to celebrate and like you I have been on Cialis 20 mg for the last month and there are Deffinitely stirrings afoot, I managed to get a pump prescribed as well.

Best wishes for the future low scores

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 16 May 2016 at 17:42

Lovely news Amarone Lover. Very pleased for you.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 May 2016 at 17:42
Thanks Chris/Woody,

Great news for you too. Am seeing my gp tomorrow about more cialis, will enquire about the pump but am quite happy to allow the cialis to do its stuff.

Cheers

AL

User
Posted 16 May 2016 at 19:41
A

Great news, long may it continue. Remember the pump is another aid to rehabilitation.

Thanks Chris

User
Posted 22 Aug 2016 at 20:03
Hi everyone,

Haven't posted much recently but still lurking.

I have a few few things to share including an update on my progress.

First the really good news. Some friends at the local cricket club held an impromptu bbq/fundraising event in July and raised nearly £400 for prostate cancer uk, well done to them all.

Second the good news, have just seen the consultant for my second post op psa and it's still undetectable at 0.01. He was in a really good mood, I asked him if I could start riding a bike and his reply, was I able to ride one before😀. But his answer was yes if I purchased a suitably supportive saddle, will have to look into that.

Thirdly ED still an ongoing, gave up on the 20mg cialis, now taking 5mg daily, full tumescence but no rigidity yet. A few hints lately of early morning action so progress but very slow but nothing that I wasn't expecting . Tiredness and fatigue still an issue, mornings feel great but by the time the olympics or the cricket is on I just have to rest!

Take care everyone , I wish you all the best.

Regards

AL

User
Posted 22 Aug 2016 at 21:00

Glad (most) things are going well for you Al.

Well done on the recent PSA.

I'm sure the rest of it will improve as time goes on.

All the best to you too

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2016 at 23:32

Great update - glad that all is going in the right direction :-)

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

 
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