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New diagnosis - rabbit in headlights

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User
Posted 05 Feb 2022 at 15:02

hello all, my OH has just been diagnosed. He’s 67, fit and healthy or so we thought. I’m quite a bit younger. He has always suffered with slow pee rate and decided to go get it checked in Dec. His father has prostate cancer so he has always been aware and he just felt his pee rate had slowed a bit more.  Thank goodness he did. What has followed has and is a rollercoaster.  I am a cancer survivor (coming up 13 years) so unfortunately know the drill and hoped and prayed we would never have to deal with this ever again.  


So PSA - 14.07 


Gleason 4+3


bone scan on Tuesday.


contained within the prostate.


appt yesterday to discuss rt and ht and hopefully appt w/c 14th Feb with surgeon at addenbrookes to discuss RALP if he is a candidate.  


I think we are hoping we get a choice of RALP or r/t but to be honest I’m grateful we have one option and hopefully it’s curative.


So a week and half in, we are trying to come to terms with the diagnosis (as best we can) and trying to prepare ourselves with what lies ahead.  


Im scared, frightened and like any wife just want him out the other end and fit and well again.  I’m sure I will have lots of specific questions as we move forward.


thanks for reading this x


 


 


 


 


 


 


 

User
Posted 05 May 2022 at 13:09
Results are in and it’s good news!
Clear margins
No node involvement
Gleason remained at 7 and grade remains too.
PSA was 0.04 and next test will be 3 months time.

The left hand tumour was pressing against the outer edge and whilst it hadn’t broken through, within the year it would have been a very different story.
Honestly the relief. Thank you all for all your help and support. I’m so glad I plucked up the courage to post on the forum. Wishing you all well x
User
Posted 07 Feb 2022 at 14:33
My best wishes Jayne for your husband's surgery.

The concensus currently is that the success rate is similar for surgery and radiotherapy. There is a slight tendency for radiotherapy to be preferred for older patients (over 70) and surgery for younger (under 60), for two reasons: it is major surgery which may not be a good idea unless the patient is reasonably fit and healthy (older more likely to have other problems), and RT can have side effects 20+ years later due to exposure of the adjacent bowels and bladder which is significant for those young enough to have a long life expectancy. But obviously the assessment depends on the individual patient.

The other reason to plump for surgery if given a choice is as above, it is possible to have RT later to deal with any cancer missed by surgery, whereas RT damages the tissues in ways which usually make subsequent surgery not available. I would add to that: if the prostate is removed there should be zero PSA and remaining cancer cells are easily detected, while following RT there can be a resting level of PSA which makes it more difficult to detect recurrence.

That is what is happening with me. I had surgery (robotic) nearly six years ago, but routine monitoring eventually showed up residual and increasing PSA so I am currently on hormones with the plan for RT in a few weeks time. And hoping this time PSA will stay down.
User
Posted 10 Nov 2022 at 20:56
Latest PSA test on Friday <0.1. My anxiety was unreal whereas Mike was very laid back about the whole thing. He’s made a great recovery and we have enjoyed lots of fun and adventures post op. We feel incredibly fortunate to be where we are today. Let’s hope this continues 🤞 This time last year we had no clue what lay ahead. We’ve had incredible support from this forum, it’s such a great community. I intend to keep posting and supporting others where I can.
Wishing you all the very best x
User
Posted 09 Mar 2023 at 22:43
So here we are. Nearly a year since surgery……(where has that year gone?), trusted surgeon decided to delay PSA test and wait another month so it was aligned with surgery anniversary. That sent me into a spin I can tell you! All geared up, anxiety levels just about under control, wham - “let’s leave this test for a month”!! Mike quite cool, me not so.

Anyhow, scores are in and latest PSA test today <0.1. No change from 3 months ago. We feel extremely relieved. Appt with surgeon on Monday. We’ve continued with our adventures and intend on having lots more fun. Let’s hope his good health continues 🤞From that first raised PSA test in Nov ‘21 to now, nearly a year since surgery, has been a rollercoaster. ED is still an issue but improving slowly. We’re just grateful to be where we are currently. Huge thank you to this forum for all the ongoing support, will keep posting and supporting x
User
Posted 06 Feb 2022 at 15:10

Originally Posted by: Online Community Member


Hi Jayne, I'm glad he was aware of the disease. It means this is caught reasonably early and hopefully very treatable. Some people are suitable for focal treatment such as HIFU, not yet common in this country and it has its pros and cons. At the moment keep your options open.



In order to have HIFU, the location of the tumour being treated* has to be in a position where the probe can focus on it.  Where this is not the case Cryotherapy may be possible.


*It is more usual these days to only treat with HIFU what is considered a tumour of concern, so a tumour of less significance may not be treated, the idea being to preserve function as far as possible.  The location, extent and grade of the tumour has to be taken into account.  HIFU may need to be repeated.  I had my first treatment in 2015 and the second in December 2021.  I experienced some pain on both occasions but less so the last time as I took most of the supplied pain killers this last time.  The catheter was removed after 8 days and with it the irritation which was responsible for much of the discomfort.  No side effects either time other than a minute amount of blood when I first peed after catheter removed.  The HIFU was given while I was anaesthetised and I returned home on the same day.  In my case the HIFU was administered as salvage treatment for failed RT which is a more usual use for it, although some people have it as a Primary form of treatment.


There are other forms of Focal treatment, as for example Focal Laser Ablation and Irreversible Electroporation but these are not generally available in the UK and may need to paid for by the patient. 


If you wish to consider Focal Therapy I would get a referral  to UCLH who have the most experience of this in the UK.  

Edited by member 06 Feb 2022 at 15:19  | Reason: Not specified

Barry
User
Posted 08 Feb 2022 at 20:27
Good to start pelvic floor exercises before RP. Also bring weight down if overweight and stop smoking, if applicable. I was 68 when I had mine and recovered quite quickly, but everyone's experience is a little different.

Some of the new, focal treatments sound interesting, but may be hard/expensive to obtain; that's if hubby is suitable. I would find out though. Things appear to be changing quite rapidly, despite covid.
User
Posted 15 Feb 2022 at 01:27

Hi Jayne,


Great news that you have options although I know the difficult bit is deciding what is best.


Really pleased about the bone scan result 👍🏽


We went for the surgery option expecting no nerves to be spared and knowing that ART would follow. I think our main aim was trying to get rid of the cancer and just giving it everything we’ve got….so double the side effects if necessary. As it happens they did 50% nerve sparing and it now looks like any further treatment could be classed as SRT instead of ART 🤷🏻‍♀️? So we’re still really happy with our decision. 


Rob had a slight issue with raised bpm so hasn’t started with any erectile medication yet (and not sure we will) going to keep trying the pump and see where that goes. He still has no libido because of HT so this really isn’t an issue for him at the moment, and although I would love for things to be different my only concern as ‘the wife’ is that he’s here with me and hopefully cancer free.


Good luck with whatever you decide and atleast you know things will get moving fairly quickly x

User
Posted 21 Mar 2022 at 20:35

So here we are it's "surgeryeve".  We are as prepared as we can be.  Lets hope and pray Da Vinci works his magic tomorrow and we get the outcome we very much want.  Thank you all for the help, advice, lists of purchases and allaying some of our fears.  Will keep you posted when we are out the other end x

User
Posted 12 Apr 2022 at 20:39
Just popping in to update..... 3 weeks post surgery today. All going well. Continence has been good since catheter was removed. Wearing a level 1 or 2 pad just in case. Small leakage on Saturday eve. Just a reminder that muscles can get tired and it’s early days! He drove for the first time yesterday and all good. Wounds healing nicely, stitches not dissolved yet. He still feels slightly bloated and tummy swollen but definitely going down.

No real curveballs post catheter removal apart from the severe side effects to the taladafill which he stopped and will re-start next week on half dose (2.5mg). Let’s hope he can tolerate 🤞

So he is concentrating on recovery, increasing the walking distances and resting. Religiously doing his pelvic floor exercises (squeezy app is good). So far so good. Next big hurdle is result day on 5th May. It’s little steps and finding out what his limitations are without doing too much and going backwards.
User
Posted 13 Apr 2022 at 14:25

Good to hear JaneyP. Your OH and I are on a similar schedule. I too remain almost completely dry ( trying to retrain my bladder and had one slight leak when I held on for just too long ), wounds have healed well and no significant pain, I am walking regularly and able to drive short distances. I still suffer tiredness / fatigue though so am listening to my body and not rushing back to work yet. My results date is May 6th so got a PSA test booked ahead of that.


hopefully our respective stories can encourage others who are considering surgery. 


regards, GG

User
Posted 25 Apr 2022 at 20:14
5 weeks tomorrow since surgery. Recovery going well. Healing nicely. Wound where they removed the prostate has not completely healed. The top 0.5mm still has to close. He’s still quite swollen which I assume is internal bruising etc. He’s Still feeling quite tired and just trying to figure out what he can and can’t do. He has been despondent regarding his energy levels, so had to remind him (again) it’s early days!!! Afternoon siestas are a must. Still taking it easy (no golf yet). We managed a few days away which was great and a change of scenery with lovely weather. Taladafill re-started last Tuesday on half dose with no side effects so far. Continence is good, just the odd dribble especially later in the evening when muscles are tired or after a glass of red wine 🍷 however, the last 2 days he’s been completely dry. He was 95% continent when catheter removed. However, no really long walks yet so this may well regress. He is religiously doing the exercises via the app. Anxiety is starting to build over test results next week (5th May). What will be, will be but we are desperately hoping for good news. 🤞wishing you all well x
User
Posted 04 Mar 2024 at 20:09

So here we are, nearly 2 years post surgery.  PSA test today and results are good. Mikes PSA is still undetectable <0.10. I still really struggle with the anxiety these tests cause, but we are incredibly relieved. Will keep reading, replying and supporting this wonderful forum as best we can.  Best wishes to you all x

User
Posted 06 Feb 2022 at 11:01

Hi Jayne, I'm glad he was aware of the disease. It means this is caught reasonably early and hopefully very treatable. Some people are suitable for focal treatment such as HIFU, not yet common in this country and it has its pros and cons. At the moment keep your options open.

Dave

User
Posted 06 Feb 2022 at 11:48

Hi Jayne,


It’s such a scary time but of course you are all too aware of that with your own experience. You are obviously very strong if you have already got through that so I’m sure you will both get through this next part together too. 


My husband is 73 but I am a lot younger than him too. Have a look at my profile for his diagnosis. 


He had RALP just before Christmas and is doing really well. Everyone is completely different of course but it has gone so much better than expected so far. Continence is really good. We’re about to start dealing with ED issues (he had 50% nerves spared) but he’s had 6 months of HT so his libido has gone so it hasn’t been a major priority upto this point. 


So just after 6 months I feel a bit like we’re on the other side. My OH had cancer in lymph node (which was removed) so we know more chance of recurrence but we’ll deal with that if and when it happens. 


So many options for you to explore, this is the difficult part, it will feel better once you have a plan in place. 


Best of luck and keep us posted x

User
Posted 06 Feb 2022 at 19:48

My husband was Gleeson  3 + 4 and operated on in July . Before this he had been on active surveillance for a number of years. His father too had Prostate cancer so for us the decision was very easy and he elected for da Vinci surgery . Six months on he is ‘clear’ and doesn’t need pads any more . Advice start pelvic  floor exercises asap and the surgery although tough for the first few weeks , now looking back it seems worth it . If you have RT at first I think  you can’t have surgery at a later date. But you can have RT after surgery.

User
Posted 08 Feb 2022 at 08:49
Hello Jayne. My Hubbie has just been diagnosed too (last week). 3+4 Gleason 7, stage T2b and hopefully contained within the prostate. January has been extremely stressful to say the least.

This forum has been marvellous - so supportive and informative.

We are having a private consultation on Thursday for some extra advice and a second opinion. I think we are edging towards a RP (Hubbie is fit and only 62). He should be able to recover well (already started pelvic floor exercises!).

We’re a Little concerned that NHS treatment in our area will get delayed etc. but hopefully not.

we’re both feeling more normal now and just looking forward to moving on and getting treatment. Best of luck and take care of yourselves.
User
Posted 09 Feb 2022 at 10:40

Morning Jayne


 


I was diagnosed with prostate cancer in June last year and  just wanted to say that I was treated at Addenbrookes . You will be well catered for there, whatever treatment you choose. The consultants have a great deal of experience and expertise and are  at the top of their game. I had my prostate removed on 21/12/21 and 6 weeks on am in a very good position.


 


Ivan

Edited by member 09 Feb 2022 at 10:42  | Reason: Not specified

User
Posted 13 Feb 2022 at 18:23

Hello Jayne


I have replied to your private message and am now responding to your public message.


 


I decided to opt for surgery at Addenbrookes on 04/11/21 and was then given a date for surgery of 21/12/21. Some people have shorter or longer waits. Going private at Addenbrookes would have made no difference at all.  

User
Posted 15 Feb 2022 at 08:23

Morning Jayne


Good news that it appears that the Bone Scan was clear.


 


My lesion was 15 mm in length and 8mm across and the second biopsy found that the cancer was throughout my prostate ( More cancer was found when my prostate was removed and  cut up). The surgeon originally told me that only my left nerve bundle would be sparred but after surgery the surgeon told me that as well as all the left hand side being spared 80% of the right hand side was too.  My continence (7 weeks after surgery and 6 weeks after the removal of the catheter) has, for the last 3 days, been 100% . So, something of a milestone reached and passed in my book.


 


Ivan 

User
Posted 16 Feb 2022 at 15:21

good luck I am sure he will be fine 5 week's will be over in no time I went the rt/ht route and all is good at the moment PSA now 0.01 from 24.9 both treatments seem to have similar success rates 👍

User
Posted 16 Feb 2022 at 15:54

Thanks Gaz and wishing you well. x

User
Posted 16 Feb 2022 at 18:24
User
Posted 13 Mar 2022 at 12:07

 I had no symptoms at all prior to surgery, other than a higher than it should be PSA level. So, it is somewhat surreal that you are putting yourself through major surgery, with all the possible side effects, when outwardly nothing appears to be wrong. It is quite likely that I could have gone another 10 years without realising anything was wrong but it is very likely that at that stage my condition may have been terminal.So needs must and all that. 


 


I am glad that you are well prepared for next week and  wish your husband all the best.


 


Ivan

User
Posted 13 Mar 2022 at 13:58

It's an understandable reaction Jayney. I kept processing similar thoughts before the op. There will be challenges ahead, there's bound to be but I'm certain you will both rise to them. I've still got a long way to go but I'm not floundering yet despite despite the odd curveball. Chris 

User
Posted 13 Mar 2022 at 15:20

Yes, everything is fine my end: 99.99% continent (only have a slight leak when I lift something very heavy),  my energy levels are back to where they were before my operation and the 7 puncture wounds, apart from one which was used to drag the prostate out kicking and screaming, can no longer be seen. The 7 or so days post surgery are the worst as you have a catheter in, are constipated (in my case it lasted 4 days) and are feeling sorry for yourself. After that, especially when I had the catheter removed, you are less like a bear with a sore head ( You will have to give your husband some slack if he appears cross and argumentative all the time).


 


You are in safe and professional hands at Addenbrookes and if your husbands surgery goes as well as mine it will be a walk in the park.


 


Ivan

User
Posted 13 Mar 2022 at 18:02

All the best User 999 for tomorrow which, if it was like mine in December, will be a walk in the park.


 


Ivan

User
Posted 13 Mar 2022 at 19:50

No two people are the same, but if someone is reasonably fit and healthy then the surgery isn't such a big deal, providing the patient doesn't try to be a hero afterwards. Better safe than sorry. Based on the experiences I've seen on here, most patients with Gleason 7 largely regain continence after surgery. The unknown is ED, and the second unknown is how you both cope with the result - few over 60 appear to obtain full recovery.

User
Posted 20 Mar 2022 at 18:45

Wishing your husband all the best for the week ahead. I hope everything goes smoothly and if I can help in any way through sharing our relative experiences ( since my op was late last week ) then do not hesitate to get in touch .


 My immediate advice is just to stay focused on the post op period , in a few days he will be on ‘the other side’ of the op and can channel energy into recovery.


Try not to get too anxious about the day itself , it takes care of itself and by the time he is checked in, meets the team, etc it will be op time before he knows it. ( they even made me walk from the admission area to the theatre 😂 ). I know you will be anxious during the op, and what seemed a moment to me (thanks to the anaesthetic) may seem a lifetime to you, but although this is a major op, it’s a relatively routine one), and the surgeons are highly skilled.


I look forward to hearing news on progress. 


best wishes, GG

Edited by member 20 Mar 2022 at 18:50  | Reason: Not specified

User
Posted 21 Mar 2022 at 21:14

Good luck I am sure you will be fine 👍

User
Posted 21 Mar 2022 at 21:48

Hope all goes well. Don't forget the instilagel and extra thigh straps.👍


Thanks Chris

User
Posted 22 Mar 2022 at 00:16

Thinking of you both. I’m sure all will go really well xx

User
Posted 22 Mar 2022 at 09:04

By now you will be at Addenbrookes (you will have arrived by 7 am) and will have been told whether the surgery will be in the morning or afternoon.


Best wishes for the best outcome.


 


Ivan

User
Posted 22 Mar 2022 at 09:04

Thinking of you both today and OH will be home before you know it 


x 

User
Posted 22 Mar 2022 at 14:12
Good luck to you both today.
User
Posted 22 Mar 2022 at 20:33

Good to hear keep in touch with his progress worst part over now onwards and upwards 👍

User
Posted 22 Mar 2022 at 21:33

Originally Posted by: Online Community Member


Good to hear keep in touch with his progress worst part over now onwards and upwards 👍



thanks Gaz, will do x

User
Posted 27 Mar 2022 at 21:37

I did message you to see how things were going but your in box was full. How are YOU feeling ? My husband said when he was recovering it was all about him and no one asked about me his carer! 
Im hoping he is doing okay too. 

User
Posted 28 Mar 2022 at 15:25

Feeling tired a number of days/weeks after the surgery is to be expected and I certainly didn't regain my pre-operation energy levels until at least 3 after my surgery. As has been said, your husband has undergone major surgery and the damage on the inside is at least 10 times worse than that seen on the outside. Feeling tired is natures way of telling  you to rest and  sleeping is when most of the repair work takes place. I am sure your husband will feel better/more confident when he has had the catheter removed though as I mentioned in a private message that is likely to create new problems ( Incontinence for a number of weeks/months). My continence improved from less than 1% straight after the catheter was removed, to around 70%  a few hours afterwards to 99.99% within 2 months.


Onwards and upwards to infinity as was once said


 


Ivan


 

User
Posted 28 Mar 2022 at 19:29

Interestingly enough, the catheter only started making my "tip" sore after a couple of days of having the catheter in and I found that letting the tubing just dangle down (no underwear and my modesty covered with a long dressing gown) and using a fair bit of instillagel ensured that I was not bothered with that sore "tip" feeling. You (or your husband or both of you!) needs to ensure that the gel is pushed into the hole. Instantaneous relief is then guaranteed.


 


I think you will find that once the catheter is removed, notwithstanding the fresh challenges that will bring, your husband will feel better within himself.


 


All the best for Thursday (cough, cough out!)


 


Ivan 

User
Posted 31 Mar 2022 at 19:56

Originally Posted by: Online Community Member


Great news - hopefully your husband will enjoy regaining some mobility and will be able to get some light walking to help recovery. I hope he is relatively dry but do not despair if not, I think most men are at least a little incontinent to begin with but improve over time. I seem to have been really fortunate, 1 week since catheter removed and no damp patches so far. regards GG



That’s great news GG. He was feeling restricted with the catheter in and a UTI too. He’s looking forward to some light walking and working on the continence. Thank you for your message x 

User
Posted 31 Mar 2022 at 22:24

Think it was about 10 weeks before I was fully continent although was never a major issue. I'm now 2 years on from my operation and lfe in all respects is back to normal. Have a look at my profile if you would like to know more. Good luck

User
Posted 01 Apr 2022 at 17:45

Once the catheter is out you do feel you have started a new chapter and are moving forward.


 


Re incontinence, mine improved to about 70% continent after the first day and then took a number of weeks to improve further. Walking certainly made me leak quite a bit. I wore the incontinence pants for the first month ( though could have got away with wearing the pads) and then reverted to wearing the pads. My continence slowly improved after about 4 weeks and then incrementally seemed to improve daily to where I am today: 99.99% continent with leaks only occurring when I lift something really heavy.


 


Ivan

User
Posted 01 Apr 2022 at 19:36

Originally Posted by: Online Community Member


Once the catheter is out you do feel you have started a new chapter and are moving forward.


 


Re incontinence, mine improved to about 70% continent after the first day and then took a number of weeks to improve further. Walking certainly made me leak quite a bit. I wore the incontinence pants for the first month ( though could have got away with wearing the pads) and then reverted to wearing the pads. My continence slowly improved after about 4 weeks and then incrementally seemed to improve daily to where I am today: 99.99% continent with leaks only occurring when I lift something really heavy.


 


Ivan



thanks Ivan, really useful to know. Only short walks currently and no leakage and a dry night, so let’s see how we get on in the next week or so.  We’re under no illusion, it’s going to take time. He just feels so much better in himself. Wishing you well.  


 


 

User
Posted 13 Apr 2022 at 07:23

Good to hear Jayney and that is "only" 3 weeks after surgery.


 


Onwards and upwards


 


Ivan

User
Posted 13 Apr 2022 at 14:17
Yes Tadalafil can cause side effects. I switched to half dose and that was much better. Also, I found the body adapts, so after a few days the effects were much less.
User
Posted 17 Apr 2022 at 22:46

Glad to hear the operation went well. Been away on holiday to Portugal otherwise I would have posted earlier. Anyway, I hope your other half’s rehabilitation also goes smooth;y.


Regards Marvin

User
Posted 25 Apr 2022 at 21:40

Hi JaneyP, I am glad your OH is making good progress. I am sure he will soon regain energy and fitness. 
Your post prompted me to update on my own journey and like you I am beginning to think about the pathology outcomes. 
All the best for the 5th, I will be thinking of you both.


regards, GG

User
Posted 14 Jun 2022 at 22:45

12 weeks, wow that seems to have flown by….although maybe not for you 🤦🏻‍♀️


He’s doing so well, just hope that wound heals fully very soon.


I’d say don’t let the PSA anxiety get to you too much, but ours is august aswell and I’m already starting to feel it a bit too 🤦🏻‍♀️ I sometimes wonder whether that feeling will ever go away. I’m sure everything will be fine though 🤞🏼


Hopefully he will have some success using the pump aswell. It’s just a rehabilitation tool for us at the moment….when he can be bothered 🙄😂


Onwards and upwards as you say, I’m sure it will just keep getting better from here.


 

User
Posted 06 Aug 2022 at 23:31

That's all looking very good.

Dave

User
Posted 07 Aug 2022 at 02:58

Fabulous news 👍 xx

User
Posted 07 Aug 2022 at 13:49

Good news indeed, Jayney. And for Mike too!


 


Ivan

User
Posted 10 Nov 2022 at 21:26

Brilliant update Jayney, Your support for Mike makes all of us reading this, that little bit happier that we share a world with you in it.


Jamie.

User
Posted 10 Nov 2022 at 21:51

Great post Jayney.

Dave

User
Posted 11 Nov 2022 at 08:02

Originally Posted by: Online Community Member
Latest PSA test on Friday <0.1. My anxiety was unreal whereas Mike was very laid back about the whole thing. He’s made a great recovery and we have enjoyed lots of fun and adventures post op. We feel incredibly fortunate to be where we are today. Let’s hope this continues 🤞 This time last year we had no clue what lay ahead. We’ve had incredible support from this forum, it’s such a great community. I intend to keep posting and supporting others where I can.
Wishing you all the very best x


 


Just brilliant Jayney, so happy for you both xx

User
Posted 11 Nov 2022 at 19:41

Great result Jayney. Long may that be the case.

Ido4

User
Posted 11 Nov 2022 at 21:54
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Mar 2023 at 22:53

JayneP ,great news, really pleased for you both.


Thanks Chris 

User
Posted 10 Mar 2023 at 00:17

Just the best news 👏🏼 so happy for you both xx

User
Posted 10 Mar 2023 at 15:31

That’s great news to hear Jayneyp.  All the very best to you both.


Angex 

User
Posted 10 Mar 2023 at 16:02
🎉🎉🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Mar 2023 at 19:48
👍the best result possible

Cheers
Bill
User
Posted 12 Mar 2023 at 20:35

Great news. Long may it continue. 👍

User
Posted 12 Mar 2023 at 21:54

Great news.

Ido4

User
Posted 25 Aug 2023 at 18:47

First 6 monthly PSA test today and results are good. Mikes PSA is still undetectable <0.10 Both incredibly relieved. These tests really do elevate the anxiety levels. Not sure where we would be without the support of the forum and will keep reading, replying and supporting as best we can.  Best wishes to you all x

Edited by member 25 Aug 2023 at 18:52  | Reason: Not specified

User
Posted 25 Aug 2023 at 19:59

Brilliant news, JayneyP!


Go out there and celebrate!


Best wishes,


JedSee.

Edited by member 25 Aug 2023 at 20:07  | Reason: Not specified

User
Posted 25 Aug 2023 at 20:20

JayneyP, great news, hopefully you willlearn how to relax about results.👍


Thanks Chris 


 

User
Posted 25 Aug 2023 at 20:47

Great news JayneyP. Long may it long may it continue. I think it will be a long while before I can relax when PSA test time rolls around. 

User
Posted 25 Aug 2023 at 23:18

Brilliant news for you both, long may it continue xx

User
Posted 04 Mar 2024 at 20:33

Jayneyp, great news, long may it continue.


Thanks Chris 

User
Posted 04 Mar 2024 at 21:22

Brilliant news. Thanks for keeping us informed. 

User
Posted 04 Mar 2024 at 22:35

Thanks Chris x

Show Most Thanked Posts
User
Posted 06 Feb 2022 at 11:01

Hi Jayne, I'm glad he was aware of the disease. It means this is caught reasonably early and hopefully very treatable. Some people are suitable for focal treatment such as HIFU, not yet common in this country and it has its pros and cons. At the moment keep your options open.

Dave

User
Posted 06 Feb 2022 at 11:38

Thank you for replying Dave, I will look into HIFU. Would be good to know if any of the community here have gone this route. 
Jx

User
Posted 06 Feb 2022 at 11:48

Hi Jayne,


It’s such a scary time but of course you are all too aware of that with your own experience. You are obviously very strong if you have already got through that so I’m sure you will both get through this next part together too. 


My husband is 73 but I am a lot younger than him too. Have a look at my profile for his diagnosis. 


He had RALP just before Christmas and is doing really well. Everyone is completely different of course but it has gone so much better than expected so far. Continence is really good. We’re about to start dealing with ED issues (he had 50% nerves spared) but he’s had 6 months of HT so his libido has gone so it hasn’t been a major priority upto this point. 


So just after 6 months I feel a bit like we’re on the other side. My OH had cancer in lymph node (which was removed) so we know more chance of recurrence but we’ll deal with that if and when it happens. 


So many options for you to explore, this is the difficult part, it will feel better once you have a plan in place. 


Best of luck and keep us posted x

User
Posted 06 Feb 2022 at 15:10

Originally Posted by: Online Community Member


Hi Jayne, I'm glad he was aware of the disease. It means this is caught reasonably early and hopefully very treatable. Some people are suitable for focal treatment such as HIFU, not yet common in this country and it has its pros and cons. At the moment keep your options open.



In order to have HIFU, the location of the tumour being treated* has to be in a position where the probe can focus on it.  Where this is not the case Cryotherapy may be possible.


*It is more usual these days to only treat with HIFU what is considered a tumour of concern, so a tumour of less significance may not be treated, the idea being to preserve function as far as possible.  The location, extent and grade of the tumour has to be taken into account.  HIFU may need to be repeated.  I had my first treatment in 2015 and the second in December 2021.  I experienced some pain on both occasions but less so the last time as I took most of the supplied pain killers this last time.  The catheter was removed after 8 days and with it the irritation which was responsible for much of the discomfort.  No side effects either time other than a minute amount of blood when I first peed after catheter removed.  The HIFU was given while I was anaesthetised and I returned home on the same day.  In my case the HIFU was administered as salvage treatment for failed RT which is a more usual use for it, although some people have it as a Primary form of treatment.


There are other forms of Focal treatment, as for example Focal Laser Ablation and Irreversible Electroporation but these are not generally available in the UK and may need to paid for by the patient. 


If you wish to consider Focal Therapy I would get a referral  to UCLH who have the most experience of this in the UK.  

Edited by member 06 Feb 2022 at 15:19  | Reason: Not specified

Barry
User
Posted 06 Feb 2022 at 19:48

My husband was Gleeson  3 + 4 and operated on in July . Before this he had been on active surveillance for a number of years. His father too had Prostate cancer so for us the decision was very easy and he elected for da Vinci surgery . Six months on he is ‘clear’ and doesn’t need pads any more . Advice start pelvic  floor exercises asap and the surgery although tough for the first few weeks , now looking back it seems worth it . If you have RT at first I think  you can’t have surgery at a later date. But you can have RT after surgery.

User
Posted 06 Feb 2022 at 19:53

Thank you so much for replying. It’s of great comfort to talk to people in the same boat. I know the next week to 10 days will be tough whilst we wait for results of the bone scan. The anxiety is awful and whilst I’m trying to be strong for him I can tell it’s really affecting him. It’s tough.


I will keep you updated. I wanted to send a private message, but I’m not allowed just yet as I’m new to forum. X

User
Posted 06 Feb 2022 at 19:55

Thank you, this is really useful. Wishing you well.

User
Posted 06 Feb 2022 at 19:58

Thank you for replying, it really is useful to hear of these success stories x

User
Posted 07 Feb 2022 at 14:33
My best wishes Jayne for your husband's surgery.

The concensus currently is that the success rate is similar for surgery and radiotherapy. There is a slight tendency for radiotherapy to be preferred for older patients (over 70) and surgery for younger (under 60), for two reasons: it is major surgery which may not be a good idea unless the patient is reasonably fit and healthy (older more likely to have other problems), and RT can have side effects 20+ years later due to exposure of the adjacent bowels and bladder which is significant for those young enough to have a long life expectancy. But obviously the assessment depends on the individual patient.

The other reason to plump for surgery if given a choice is as above, it is possible to have RT later to deal with any cancer missed by surgery, whereas RT damages the tissues in ways which usually make subsequent surgery not available. I would add to that: if the prostate is removed there should be zero PSA and remaining cancer cells are easily detected, while following RT there can be a resting level of PSA which makes it more difficult to detect recurrence.

That is what is happening with me. I had surgery (robotic) nearly six years ago, but routine monitoring eventually showed up residual and increasing PSA so I am currently on hormones with the plan for RT in a few weeks time. And hoping this time PSA will stay down.
User
Posted 08 Feb 2022 at 08:49
Hello Jayne. My Hubbie has just been diagnosed too (last week). 3+4 Gleason 7, stage T2b and hopefully contained within the prostate. January has been extremely stressful to say the least.

This forum has been marvellous - so supportive and informative.

We are having a private consultation on Thursday for some extra advice and a second opinion. I think we are edging towards a RP (Hubbie is fit and only 62). He should be able to recover well (already started pelvic floor exercises!).

We’re a Little concerned that NHS treatment in our area will get delayed etc. but hopefully not.

we’re both feeling more normal now and just looking forward to moving on and getting treatment. Best of luck and take care of yourselves.
User
Posted 08 Feb 2022 at 20:27
Good to start pelvic floor exercises before RP. Also bring weight down if overweight and stop smoking, if applicable. I was 68 when I had mine and recovered quite quickly, but everyone's experience is a little different.

Some of the new, focal treatments sound interesting, but may be hard/expensive to obtain; that's if hubby is suitable. I would find out though. Things appear to be changing quite rapidly, despite covid.
User
Posted 09 Feb 2022 at 10:40

Morning Jayne


 


I was diagnosed with prostate cancer in June last year and  just wanted to say that I was treated at Addenbrookes . You will be well catered for there, whatever treatment you choose. The consultants have a great deal of experience and expertise and are  at the top of their game. I had my prostate removed on 21/12/21 and 6 weeks on am in a very good position.


 


Ivan

Edited by member 09 Feb 2022 at 10:42  | Reason: Not specified

User
Posted 13 Feb 2022 at 14:32

Wishing you well JB and thanks for replying. Let’s see what this week brings 🤞

User
Posted 13 Feb 2022 at 14:33

That’s great to hear Ivan and thank you for  replying. 

User
Posted 13 Feb 2022 at 14:37

Best of luck to you both and keep us posted. I hope we get some sort of plan this week. I think the shock is hard to deal with and I know hubby just can’t believe what is happening and feels like the conversations he’s had to have are about someone else.


 


take care too ❤️

User
Posted 13 Feb 2022 at 17:40

MDT is tomorrow to see if surgery is an option. We know that HT and RT is. Hopefully the results from the bone scan will also be available and show no spread. Keep everything crossed 🤞 the waiting is just horrendous.


one question and I appreciate it’s different in each area........ how long is the wait from seeing the surgeon to surgery? Generally, are we talking weeks or months?

User
Posted 13 Feb 2022 at 18:23

Hello Jayne


I have replied to your private message and am now responding to your public message.


 


I decided to opt for surgery at Addenbrookes on 04/11/21 and was then given a date for surgery of 21/12/21. Some people have shorter or longer waits. Going private at Addenbrookes would have made no difference at all.  

User
Posted 14 Feb 2022 at 22:45
Update from MDT today......
Bone scan is clear (thank goodness)
2 tumours, 1 on left is larger and more aggressive than 1 on right. Talked through surgery with surgeon this evening. No nerve sparing on left possible. 30-40% nerve sparring on right. Unlikely that erectile function will return. Surgery date of 22nd March if we go that way. Think that is the way we are leaning currently.
User
Posted 15 Feb 2022 at 01:27

Hi Jayne,


Great news that you have options although I know the difficult bit is deciding what is best.


Really pleased about the bone scan result 👍🏽


We went for the surgery option expecting no nerves to be spared and knowing that ART would follow. I think our main aim was trying to get rid of the cancer and just giving it everything we’ve got….so double the side effects if necessary. As it happens they did 50% nerve sparing and it now looks like any further treatment could be classed as SRT instead of ART 🤷🏻‍♀️? So we’re still really happy with our decision. 


Rob had a slight issue with raised bpm so hasn’t started with any erectile medication yet (and not sure we will) going to keep trying the pump and see where that goes. He still has no libido because of HT so this really isn’t an issue for him at the moment, and although I would love for things to be different my only concern as ‘the wife’ is that he’s here with me and hopefully cancer free.


Good luck with whatever you decide and atleast you know things will get moving fairly quickly x

User
Posted 15 Feb 2022 at 08:23

Morning Jayne


Good news that it appears that the Bone Scan was clear.


 


My lesion was 15 mm in length and 8mm across and the second biopsy found that the cancer was throughout my prostate ( More cancer was found when my prostate was removed and  cut up). The surgeon originally told me that only my left nerve bundle would be sparred but after surgery the surgeon told me that as well as all the left hand side being spared 80% of the right hand side was too.  My continence (7 weeks after surgery and 6 weeks after the removal of the catheter) has, for the last 3 days, been 100% . So, something of a milestone reached and passed in my book.


 


Ivan 

User
Posted 16 Feb 2022 at 14:51
RALP booked for 22nd March. Decision made. 5 weeks seems a long time but Im sure it will fly by. Will keep you all updated and once again, thank you for the support. I will continue to use this thread as I am sure I will have lots of questions post-op. Jayne
User
Posted 16 Feb 2022 at 15:21

good luck I am sure he will be fine 5 week's will be over in no time I went the rt/ht route and all is good at the moment PSA now 0.01 from 24.9 both treatments seem to have similar success rates 👍

User
Posted 16 Feb 2022 at 15:31

Once the decision is made, Jayne, then it is easier to focus on the end result.  My surgery was around 5 weeks after I made the decision and the time flew by. It would aid continence post surgery if your husband  started pelvic floor exercises as soon as possible and that you use the available time to start buying in  what you need i.e. incontinence pants and pads, a waterproof sheet for the bed, Instillagel to relieve tip of penis pain when the catheter is in ( I have a half full box that you can have for free if that would help).


 


Ivan

User
Posted 16 Feb 2022 at 15:54

Thanks Gaz and wishing you well. x

User
Posted 16 Feb 2022 at 15:55

Thanks Ivan, everything crossed.  I was trying to find on this site a list of things I need to purchase?  Is there one do you know? 

User
Posted 16 Feb 2022 at 16:25

I don't think there is a published list. I read some of the posts and went from there.


 


I would certainly suggest you buy:


A box of 30 Tena (or equivalent) Absorbent level 2 pads


Two or 3 packs of 10 Vivactive (or equivalent) Maxi pants


A box of Instillagel


A soft cotton waterproof sheet ( I bought mine from Dunelm)


I used a separate bed when I had the catheter in and laid on the waterproof sheet  but, fortunately, because I was wearing the incontinence pants I had no leakage on the sheet at all. Although your husband will not be able to drive  for at least 2 weeks after the operation I suggest, especially if you have a luxury car, that you buy a waterproof covering for the driver/passenger seat. Fortunately, I did not leak on the seat as either a passenger or as the driver but it was worth having it there just in case. Finally,  it would be useful if your husband doesn't already have a pair to buy some loose fitting trackie bottoms.


 


Ivan

User
Posted 16 Feb 2022 at 18:24
User
Posted 16 Feb 2022 at 19:59

Thanks Ivan.

User
Posted 16 Feb 2022 at 20:00

Thanks Chris 👍

User
Posted 16 Feb 2022 at 21:21

Glad the decision is made Jayne 👍🏽 We bought everything that was recommended but actually found we didn’t need a few of them (would buy it all again though just to be prepared). We really expected the worst with rob being a bit older too (and consultant possibly expected it) but it’s been so much better than we could ever have imagined. Keep positive and hopefully we can all between us help with any advice you made need xx

User
Posted 16 Feb 2022 at 22:42

Im feeling a bit more in control now we have a plan. Everything crossed that the surgery is successful and we get the desired outcome. I did try to send you a private message but your mailbox is full? Hope Rob is progressing well and thank you for your support xx

User
Posted 13 Mar 2022 at 11:51

After having some time out, which did us the world of good and a great distraction, here we are, just over a week until surgery. The anxiety is building. The supplies are purchased. The unknown is the worst....... how will he recover, how will he cope, will they remove the cancer with clear margins, will he gain his continence.........lots of questions. I know it’s one step at a time, but you can’t help your mind running away with you (usually at 3am). I have to say hubby has committed to all the advice, exercises etc. so we are just keeping everything crossed for a positive outcome. The 22nd March will come round soon enough I know. I still can’t believe what we are about to endure when he looks so well and healthy. Sorry for the download! 

User
Posted 13 Mar 2022 at 12:07

 I had no symptoms at all prior to surgery, other than a higher than it should be PSA level. So, it is somewhat surreal that you are putting yourself through major surgery, with all the possible side effects, when outwardly nothing appears to be wrong. It is quite likely that I could have gone another 10 years without realising anything was wrong but it is very likely that at that stage my condition may have been terminal.So needs must and all that. 


 


I am glad that you are well prepared for next week and  wish your husband all the best.


 


Ivan

User
Posted 13 Mar 2022 at 13:58

It's an understandable reaction Jayney. I kept processing similar thoughts before the op. There will be challenges ahead, there's bound to be but I'm certain you will both rise to them. I've still got a long way to go but I'm not floundering yet despite despite the odd curveball. Chris 

User
Posted 13 Mar 2022 at 14:48

Originally Posted by: Online Community Member


 I had no symptoms at all prior to surgery, other than a higher than it should be PSA level. So, it is somewhat surreal that you are putting yourself through major surgery, with all the possible side effects, when outwardly nothing appears to be wrong. It is quite likely that I could have gone another 10 years without realising anything was wrong but it is very likely that at that stage my condition may have been terminal.So needs must and all that. 


 


I am glad that you are well prepared for next week and  wish your husband all the best.


 


Ivan



Thank you Ivan, I no doubt will be back on here asking lots of questions post surgery.  As you say, needs must and all that. We’re keeping everything crossed. Hope you are making a good recovery?

User
Posted 13 Mar 2022 at 14:50

Originally Posted by: Online Community Member


It's an understandable reaction Jayney. I kept processing similar thoughts before the op. There will be challenges ahead, there's bound to be but I'm certain you will both rise to them. I've still got a long way to go but I'm not floundering yet despite despite the odd curveball. Chris 



Thanks Chris, hope you are making good progress, despite the curveballs. The thoughts at 3am are not great, but as you say understandable. Needs must, and I’m sure there will be questions as we progress on this flight path! 

User
Posted 13 Mar 2022 at 15:20

Yes, everything is fine my end: 99.99% continent (only have a slight leak when I lift something very heavy),  my energy levels are back to where they were before my operation and the 7 puncture wounds, apart from one which was used to drag the prostate out kicking and screaming, can no longer be seen. The 7 or so days post surgery are the worst as you have a catheter in, are constipated (in my case it lasted 4 days) and are feeling sorry for yourself. After that, especially when I had the catheter removed, you are less like a bear with a sore head ( You will have to give your husband some slack if he appears cross and argumentative all the time).


 


You are in safe and professional hands at Addenbrookes and if your husbands surgery goes as well as mine it will be a walk in the park.


 


Ivan

User
Posted 13 Mar 2022 at 18:02

All the best User 999 for tomorrow which, if it was like mine in December, will be a walk in the park.


 


Ivan

User
Posted 13 Mar 2022 at 19:50

No two people are the same, but if someone is reasonably fit and healthy then the surgery isn't such a big deal, providing the patient doesn't try to be a hero afterwards. Better safe than sorry. Based on the experiences I've seen on here, most patients with Gleason 7 largely regain continence after surgery. The unknown is ED, and the second unknown is how you both cope with the result - few over 60 appear to obtain full recovery.

User
Posted 14 Mar 2022 at 16:35

Originally Posted by: Online Community Member


No two people are the same, but if someone is reasonably fit and healthy then the surgery isn't such a big deal, providing the patient doesn't try to be a hero afterwards. Better safe than sorry. Based on the experiences I've seen on here, most patients with Gleason 7 largely regain continence after surgery. The unknown is ED, and the second unknown is how you both cope with the result - few over 60 appear to obtain full recovery.



thanks Peter51. Yes we’re hoping the continence will return and he can have a decent quality of life. As for the ED it’s going to be very unlikely, no nerve sparing on one side and 30-40% on the other. Surgeons says it be 3-4 years for ED to return if at all. It saddens me a great deal, for him, for me, for us, but would rather have him here. 

User
Posted 20 Mar 2022 at 18:45

Wishing your husband all the best for the week ahead. I hope everything goes smoothly and if I can help in any way through sharing our relative experiences ( since my op was late last week ) then do not hesitate to get in touch .


 My immediate advice is just to stay focused on the post op period , in a few days he will be on ‘the other side’ of the op and can channel energy into recovery.


Try not to get too anxious about the day itself , it takes care of itself and by the time he is checked in, meets the team, etc it will be op time before he knows it. ( they even made me walk from the admission area to the theatre 😂 ). I know you will be anxious during the op, and what seemed a moment to me (thanks to the anaesthetic) may seem a lifetime to you, but although this is a major op, it’s a relatively routine one), and the surgeons are highly skilled.


I look forward to hearing news on progress. 


best wishes, GG

Edited by member 20 Mar 2022 at 18:50  | Reason: Not specified

User
Posted 21 Mar 2022 at 20:35

So here we are it's "surgeryeve".  We are as prepared as we can be.  Lets hope and pray Da Vinci works his magic tomorrow and we get the outcome we very much want.  Thank you all for the help, advice, lists of purchases and allaying some of our fears.  Will keep you posted when we are out the other end x

User
Posted 21 Mar 2022 at 21:14

Good luck I am sure you will be fine 👍

User
Posted 21 Mar 2022 at 21:48

Hope all goes well. Don't forget the instilagel and extra thigh straps.👍


Thanks Chris

User
Posted 22 Mar 2022 at 00:16

Thinking of you both. I’m sure all will go really well xx

User
Posted 22 Mar 2022 at 09:04

By now you will be at Addenbrookes (you will have arrived by 7 am) and will have been told whether the surgery will be in the morning or afternoon.


Best wishes for the best outcome.


 


Ivan

User
Posted 22 Mar 2022 at 09:04

Thinking of you both today and OH will be home before you know it 


x 

User
Posted 22 Mar 2022 at 14:12
Good luck to you both today.
User
Posted 22 Mar 2022 at 19:51

It’s been a long day. Surgery went as planned with no complications. Hopefully he will be back on the ward soon and home tomorrow. He’s over the first hurdle! Phew! 


The support from this forum is priceless - a huge thank you from both of us x

 
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