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Is it normal to feel miserable?

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User
Posted 10 Oct 2023 at 19:48

Hi everyone,


My surgery in September 2022 wasn’t successful so now I’m waiting for my PSA to rise sufficiently to have HT and RT. 


I have a little bit of incontinence, requiring I wear a pad every day, and I have total ED.


I feel diminished as a man and husband and have been struggling with work. I’ve been talking to a counsellor for a few months which is helping a bit.


The treatment is likely to be curative, whenever it happens and I realise things could be far, far worse.


Does anyone else feel miserable even though symptoms and outlook aren’t that bad? Sometimes I feel like a total fraud so welcome other thoughts and experiences.


Thanks,


Nick

User
Posted 10 Oct 2023 at 22:18
Hi Nick
I am in the same position as yourself regarding everything except the feelings that you have and so not really sure that I can help. My RARP ended up with a much worse histology report than original diagnosis and left me with total ED. My incontinence is the same as you - one pad a day although sometimes it is clear at the end of the day but a cough or sneeze releases a little.
I thought ED would really affect me - but I quickly discovered that I could have a very nice orgasm with a floppy willy and my wife also enjoys giving me oral - it's different technique of course but I am training her well. The lack of ejaculation is something we both see as a benefit!
She enjoys me returning the favour and we also have a selection of toys that satisfies her. We look at it as what I have lost is far less that what we have gained and even though I know that more treatment is on the horizon, the fact that I will have the time with my lovely wife is such a fantastic way of thinking about it.

We are experimenting with the VED and a cock ring which is more for amusement than real lovemaking - well it seems to reduce us to laughter at every attempt.

I don't know how positive your relationship with your wife was prior to the diagnosis - but supporting her is as important as supporting yourself and I have found that you get back twice what you put into a relationship. Maybe seeing if you can get a couples councilling is a possibility - a problem shared etc.

It really sounds as you need support to get you head around this and maybe there are local support groups such as Maggies that might be worth looking for.

Good luck - we are all walking similar paths.
User
Posted 11 Oct 2023 at 13:40

Ian,


Yes, you’re right. I completely lost my running mojo after the op and it was only in the summer when it became clear that I’d need HT and RT that I thought I’d better start again.


My first, and ongoing, goal is to get as fit as I can be to ward off the fatigue that I believe comes with treatment. When the start of my treatment got delayed (because the PSMA PET scan didn’t confirm the cancer location), I signed up to a local 10k, which I ran on Sunday. 


running definitely helps my mood, not just in the immediate aftermath but from the knowledge that I’m taking positive steps to face up to the cancer. 


I hope you get the same effects. My biggest recommendation to men at any stage of this, based on my limited experience, is to stay physically active. Walking, running, swimming, yoga, Pilates, gardening, gym. Anything to get the blood pumping and stay strong. It might not stop the cancer growing but it will make you feel better.


Cheers


Nick

User
Posted 12 Oct 2023 at 19:59

Bit of an update: PSA has risen from 0.17 to 0.4 so another (my third, I’ll be glowing soon) PSMA PET scan in 6 weeks then decision time. My inclination is to start treatment, but will see how it goes.


@Franci, thanks for the words. The lovely onco really described what sounds like an educated guessing game when it comes to low levels of rising PSA, when and if to start SRT etc. They expect it to be in the prostate bed but even if it’s there or somewhere else it may not all be picked up by the scan. Too early for a choline scan. 


@elaine, thanks too. My first PSMA PET was prior to surgery, just to check out a shadow on the pelvis (just wear and tear) and my PSA then was about 22. The second was when it was at 0.17 where nothing showed up and this coming one will obvs be at 0.4. We’re hoping we’ll see something this time! With a Gleason of 7 she’s not worried that the cancer will jump ship and start roaming around my body, which is very reassuring.


I asked her to sign me off for 4 weeks which she happily did. Then she escorted us to meet the Macmillan support worker who was great. I’m now in line for reiki, a support group, relaxation sessions and maybe a weeks stay in a caravan. She was great with Mrs Nick also. We were both close to tears - it happens when someone is so nice to you doesn’t it!


It does sound like your husband’s situation is very similar to mine. I expect I’ll end up choosing to go for treatment after the scan but we’ll see. I should have 2 months HT, 6 weeks RT then 2 or 3 years more HT. Is that what Rob is facing?


Now I’m off for a while, I think the pump and pills will be coming out of the cupboard while the kids are at school!


I hope you stay strong for each other,


Nick

User
Posted 13 Oct 2023 at 09:45

Yes very similar in terms of the pet scans. Rob had one before surgery too as his bone scan showed a positive met. 


That’s good you’re having another scan at 0.4 then….it’s very difficult because you don’t want any cancer to be there but it’s also handy to know where it could be lurking 🤷🏻‍♀️people were wishing rob good luck for his scan and I wasn’t quite sure what a good result was! Of course glad there was no huge mass of cancer somewhere but also unsure now if all the treatment could be for nothing.


With Rob being upgraded to G9 we felt we couldn’t wait, only time will tell. He started his HT about 10 weeks ago and the plan is for 2 years but will see how he goes. His RT will be for 4 weeks starting a week on Monday.


So glad that you have managed to find some support groups and relaxation treatments for you and your wife. It’s really important to look after your mental well-being also. I had some counselling in the very early days but we seem much better 2 years on. As long as Rob gets up every day looking and feeling well, and able to be his usual active self and getting on enjoying life then I’m ok with that….my aim is to keep every day like that and then in reality it doesn’t matter that he has cancer. 


Keep us updated on your scan Nick and wishing you and your wife all the very best x

User
Posted 11 Oct 2023 at 09:20

Harty,


I’m sorry to hear your circumstances. You’ve got a lot on your plate already without this bloody disease. 


I agree, being alive is certainly preferable to the alternative, even if it does come with the downsides. And I’m sure we’re all grateful for that on this site. Whatever treatment route you take, there will be ups and downs. My surgeon said I’d have good days and bad days, which was spot on; I expect you’ll be the same.


It’s good that you’ve found this site because there are so many varying experiences,  it’ll help you make an informed decision. 


Cheers


Nick

User
Posted 12 Oct 2023 at 09:20

Ohwow, 


One of the good things to come out of this has been that I’m less likely to judge people. As you say, many people have their own health issues, physical or mental, so I take it easier on them than before. And if people don’t understand why I’m feeling down then I try not to be upset or angry - how can they possibly know how I feel if they haven’t been in the same circumstances? None of that is easy to do but I try. 


I hope things turn out ok for you. It’s a long and winding path, good luck.


Nick


 

User
Posted 12 Oct 2023 at 09:53
Nick having read your profile just now the stress of an ongoing PSA issue after primary treatment should not be underestimated.

Personally I have found work helpful and my new "don't give a s***" attitude has actually helped me in many ways to get things done because I no longer feel suppressed and say stuff like it is.

Re your treatment did the Onco explain why he thinks waiting until 1.0 for SRT s a good idea? I have read a few papers now which still support early SRT @ <0.25 even with negative PSMA

User
Posted 12 Oct 2023 at 14:32

Hi Nick,


Sorry to hear you haven’t been feeling at your best. It’s always a difficult time when you find you have a recurrence. We’re of course in the same situation but I think I had prepared us really well for that day, so we handled it better than I thought….although still have our moments of course.


Just following what Francij has wrote above. I see your PSA was 0.17 when you had your first PSMA scan, do you know what it was at the 2nd scan??


Rob had his at 0.164….although I think around the time of the scan we had another test of 0.221. His PSMA scan was also clear. We were given the choice to go ahead and start treatment asap with RT targeting prostate bed and nodes as a ´best guess’ sort of situation. (Oncologist recommended this as best option). We could have also waited for PSA to rise further and have another PSMA scan….she said a figure of 0.5 for re scan. It’s a difficult choice and no idea if we made the right one but if the correct area is targeted then we hope it’s good we went early 🤷🏻‍♀️


Rob has been on hormones about 10 weeks, he’s had his planning scan and RT starts 23rd October.


For us the HT has the biggest impact on sex life as he has no interest now. The ED actually seemed less of a problem. Again though my priority is that he is here and is well and thankfully life is still very good for us at this point.


Wishing you all the very best Nick 👍


Elaine

User
Posted 15 Oct 2023 at 00:07

Yes it’s really difficult not knowing. I’m just hoping Rob’s is in an area they are targeting and will kill it all 🤞🏼🙏🏼


So far with the HT he seems ok but of course it’s early days, he seems to have a few little aches (which I hope is the HT and nothing more sinister) fortunately he’s not having any flushes yet and he’s still able to be his usual non stop self! I think he is a little more tired at times but he is 75 now too. Like you say though everyone seems to have very different experiences x


 

User
Posted 01 Dec 2023 at 23:34

Originally Posted by: Online Community Member


I also spoke to an old client and friend who is almost exactly a year ahead of me having had very similar experience of recurrence (and had HT/RT.) He’s ex military and said his journey is like being given a hand grenade and told to hold onto it. I wonder how many others have felt like this?


Nick



Hi Nick.


Like you I had bilateral disease. I had RARP in Feb this year, pathology of removed prostate showed it had breached the capsule, Gleason 9 (4+5) T3a. I've had 3 x 3 monthly PSA checks since, all undetectable, but have been told there's still a 50% chance of recurrence. 


I'm a young 67 year old, ex Army, ex Old Bill so pretty bomb proof. My previous occupations have given me a dark sense of humour and this has helped me cope. I'm also still pretty fit.  Like you, until I was in my early 50's, I was running 5 miles every day and doing 5 sets of 80 press ups daily. Despite being mentally and physical quite strong, I've still had difficulty in dealing with this set back. I like to be in control of my life but this disease often seems to have a chaotic life of its own.  There are so many uncertainties and so much waiting about for procedures and results.


What I find most difficult to deal with is the anguish it has caused my loved ones. I have posted before, that my heart goes out to younger men, like your good self, who have younger families and work commitments. I'd struggle to cope in those circumstances and I salute you for the way your dealing with the situation.


Keep your chin up mate. You're doing well, and should be proud of yourself.


As for the hand grenade analogy, always remember you're as safe as houses so long as you manage to keep the pin in.


Best of luck.


Adrian

Edited by member 01 Dec 2023 at 23:51  | Reason: Not specified

User
Posted 02 Dec 2023 at 07:48

Adrian thanks. There’s no telling how or when this disease is going to affect you, no matter how robust you are, is there? Another analogy: it’s like the proverbial rollercoaster but not one you want to be on or can get off.


I agree about the effect it has on loved ones although I count myself incredibly lucky to have a rock solid wife (who happens to be a counsellor, often of cancer patients) and two surprisingly mature teenagers (when it comes to my illness, not necessarily their own lives!) My dad was diagnosed with it two months before me, so my poor old mum has had a lot to shoulder too.


It’s a cliche but talking about it is very helpful. Whack it all out there and ask for help. I went to my first PC support group meeting on Thursday and it was great to compare notes, horror stories and jokes. Nobody was shy about talking about leakages or their old chap not standing to attention! Plus it was quiz night, and I came home with a box of chocolate biscuits, so every cloud and all that…


Good advice about the grenade. Let’s hope the pin stays firmly in position and yours doesn’t make an unwelcome reappearance.


Cheers


Nick


 

User
Posted 02 Dec 2023 at 07:57

Nick, difficult situation to be in. There are lots of debates on the right time for salvage RT. Mine was done at around 0.23 based on the educated guess, obviously something was in the bed because the PSA dropped but presumably there was something out side the bed because the PSA then began to rise again. In the last 18 months I have had two separate lots of saber treatment to two separate tumors.  SRT didn't do me any favours but not having SRT would not have done me any favours either. 


A PSMA is not guaranteed to pick up anything,  we have on here a PSMA picking up something at 0.023 and nothing at 200. 


As you say you need to trust your oncologist's advice.


Hope you get a resolution.


Thanks Chris 

User
Posted 02 Dec 2023 at 08:07

I think talking about is so important. The only people I wanted to talk about it to was my close family, and I couldn’t watch ANYTHING about ANY cancer on the TV. All that was before I joined my local Maggies Cancer Support Group, Then  I began to open up and come to terms with this rollercoaster ride.  I find some of the Group, with a far worse prognosis than mine,  truly inspirational.  Now I’m comfortable about telling anyone about my cancer, and if I’m having a bad week I always come away from the meetings feeling SO much better. I’ve also made many new friends from the Group and we support each other.


At yesterdays meeting we had someone from ‘Andys Mans Club’ come along and tell us all about his j9jrney and how the club had helped him through the years.


I know some Support Groups are not as good as mine but it’s well worth giving it a try…even if you THINK you are coping.


My biggest concern is that if my primary treatment  of HT/RT doesn’t get it all then what’s next for me as a don’t have the option of SRT, and HT for life scares me😱


All the best to everyone on this unwanted ‘journey’.


Derek

Edited by member 02 Dec 2023 at 08:10  | Reason: Not specified

User
Posted 02 Dec 2023 at 08:59

Hi Nick, 


Low mood hit me a couple of months post op and I have to say.. speaking to a councillor definitely helps. 


Like you I had a positive margin and PSA started creeping up around 18 months post op. I had SRT to the prostate bed last year and so far so good. 


Really hope things pan out for you. 


Good luck. 


Kev.


 

User
Posted 02 Dec 2023 at 19:07
Actually that may be the other way around! Anyway whichever one is best for detecting prostate bed recurrence I had the other!
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User
Posted 10 Oct 2023 at 22:18
Hi Nick
I am in the same position as yourself regarding everything except the feelings that you have and so not really sure that I can help. My RARP ended up with a much worse histology report than original diagnosis and left me with total ED. My incontinence is the same as you - one pad a day although sometimes it is clear at the end of the day but a cough or sneeze releases a little.
I thought ED would really affect me - but I quickly discovered that I could have a very nice orgasm with a floppy willy and my wife also enjoys giving me oral - it's different technique of course but I am training her well. The lack of ejaculation is something we both see as a benefit!
She enjoys me returning the favour and we also have a selection of toys that satisfies her. We look at it as what I have lost is far less that what we have gained and even though I know that more treatment is on the horizon, the fact that I will have the time with my lovely wife is such a fantastic way of thinking about it.

We are experimenting with the VED and a cock ring which is more for amusement than real lovemaking - well it seems to reduce us to laughter at every attempt.

I don't know how positive your relationship with your wife was prior to the diagnosis - but supporting her is as important as supporting yourself and I have found that you get back twice what you put into a relationship. Maybe seeing if you can get a couples councilling is a possibility - a problem shared etc.

It really sounds as you need support to get you head around this and maybe there are local support groups such as Maggies that might be worth looking for.

Good luck - we are all walking similar paths.
User
Posted 10 Oct 2023 at 22:18

Nick,


We had our treatments in the very same month. I have noticed that I am considerably more emotional than I have ever been in my adult life. Tears of joy, tears of sadness, it does not take much for them to turn on.


You've been through a hell of a ringer so you have every right to feel how you like. Glad you have got some support in place, men are not good at talking for sure. 

User
Posted 10 Oct 2023 at 22:27

I would agree that men are not good at talking but I have found through Maggies that when new members join the group, initially they are very quiet but once they realise how relaxed and open the other members are, they soon open up and talk freely….and they feel much better for it.


Derek

User
Posted 10 Oct 2023 at 23:10

@steve thanks, glad to hear you’re getting on with things. I have packets of vardenafil in the bathroom and a pump in the cupboard, both unused. I’m 52 and think the prospect of many years of ED has just put me off the whole game. My wife is amazing and I think understands. We’ll get to it eventually I hope.


@Jim hello again! I’m afraid joy doesn’t come into my life that much. I’m more at the other end of the spectrum mostly, at least at the moment. Finding people who understand the ins and outs (so to speak) of PCa and who really understand the ramifications of treatment is tricky. There’s no Maggies where I am but I have my next three monthly PSA review on Thursday so will ask about support groups. I hope all’a going ok for you.


@derek thanks, talking to those in the know is what I need I think 


thanks all


Nick

User
Posted 11 Oct 2023 at 08:43

Hi Nick


 


Yes, in a word. I am on active surveillance after a second opinion on my diagnosis made it an option originally denied.


I am thoroughly miserable about the whole thing, and cant stop questioning whether the original pathologist was right and I am being stupid. I know, and am constantly reminded, that this is arguably a far better option than facing up to the side effects of treatment sooner than necessary. However, I cannot seem to shake off the low mood that has been hanging around since my MRI result some months ago. I think I was tending towards mild depression before this even started, as my mother has terminal cancer, and my younger brother has just undergone major surgery for oesophogeal cancer.


I think we just have to remember that there is always someone worse off than us, including a lot of the stalwarts of this site. I know that I will at some point (possibly sooner rather than later) suffer these side effects, but hey, you've got to be alive to pee in your pants eh!


Try and stay positive mate.

User
Posted 11 Oct 2023 at 09:20

Harty,


I’m sorry to hear your circumstances. You’ve got a lot on your plate already without this bloody disease. 


I agree, being alive is certainly preferable to the alternative, even if it does come with the downsides. And I’m sure we’re all grateful for that on this site. Whatever treatment route you take, there will be ups and downs. My surgeon said I’d have good days and bad days, which was spot on; I expect you’ll be the same.


It’s good that you’ve found this site because there are so many varying experiences,  it’ll help you make an informed decision. 


Cheers


Nick

User
Posted 11 Oct 2023 at 10:08

You have my sympathies.


Had my RP five years ago and have recently completed RT and am on HT, as my PSA has been rising again.


Most the of time I stay happy and upbeat but sometime I can have some really low moments.


Enjoy the good days and don't let the bad days get you down.


 


Good Luck from a fellow survivor!


 


 

User
Posted 11 Oct 2023 at 10:28

Thanks Alan, were you working when you were diagnosed?

User
Posted 11 Oct 2023 at 11:49

Nick


I think I read in your bio that you're a runner? Hopefully that will help with the mental stress. I have just started trying to get out again after a few months of not bothering, and I am finding it makes a big difference to my state of mind.


Ian.

User
Posted 11 Oct 2023 at 13:40

Ian,


Yes, you’re right. I completely lost my running mojo after the op and it was only in the summer when it became clear that I’d need HT and RT that I thought I’d better start again.


My first, and ongoing, goal is to get as fit as I can be to ward off the fatigue that I believe comes with treatment. When the start of my treatment got delayed (because the PSMA PET scan didn’t confirm the cancer location), I signed up to a local 10k, which I ran on Sunday. 


running definitely helps my mood, not just in the immediate aftermath but from the knowledge that I’m taking positive steps to face up to the cancer. 


I hope you get the same effects. My biggest recommendation to men at any stage of this, based on my limited experience, is to stay physically active. Walking, running, swimming, yoga, Pilates, gardening, gym. Anything to get the blood pumping and stay strong. It might not stop the cancer growing but it will make you feel better.


Cheers


Nick

User
Posted 11 Oct 2023 at 14:28

Nick


 


Yes I lost interest after my biopsy really. Had to take a week out for obvious reasons, then was too stressed to bother until diagnosis, after which I sort of lost the plot with most things.


Back at it now though. Want to run an ultra next year, as I will hit 60 and refuse to grow old gracefully! I also think I might as well be as fit as possible for the foreseeable future, to help with whatever this disease brings.


Cheers


Ian.

User
Posted 11 Oct 2023 at 14:43

Ian,


My thoughts too, although I doubt I’ll stretch to an ultra! Are you still working?


N

User
Posted 11 Oct 2023 at 14:47

Nick


Yes unfortunately so. It'll be another 2 or 3 years until I can afford to call it a day. Makes training for anything a bit of a pain in the winter months, but the treadmill/Zwift option is my fallback. I think an ultra will be a big challenge, but having done a marathon a few years back, it seemed like the next goal to aim for. We'll see....


Ian.

User
Posted 11 Oct 2023 at 15:55

Hi Ian


I ran London marathon a few years ago which means mainly winter training so I know what you mean. One marathon was enough for me though!


I’d be interested in your experiences of working, as I get the impression most on this site are retired. I’ve actually had to take a few days off at the moment because I’ve hit a wall when it comes to decision making and good ideas. In fact I’d say it’s the biggest mental challenge I have, almost more than the treatment itself. Is it a breeze for you?


Nick

User
Posted 11 Oct 2023 at 15:55

Hi Nick Plym


It is quite shocking for me to see so many relatively young  men (compared with me who was diagnose at 72, surgery 12 years ago and still here!) diagnosed with this life threatening or at the very least affecting your quality of life, particularly sex life. 


Nick, what you are feeling is perfectly normal. When I was diagnosed our world fell apart, so we thought. But with encouragement from my kind urologist and support from my wife I began to feel that there was life after this catastrophe. Very slowly but surely I began to recover and now we are once again enjoying life. We always had a very satisfying sex life which we were determine to reclaim and have done so. Even now we are amazed at what we have managed to achieve. Because of my age my erections were waning anyway so after my surgery I did not expect a miracle and we began to look at alternative approaches to our love making. Because of my age and the surgery I decided to use a pump and in many ways our sex life is better than it was just before the surgery.


You have a pump gathering dust in the cupboard. May I suggest you start using it regularly to remind your penis of its enjoyable function. Get the blood flowing. You may wish to following the link below to see how it is possible to re-claim your sex life; if you send me a private message I will send you a video on how best to use a pump.


Best wishes


Pratap


https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 '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 11 Oct 2023 at 16:40

Pratap, thank you. I read your posts which I found very informative and encouraging. I recommend others follow the link too.


I have a PSA review with the onco tomorrow so may or may not be feeling up to it, but will try and break out the pump and give it a whirl. But as you’ve said, a great sex life starts in the mind. Better get that sorted too.


Thanks again


Nick

User
Posted 11 Oct 2023 at 17:18

Yes, although I'm now retired.


I worked with some very supportive people.


I was able to be very positive at work, except when I got a call saying that my bone scan had picked up cancer cells on my ribs, at which point I broke down completely. 


The next day I was able to return to my positive self and no one mentioned the previous days events.

User
Posted 11 Oct 2023 at 19:40

Nick


I ran Brighton in 2018. My first and only marathon. Scraped 4:24 but have never been tempted to try and beat it.


I am struggling with work too. I haven’t even started any treatment yet. I was all teed up for RP then they regraded my diagnosis at the second hospital. I am currently on AS, but the stress of all this is making work quite tricky. Can’t really concentrate on things for long and this sounds awful, but I don’t really care about it at the minute. It doesn’t seem important in the grand scheme of things.


Take some time out if you need it, and go back only when you’re ready. Your health (mental and physical) is more important than the job.


Chin up mate


ian.

Edited by member 11 Oct 2023 at 19:56  | Reason: Not specified

User
Posted 11 Oct 2023 at 20:39

Alan, sounds like we’ve both been lucky with our colleagues. I’m one of three partners in a small firm so am fully aware of the impact my situation has. Unfortunately it’s a double edged sword, I am deeply grateful for their support but at the same time feel immense pressure to not let the side down.


I also try to stay positive but that can give people the impression that I’m sailing through it, like a stoic. Things came to a head this week and I think my pressure valve has gone, hence taking time off work. It’s so unlike me to feel so down, I have to say it’s taken me by surprise. 

User
Posted 11 Oct 2023 at 20:54

Ian, 


Thanks for words of support. Sounds like we’re in the same boat, mental wise. I don’t think it matters where you are on your cancer story to feel rubbish, it’s a bit like Cato in the Pink Panther, jumping out on Peter Sellers. Not now Cato you fool!


Work-wise, the reduction in the amount you give a sh*t is quite alarming isn’t it?! As you say, concentration lapses, good enough becomes good enough (when it should never be) and I’ve found I’ve become Mr Slopey Shoulders, handing off work to everyone else. Thank goodness for decent and accepting colleagues. 


One good thing is that I’m lucky in that my critical illness cover paid out so money is much less of an issue than it was. But that’s only a minor saving grace. 


I am considering stepping back for a while but like you, I’m waiting for my next treatment to begin so feel a bit of a fraud for even thinking about it now. 


In running news, I ran London in 2018 at just over 4 hours. It was the hottest year they’ve had and it was in equal parts amazing and awful. But you know what Steve Winwood says…


Keep on running


cheers

User
Posted 11 Oct 2023 at 23:49
Hi Nick

On the work front, I totally agree.
Quite often I find myself thinking why do employees make such a drama out of minor issues, and I get quite irritated with them. Its not their fault, and most are only trying to do a good job, but my head space is saying these issues are just not important anymore.
If I get into conversations with any about health issues, you find almost everyone (certainly over a certain age) has their own health dilemmas to deal with, serious or none serious.

Life goes on and your priority and focus drastically changes when faced with such things as PCa.
User
Posted 12 Oct 2023 at 09:20

Ohwow, 


One of the good things to come out of this has been that I’m less likely to judge people. As you say, many people have their own health issues, physical or mental, so I take it easier on them than before. And if people don’t understand why I’m feeling down then I try not to be upset or angry - how can they possibly know how I feel if they haven’t been in the same circumstances? None of that is easy to do but I try. 


I hope things turn out ok for you. It’s a long and winding path, good luck.


Nick


 

User
Posted 12 Oct 2023 at 09:53
Nick having read your profile just now the stress of an ongoing PSA issue after primary treatment should not be underestimated.

Personally I have found work helpful and my new "don't give a s***" attitude has actually helped me in many ways to get things done because I no longer feel suppressed and say stuff like it is.

Re your treatment did the Onco explain why he thinks waiting until 1.0 for SRT s a good idea? I have read a few papers now which still support early SRT @ <0.25 even with negative PSMA

User
Posted 12 Oct 2023 at 14:32

Hi Nick,


Sorry to hear you haven’t been feeling at your best. It’s always a difficult time when you find you have a recurrence. We’re of course in the same situation but I think I had prepared us really well for that day, so we handled it better than I thought….although still have our moments of course.


Just following what Francij has wrote above. I see your PSA was 0.17 when you had your first PSMA scan, do you know what it was at the 2nd scan??


Rob had his at 0.164….although I think around the time of the scan we had another test of 0.221. His PSMA scan was also clear. We were given the choice to go ahead and start treatment asap with RT targeting prostate bed and nodes as a ´best guess’ sort of situation. (Oncologist recommended this as best option). We could have also waited for PSA to rise further and have another PSMA scan….she said a figure of 0.5 for re scan. It’s a difficult choice and no idea if we made the right one but if the correct area is targeted then we hope it’s good we went early 🤷🏻‍♀️


Rob has been on hormones about 10 weeks, he’s had his planning scan and RT starts 23rd October.


For us the HT has the biggest impact on sex life as he has no interest now. The ED actually seemed less of a problem. Again though my priority is that he is here and is well and thankfully life is still very good for us at this point.


Wishing you all the very best Nick 👍


Elaine

User
Posted 12 Oct 2023 at 19:59

Bit of an update: PSA has risen from 0.17 to 0.4 so another (my third, I’ll be glowing soon) PSMA PET scan in 6 weeks then decision time. My inclination is to start treatment, but will see how it goes.


@Franci, thanks for the words. The lovely onco really described what sounds like an educated guessing game when it comes to low levels of rising PSA, when and if to start SRT etc. They expect it to be in the prostate bed but even if it’s there or somewhere else it may not all be picked up by the scan. Too early for a choline scan. 


@elaine, thanks too. My first PSMA PET was prior to surgery, just to check out a shadow on the pelvis (just wear and tear) and my PSA then was about 22. The second was when it was at 0.17 where nothing showed up and this coming one will obvs be at 0.4. We’re hoping we’ll see something this time! With a Gleason of 7 she’s not worried that the cancer will jump ship and start roaming around my body, which is very reassuring.


I asked her to sign me off for 4 weeks which she happily did. Then she escorted us to meet the Macmillan support worker who was great. I’m now in line for reiki, a support group, relaxation sessions and maybe a weeks stay in a caravan. She was great with Mrs Nick also. We were both close to tears - it happens when someone is so nice to you doesn’t it!


It does sound like your husband’s situation is very similar to mine. I expect I’ll end up choosing to go for treatment after the scan but we’ll see. I should have 2 months HT, 6 weeks RT then 2 or 3 years more HT. Is that what Rob is facing?


Now I’m off for a while, I think the pump and pills will be coming out of the cupboard while the kids are at school!


I hope you stay strong for each other,


Nick

User
Posted 13 Oct 2023 at 09:45

Yes very similar in terms of the pet scans. Rob had one before surgery too as his bone scan showed a positive met. 


That’s good you’re having another scan at 0.4 then….it’s very difficult because you don’t want any cancer to be there but it’s also handy to know where it could be lurking 🤷🏻‍♀️people were wishing rob good luck for his scan and I wasn’t quite sure what a good result was! Of course glad there was no huge mass of cancer somewhere but also unsure now if all the treatment could be for nothing.


With Rob being upgraded to G9 we felt we couldn’t wait, only time will tell. He started his HT about 10 weeks ago and the plan is for 2 years but will see how he goes. His RT will be for 4 weeks starting a week on Monday.


So glad that you have managed to find some support groups and relaxation treatments for you and your wife. It’s really important to look after your mental well-being also. I had some counselling in the very early days but we seem much better 2 years on. As long as Rob gets up every day looking and feeling well, and able to be his usual active self and getting on enjoying life then I’m ok with that….my aim is to keep every day like that and then in reality it doesn’t matter that he has cancer. 


Keep us updated on your scan Nick and wishing you and your wife all the very best x

User
Posted 13 Oct 2023 at 20:34

Hi Elaine


Thanks very much. The not knowing exactly where the cancer is I find very frustrating. I just want to get on with treatment to be honest so I’m hopeful that we’ll do that and I can get out of the state of limbo. 


All the best to Rob. I’d be interested to hear how his HT goes . I know everyone’s experience is different so I’m trying to read plenty to get a rounded picture. I’m hoping the local support group will be useful in that respect too.


I have a couple of counselling sessions left, which I think will have been very helpful. Finding someone with experience of working with cancer patients has been great, I recommend it. 


I’ll update about the scan.


Nick

User
Posted 15 Oct 2023 at 00:07

Yes it’s really difficult not knowing. I’m just hoping Rob’s is in an area they are targeting and will kill it all 🤞🏼🙏🏼


So far with the HT he seems ok but of course it’s early days, he seems to have a few little aches (which I hope is the HT and nothing more sinister) fortunately he’s not having any flushes yet and he’s still able to be his usual non stop self! I think he is a little more tired at times but he is 75 now too. Like you say though everyone seems to have very different experiences x


 

User
Posted 01 Dec 2023 at 22:11

Quick update:


PSA has risen from 0.4 to 0.53 in about 7 weeks but still no sign of the cancer cells on the PSMA PET scan. I decided to continue active surveillance, waiting for it to get to 1.0 and have another scan. If still no show then wait to get to 2.0 and have a choline PET scan. 


Advantages of waiting are: 1) to give more time for innards to repair post-surgery, which increases chance of better continence outcome; and 2) to give more time to try and get some sort of sexual function back before HT/RT starts. If I still have complete ED before then, the chances of regaining any is apparently remote if not impossible. Neither Mrs Nick or me were really aware that was the case, so a bit of a shock. 


In other news, I am feeling mentally well enough to start gradually going back to work. It’s taken about 7 weeks of being off work to get myself back to this point. I’ve done a lot to help myself: counselling, talking to hospital cancer unit support workers, reiki, breathing exercises, surfing, running, better diet, bird watching, making airfix model aeroplanes, gardening, walking, joining the gym and getting a personal trainer, seeing family, starting going to local support group, talking to Mrs Nick. I can’t say that any one thing has been more helpful than the rest, but I know that having the time off work to do all those things has been key (and not thinking about work!)


I also spoke to an old client and friend who is almost exactly a year ahead of me having had very similar experience of recurrence (and had HT/RT.) He’s ex military and said his journey is like being given a hand grenade and told to hold onto it. I wonder how many others have felt like this?


Nick

User
Posted 01 Dec 2023 at 23:13
Slightly concerned you are delaying salvage therapy when you had a positive margin. There is a good chance you know where it is, waiting until 1.0 or 2.0 means there is a good chance it will be somewhere else too.

Did your onco recommend waiting,??
User
Posted 01 Dec 2023 at 23:34

Originally Posted by: Online Community Member


I also spoke to an old client and friend who is almost exactly a year ahead of me having had very similar experience of recurrence (and had HT/RT.) He’s ex military and said his journey is like being given a hand grenade and told to hold onto it. I wonder how many others have felt like this?


Nick



Hi Nick.


Like you I had bilateral disease. I had RARP in Feb this year, pathology of removed prostate showed it had breached the capsule, Gleason 9 (4+5) T3a. I've had 3 x 3 monthly PSA checks since, all undetectable, but have been told there's still a 50% chance of recurrence. 


I'm a young 67 year old, ex Army, ex Old Bill so pretty bomb proof. My previous occupations have given me a dark sense of humour and this has helped me cope. I'm also still pretty fit.  Like you, until I was in my early 50's, I was running 5 miles every day and doing 5 sets of 80 press ups daily. Despite being mentally and physical quite strong, I've still had difficulty in dealing with this set back. I like to be in control of my life but this disease often seems to have a chaotic life of its own.  There are so many uncertainties and so much waiting about for procedures and results.


What I find most difficult to deal with is the anguish it has caused my loved ones. I have posted before, that my heart goes out to younger men, like your good self, who have younger families and work commitments. I'd struggle to cope in those circumstances and I salute you for the way your dealing with the situation.


Keep your chin up mate. You're doing well, and should be proud of yourself.


As for the hand grenade analogy, always remember you're as safe as houses so long as you manage to keep the pin in.


Best of luck.


Adrian

Edited by member 01 Dec 2023 at 23:51  | Reason: Not specified

User
Posted 02 Dec 2023 at 07:31

Francij - thanks. Yes the onco said ‘if it was me I’d wait’ so I have to trust her reading of the situation and assume she wouldn’t say that unless the benefits significantly outweigh the risks. But I also know that we will consider our options at every three monthly PSA test and change course as the circumstances dictate. 


Thanks


Nick

User
Posted 02 Dec 2023 at 07:45
Obviously you can't say who made that recommendation but you can say where? The logic of waiting until it's detectable on a scan appeals to me, my ONCO wants to blast everything at 0.2 regardless.
User
Posted 02 Dec 2023 at 07:48

Adrian thanks. There’s no telling how or when this disease is going to affect you, no matter how robust you are, is there? Another analogy: it’s like the proverbial rollercoaster but not one you want to be on or can get off.


I agree about the effect it has on loved ones although I count myself incredibly lucky to have a rock solid wife (who happens to be a counsellor, often of cancer patients) and two surprisingly mature teenagers (when it comes to my illness, not necessarily their own lives!) My dad was diagnosed with it two months before me, so my poor old mum has had a lot to shoulder too.


It’s a cliche but talking about it is very helpful. Whack it all out there and ask for help. I went to my first PC support group meeting on Thursday and it was great to compare notes, horror stories and jokes. Nobody was shy about talking about leakages or their old chap not standing to attention! Plus it was quiz night, and I came home with a box of chocolate biscuits, so every cloud and all that…


Good advice about the grenade. Let’s hope the pin stays firmly in position and yours doesn’t make an unwelcome reappearance.


Cheers


Nick


 

User
Posted 02 Dec 2023 at 07:54

I’m in Plymouth, but I don’t know if every onco does it their own way, even within a department.  Maybe I struck lucky. 


Good luck with it


N

User
Posted 02 Dec 2023 at 07:57

Nick, difficult situation to be in. There are lots of debates on the right time for salvage RT. Mine was done at around 0.23 based on the educated guess, obviously something was in the bed because the PSA dropped but presumably there was something out side the bed because the PSA then began to rise again. In the last 18 months I have had two separate lots of saber treatment to two separate tumors.  SRT didn't do me any favours but not having SRT would not have done me any favours either. 


A PSMA is not guaranteed to pick up anything,  we have on here a PSMA picking up something at 0.023 and nothing at 200. 


As you say you need to trust your oncologist's advice.


Hope you get a resolution.


Thanks Chris 

User
Posted 02 Dec 2023 at 08:07

I think talking about is so important. The only people I wanted to talk about it to was my close family, and I couldn’t watch ANYTHING about ANY cancer on the TV. All that was before I joined my local Maggies Cancer Support Group, Then  I began to open up and come to terms with this rollercoaster ride.  I find some of the Group, with a far worse prognosis than mine,  truly inspirational.  Now I’m comfortable about telling anyone about my cancer, and if I’m having a bad week I always come away from the meetings feeling SO much better. I’ve also made many new friends from the Group and we support each other.


At yesterdays meeting we had someone from ‘Andys Mans Club’ come along and tell us all about his j9jrney and how the club had helped him through the years.


I know some Support Groups are not as good as mine but it’s well worth giving it a try…even if you THINK you are coping.


My biggest concern is that if my primary treatment  of HT/RT doesn’t get it all then what’s next for me as a don’t have the option of SRT, and HT for life scares me😱


All the best to everyone on this unwanted ‘journey’.


Derek

Edited by member 02 Dec 2023 at 08:10  | Reason: Not specified

User
Posted 02 Dec 2023 at 08:59

Hi Nick, 


Low mood hit me a couple of months post op and I have to say.. speaking to a councillor definitely helps. 


Like you I had a positive margin and PSA started creeping up around 18 months post op. I had SRT to the prostate bed last year and so far so good. 


Really hope things pan out for you. 


Good luck. 


Kev.


 

User
Posted 02 Dec 2023 at 09:18

Originally Posted by: Online Community Member


My dad was diagnosed with it two months before me, so my poor old mum has had a lot to shoulder too.



My father was diagnosed with it when he was 77 years. I think he was just treated with HT and lived another 11 years. He soldiered on but his last couple of months weren't easy. 


Unfortunately, very shortly after dad died, my younger brother was diagnosed with the disease and opted for HT/RT.  A couple of years later I was diagnosed and elected AS.  Two years later, the disease had aggressively progressed, and I had RARP.


What concerns me is I have two sons, 45 and 43, and I often wonder whether they'll get it. Ironically, the youngest is a doctor of genetics but he doesn't seem overly concerned.


Like yours, my wife is very supportive. I'm sure she's coping a lot better with me having cancer than I would if she had it.


As you say, life is certainly a roller coaster. Two months after my prostatectomy, I had a heart attack and had to spend  two weeks on a cardiology ward,  whilst still recovering from the prostate op. There were poor blokes in there waiting for triple bypasses, who were feeling sorry for me.  Their reaction showed me, that most people are more afraid of cancer than other more life threatening diseases.


But whatever our circumstances, there's always someone much worse off.


I can remember, when I was in the Old Bill, getting a call from a very distraught mum that her nine year old son had run away from home.


It was a foul winter night, freezing cold and sleeting. Me and the lad's dad went searching for him. Eventually, about two hours later, we found him huddled by the bins at the local secondary school. He was soaking wet, extremely cold, and clutching his favourite Action Man.


It wasn't until he was safely back home, that I fully understood why he'd done a runner. He had some form of blood cancer and was due more unpleasant treatment at hospital the following day. The poor young kid was so frightened that he couldn't face the prospect of anymore pain and sickness.


I  often think of that little lad, and wonder if he's still with us. It certainly puts life into perspective.


 Sorry for hijacking your conversation. It wasn't until I read back over it, that I realised how much I'd rambled on.

Edited by member 02 Dec 2023 at 23:33  | Reason: Typos tons of them

User
Posted 02 Dec 2023 at 13:11

Chris,


I am holding out for some certainty but understand that the scan isn’t foolproof.  I think that’s why she was suggesting the choline scan if the PSMA wasn’t showing anything. 


It’s a bit of a juggling act isn’t it?


Decho,


I completely agree that talking really helps, especially to people who either have personal experience of it or who are experts. I’ve found a support worker at the MacMillan centre at my hospital who was an oncology nurse for 30 years and is full to the brim with common sense and wisdom. I was lucky to find her but you need to put yourself out there and ask what’s available. I have been surprised at what is available to me.


I really hope you won’t need a second line of defence and that your treatment continues to work for you.


Kev, glad to hear things are going well for you. I hope the side effects of the HT have been manageable?


Adrian, sorry to hear that it’s in your family too. as you say at least you’re aware of it and can encourage your boys to get checked. Early diagnosis is our friend. I got my older brother to have a blood test which thankfully was clear.


I agree with your point that there’s always someone worse off, but none of us should be hard on ourselves if we’re feeling rubbish about our own cancer. I’ve felt like a fraud a lot and now realise that that doesn’t help me or anyone else. As the counsellor would say, be kind to yourself. Having said that, I think there is also a place for a bit of old fashioned stiff upper lip. If you can find the balance between the two, happy(ish) days.


Sorry to hear about your other health problems. Dealing with two major issues at once must be difficult. Hats off again to wives and partners for propping us up!


And please don’t apologise for a long post. I think it’s really helpful to write things down and for everyone else to get a more rounded picture of what else is going on in your life and your head. That way they can offer more nuanced advice and support.


Cheers


Nick

User
Posted 02 Dec 2023 at 18:09

Nick , out of interest, do you know which tracers you had. My first one was the 18f 1007, that picked up one tumor, the second one a few months was the Gallium 68, that detected the second very small tumor and a residue in the first tumor.


Not qualified to say if one is better than the other, but thought I had seen that they had different detection capabilities.


Thanks Chris 

User
Posted 02 Dec 2023 at 18:23

Originally Posted by: Online Community Member


 


Kev, glad to hear things are going well for you. I hope the side effects of the HT have been manageable?



Hi Nick, 


I didn't have HT with my SRT, it wasn't offered and I didn't want it anyway. My oncologist wanted to go early without waiting to hit 0.2 and a scan. I think the positive margin was a clue to the source of the rising PSA. At the time I saw it as a gamble but it's paid off so far. 


We're all different though, so don't let me sway you from your pathway. You've got to do what's right for you, I think it's just as difficult a decision as the one we all take at diagnosis regarding treatment.


Good luck. 


Kev.


 

User
Posted 02 Dec 2023 at 18:36

Chris, I’m afraid I don’t know which tracer. If I remember I will drop the CNS team a line and see if they can tell me. I didn’t realise there were options.


Cheers


Nick

User
Posted 02 Dec 2023 at 19:05
Apparently the gallium is better for detecting recurrence in the prostate bed as it doesn't suffer from the background noise from the bladder that can mask Proste bed recurrence from the other one... That's what the Royal Marsden told me after I had the other one ☹️ but as neither are much good below 0.2 I was pushing the envelope having it at 0.07 ISH
User
Posted 02 Dec 2023 at 19:07
Actually that may be the other way around! Anyway whichever one is best for detecting prostate bed recurrence I had the other!
User
Posted 02 Dec 2023 at 19:32

Kev, your position sounds very similar to mine. I could decline the HT but when I asked if that was a possibility, the onco gave me a very funny look and said ‘ well, you could….’


So I’ve just gone with what she suggested and am sure it’s right for me. I think!


Nick

User
Posted 02 Dec 2023 at 19:42

Bad luck Fran, that’s unfortunate. My first PSMA PET was at 0.17, also pushing it. But I thought at 0.53 it may have cropped up. Hey ho, more waiting.


N

 
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