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User
Posted 24 Dec 2021 at 19:06

Hi all - I hope you are all looking forward to the peace and respite of Christmas.

I have been reading the site for a while whilst I underwent various tests and am now looking for the benefits of your experience. 

I was referred due to a high PSA and have now completed blood tests, pelvis/prostate MRI, biopsy and bone scan. 
I am 61, PSA 16.5, Gleason 3+3, T2, tumour fully contained and on one side of prostate. Scans revealed T2N0M0.

I met the oncologist and then a urology surgeon They are ruling out AS ( due to high-ish PSA, I have a small prostate). The oncologist is offering 20 days Radiotherapy preceded by 3 months HT. she emphasised both RT/HT and surgery options are curative and my prognosis is very good. She seems to think RT is the better option but conceded as an oncologist she would think that.

The surgeon leaving it very much up to me as both pathways have similar (hopefully positive) outcomes. He can perform radical prostatectomy (robotic).

I realise it may come down to me weighing up the side effects off each option. I am wary about RT/HT mainly due to the longer treatment duration and it’s impact on my work, the risk of weight gain (silly I know but I am very anxious and quite a rigid eater, carefully controlling weight), the bone scan revealed possible Osteoperosis and I also worry that HT will cause bone thinning.

Surgery seems a shorter, sharper option ( although I don’t take it lightly and realise there are risks of ED, incontinence ).

The oncologist stressed there is no rush to treatment, but sensing I am prone to ruminating she thought I should set a date ( a week or so), weigh up the options and reach a decision. I suspect she is right . I will end up overthinking. (the surgeon also advised the theatre list is about 3 months and could get worse due to the Omnicron situation. 

I know only I can decide on which treatment to take but would greatly appreciate the views of those of you who are more knowledgeable on the subject than I.

merry Christmas to you all 

User
Posted 25 Dec 2021 at 15:40

Hi Glasgow guy merry Christmas to you I had a choice vto make this time last year Gleason 9  PSA 25.9  both sides off prostate but contained elected for radio therapy and hormone therapy commenced hormone therapy last December and radiotherapy commenced in March 37 fractions one year on PSA 0.01 at last test and doing ok I feel  I worked all the way through radiotherapy with very few problems whatever you decide good luck  with your treatment gaz 

User
Posted 28 Dec 2021 at 18:50

Hi GlasgowGuy

 

sorry to hear about your diagnosis. Its not an easy decision. I was faced with the same this year and opted for RP. Check out my main thread for the details. I could not face going through RT over several weeks and just wanted it out having monitored my PSA for 15 years. Its more difficult for you as youve only just discovered you have a problem and in my case (T2BN0M0 multifocal PSA 6.3) both oncologist and surgeon said they would opt for surgery if they were me. At 60 you are relatively young so surgery is often suggested . all I can say is that if you go with a high volume surgeon with good stats your continence should be ok after a few months (I was dry almost immediately) and regarding ED if they can do nerve sparing then that improves your chances of a relatively normal sex life. Albeit without ejaculation which I do miss. Apparantly SRT is an option after RP if you do get a recurrence and was another reason I went with surgery. Good luck with your decision and make sure its your decision. Trust your gut having done all the research. You will feel much better when youve made a decision. 

User
Posted 13 Mar 2022 at 15:45

Hi Glasgow Guy. I'm sure everything will be fine. Good luck. I would not consider my posts as a typical outcome from RP. I had open surgery on a more advanced cancer, including lymph nodes removal. I'm sure you will recover better and quicker. I didn't have much of an appetite for a few days (probably the effects of anesthetic). Just eat what you fancy but plenty of fibre to keep you bowels moving without having to push. I can't really advise on a return to work but working from home seems a good starting point. Maybe reduced hours initially  but just don't push yourself. Chris 

User
Posted 13 Mar 2022 at 15:47

The catheter is no big deal, really. And you’ll enjoy peeing like a teenager when it comes out. 

Eat prunes and drink prune juice. I was not constipated at all but hearing from friends who were, BEST AVOIDED. 

I had a big scar so YMMV but I REALLY appreciated the hernia belt I bought. 

My fear was not of the op but of the side effects. Daily tadalafil 5mg from day 1, or before if you can get it, helps. 

And Kegel till your eyes pop. 

Good luck: sounds like you’re in good hands

 

SUM

User
Posted 25 Dec 2021 at 10:21

I have just undergone RALP (on 21/12 in fact) and chose that rather than RT as:

 

a) I have never liked the idea of being treated with something that is potentially toxic;

b) I liked the idea that surgery would, hopefully, remove, the cancer once and for all and would be a one-off treatment (i.e. it would not go on for months and months);

c) Surgery meant that if it was not successful I could always then have RT. If you have RT first you usually cannot then have your prostate removed.

My PSA level in September was 6.01 and my cancer grade was deemed to be category 2 ( Gleason 3+4 =7, with less than 5% category 2, the rest being category 1). The cancer was deemed to be confined within the prostate.If the cancer had spread outside of my prostate then I would have probably foregone the surgery and opted for RT.

As Chris has mentioned, your PSA score is higher than one would expect with a Gleason 3+3=6 score but there could be reasons for this that are unrelated to the cancer. Additionally, it could well be that the biopsy has not picked up the extent of the cancer and there is more of it than the biopsy suggests. My original biopsy in June found only 3 out of 13 cores to be cancerous (Gleason 3+4=7) but my biopsy in September found 15 out of 19 cores to have it. The Gleason score was exactly the same, but the cancer was throughout my prostate rather than being confined to a small area.

 

Good luck with whatever decision you make

 

Ivan

Edited by member 25 Dec 2021 at 16:52  | Reason: Not specified

User
Posted 27 Dec 2021 at 00:36
Currently, around 20% of hospitals in England do not meet the minimum standards for scanning at diagnosis stage- either they biopsy first and scan second, or they cannot offer mpMRI let alone the most complex tracers. NHS England withdrew the funding for Gallium 68 PSMA pre-treatment long before Covid. About 45,000 men are diagnosed with prostate cancer each year here, G68 is produced in only a very small number of labs, production is highly unreliable, it travels badly and is very expensive. It is not considered realistic or necessary for newly diagnosed men to be offered PSMA - better that the limited resources are targeted to men with suspected recurrence, where gallium, axumin and choline come into their own and can really offer something.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2021 at 15:53

Originally Posted by: Online Community Member

a wee reminder of my original post - I am keen to come to a decision whilst I am off work for holidays so would appreciate advice, views of others on preferred option from the two I am offered (RT with 3 month HT preceding, or RP).

Hi GG

I am aged 65 and was G3+3 and PSA of 14.2, but a November biopsy changed it to G3+4 (3 of 11 cores on the right side with one of them being 80% grade 4 cancer, 1 of 9 cores on the left side with that one being 5% grade 3 cancer). My consultant has recommended RP, with RT as a close second and AS as the least favoured option. I am favouring RP as both RP and RT have side effects, but I think RP offers a bit more certainty. My general health is good, so fingers crossed I won't be unlucky and have particularly severe side effects (but am very aware there is no guarantee). My understanding is that if the cancer returns after RP I can then pursue RT, but doing it the other way round is more difficult (i.e. RP after RT).

I have had conversations recently with someone who was aged 67, PSA 7, G3+3 and who decided to skip any biopsies and go for RP. His logic was that the cancer was never going to get any better, so he would have surgery while he was relatively young and in good health, rather than waiting until he was in his 70s and recovery would take longer. In this he was supported by a long term, trusted GP who had himself had RP. Six weeks post OP he is almost fully continent, but still too early to say regarding ED.

Everyone has to consider their own particular circumstances, but as I say, I am minded to opt for RP.

Regards

Paul

User
Posted 30 Dec 2021 at 22:29
Things usually look far better once you have made a decision. Others will advise you to do the kegels and get fit and lose weight, etc, etc. My advice is to get a holiday or a couple of weekends away (covid permitting), have loads of sex and just take joy in doing normal couple things. That was the advice our uro gave John and I know that he later wished very much that he had listened.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Mar 2022 at 15:14

Hi all, well the surgeon was right, he estimated around three months on the waiting list and here I am almost three months on preparing for my RP later this week. I am really nervous but also thankful that I have this treatment option. It seems the surgeon (at QEUH in Glasgow) is really experienced in robotic prostatectomy and I cannot fault the NHS - everyone has been great. 
Can those who have been through this op offer any advice or reassurance ? I process things better when I know what lies ahead. 

I am also wondering about practicalities, what foods I will be able to eat when I get home,  can i do light shopping, how long should I be off work ( I do a desk job and can work from home ).

And call me a big girls blouse but the thought of the catheter makes my eyes water, and I wonder how I’ll get on with it.

I’ll post after the op on my experience in the hope of helping others 

regards, GG

User
Posted 13 Mar 2022 at 18:24

Hi GG

Without repeating what others have said, well apart from the fact that although the catheter is a nuisance it is no more than that, I will just say this. You can eat whatever you like after surgery, though you might want to eat more fibre  based foods to ensure you are not constipated for too long (though the hospital will, I am sure, give you a pack or 2 of senna tablets to take home with you). I was told by my consultant that  I should go out walking as soon as I felt up to it but not to overdo it and not to lift anything too heavy (He said anything heavier than a  1KG bag of sugar would be a no, no for the first couple of weeks). You should also not drive for the first 2 weeks after surgery and need to bear in mind that you will have a catheter in post-surgery for at least the first 7 days. So, walking around with that in and the need to periodically empty the bag could present challenges.Re work, if you are office based and no lifting is involved then apart from the fact that you won't be able to drive for 2 weeks and will have a catheter in for at least the first 7 days then going into work should not be a problem.But, if you don't have to why would you want to? Also, you may well feel tired for a few weeks after surgery ( I know I did) and might find that you need to have a little snooze during the day.

Ivan

 

 

 

Ivan

User
Posted 13 Mar 2022 at 18:45

Ask the hospital for some instilagel or hydrocaine in case the catheter makes the eye of the penis sore. Try and avoid constipation, as already said, keeping mobile and fluid intake should help. Snug but not tight short type underwear helps keep the catheter from moving around.

 

A packet of your favourite biscuits or crisps are handy if you lose your appetite. A non fizzy drink makes a change from water. Ask the hospital for some ear plugs and an eye mask, you will still be disturbed for regular obs.

 

Get a couple of spare thigh straps so you can shower. Showe put a dry strap on the other leg and transfer the bag to the dry strap.

 

Have a look at this post.

https://community.prostatecanceruk.org/posts/t24485-Going-in-for-the-Operation---any-tips#post240314

 

Hope all goes well.

Thanks Chris

 

 

User
Posted 13 Mar 2022 at 20:52

Originally Posted by: Online Community Member
You should also not drive for the first 2 weeks after surgery and need to bear in mind that you will have a catheter in post-surgery for at least the first 7 days ...... Re work, if you are office based and no lifting is involved then apart from the fact that you won't be able to drive for 2 weeks and will have a catheter in for at least the first 7 days then going into work should not be a problem.

Many car insurers say 2 weeks for any abdominal surgery but some have different rules - either 4 weeks or 'when the surgeon clears you to drive' or 'when you think you can do an emergency stop safely'. You will need to check with your own insurer. If you have a company car, they tend to be more risk averse: my husband's company car insurance wouldn't cover him for 12 weeks and they also wanted a letter from the surgeon confirming he was fit to drive (which the urologist refused to provide). So in the event, he worked from home from about week 9 / 10 and went back to the office at the start of week 13. He did have open surgery though - generally, it is assumed that if you have had robotic / keyhole RP, you may be fit to go to work from about week 6 or 8 ... depending on how continent you are. 

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

User
Posted 13 Mar 2022 at 22:10

My husband had this op last July. Daily pelvic floor exercise after the catheter is removed. He uses the squeeze nhs app. Stock up on pads for when the catheter comes out and he had to ditch the boxers for briefs as they hold the pads in place. He did gentle exercise and although didn’t want to take the oral morphine , pain on day two when at home was significant and he took it for a couple of days. When the catheter is removed incontinence  can be depressing , what goes in goes out almost straight away . But now six months later he is totally dry . Psa undetectable too so the operation was well worth the worries. You might also want a bucket to stand the catheter bag in at night. Stay clear of caffeine and alcohol for a while as these are bladder irritants . Good luck and I hope all goes well.

User
Posted 13 Mar 2022 at 23:10

Best of luck GG.

My husband is a bit older than you and have to say we’ve been really surprised how well things have gone since surgery in terms of recovery.

He ended up having his catheter in for 4 weeks but did really well with it and it didn’t cause too many problems apart from a couple of times where it blocked up a bit with small clots (which was to be expected). I think it’s just about finding your own routine with emptying and showers etc. He had prune juice along with his movicol sachets and ate to a degree what he wanted but meals I made with lots of fibre. We kept up regular painkillers (paracetamol mainly) for about a week whether we thought he needed them or not….just in case. 

I would say just take it easy early on, definitely don’t lift anything….so shopping might be a problem initially. Rob felt a bit tired for a few weeks but he’s 12 weeks post op this week and I would say pretty much back to normal. Continence is really good, just occasional leakage with alcohol. ED still a problem but he also still has HT still in his system. 

Really hope you’re op goes well and recover quickly.

 

User
Posted 18 Mar 2022 at 08:37

Fantastic news hope you recover quickly 👍

User
Posted 18 Mar 2022 at 08:59

Great post 👍🏽 Glad you’re on the other side and feeling ok. Wishing you a full and speedy recovery x

User
Posted 06 May 2022 at 17:46
Hi GG

This is great news, so very pleased! Phew what a relief. Enjoy your glass of 2. So thrilled. Keep well x

User
Posted 06 May 2022 at 17:51

Good news indeed

 

Long may it continue

 

Ivan

User
Posted 06 May 2022 at 18:08
Nice one ! Don’t hold back 🍷
User
Posted 15 Nov 2023 at 22:00

Hi, 

I'm in a very similar position but a few months behind you.

Best of luck with the injections mate. They don't hurt and Invicorp was quite successful for me.

Adrian

User
Posted 19 Nov 2023 at 16:57

MikeLaw

We have something in common. I was 72 when I had prostatectomy 12 years ago. I chose surgery because the cancer was well contained with good margin, I was fit with no other health issues and the RT route, 12 years ago, was still in the 'experimental' stage; situation is much better now. So it is a little more difficult for you to choose. I was lucky that I had a friendly consultant who was very experienced in robotic surgery. He made it quite clear to me that because of my age even nerve sparing surgery will, if anything, make my ED situation worse, and that I should not expect to return to my presurgery erectile function. We weren't bothered about that because my erections were beginning to wane and we were in the process of doing something about that. As for incontinence he expected me to regain full continence. He was right about the former but not quite so about my continence. I did not regain my continence fully – I am 99.9% continent – I tend to leak when sexually excited and when I orgasm. Would I take the same route again? Yes, definitely.  To cut a long story sort, through our love, determination, imagination and good communication we were able to re-establish our sex life and we are now leading a happy ‘new-normal’ life. In my view ‘nerve sparing’ surgery is a little oversold. I have come in contact with many men (over 60) who have had nerve sparing surgery but haven’t returned to their original state; they still need some help to achieve strong enough and reliable erections for penetrative sex. Whatever route you choose, although this is a life changing event, with a bit luck you can expect a reasonable quality of life for many years after treatment.  I would be happy to answer any question you have; you may wish to send me a private message. Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 24 Dec 2021 at 20:03

It is not clear whether the 3 months of HT prior to RT will be followed by HT for ? months after RT which is usually but not always be the case. I wouldn't think bone thinning would be a problem if it's just 3 months and supplements can mitigate against this for the longer term as applicable. As you say, personal circumstances and the way you feel about treatment and side effects have to be weighed in your decision. You might find it helpful to consider the Tool Kit if you have not yet done so. You can order a paper version or download here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 24 Dec 2021 at 20:04  | Reason: To highlight Link

Barry
User
Posted 24 Dec 2021 at 21:01
You have a pretty high PSA for G3+3. I wonder if perhaps the reason RT is being recommended is the same as it was for me? Namely, the possibility of undetectable spread into surrounding lymph nodes resulting in the elevated PSA. In my case I had "wide beam" RT which zapped the whole of my pelvis to hopeful kill off any external spread. Had I had surgery there was a very high likelihood of requiring RT subsequently, so RT was the recommended treatment. I found it all quite tolerable.

Cheers,

Chris

User
Posted 25 Dec 2021 at 10:34

I had a DEXA scan  which identified osteopenia (slight bone thinning) in left hip, moderate osteopenia in right hip. I was prescribed Adcal- D3 tablets to help with this.

Arthur

User
Posted 26 Dec 2021 at 16:57

Hi GlasgowGuy,

You make good points.  As others have said your psa is higher than best. Also you say surgery could be 3 months away, although on the face of it there is no rush.

One thing about hormones is you start right away and the backstop isn't over critical.  To get your PSA down to <0.1 before RT is good.

I took surgery for speed as I was told it was near the edge of my prostate also my Gleason wasn't good, although it was worse post op, the surgeon fit me in quickly which was a bonus.

Side effects have different importance to us all.  I said to one of the surgeon who took my risk signature pre-op that they should do what they need for the best result as I'd put up with it.  He gave me what looked like a concerned look and said they have very good 5yr figures.

You could try using nomograms.  Here is a link.  My Gleason 4+4 spoils my results. You need the pre-op one.  I calculate using estimates a 60 to 70% 6yr success on SRT which you don't get with RT.

https://www.mskcc.org/nomograms/prostate

All the best

Peter

 

Edited by member 26 Dec 2021 at 19:37  | Reason: Not specified

User
Posted 26 Dec 2021 at 21:08

Hi GlasgowGuy

I had a PSMA scan prior to my surgery. It came back negative which pleased me no end. I had elected to have RARP so I proceeded. Post surgery my PSA was not undetectable. My PSA has risen regularly since then. Last test was 0.18. I got called in for another PSMA scan which revealed a 11mm lesion on one of my lymph nodes.

I am on HT ( Zoladex) as we speak and have a CT scan booked for next week . Current plan is to start SRT mid january. The question I ask myself is " would I have made a different decision if I knew that the cancer had escaped the capsule?" In that situation I suspect I might well have gone down the route that is being suggested for you.

Does your hospital offer PSMA scans? If it does I would certainly be asking for one. It didn't help me, unfortunately, but it might help you make a decision.

 

User
Posted 26 Dec 2021 at 22:17

I think music man has a good point when he suggests a PSMA PET scan, specifically something using a tracer like gallium 68. For me, it showed up three, very small [less than 2mm] mets in lymph glands near the prostate, which made it possible to specifically target them with RT. I don't understand why music man's PSMA scan didn't show up the large lesion on one of his lymph nodes but perhaps you, Glasgow guy, could interrogate your oncologist about checking out mets and dealing with them if necessary.

Jules

Edited by member 26 Dec 2021 at 22:22  | Reason: Not specified

User
Posted 27 Dec 2021 at 11:26
My take on the PSMA scan is that when I had the first scan the mets were too small for the Ga68 scan to pick them up. It was only subsequently, with increasing PSA levels that the scan was good enough to find the tumour. I guess I just have a more aggressive form of the disease.

Lyns point about PSMA scans pre-surgery is a reasonable one. With limited, expensive capacity, it makes sense to use that capacity for the guys who really need it. I was treated @ Royal marsden and my onco was the one who suggested the scan.

User
Posted 28 Dec 2021 at 08:24

Interesting discussion on PSMA which has at least provided some assurance that I haven’t missed out on an important part  of my diagnosis since I am in Scotland and it appears the scan is not routinely performed in newly diagnosed. Unfortunately the PSMA discussion has sent my thread off at a tangent so just a wee reminder of my original post - I am keen to come to a decision whilst I am off work for holidays so would appreciate advice, views of others on preferred option from the two I am offered (RT with 3 month HT preceding, or RP). I know only I can decide, I am still leaning towards RP (robotic) but keen to read a range of views ( I have browsed old threads too ).

 

regards. GG 

User
Posted 28 Dec 2021 at 10:33
Yes, sorry GG :-/

I don’t think it was helpful or appropriate to suggest to you that you should request a PSMA scan - you could have got the impression that you were missing out on something that other people get routinely.

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

User
Posted 28 Dec 2021 at 11:18
Also, I think don't get too sidetracked by the idea that your PSA is high for a G6 - there is no 'high' or 'low' for a particular gleason grade. We have had men here with PSA of 80 or more and no cancer ... and men with PSA of around 3 and G9. Your PSA is just what your PSA is, and your Gleason score is not directly related to that.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2021 at 17:22

Hi having read about your diagnosis read my treatment selection on IRE which offers lower side effects 

happy to chat to you if u wish

paul 

User
Posted 28 Dec 2021 at 17:49

Originally Posted by: Online Community Member

GG 

The info from my hospital eight years ago was you should be back at work within 2-6 weeks after RARP. I think 2 weeks is very optimistic,  I was back at work but confined to the office after five weeks after surgery, at seven weeks l was traveling all over the uk visiting sites. My job didn't involve manual work. I was lucky to be 99 percent dry when I returned to work. I imagine someone doing a manual job and leaking like a sieve would find it challenging being back at work. 

We all recover in different rates, and no one can guarantee what your post op situation will be.

Success rates for RP and RT are often quoted at 70 percent. I had to have salvage RT, so had to endure the side effects of surgery and RT. I didn't have HT. 

I am sure the guys who had RT and HT will give you thier experiences. Fatigue is often mentioned as a effect of HT.

Good luck with your choice. 

Thanks Chris

 

 

thanks for sharing your experience Chris. I can work from home ( office job - have been wfh for last 20 months due to pandemic ) so I am hoping I could return to light duties quite quickly given it only means turning in laptop in home office )

regards, GG

User
Posted 30 Dec 2021 at 21:55
Thanks to all for sharing their views and experience - I have made my decision and elected for RP (robotic) - it is by far my preferred option compared to HT/RT.

Unfortunately there’s a bit of a waiting list and it will be several months before I get a theatre slot. In some ways that worries me since I obviously don’t want too long a delay but I am assured that with a contained Gleason 3+3 there is no pressing urgency.

I can now step into a new year with a firm plan of action and with gratitude and relief that my treatment option is a curative one.

I will use the time productively to ensure physically and mentally prepared but will avoid too much online reading since I could end up obsessing over the pros and cons of my decision.I just lab to stay focused and look forward.

This is a great resource and I can’t commend highly enough the specialist nurse I spoke to.

I’ll keep you posted on my journey in the hope I can help others as I have been helped (and since I’ll probably need occasional reassurance when the inevitable worries creep up on me).

Regards, and wishing all of you a happy new year when it comes. GG

User
Posted 30 Dec 2021 at 22:11

Yes: well done making a decision.  I promised myself never to second guess my own: OK so far. Now for Kegels and if needed a trimming up: as you say, far better than reading!

User
Posted 31 Dec 2021 at 16:58

As Lyn says it is always better once you have made your decision.

The rest of her advice is spot on too! 

Ido4

User
Posted 13 Mar 2022 at 16:56

Originally Posted by: Online Community Member

Hi all, well the surgeon was right, he estimated around three months on the waiting list and here I am almost three months on preparing for my RP later this week. I am really nervous but also thankful that I have this treatment option. It seems the surgeon (at QEUH in Glasgow) is really experienced in robotic prostatectomy and I cannot fault the NHS - everyone has been great. 
Can those who have been through this op offer any advice or reassurance ? I process things better when I know what lies ahead. 

I am also wondering about practicalities, what foods I will be able to eat when I get home,  can i do light shopping, how long should I be off work ( I do a desk job and can work from home ).

And call me a big girls blouse but the thought of the catheter makes my eyes water, and I wonder how I’ll get on with it.

I’ll post after the op on my experience in the hope of helping others 

regards, GG

You’re ahead of my husband, he has his surgery on 22nd March. I hope your surgery goes well and you are soon home recuperating. X

User
Posted 13 Mar 2022 at 20:04

I found one strap enough for the shower, as you will have an empty bag. Can't say I had any problem with a sore penis either and I've needed a catheter four times now. IMO the best thing for constipation is having a walk - exercise is good, just don't lift weights! (that means don't push a shopping trolley around Tescos either!)

I worked from home after a week, but only for a few hours a day. I certainly wouldn't go in for a couple of months - no matter how you feel, you won't be back to normal before then.

User
Posted 18 Mar 2022 at 08:23

That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad 😂😂

There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )

 

oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet 😂

I am feeling good today, positive and relieved. Wishing you all a good weekend.

GG

 

Edited by member 18 Mar 2022 at 08:23  | Reason: Typo

User
Posted 18 Mar 2022 at 09:01

Great stuff! 

The catheter is fun: you can see your hydration in real time and with a bit of effort can lay down a lovely sunrise layered pattern in the bag. I had a weird thing with the night bag: I used to fill it (1.5l) and thought: wow that’s a restless night when that comes out. But no: dunno what it was but now I NEVER pee at night. Amazing: fun isn’t it and hopefully it lasts for you too.

Well done 

 

SUM

User
Posted 18 Mar 2022 at 12:42
Catheter bag art? Not sure it'll catch on 😁.

Chris

User
Posted 18 Mar 2022 at 13:12

Originally Posted by: Online Community Member
Catheter bag art? Not sure it'll catch on 😁.

Chris

 

I make patterns with the blood clots in mine 😃.

 

GG take it easy but keep mobile, don't be surprised if you bypass a little urine and a trace of blood out of the the penis. It often happened to me when passing a motion, a bit of tissue under the penis while sat on the toilet helps save wet underwear.  I was told Rosé colour in the bag should be okay but red wine colour needs attention. Don't forget the instilagel in case the catheter makes the penis sore. 

Get a couple of extra thigh straps, use one around your ankle to secure the night bag tube when in bed, it saves putting any strain on the bag joint. Make sure the catheter joints are tight, and make sure the leg bag tap is shut before disconnecting the night bag and don't forget to open the leg bag tap when you attach the night bag.

The extra thigh straps are useful when showering. I empty my bag a let it hang on the thigh strap ,when i finish showering I put a dry strap on the other leg and transfer the catheter and bag to the dry strap.

Make sure you empty your day bag before it gets more than half full. 

Hope all goes well.

Thanks Chris

 

User
Posted 18 Mar 2022 at 14:58

Originally Posted by: Online Community Member

That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad 😂😂

There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )

 

oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet 😂

I am feeling good today, positive and relieved. Wishing you all a good weekend.

GG

 

 

GG - great news. Wishing you a speedy recovery. Take things easy. This time next week im hoping my OH will be in the same position 🤞

User
Posted 20 Mar 2022 at 18:26

Home now - I was kept in another day since I struggled to get in and out of bed unaided - last 24 hours was much better so pain must be easing , and I have a menu of painkillers to help.

wounds all really clean. I have my appetite - only (minor) issues are tiredness and bowels not moving yet ( I am sure nature and some medicine will take care of that soon ). 

I have my catheter removal appointment on Thursday ( which means a covid test on Tuesday then self isolation ) - I cannot and will not fault the NHS but they seem determined to send me on a magical mystery tour of every hospital in the health board area ! I am getting about!

apart from that it’s just a matter of focusing on recovery , lots of rest and gradually build up my walks. 

pathology results are early May so a wee while to wait. Will keep you all posted on my progress in the hope it helps others on their journey, just as others have helped me.

 

regards, GG

Edited by member 20 Mar 2022 at 18:27  | Reason: Not specified

User
Posted 20 Mar 2022 at 21:43

Originally Posted by: Online Community Member

That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad 😂😂

There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )

 

oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet 😂

I am feeling good today, positive and relieved. Wishing you all a good weekend.

GG

 

great news the surgery is behind you GG and it sounds like you were really well looked after. Take it easy and wishing you well. Thank you for your pm. Look forward to hearing your progress.

User
Posted 24 Mar 2022 at 19:38
I was still in hospital with complications when my catheter was removed. Summer 2015. They stuck me in hospital scrubs and took me straight out to the front of the hospital for some sun and fresh air. I think the very thought of wetting myself in public was enough to stop any leakage. I was very very lucky with only drips for a few months. Good luck
User
Posted 24 Mar 2022 at 20:48

one quick question for those ahead of me on this journey, I feel my appetite is lower than before,  is that usual ? ( I tried to eat my normal intake yesterday but ended up with bad indigestion)

I lost a stone in eating less before (stress) and after surgery. It has been major surgery and you are still healing.

( Put the weight back on over Christmas and New Year ! Which was 6 weeks post op )

Edited by member 24 Mar 2022 at 21:04  | Reason: Additions

User
Posted 25 Mar 2022 at 15:14

Great to hear GG that your progress is going well.  I bet you were relieved to get the catheter out.  We are on Day 3 post RALP so following your progress.  All good so far.  My OH appetite has reduced, he's eating smaller portions, but after major surgery its be expected.  Wishing you well x

Originally Posted by: Online Community Member

Another milestone today - 1 week after RALP the catheter was removed (strange sensation but not painful), I then spent a few hours on ‘Trial of void’ ensuring that my bladder was emptying and not retaining urine’, - pleased to say that all went fine.

Even more pleased to report that so far I see no sign of incontinence or leaking. I know it is very early days so I don’t want to get my hopes up  too soon but I’m happy tonight that the last week has gone as well as i could have wished for.

 

User
Posted 26 Apr 2022 at 08:47

Good news GG and I hope your post surgery results are as good as mine.

 

Ivan

User
Posted 26 Apr 2022 at 11:31

Great news GG that you are recovering really well. Best of luck for next week x

User
Posted 26 Apr 2022 at 23:23
Great to hear GG and hoping you get good results. We are a little behind you, PSA test for OH next Tuesday with results on 5th May. Anxiety is starting to build! Keep us posted and wishing you well

X

User
Posted 27 Apr 2022 at 13:17

Sounds like you are doing well. Best wishes for your follow up appointment.

Ido4

User
Posted 06 May 2022 at 17:23

Hi All, just a wee update. I  got my pathology results today. Prostate margins were clear and PSA was unrecordable ( consultant says < 0.1 is as low as they can measure ). My gleason was upgraded to 3+4 but fully contained.  I am now on to the standard blood tests every three months  - I’ll have a wee glass of 🍷or two over the weekend to celebrate 😀

Regards, GG

Edited by member 06 May 2022 at 18:32  | Reason: Not specified

User
Posted 06 May 2022 at 22:02

Great news GG!! Congratulations and long may it continue. Hope you’ve enjoyed a few celebratory drinks x

User
Posted 07 May 2022 at 12:40

Great news. 

Ido4

User
Posted 08 May 2022 at 08:12

Great news , your results seem to be identical to my husbands. He has just had his second three month check and all is good. Still a worry though each time a test is due.

User
Posted 09 Aug 2022 at 15:45
Hi all, just checking in since today was a small but significant step on my post RP journey. This was my first regular check since the pathology indicated clear margins.

PSA is still undetectable, huge relief, I was a bit nervous but just need to get used to the regular checks. I am told it will be every 4 months in year 1, every 6 months in year 2&3, then annual until end of year 5.

Still almost 100% continent but no ‘stirrings’ yet. I am awaiting an appointment at the ED clinic ( surgery was nerve soaring so I remain hopeful ).

Take care everyone, and enjoy the summer.

Cheers, GG

User
Posted 09 Aug 2022 at 16:47
It should be annual test for the rest of your life, it doesn't stop at year 5
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2022 at 17:44

A really positive story GlasgowGuy. Thank you for sharing.

User
Posted 09 Aug 2022 at 19:22
I think discharge by the hospital means they hand over to your GP for monitoring.

(Not that I have experienced that, before the 5 years my PSA was starting to become detectable so I stayed with the hospital, eventually getting referred to oncology).

User
Posted 09 Aug 2022 at 20:27

Great news GG, really happy things are going well. I’m not sure I’ll ever let Rob go from 3 monthly testing 🤦🏻‍♀️ although his situation has been a little bit different to yours. Wishing you well going forward 👍

User
Posted 09 Aug 2022 at 20:49
You’re in charge remember. I told my Onco the regular testing was stressing me out and he said ‘fine , let’s make it every 5 months ‘ 😆

And that starts it’s own stress cycle haha. We settled on 4 months instead of 3

User
Posted 10 Aug 2022 at 08:52
Great news GG, so good to hear. Totally understand the anxiety surrounding these PSA tests, my nerves were in shreds. Keep well x
User
Posted 08 Dec 2022 at 18:13

Amazing news fella. Great to see a good news story.

Edited by member 08 Dec 2022 at 21:38  | Reason: Not specified

User
Posted 08 Dec 2022 at 18:20
Nice one GG 👍
User
Posted 08 Dec 2022 at 20:29
Great news GG and long may it continue. X
User
Posted 08 Dec 2022 at 20:48

GG, great news, long may it continue.

Thanks Chris 

User
Posted 08 Dec 2022 at 21:04

Great news GG, Big thanks for your QEUH detail. Was as you said.

 

Jamie

User
Posted 08 Dec 2022 at 23:17

Brilliant news GG.

Long may it continue.

Have a wonderful Christmas & New year x

Edited by member 08 Dec 2022 at 23:18  | Reason: Not specified

User
Posted 09 Dec 2022 at 12:44

Great news on your PSA GG. Wishing you all the best for Christmas and 2023.

Ido4

User
Posted 11 Apr 2023 at 16:15
I now have a vacuum pump but struggle to use it (don’t seem able to get a seal ) - I’ll persist though

Have you tried the following:

- trim pubic hair as close as you can (but there is no need to shave)

- smear the lube around the end of the tube as well as the inside

- sit rather than stand until you have the knack

- pump for a few seconds, pause, pump, pause

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

User
Posted 11 Apr 2023 at 17:02
Great technique description Lyn works every time for me...
User
Posted 11 Apr 2023 at 18:17

Great to hear from you GG and that your PSA is still undetectable.  Can’t offer any advice re the pump but I know after last conversation with surgeon he said can be up to 3 years before nerves heal (if at all). Best wishes x

User
Posted 11 Apr 2023 at 19:40

Lyn's description is perfect. Yep trim the pubic hair. 

User
Posted 11 Apr 2023 at 21:11

As good a news as we could hope for GG. Wishing you so much warmth.

Oh and. GG?

Between you and I...

How easy is it to love Lyn??

 

Jamie.

User
Posted 15 Nov 2023 at 21:27

Hi all, sorry I haven’t been around much recently. I can be a wee bit obsessive and prone to overthink and overanalyse situations. So I made a deliberate decision to spend the summer away from PC forums since I did not want to let my diagnosis define me or dominate my thinking. Instead I tried to just enjoy the summer ( I think it lasted an entire day here in Scotland)

20 months since my RP and I have just received my first 6 months results - PSA is still undetectable so I am overjoyed. 

Still fully continent and the only bad news is I still suffer from ED despite the surgery being nerve sparing and trying pills and pump. I am awaiting an appointment to start injections where it hurts 😂 and am hoping for a better outcome. 

I am now looking forward to a relatively worry free Christmas and wish all on this journey the very best with your treatments and procedures. 

take care, GG

 

User
Posted 15 Nov 2023 at 22:39

Great new GG, you seem to be doing very well.

Derek

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Posted 24 Dec 2021 at 20:03

It is not clear whether the 3 months of HT prior to RT will be followed by HT for ? months after RT which is usually but not always be the case. I wouldn't think bone thinning would be a problem if it's just 3 months and supplements can mitigate against this for the longer term as applicable. As you say, personal circumstances and the way you feel about treatment and side effects have to be weighed in your decision. You might find it helpful to consider the Tool Kit if you have not yet done so. You can order a paper version or download here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 24 Dec 2021 at 20:04  | Reason: To highlight Link

Barry
User
Posted 24 Dec 2021 at 21:01
You have a pretty high PSA for G3+3. I wonder if perhaps the reason RT is being recommended is the same as it was for me? Namely, the possibility of undetectable spread into surrounding lymph nodes resulting in the elevated PSA. In my case I had "wide beam" RT which zapped the whole of my pelvis to hopeful kill off any external spread. Had I had surgery there was a very high likelihood of requiring RT subsequently, so RT was the recommended treatment. I found it all quite tolerable.

Cheers,

Chris

User
Posted 25 Dec 2021 at 10:21

I have just undergone RALP (on 21/12 in fact) and chose that rather than RT as:

 

a) I have never liked the idea of being treated with something that is potentially toxic;

b) I liked the idea that surgery would, hopefully, remove, the cancer once and for all and would be a one-off treatment (i.e. it would not go on for months and months);

c) Surgery meant that if it was not successful I could always then have RT. If you have RT first you usually cannot then have your prostate removed.

My PSA level in September was 6.01 and my cancer grade was deemed to be category 2 ( Gleason 3+4 =7, with less than 5% category 2, the rest being category 1). The cancer was deemed to be confined within the prostate.If the cancer had spread outside of my prostate then I would have probably foregone the surgery and opted for RT.

As Chris has mentioned, your PSA score is higher than one would expect with a Gleason 3+3=6 score but there could be reasons for this that are unrelated to the cancer. Additionally, it could well be that the biopsy has not picked up the extent of the cancer and there is more of it than the biopsy suggests. My original biopsy in June found only 3 out of 13 cores to be cancerous (Gleason 3+4=7) but my biopsy in September found 15 out of 19 cores to have it. The Gleason score was exactly the same, but the cancer was throughout my prostate rather than being confined to a small area.

 

Good luck with whatever decision you make

 

Ivan

Edited by member 25 Dec 2021 at 16:52  | Reason: Not specified

User
Posted 25 Dec 2021 at 10:34

I had a DEXA scan  which identified osteopenia (slight bone thinning) in left hip, moderate osteopenia in right hip. I was prescribed Adcal- D3 tablets to help with this.

Arthur

User
Posted 25 Dec 2021 at 15:40

Hi Glasgow guy merry Christmas to you I had a choice vto make this time last year Gleason 9  PSA 25.9  both sides off prostate but contained elected for radio therapy and hormone therapy commenced hormone therapy last December and radiotherapy commenced in March 37 fractions one year on PSA 0.01 at last test and doing ok I feel  I worked all the way through radiotherapy with very few problems whatever you decide good luck  with your treatment gaz 

User
Posted 26 Dec 2021 at 16:57

Hi GlasgowGuy,

You make good points.  As others have said your psa is higher than best. Also you say surgery could be 3 months away, although on the face of it there is no rush.

One thing about hormones is you start right away and the backstop isn't over critical.  To get your PSA down to <0.1 before RT is good.

I took surgery for speed as I was told it was near the edge of my prostate also my Gleason wasn't good, although it was worse post op, the surgeon fit me in quickly which was a bonus.

Side effects have different importance to us all.  I said to one of the surgeon who took my risk signature pre-op that they should do what they need for the best result as I'd put up with it.  He gave me what looked like a concerned look and said they have very good 5yr figures.

You could try using nomograms.  Here is a link.  My Gleason 4+4 spoils my results. You need the pre-op one.  I calculate using estimates a 60 to 70% 6yr success on SRT which you don't get with RT.

https://www.mskcc.org/nomograms/prostate

All the best

Peter

 

Edited by member 26 Dec 2021 at 19:37  | Reason: Not specified

User
Posted 26 Dec 2021 at 21:08

Hi GlasgowGuy

I had a PSMA scan prior to my surgery. It came back negative which pleased me no end. I had elected to have RARP so I proceeded. Post surgery my PSA was not undetectable. My PSA has risen regularly since then. Last test was 0.18. I got called in for another PSMA scan which revealed a 11mm lesion on one of my lymph nodes.

I am on HT ( Zoladex) as we speak and have a CT scan booked for next week . Current plan is to start SRT mid january. The question I ask myself is " would I have made a different decision if I knew that the cancer had escaped the capsule?" In that situation I suspect I might well have gone down the route that is being suggested for you.

Does your hospital offer PSMA scans? If it does I would certainly be asking for one. It didn't help me, unfortunately, but it might help you make a decision.

 

User
Posted 26 Dec 2021 at 22:17

I think music man has a good point when he suggests a PSMA PET scan, specifically something using a tracer like gallium 68. For me, it showed up three, very small [less than 2mm] mets in lymph glands near the prostate, which made it possible to specifically target them with RT. I don't understand why music man's PSMA scan didn't show up the large lesion on one of his lymph nodes but perhaps you, Glasgow guy, could interrogate your oncologist about checking out mets and dealing with them if necessary.

Jules

Edited by member 26 Dec 2021 at 22:22  | Reason: Not specified

User
Posted 27 Dec 2021 at 00:36
Currently, around 20% of hospitals in England do not meet the minimum standards for scanning at diagnosis stage- either they biopsy first and scan second, or they cannot offer mpMRI let alone the most complex tracers. NHS England withdrew the funding for Gallium 68 PSMA pre-treatment long before Covid. About 45,000 men are diagnosed with prostate cancer each year here, G68 is produced in only a very small number of labs, production is highly unreliable, it travels badly and is very expensive. It is not considered realistic or necessary for newly diagnosed men to be offered PSMA - better that the limited resources are targeted to men with suspected recurrence, where gallium, axumin and choline come into their own and can really offer something.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Dec 2021 at 03:15

Originally Posted by: Online Community Member
It is not considered realistic or necessary for newly diagnosed men to be offered PSMA - better that the limited resources are targeted to men with suspected recurrence, where gallium, axumin and choline come into their own and can really offer something.

That looks like false economy to me. If you pick up the problem initially and treat it to the highest possible standards the first time around there's much less likelihood of having to waste resources on recurrence. More to the point, it could save many men with PCa from years of suffering.

If the production and supply of G86 isn't up to scratch, it should be fixed.

Of course I'm not saying that as a criticism of you Lyn and thanks for making the situation clear with your post.

Jules

 

Edited by member 27 Dec 2021 at 04:57  | Reason: Not specified

User
Posted 27 Dec 2021 at 08:47

Originally Posted by: Online Community Member
You have a pretty high PSA for G3+3. I wonder if perhaps the reason RT is being recommended is the same as it was for me? Namely, the possibility of undetectable spread into surrounding lymph nodes resulting in the elevated PSA. In my case I had "wide beam" RT which zapped the whole of my pelvis to hopeful kill off any external spread. Had I had surgery there was a very high likelihood of requiring RT subsequently, so RT was the recommended treatment. I found it all quite tolerable.

Cheers,

Chris

thanks Chris, the docs assure me the cancer is low grade and contained in prostate ( based on MRI, and bone scan). They are not recommending RT over surgery but instead offering either, saying both are curative treatments and prognosis Is ‘excellent’  for both.

The HT is simply ‘belt and braces’ to shrink the tumour ahead of RT and the oncologist says that in my situation she would be quite comfortable stopping the HT if the reaction was not tolerable (to me). 

I am a little concerned now regarding the higher PSA. I was told that AS is not an option because that PSA puts me in intermediate risk in the future, but there has been no suggestion of spread. The HT will be very tightly focussed if I go that route ( although I am currently leaning to surgery). Others suggested a PSMA scan, This has never been discussed , I don’t think it would be offered. 

should I be concerned about the PSA in the absence of additional scans ?  

GG

User
Posted 27 Dec 2021 at 11:26
My take on the PSMA scan is that when I had the first scan the mets were too small for the Ga68 scan to pick them up. It was only subsequently, with increasing PSA levels that the scan was good enough to find the tumour. I guess I just have a more aggressive form of the disease.

Lyns point about PSMA scans pre-surgery is a reasonable one. With limited, expensive capacity, it makes sense to use that capacity for the guys who really need it. I was treated @ Royal marsden and my onco was the one who suggested the scan.

User
Posted 27 Dec 2021 at 11:42

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
It is not considered realistic or necessary for newly diagnosed men to be offered PSMA - better that the limited resources are targeted to men with suspected recurrence, where gallium, axumin and choline come into their own and can really offer something.

That looks like false economy to me. If you pick up the problem initially and treat it to the highest possible standards the first time around there's much less likelihood of having to waste resources on recurrence. More to the point, it could save many men with PCa from years of suffering.

If the production and supply of G86 isn't up to scratch, it should be fixed.

Of course I'm not saying that as a criticism of you Lyn and thanks for making the situation clear with your post.

Jules

 

It isn't a problem that can be 'fixed' Jules- it is nuclear science. There are, I think, 3 (or maybe 4) places in England where the G68 tracer can be made - it is a highly unstable radio-isotope which has a very short half life and can only be made on the day that it is to be used. So, if a man needs a PSMA scan in London today, the tracer will be made today and then transported to wherever the scanner is. If the batch has gone wrong, or the journey is delayed, the scan will have to be cancelled. I think Barry and CJ have both been in the situation where they have travelled to London, booked hotel accommodation, etc only for the scan to be cancelled on the day because the tracer was compromised in some way. 

It also costs somewhere in the region of £5k per scan which would obviously bankrupt the NHS if offered to 45,000 men per year.  

And, finally, not all prostate cancers are PSMA responsive so offering it to all men wouldn't achieve the benefits you suggest. CJ had a number of different scans including choline and PSMA which picked up nothing until his PSA had risen to around 100. To be doubly careful, a man could have mpMRI, choline, Axumin / FACBC and G68 all of which are clear and still turn out to have mets. 

Edited by member 27 Dec 2021 at 11:52  | Reason: Not specified

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

User
Posted 27 Dec 2021 at 22:26

Lyn I do understand the processes involved in the production of Gallium 68 and I'm not going to quibble about the half life of radio isotopes.

I was eligible for a PSMA PET scan when I was newly diagnosed and not "recurrent". I was high risk Gleason 9. The fact that the scan picked up small mets in adjacent glands simplified my treatment making it possible to treat both the prostate and the mets in the same RT treatment. I might be back in 5 or 10 years for follow up treatment of some sort but based on my PSA readings post RT and now nearly a year later, it's extremely unlikely that I'll be back in one or two years because it's realized that there were still mets active. In terms of efficiency if nothing else, this would seem to be a sensible approach to the use of resources. I was able to have the scan free, provided by our government health scheme and I think it's something we should all be pushing for, wherever we live.

I take your point that there has to be a cut-off line somewhere from a cost point of view but maybe risk rather than recurrence would make more sense?

For Glasgow Guy, who is not high risk and might not have any mets,  I have to admit that a PSMA PET scan is probably excessive. At the same time, it would be frustrating to find out at a later date that they had been present all along.

Jules

Edited by member 28 Dec 2021 at 00:17  | Reason: Not specified

User
Posted 28 Dec 2021 at 00:22
I think that it is just different between Aus and UK. As far as I understand it, in Australia you can only have a G68 PSMA scan as part of a trial or if you can pay - it isn't fully covered by medicare so cost is part covered by medicare, part by the patient and part by private companies? Cost in Aus is $700 - cost in UK is £3-5k. Medicare might not collapse if it was offered to all new dx men but I think the NHS might :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2021 at 00:49

Yes I had my 68 Gal PSMA cancelled because at the time there was a problem with the 'Generator' required to produce the scan. I was told this would also affect London Hospitals dependent on this Generator. I expressed surprise that in the circumstances a back up unit was not available and was told by The Paul Strickland Scanner Center where I went on to have my PSMA scan in May 2018 that they hoped to make alternative arrangements for the agent. I am not aware of current charges for this scan, the agent for which has to be produced specifically for each patient based largely on their weight, but quotes I got were around £2,600 at the time in the London area.

This is an interesting link concerning PSMA scans in Australia where they have taken up this scan earlier and more extensively, though the criteria is very similar for its use as Lyn says although they thought it could be introduced at an earlier stage in due course. https://www.prostate.org.au/news-media/news/benefits-of-psma-pet-scans-for-prostate-cancer-diagnosis/

 

Edited by member 28 Dec 2021 at 00:51  | Reason: to highlight link

Barry
User
Posted 28 Dec 2021 at 03:18

Originally Posted by: Online Community Member
I think that it is just different between Aus and UK. As far as I understand it, in Australia you can only have a G68 PSMA scan as part of a trial or if you can pay - it isn't fully covered by medicare so cost is part covered by medicare, part by the patient and part by private companies? Cost in Aus is $700 - cost in UK is £3-5k. Medicare might not collapse if it was offered to all new dx men but I think the NHS might :-(

Cost was zero for me through public health cover and it isn't a trial now, though it was a couple of years ago. I think the cost aspect was because I'd been "officially" declared as having a form of cancer. Thereafter everything in health seems to be free! We do have parallel private and publicly funded systems, though private health cover often has large gap payments between the actual cost and the amount the funds are prepared to pay out.

The link provided by Old Barry [thanks] is for some work at the Peter McCallum hospital in Melbourne, Vic, which specializes in cancer treatment. I am being treated in Port Macquarie NSW and I think there's one other centre north of here that's using the same approach. What's happening here is not directly related to the Peter McCallum clinic work but to this:

radiotherapy and oncology Oct. 2019

Unfortunately it's only an abstract with the full pdf costing about $35.

Edited by member 28 Dec 2021 at 05:10  | Reason: Not specified

User
Posted 28 Dec 2021 at 08:24

Interesting discussion on PSMA which has at least provided some assurance that I haven’t missed out on an important part  of my diagnosis since I am in Scotland and it appears the scan is not routinely performed in newly diagnosed. Unfortunately the PSMA discussion has sent my thread off at a tangent so just a wee reminder of my original post - I am keen to come to a decision whilst I am off work for holidays so would appreciate advice, views of others on preferred option from the two I am offered (RT with 3 month HT preceding, or RP). I know only I can decide, I am still leaning towards RP (robotic) but keen to read a range of views ( I have browsed old threads too ).

 

regards. GG 

User
Posted 28 Dec 2021 at 10:33
Yes, sorry GG :-/

I don’t think it was helpful or appropriate to suggest to you that you should request a PSMA scan - you could have got the impression that you were missing out on something that other people get routinely.

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

User
Posted 28 Dec 2021 at 11:18
Also, I think don't get too sidetracked by the idea that your PSA is high for a G6 - there is no 'high' or 'low' for a particular gleason grade. We have had men here with PSA of 80 or more and no cancer ... and men with PSA of around 3 and G9. Your PSA is just what your PSA is, and your Gleason score is not directly related to that.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2021 at 11:27

Originally Posted by: Online Community Member
Also, I think don't get too sidetracked by the idea that your PSA is high for a G6 - there is no 'high' or 'low' for a particular gleason grade. We have had men here with PSA of 80 or more and no cancer ... and men with PSA of around 3 and G9. Your PSA is just what your PSA is, and your Gleason score is not directly related to that.

thanks Lyn - that has been bothering me - I know I am in a ‘relatively’ good position compared to many with a 3+3 and a tumour that is small, contained and on one side only. But the PSA has been worrying me. If only it were below 10 the medics may have offered AS 😀

regards, GG

 

User
Posted 28 Dec 2021 at 12:53

Originally Posted by: Online Community Member
I don’t think it was helpful or appropriate to suggest to you that you should request a PSMA scan - you could have got the impression that you were missing out on something that other people get routinely.

Guilty as charged m'lud 😁

User
Posted 28 Dec 2021 at 15:53

Originally Posted by: Online Community Member

a wee reminder of my original post - I am keen to come to a decision whilst I am off work for holidays so would appreciate advice, views of others on preferred option from the two I am offered (RT with 3 month HT preceding, or RP).

Hi GG

I am aged 65 and was G3+3 and PSA of 14.2, but a November biopsy changed it to G3+4 (3 of 11 cores on the right side with one of them being 80% grade 4 cancer, 1 of 9 cores on the left side with that one being 5% grade 3 cancer). My consultant has recommended RP, with RT as a close second and AS as the least favoured option. I am favouring RP as both RP and RT have side effects, but I think RP offers a bit more certainty. My general health is good, so fingers crossed I won't be unlucky and have particularly severe side effects (but am very aware there is no guarantee). My understanding is that if the cancer returns after RP I can then pursue RT, but doing it the other way round is more difficult (i.e. RP after RT).

I have had conversations recently with someone who was aged 67, PSA 7, G3+3 and who decided to skip any biopsies and go for RP. His logic was that the cancer was never going to get any better, so he would have surgery while he was relatively young and in good health, rather than waiting until he was in his 70s and recovery would take longer. In this he was supported by a long term, trusted GP who had himself had RP. Six weeks post OP he is almost fully continent, but still too early to say regarding ED.

Everyone has to consider their own particular circumstances, but as I say, I am minded to opt for RP.

Regards

Paul

User
Posted 28 Dec 2021 at 16:55
I read this thread with interest and, once again, some anguish for the decisions that people have to make.

A few observations and questions:

If there is no ‘high’ or ‘low’ PSA level for a particular Gleeson grade, why is GlasgowGuy being pushed towards treatment and away from AS, mainly because he has a high PSA level?

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

To GlasgowGuy I would ask - has brachytherapy been offered or discussed? I believe it requires that the prostate isn’t too big (you say yours isn’t) and that it can be completed with an overnight stay in hospital (which might suit your work commitments). I don’t know whether surgery to remove the prostate is an option later, if it proves necessary.

User
Posted 28 Dec 2021 at 17:09

Originally Posted by: Online Community Member
I read this thread with interest and, once again, some anguish for the decisions that people have to make.

A few observations and questions:

If there is no ‘high’ or ‘low’ PSA level for a particular Gleeson grade, why is GlasgowGuy being pushed towards treatment and away from AS, mainly because he has a high PSA level?

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

To GlasgowGuy I would ask - has brachytherapy been offered or discussed? I believe it requires that the prostate isn’t too big (you say yours isn’t) and that it can be completed with an overnight stay in hospital (which might suit your work commitments). I don’t know whether surgery to remove the prostate is an option later, if it proves necessary.

hi Ian,

It seems AS is deemed not to be suitable purely on the PSA level. Although i have a low grade tumour which was described by my urologist as ‘very low grade’, ‘possibly the beginning of a tomour’ ( on viewing MRI prior to biopsy ). But the PSA being > 10 puts me into an intermediate risk group for which AS is not recommended.

i did ask about Brachytherapy but it wasn’t recommended ( I think again due to PSA )

regards , GG 

User
Posted 28 Dec 2021 at 17:22

Hi having read about your diagnosis read my treatment selection on IRE which offers lower side effects 

happy to chat to you if u wish

paul 

User
Posted 28 Dec 2021 at 17:43

GG 

The info from my hospital eight years ago was you should be back at work within 2-6 weeks after RARP. I think 2 weeks is very optimistic,  I was back at work but confined to the office after five weeks after surgery, at seven weeks l was traveling all over the uk visiting sites. My job didn't involve manual work. I was lucky to be 99 percent dry when I returned to work. I imagine someone doing a manual job and leaking like a sieve would find it challenging being back at work. 

We all recover in different rates, and no one can guarantee what your post op situation will be.

Success rates for RP and RT are often quoted at 70 percent. I had to have salvage RT, so had to endure the side effects of surgery and RT. I didn't have HT. 

I am sure the guys who had RT and HT will give you thier experiences. Fatigue is often mentioned as a effect of HT.

Good luck with your choice. 

Thanks Chris

 

 

User
Posted 28 Dec 2021 at 17:49

Originally Posted by: Online Community Member

GG 

The info from my hospital eight years ago was you should be back at work within 2-6 weeks after RARP. I think 2 weeks is very optimistic,  I was back at work but confined to the office after five weeks after surgery, at seven weeks l was traveling all over the uk visiting sites. My job didn't involve manual work. I was lucky to be 99 percent dry when I returned to work. I imagine someone doing a manual job and leaking like a sieve would find it challenging being back at work. 

We all recover in different rates, and no one can guarantee what your post op situation will be.

Success rates for RP and RT are often quoted at 70 percent. I had to have salvage RT, so had to endure the side effects of surgery and RT. I didn't have HT. 

I am sure the guys who had RT and HT will give you thier experiences. Fatigue is often mentioned as a effect of HT.

Good luck with your choice. 

Thanks Chris

 

 

thanks for sharing your experience Chris. I can work from home ( office job - have been wfh for last 20 months due to pandemic ) so I am hoping I could return to light duties quite quickly given it only means turning in laptop in home office )

regards, GG

User
Posted 28 Dec 2021 at 17:51

Thanks Paul , IRE seems quite new and not sure how widely available it is - again, my PSA may rule out this option - but I’ll take a read 

regards. GG

User
Posted 28 Dec 2021 at 18:50

Hi GlasgowGuy

 

sorry to hear about your diagnosis. Its not an easy decision. I was faced with the same this year and opted for RP. Check out my main thread for the details. I could not face going through RT over several weeks and just wanted it out having monitored my PSA for 15 years. Its more difficult for you as youve only just discovered you have a problem and in my case (T2BN0M0 multifocal PSA 6.3) both oncologist and surgeon said they would opt for surgery if they were me. At 60 you are relatively young so surgery is often suggested . all I can say is that if you go with a high volume surgeon with good stats your continence should be ok after a few months (I was dry almost immediately) and regarding ED if they can do nerve sparing then that improves your chances of a relatively normal sex life. Albeit without ejaculation which I do miss. Apparantly SRT is an option after RP if you do get a recurrence and was another reason I went with surgery. Good luck with your decision and make sure its your decision. Trust your gut having done all the research. You will feel much better when youve made a decision. 

User
Posted 29 Dec 2021 at 02:41

Originally Posted by: Online Community Member
I read this thread with interest and, once again, some anguish for the decisions that people have to make.

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

Of course the NHS could use extra money to help encourage people to fill clinical vacancies and the situation has been made worse with the pandemic diverting some staff to help deal with it.  But even before the pandemic, the number of radiographers and radiologists fell well short of what was needed.  It takes time to train these, more so to do the more advanced scans and with an ageing population demand will further increase.  One has to remember the scanners are used for many other reasons than for PCa. Aso, it's not just the cost of the scan but the capital cost of all the extra linacs that would be needed.

People have different views on the cost and need for 'Diversity Managers', so best not debated here.

 

Edited by member 29 Dec 2021 at 02:45  | Reason: Not specified

Barry
User
Posted 29 Dec 2021 at 10:49

Originally Posted by: Online Community Member

hi Ian,

It seems AS is deemed not to be suitable purely on the PSA level. Although i have a low grade tumour which was described by my urologist as ‘very low grade’, ‘possibly the beginning of a tomour’ ( on viewing MRI prior to biopsy ). But the PSA being > 10 puts me into an intermediate risk group for which AS is not recommended.

i did ask about Brachytherapy but it wasn’t recommended ( I think again due to PSA )

regards , GG 

A T2 staging will not usually be considered suitable for AS unless the cancer was in less than 5% of the cores taken. I am surprised that you were told brachy wasn't an option - there are two kinds of brachy depending on how advanced the cancer is. Did an oncologist rule it out for you or was it just the urologist's view? The cynic in me wonders whether it was ruled simply because your hospital doesn't offer it? 

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

User
Posted 29 Dec 2021 at 12:19

I'm biased, because it happened to me, but upstaging is very common: MRIs are not very sensitive for EPE etc. What they can tell you is your free urethral length. The bigger the better/quicker in UI terms. There's a "pivot" in the 12mm area. I was 19 and immediately almost totally continent*. I think the risk of UI is a huge consideration in whether to have surgery. So is surgeon volume. 

*I'm in London and there's a lot of hoopla about Prof hewhomustnot... and Retzius. "Normal" RALP has evolved for most high-volume people where the difference is really minute (and in my case zero). I asked my surgeon who he would have do his (LBH based, HCA, and Marsden (not Guildford). I will not be able to reply to IMs but can edit here if anyone wants to play guessing games). 

 

<ADD>I guess from your username the London people are not that relevant. I guess there are high-volume people up there. Before having surgery, find them (the NHS is doing a good job of focussing cases on a few surgeons, but do make sure). The Stateside horror stories seem to come from low-volume people.</ADD>

Edited by member 29 Dec 2021 at 12:25  | Reason: add

User
Posted 30 Dec 2021 at 21:55
Thanks to all for sharing their views and experience - I have made my decision and elected for RP (robotic) - it is by far my preferred option compared to HT/RT.

Unfortunately there’s a bit of a waiting list and it will be several months before I get a theatre slot. In some ways that worries me since I obviously don’t want too long a delay but I am assured that with a contained Gleason 3+3 there is no pressing urgency.

I can now step into a new year with a firm plan of action and with gratitude and relief that my treatment option is a curative one.

I will use the time productively to ensure physically and mentally prepared but will avoid too much online reading since I could end up obsessing over the pros and cons of my decision.I just lab to stay focused and look forward.

This is a great resource and I can’t commend highly enough the specialist nurse I spoke to.

I’ll keep you posted on my journey in the hope I can help others as I have been helped (and since I’ll probably need occasional reassurance when the inevitable worries creep up on me).

Regards, and wishing all of you a happy new year when it comes. GG

User
Posted 30 Dec 2021 at 22:11

Yes: well done making a decision.  I promised myself never to second guess my own: OK so far. Now for Kegels and if needed a trimming up: as you say, far better than reading!

User
Posted 30 Dec 2021 at 22:29
Things usually look far better once you have made a decision. Others will advise you to do the kegels and get fit and lose weight, etc, etc. My advice is to get a holiday or a couple of weekends away (covid permitting), have loads of sex and just take joy in doing normal couple things. That was the advice our uro gave John and I know that he later wished very much that he had listened.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2021 at 01:23
Good decision GG.

Prof, I'm slightly perplexed as to why the PET scan came up negative in the various places you're going to receive RT but all the best for your treatment.

Jules

User
Posted 31 Dec 2021 at 13:17
i cant add Much so just wishing you all the best with it!

User
Posted 31 Dec 2021 at 16:58

As Lyn says it is always better once you have made your decision.

The rest of her advice is spot on too! 

Ido4

User
Posted 13 Mar 2022 at 15:14

Hi all, well the surgeon was right, he estimated around three months on the waiting list and here I am almost three months on preparing for my RP later this week. I am really nervous but also thankful that I have this treatment option. It seems the surgeon (at QEUH in Glasgow) is really experienced in robotic prostatectomy and I cannot fault the NHS - everyone has been great. 
Can those who have been through this op offer any advice or reassurance ? I process things better when I know what lies ahead. 

I am also wondering about practicalities, what foods I will be able to eat when I get home,  can i do light shopping, how long should I be off work ( I do a desk job and can work from home ).

And call me a big girls blouse but the thought of the catheter makes my eyes water, and I wonder how I’ll get on with it.

I’ll post after the op on my experience in the hope of helping others 

regards, GG

User
Posted 13 Mar 2022 at 15:45

Hi Glasgow Guy. I'm sure everything will be fine. Good luck. I would not consider my posts as a typical outcome from RP. I had open surgery on a more advanced cancer, including lymph nodes removal. I'm sure you will recover better and quicker. I didn't have much of an appetite for a few days (probably the effects of anesthetic). Just eat what you fancy but plenty of fibre to keep you bowels moving without having to push. I can't really advise on a return to work but working from home seems a good starting point. Maybe reduced hours initially  but just don't push yourself. Chris 

User
Posted 13 Mar 2022 at 15:47

The catheter is no big deal, really. And you’ll enjoy peeing like a teenager when it comes out. 

Eat prunes and drink prune juice. I was not constipated at all but hearing from friends who were, BEST AVOIDED. 

I had a big scar so YMMV but I REALLY appreciated the hernia belt I bought. 

My fear was not of the op but of the side effects. Daily tadalafil 5mg from day 1, or before if you can get it, helps. 

And Kegel till your eyes pop. 

Good luck: sounds like you’re in good hands

 

SUM

User
Posted 13 Mar 2022 at 16:56

Originally Posted by: Online Community Member

Hi all, well the surgeon was right, he estimated around three months on the waiting list and here I am almost three months on preparing for my RP later this week. I am really nervous but also thankful that I have this treatment option. It seems the surgeon (at QEUH in Glasgow) is really experienced in robotic prostatectomy and I cannot fault the NHS - everyone has been great. 
Can those who have been through this op offer any advice or reassurance ? I process things better when I know what lies ahead. 

I am also wondering about practicalities, what foods I will be able to eat when I get home,  can i do light shopping, how long should I be off work ( I do a desk job and can work from home ).

And call me a big girls blouse but the thought of the catheter makes my eyes water, and I wonder how I’ll get on with it.

I’ll post after the op on my experience in the hope of helping others 

regards, GG

You’re ahead of my husband, he has his surgery on 22nd March. I hope your surgery goes well and you are soon home recuperating. X

User
Posted 13 Mar 2022 at 18:24

Hi GG

Without repeating what others have said, well apart from the fact that although the catheter is a nuisance it is no more than that, I will just say this. You can eat whatever you like after surgery, though you might want to eat more fibre  based foods to ensure you are not constipated for too long (though the hospital will, I am sure, give you a pack or 2 of senna tablets to take home with you). I was told by my consultant that  I should go out walking as soon as I felt up to it but not to overdo it and not to lift anything too heavy (He said anything heavier than a  1KG bag of sugar would be a no, no for the first couple of weeks). You should also not drive for the first 2 weeks after surgery and need to bear in mind that you will have a catheter in post-surgery for at least the first 7 days. So, walking around with that in and the need to periodically empty the bag could present challenges.Re work, if you are office based and no lifting is involved then apart from the fact that you won't be able to drive for 2 weeks and will have a catheter in for at least the first 7 days then going into work should not be a problem.But, if you don't have to why would you want to? Also, you may well feel tired for a few weeks after surgery ( I know I did) and might find that you need to have a little snooze during the day.

Ivan

 

 

 

Ivan

User
Posted 13 Mar 2022 at 18:45

Ask the hospital for some instilagel or hydrocaine in case the catheter makes the eye of the penis sore. Try and avoid constipation, as already said, keeping mobile and fluid intake should help. Snug but not tight short type underwear helps keep the catheter from moving around.

 

A packet of your favourite biscuits or crisps are handy if you lose your appetite. A non fizzy drink makes a change from water. Ask the hospital for some ear plugs and an eye mask, you will still be disturbed for regular obs.

 

Get a couple of spare thigh straps so you can shower. Showe put a dry strap on the other leg and transfer the bag to the dry strap.

 

Have a look at this post.

https://community.prostatecanceruk.org/posts/t24485-Going-in-for-the-Operation---any-tips#post240314

 

Hope all goes well.

Thanks Chris

 

 

User
Posted 13 Mar 2022 at 20:04

I found one strap enough for the shower, as you will have an empty bag. Can't say I had any problem with a sore penis either and I've needed a catheter four times now. IMO the best thing for constipation is having a walk - exercise is good, just don't lift weights! (that means don't push a shopping trolley around Tescos either!)

I worked from home after a week, but only for a few hours a day. I certainly wouldn't go in for a couple of months - no matter how you feel, you won't be back to normal before then.

User
Posted 13 Mar 2022 at 20:52

Originally Posted by: Online Community Member
You should also not drive for the first 2 weeks after surgery and need to bear in mind that you will have a catheter in post-surgery for at least the first 7 days ...... Re work, if you are office based and no lifting is involved then apart from the fact that you won't be able to drive for 2 weeks and will have a catheter in for at least the first 7 days then going into work should not be a problem.

Many car insurers say 2 weeks for any abdominal surgery but some have different rules - either 4 weeks or 'when the surgeon clears you to drive' or 'when you think you can do an emergency stop safely'. You will need to check with your own insurer. If you have a company car, they tend to be more risk averse: my husband's company car insurance wouldn't cover him for 12 weeks and they also wanted a letter from the surgeon confirming he was fit to drive (which the urologist refused to provide). So in the event, he worked from home from about week 9 / 10 and went back to the office at the start of week 13. He did have open surgery though - generally, it is assumed that if you have had robotic / keyhole RP, you may be fit to go to work from about week 6 or 8 ... depending on how continent you are. 

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

User
Posted 13 Mar 2022 at 22:10

My husband had this op last July. Daily pelvic floor exercise after the catheter is removed. He uses the squeeze nhs app. Stock up on pads for when the catheter comes out and he had to ditch the boxers for briefs as they hold the pads in place. He did gentle exercise and although didn’t want to take the oral morphine , pain on day two when at home was significant and he took it for a couple of days. When the catheter is removed incontinence  can be depressing , what goes in goes out almost straight away . But now six months later he is totally dry . Psa undetectable too so the operation was well worth the worries. You might also want a bucket to stand the catheter bag in at night. Stay clear of caffeine and alcohol for a while as these are bladder irritants . Good luck and I hope all goes well.

User
Posted 13 Mar 2022 at 23:10

Best of luck GG.

My husband is a bit older than you and have to say we’ve been really surprised how well things have gone since surgery in terms of recovery.

He ended up having his catheter in for 4 weeks but did really well with it and it didn’t cause too many problems apart from a couple of times where it blocked up a bit with small clots (which was to be expected). I think it’s just about finding your own routine with emptying and showers etc. He had prune juice along with his movicol sachets and ate to a degree what he wanted but meals I made with lots of fibre. We kept up regular painkillers (paracetamol mainly) for about a week whether we thought he needed them or not….just in case. 

I would say just take it easy early on, definitely don’t lift anything….so shopping might be a problem initially. Rob felt a bit tired for a few weeks but he’s 12 weeks post op this week and I would say pretty much back to normal. Continence is really good, just occasional leakage with alcohol. ED still a problem but he also still has HT still in his system. 

Really hope you’re op goes well and recover quickly.

 

 
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