On going

On going

User

Posted 07 Jan 2020 at 11:50

Hi Leila. My consultants understudy tried to tell me my PSA wouldn’t rise after I finished HT . But of course it will for us with Prostates still inside ....I would presume to roughly where it would be normally ??? So I will not be worrying too much for a small rise from my current 0.07.

Phil

User

Posted 07 Jan 2020 at 12:38

I’m roughly in the same position as Phil and Dave, I am a G9 club member T2c.

PSA 38 on diagnosis, had 20 fractions EBRT August 2018 and last Triptorelin hormone therapy injection mid July 2019. At review early November 2019 my PSA was undetectable, or less than 0.1 as the NHS declares.

As I was on three monthly hormone therapy injections I therapy finished mid October 2019 which puts me about 10 weeks since the injection expired.

My next review is mid March this year when I will have a PSA and testosterone check. I had been living under the optimistic view that my test of throne would come back quicker mainly to stop the hot flushes, but reading comments on here I guess I should return to reality.

But just as when I was newly diagnosed when waiting was the worst part, I now return to that situation as I nervously await my review in March

User

Posted 07 Jan 2020 at 13:50

Hi Alan , yes I’m waiting on a March test too 😬... never ever want to go back on Prostap.

I’m sure we’ll be fine 👍.

Phil

User

Posted 07 Jan 2020 at 14:19

At my last review the oncologist told me they would not allow my PSA to go above 2.0

By the time I get my review in March and reading on here about how slow testosterone comes back, I am expecting a PSA reading of 0.5 or less at my review.

Also the next reviews from March onwards will be very nervous waiting periods. But as to what the oncologist said that if my PSA goes above 2.0, as I had stopped hormone therapy at the 18 month point I would be suitable to restart the therapy again for another 18 months. I will deal with that situation should it arise, but going back onto hormone therapy again is going to require some real heart searching, do I really want to go back through all that again as I approach 70 years old?

it may be bravado to say “no way” now would I go back on hormone therapy, but should my PSA rise to a high level I suppose self-preservation will kick in, plus I will have to do but my wife of 47 years tells me😁

User

Posted 07 Jan 2020 at 14:25

Hi Phil, David saw an understudy last year. It was not good, he was bumptious verging on rude,discounted the written questions, and rushed us out of the room. We travel a long way to appts as we live rurally. David gets quite anxious before each encounter. Well this one was not good, it took me days to calm him down. I did an online feedback. David then had to see another consultant for something else, Egyptian lad, he was brilliant! We complimented him on his manner, communication skills and approach and it was delightful. I then spoke to him on Arabic which surprised him and made the day for us all as David was signed off with out needing his services again.
Sometimes just to be spoken to politely, listened to and communicated with like a person rather than an illness makes a difference.
In past lives I’ve worked with medics, and have despaired at their sometimes limited ability to talk to us average punters, yet I’ve also worked with some caring sensitive people who have made a positive impact. Such is life and the human being I suppose.some medics could be better at working with us and. realising we are not daft or dim, but sometimes worried, scared and emotionally frozen. Rant over 🤔🤔

Leila

Edited by member 07 Jan 2020 at 14:36 | Reason: Not specified

User

Posted 07 Jan 2020 at 15:04

So true Leila. Was good that you saw another consultant who was understanding. Sometimes they see it so often that they don’t realise how worried we are despite what they tell us. We are not idiots.

Like Alan I’m pretty terrified of going back on HT especially being in the G9 club. But we can only lead our lives as normally as possible for as long as possible. So easy to say - not so easy to do....

At the moment I just want my brain back as I’ve been very lucky with the physical side effects.

Phil

User

Posted 07 Jan 2020 at 15:42

I didn’t mention earlier about the mental issues that I have been going through to do with my memory. My consultant asked me at my post treatment review, if there were any other issues I was experiencing apart from my physical needs and I said well apart from getting very forgetful and difficulty finding the right word in a sentence, which is probably me getting old. She then told me very directly that the male brain loses mental acuity without testosterone and the lack of memory and fuzziness is a direct consequence of the hormone therapy, if I wasn’t like it before the HT
That is another reason why I am so very reluctant to resume hormone therapy. I asked if there was a chance my brain could return to normal once I have testosterone back in my system and she said everyone is different and it depended upon my age and physical condition.

Edited by member 07 Jan 2020 at 15:46 | Reason: Typo

User

Posted 07 Jan 2020 at 16:19

Disturbingly I just read an article on clinical studies in the US investigating the effect of LHRH HT on cognitive ability. There are conflicting views on US clinical studies compared to here in the UK, but the results below would figure in any future decision I make on long term HT

A test group of 62,000 men on HT for prostate cancer found that for short term HT there was an increased risk of 19% of Alzheimer’s or other degenerating cognitive disorders. This rose to 28% for men on long term therapy.

User

Posted 07 Jan 2020 at 16:21

Hi Alan. I don’t think that I have lost memory or fuzziness. On the contrary for some reason the HT caused me to remember some painful times from my early childhood. Things that I’d long ago buried, or thought I had. After the HT kicked in I had to deal with all that as I’d never dealt with it as a child. 2 years on and still finding it difficult even with a counsellor. Have you seen the Truth Project TV ad ? It’s very very good, and very real.

Flip side I also remember loads of good stuff from my childhood I’d buried along with the bad stuff and it’s caused me to reunite with some old school chums. Always a silver lining 😊.

Phil

User

Posted 07 Jan 2020 at 17:15

I felt as if my head was stuffed with cotton wool during my first few months on HT. I just couldn't think straight at all. Fortunately it gradually wore off.

Best wishes,

Chris

User

Posted 07 Jan 2020 at 17:30

It’s funny how we get so differing effects from the hormone therapy. Good reading for newly diagnosed members on the Forum

User

Posted 09 Feb 2020 at 17:38

Just a few lines to encourage you young men in the G9 club. The ED situation has improved as we are able to have both intimacy and fun 🤭though we were reminiscing about years ago and giggling.... well what else do we do when the weather is too windy to play out. David was not able to get on with the NHS pump provided, so he bought an battery pump from eBay it was the princely sum of £15.00 and it’s much better, as long as he remembers to change the bloody batteries, it works a treat.

We have also been busy cutting back a big tree and chopping logs for fire wood. Though our muscles ached, and we were knackered it was good to see the wood stacked up. More important it’s just good to get on with life, do our stuff and forget about the cancer for a bit.

We had a brilliant week away In Northumbria too, walking and enjoying a new area.

Another project will be a concert where David will play and sing to raise awareness, about living with PCa

I’m not posting just to share our mundane lives, but to share how good life can be , most of the time, and how

we enjoy life.

That doesn’t mean we don’t have dark days especially near the dreaded PSA time. But it ain’t all bad, and good

times can be had. David’s last PSA was 0.3 and he’s been off treatment over 18 months. I hope this gives some encouragement and puts a smile on a few faces.

Leila

Edited by member 10 Feb 2020 at 15:14 | Reason: Not specified

User

Posted 09 Feb 2020 at 17:50

Leila

thanks for such an upbeat posting I am now four months post treatment and have four weeks before I get my key PSA and testosterone blood test. For the last two months I haven’t even thought about my prostate cancer but now I have to book my blood test ready for my next review it starts to pray on my mind again. But like you I am trying to enjoy myself to the full and I am out cycling every day as long as it’s not raining and even when it does I have a turbo trainer in my garage

User

Posted 09 Feb 2020 at 17:54

How lovely Leila xx Rock on both of you

User

Posted 09 Feb 2020 at 19:56

Thank you both. This forum has supported me in my dark times, made me laugh, and given me advice hope and on line friendship. Will forever appreciate the time and support I've received from you all.

Leila

User

Posted 09 Feb 2020 at 22:02

Great to hear from you Leila. You and David keep up the good work and having fun. I'm looking forward to the end of my HT.

Dave

User

Posted 10 Feb 2020 at 13:22

What a lovely posting.
Thank you for sharing.

Clare

User

Posted 10 Feb 2020 at 19:09

Thank you Leila for such a great post. It gives me confidence for my future.

I am 4 months now since my last Prostap injection and don’t feel any different yet. I’m hoping I’ll feel the HT wearing off soon.

Hoping the future is bright for you both.

Phil

User

Posted 18 Apr 2020 at 13:08

David is due to have his PSA in April, he is understandably a bit reticent in the current climate. He has also been advised he’s due to have a bone scan, again a bit of reluctance on his part. He is thinking of leaving the above for a couple of months and then review. Our underlying concern is his G9 Tb3 diagnosis. He has been off treatments for two years now, last PSA was 0.3

He has the usual aches and pains of a 70 yr old, still working in the garden, playing and singing every day. When I suggest he moans too much his response is “I’m 70 there is a lot to moan about” said with a huge grin.

Other wise he’s happy enough, we are so pleased we have a large garden to wander in during these interesting times.So, advice, do you think it’s ok to wait, or should he have the scan and tests, GP surgery seem ok with the wait.... but they are not the most informed up to date folk. I’ve written to his consultant but it takes a while to filter through the system.

Thanks

Leila

Edited by member 18 Apr 2020 at 13:13 | Reason: Not specified

User

Posted 04 May 2020 at 16:01

David is having a bone scan and PSA tomorrow, today we are both niggly,wobbly whatever term suits. Being G9 Tb3 he feel he’s always in the waiting room for the next stage. So he is now outside with his compost bins and trying to keep calm. His last PSA was 0.3 so that’s is good, but... his worry is he was only 8.5at diagnosis. Oh well, has to be done. Does the stress ever leave.

Its 4 1/2 years since diagnosis.

Thanks for letting me moan.🥺🥺

Leila

User

Posted 04 May 2020 at 16:13

Thanks for the update Leila. Best of luck for the PSA and bone scan results.

I am G9 and T3b with a relatively low PSA on diagnosis of 27 and I am feeling confident I have this licked now. I can’t think about what could happen because that will only hurt my today’s .....

I am gonna miss my next 3 monthly PSA due to Covid restrictions which was only at my behest anyway as the hospital were happy to leave it 6 months . So may try to fit it in or wait , not sure yet.
My biggest worry is getting my T back as it’s caused me a lot of mental issues. But it does seem to be easing as I was told on here and by my consultant.

So , hope all goes well tomorrow. 🤞

Phil

User

Posted 04 May 2020 at 17:04

I don't think the test anxiety ever really goes away - some would say it gets worse as time goes on!

Good luck tomorrow x

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

User

Posted 05 May 2020 at 08:34

Thanks for the support Phil & Lyn. The angst does seem to be consistent, just has to be managed. Phil, I assume your T is testosterone? David had a T test in January and it was 6 I think if different I’ll repost. His libido is returning, and he feels in his words like a bloke again. As for mental health, it’s been hard for him, he had some counselling, in the form of art therapy, but it wasn’t for him. He decided music was his way forward and he ploughed into his job as a muzo, rekindling his love of the violin from school days. As time goes on he did some charity gigs this helped a lot. The whole episode brought up painful emotional challenges, tears fears and pain. Thankfully as time goes on he seems to have got settled. David is someone who overthinks most things, and he’s a typical artist, never good enough, could do better. So I suppose taking his character into account he’s doing well, and he’ll be better when the results come in. I also know what a goal hanger is now.⛹🏼‍♀️🤾‍♂️🏀
Leila

Edited by member 05 May 2020 at 08:38 | Reason: Not specified

User

Posted 06 May 2020 at 14:20

Hi Leila , did you Google ‘Goalhanger’ ? That made my day 🤣🤣.
Davids T will possibly go up some more yet, I think 6 is low end of normal. The loss of Testosterone does cause the mental issues in some men unfortunately. It really hit me hard but I was also very lucky to get early counselling from the NHS. I don’t know what I’d have done without it. I was a wreck the first few times as stuff I’d buried from my childhood came flooding back. Counselling has helped me deal with what I never dealt with before. I have 1 more session left and I’m gonna miss them...
Has been so very interesting though learning now how your childhood affects how you act / behave / think as an adult.

So I’m 7 months from my last injection and according to my s/nurse have maybe another 7 or 8 months before I get back to whatever is normal...

Its funny you say that David overthinks things. I am just the same and I am an engineer. My counsellor says my brain wants an answer to everything but it’s not always possible...🤦‍♀️

Its great David has managed to dive into his music to help emotionally, and to do charity gigs is so good of him. Am in awe if anyone who can make music 🎶

Good luck and keep safe. Hope all goes well.

Phil

User

Posted 07 May 2020 at 11:44

Hi Phil,
Haha, no, I didn’t google it, I asked David, as he’s a mine of info on lots of things, including footy, he is a life long Charlton supporter, being from” sarf lundun”
David seems to manage his angst fairly well, with the occasional blip, the over thinking is a life long thing, though he again seems to manage it.
Having an inquisitive mind about everything can be both an advantage and disadvantage, he can’t post on here as it puts his brain into overdrive, so it’s my job to filter the info for him.

Thanks for the ongoing support and info, it really helps us deal with all this.

Take care.

Leila

User

Posted 07 May 2020 at 12:40

Ha ha, tell David I was never a goalhanger when I played 🤣. I started watching my local team , climbing over the fence so we didn’t have to pay. I moved to live with my Aunt when I was 13 and started going to see Southend Utd , Friday night up in the North Bank in the 60’s was great fun 😳, and occasionally up to the smoke to Spurs or West Ham wiv me mates, but never Charlton. Still go to Spurs sometimes now.

Good luck to Charlton , I think they’re gonna need it when they restart....

It’s not uncommon to suffer mentally when on HT and for a good while after. It doesn’t get mentioned as much as the other side effects as I suppose we men don’t like to admit to mental issues.

Hoping he can get back to some kind of normality soon.

Take care,

Phil

User

Posted 07 May 2020 at 13:31

Hi Phil,

David said he’s never been to Roots Hall, but Alison Moyet is a fan.... so I’m told. Yep, Charlton are going to need all the help they can get ☹️

He should get his PSA results today and the bone scan results in two weeks, so hopefully normal services can resume. On a positive note he’s sorted out the compost heap, mowed the grass and I’ve done the weeding, and watering. Stress has its place. We have a lotta garden to manage.

Charlton is a life long commitment, he started going at the age of 10 on his own. He wrote one of the team songs many moons ago, it’s not often bellowed out on the ground but sometimes.

“I’m I’m eaven SE7 I’m in “eaven” Charlton”

Take care

Leila

User

Posted 07 May 2020 at 14:03

Leila, love the song 🤣🤣 ..

Roots Hall is a dump but went back to watch Plymouth play there couple years ago and was in the North Bank again - brought back so many memories.

Sounds like you two keep busy , always good for the mind. I remember my Mum telling me once when I was little - ‘don’t lay in bed if you’re awake - it’s not good for you’. I think that translates to ‘keep your mind busy and it won’t linger on the bad stuff’ , or maybe there was something else she meant 🤦‍♀️

Fingers crossed for the PSA results and the bone scan.

Phil

User

Posted 07 May 2020 at 20:32

Well, PSA came back, a day late, we were expecting 0.3 or above but it was 0.1, well, we were both ecstatic, delighted what ever term fits. David had to call the health centre a second time just to make sure he heard right. Now he just has to await the bone scan results.
A little celebration in the garden I feel is in order, we had a lovely bottle of red wine between us, it was lovely.
Thanks for all the support.

Leila

User

Posted 09 May 2020 at 08:49

That’s great news Leila, fingers crossed for the bone scan.

Phil

User

Posted 09 May 2020 at 12:05

Fantastic news Leila, good luck with bone scan results.

Enjoy the weekend together.

Ange

User

Posted 09 May 2020 at 17:11

Brilliant - happy days x

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

User

Posted 09 May 2020 at 21:51

Thanks for the responses, the support is so valuable.

Leila

User

Posted 10 May 2020 at 18:52

Best wishes and great news Leila x

User

Posted 10 May 2020 at 23:37

That's lovely!

Best wishes for more of those...

User

Posted 27 May 2020 at 12:15

David’s bone scan results, he had a call yesterday from the hospital. It seems he has some levels of age related damage to his shoulders and elbows, hardly surprising for a musician of 70 I suppose. The specialist nurse seemed to think the scan was otherwise clear. So, he’s had a clear bone scan and a 0.1 PSA. A great result me thinks. The sun shines, the results are good, and the garden is looking lovely. Happy days, shame we can’t go to the beach, it’s so near yet so far.

I hope all you G9 (Tb3)club lads take hope from this result, and long may it continue.

David does take alternative stuff, whether this has helped, or the treatment has, who knows, but he’s smiling.

Thanks for the ongoing support.

Leila

User

Posted 27 May 2020 at 12:36

Wonderful news Leila. I didn't want to tempt fate, by thanking your earlier posts, until the bone scan results were back. I'm delighted for you both.

Dave (another member of the G9 club)

Dave

User

Posted 27 May 2020 at 13:29

That’s great news Leila. So pleased for you both.

User

Posted 27 May 2020 at 14:04

Great news Leila. I’m sure this will give hope to many.

Best wishes to you both and long may the good results keep coming for everyone.

Angex

User

Posted 27 May 2020 at 23:21

I am smiling for you Leila - a beach sounds like a wonderful dream right now

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

User

Posted 13 Aug 2020 at 15:34

Just got the PSA results, this time it’s 0.2. The last one was 0.1 and the bone scan is clear. David had his HDB in April 2016 followed by twenty five sessions of RT, then three yrs of HT.
Regaining strength, libido increased, so life continues to put a smile on our faces.
oh, we’ve bought a hot tub, seems to promote some interest in physical intimacy department, all those bubbles maybe.
I hope this gives some positives vibes to all you lads in the G9 club.

Leila

User

Posted 13 Aug 2020 at 16:07

I wondered why she’s always got her eyes closed and biting her lip in the tub ....
And yes it helps me too lol
Good luck xx

User

Posted 13 Aug 2020 at 17:17

Great news Leila. 0.2 is excellent result considering Davids T is obviously climbing back up 😉.

Theres been a lot of sad news recently so it is good to hear something encouraging.

I had my last PSA in June , last injection Oct ‘19 and it was 0.97 which I was a bit concerned at but the hospital (and Lyn 👍) didn’t seem worried and haven’t called me in. My next appointment will be telephone as so far they are happy.
Next PSA in September so fingers crossed it’s not above the dreaded 2.0.

Enjoy the weather, and your hot tub ....

Phil

User

Posted 14 Aug 2020 at 00:12

Thanks Leila, we like hearing good news. The wife and I were in our hot tub last night, so relaxing after the heat of the day.

Dave

User

Posted 17 Nov 2020 at 20:34

PSA test tomorrow at 11.30am, the angst doesn’t seem to go away does it. David’s like a cat on hot bricks today, quiet but clearly wobbly. This group give us so much support, thanks for being there.He’s better in the summer when he can gets lost in the garden.Today he’s played guitar got under my feet and watched tele.Not like him at all.

I’ll post when he gets the results.

Leila

Edited by member 17 Nov 2020 at 23:43 | Reason: Not specified

User

Posted 17 Nov 2020 at 21:21

Good luck Leila. I’m sure you won’t need it x

User

Posted 17 Nov 2020 at 23:22

Thanks,Chris, sometimes the pressure seems to boil over for both of us, I’m sure you’re right....

A glass of wine for me and a beer for David has helped.

Leila

User

Posted 17 Nov 2020 at 23:28

Good luck Leila x

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

User

Posted 20 Nov 2020 at 15:35

David’s PSA result 0.1 he’s current.y dancing around the house and I’ve been hugged till I squealed. Another three months of stress free living for him, and me 😊

Thanks once again for all the support.

Leila

User

Posted 20 Nov 2020 at 15:47

Great news Leila. Long may it continue 👍

Phil

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