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User
Posted 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.
We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.
David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.
Thanks again
Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

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 16 Nov 2016 at 22:07
It's sometime since I've posted. I have been reading updates regularly. David has completed his RT, & HD Brachythearpy. We have spent the summer gardening, coming to terms with our life changing experiences and we are hopefully beginning to make some sense of it all.
We are both feeling less ' punchdrunk'we went away for a wonderful holiday, this also contributed to feeling ' normal' again, what ever that is.
David is getting stronger & fitter, although he still gets days of feeling tired. He has had an ongoing pain in his lower back and haunches, he's seen our GP and the radiologist consultant ..... none seem to have any suggestions :-( we just hope it's not the dreaded PCa. His bladder is a lot better, and he feels his flow has improved.

It really resonated with us talking about the anticipatory grieving process...lets be honest, we think and wonder about the future.... and what ever it holds. David will always be G9 and he's planning on living a long time yet..... we have soooo much to do. We hope he will....

We have had some conflicting advice from the consultants a) the onco, b) radiologist .... onco wants him to have a scan in January the radiologist is saying 6 monthly PSA tests .... any advice would be welcome. Not having too many cancer appointments has been good, but we are aware of the G9 needs constant monitoring.

On the ED front he tried with the pump and hated it, tried the viagra and it was ok.... but left him with a feeling of being light headed and hungover ....he's keen to keep going and said he had a few sexual feelings again which delighted him. The pump gave him days of discomfort... he felt awful.

It is now over a year since his diagnosis, a journey of tears, laughter fear and now we hope to move in to calmer waters, where we can emotionally heal, find space to plan and think.

To any newbies starting on their journey, talk to each other, be patient with each other... and value times of laughter.... use this site and value the advice here, it has been invaluable to us.
Thanks again
Leila x

Edited by member 17 Nov 2016 at 10:24  | Reason: Not specified

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.
A Happy
New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.
User
Posted 16 Jul 2019 at 21:57

Thanks for the update Leila


From October I will be in the same situation as David was, albeit with PSA undetectable and only on HT for 18 months. It’s great to hear such a success story, just when I’m about to embark on the same second part of my journey as you have experienced

Edited by member 16 Jul 2019 at 21:58  | Reason: Spelling

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 17 Nov 2016 at 00:30

Hi Leila,


Re : '...He has had an ongoing pain in his lower back and haunches...'.


After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.


On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.


:)


Dave

User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x


If life gives you lemons , then make lemonade
User
Posted 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx
User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 16 Jul 2019 at 21:20
Brilliant update - enjoy the sunny evenings :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jul 2019 at 22:11

It’s always wonderful to read such a lovely story, enjoy every minute and every nice evening with a glass of something good.


lots of love Devonmaid xxx

User
Posted 02 Oct 2019 at 17:48

David has his latest PSA results today. 0.2 he has been off the HT now for 15 months, strength has returned and his libido is rising.He has bought a new ladder to cut the hedges to celebrate.


 

User
Posted 02 Oct 2019 at 17:56

Fantastic news Leila. So pleased that you are getting your lives back. I have one last injection in a couple of weeks and I can’t wait to get the HT out of my system . It’s so good to hear a happy story.


Long may the low PSA last.


Phil 

User
Posted 02 Oct 2019 at 18:28

It’s great to hear good news on here. I’m in the G9 club and at PSA level less the 0.1 I’m starting to get optimistic. It’s now 24 days till my final HT jab expires 


I have kept myself active all the time since I was diagnosed in March 2018 and in fact I have cycled at least five times a week with a total distance of about 120 miles over the seven day period. Yes I suffer with prolonged periods of exhaustion so I take care I allow myself to recover but I can now manage a 60 mile ride once a week in about four hours.


 As for the libido I surely hope it will return over the next six months and at my 68th birthday in April I’m already considering how I’m going to celebrate , lol

User
Posted 02 Oct 2019 at 19:17
Oh Lord, Leila - was there nothing more exciting to do than the hedges????

Great update x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member


If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 



John would be horrified if he knew what I have written on here over the years 😬

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x

If life gives you lemons , then make lemonade
User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both
Lyn have you got a blog somewhere..I love your humour
User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.
User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 09 Feb 2020 at 17:54
How lovely Leila xx Rock on both of you

If life gives you lemons , then make lemonade
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 16:13

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 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 10 May 2020 at 18:52
Best wishes and great news Leila x

If life gives you lemons , then make lemonade
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
Show Most Thanked Posts
User
Posted 17 Nov 2016 at 00:30

Hi Leila,


Re : '...He has had an ongoing pain in his lower back and haunches...'.


After I had brachytherapy the first few months were just fine, then I developed a slight pain in the nether regions, noticeable when I sat down on a hard chair.  I was also getting slight fevers, it felt like I was going down with a cold.  I mentioned this to my consultant and he immediately prescribed a course of antibiotics to clear up an infection in the radiated prostate.  He didn't need any blood or urine tests to confirm his diagnosis, it seemed like he was half expecting it as a regular side effect of brachytherapy.


On the Viagra front, I find that if you save a few up, and then take them on consecutive days, the effect gets stronger each day.


:)


Dave

User
Posted 17 Nov 2016 at 09:44

Try levitra or Cialis instead of Viagra perhaps?

I can't imagine how a pump can cause discomfort - wrong technique maybe.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Feb 2017 at 17:40

Hi


I had my brachytherapy on the 29th of April 2013, I had 57 seeds implanted and had a gleason score of 6. My tumor was the size of a malteser, about 10mm in diameter.


Prior to my operation I had problems with my libido and it was found that my testosterone was very low, Serum testosterone 7.1 I think my tumor was absorbing what my body was making, I had a PSA of 8.4. 


After my operation I asked my doctor if I could go on a Testosterone supplement (testogel) as this could help my libido. My own Doctor said I could under supervision. Now I go yearly to see a consultant, after I started the daily treatment at the Heath Hospital Cardiff, to monitor the testosterone.I currently have a normal level of testosterone in my body.


I have been using Testogel  since September 2013, today I was at my local hospital Velindre in Cardiff and my PSA was 0.1 so luckily it has not affected my cancer cells as some might think it would.


I now wake with an erection most days, as I did some many years previous, I still need some help maintaining this and Cialis is the real helper in keeping it going.


The side effects of low dose brachytherapy for me now; are dry ejaculations, loose stools and a need to go very soon after eating, sometimes followed by trapped wind. These symptoms are mostly normal according to my nurse practitioner, who sees many prostate patients.


I can recommend those that need it to use Cialis, I am not sure if you can get the testosterone treatment that I am on?


2ddesign 

User
Posted 02 Jan 2018 at 15:47
Just had David’s PSA it’s still <0.1 and he has one more injection to go, to complete the treatment. He’s happy, we are happy and now planning some holidays. Looking at health insurance and thinking warm sunny places.
A Happy
New Year, and my thanks for the information, sharing of support and experience it has carried me over the bumps on more than a few occasions.
User
Posted 02 Jan 2018 at 21:26

Totally gunning for you. Get travelling , have some fun ,,and enjoy every single day. Good luck x


If life gives you lemons , then make lemonade
User
Posted 02 Jan 2018 at 21:40

I'm so glad for you, getting such good news at the start of a new year.

Enjoy yourselves, make the most of every minute

We can't control the winds - but we can adjust our sails
User
Posted 02 Jan 2018 at 22:21
Hi leila great news for you both what a good start to the new year, reading your news also filled me with a bit of positivity as my OH has very similar dx to yours, hes just had HD brachy 29th december then onto 5 weeks external beam radiotherapy starts 15th jan, hes also to remain on zoladex for 2years, its good to be able to see that this awful journey does have some good outcomes..good luck sending love and long may it continue..jo.xx
User
Posted 03 Jan 2018 at 15:57

Thanks, for the lovely responses. j.t. It is hard dealing with this horrible disease. It has taken us a long to settle,down grappling with the enormity of the situation. Having said that, we also get times of fun, joy and lots of laughter. David found the HD Brachy quite easy going, but found the EBRT hard going, his sleep patterns were poor, and he felt extremely fatigued, though he did make himself walk an hour every day. He had to stay away from home to have the treatment as we live very rurally, he found this hard going as he’s a real home bird. It has taken him a while to regain his strength. He still gets days of fatigue, but they are less. The Prostrap has caused fatigue and all the other expected symptoms. Having said all that we have painted the outside of our house, grown all our own veg, and managed to do some changes to our garden. We are up beat most of the time,some days it’s hard to be positive. David is 67, fairly fit and keen to squeeze every bit of life he can. We are both anxious about how he will be when the Prostrap finishes, we hope his PSA stays low, and we can get on with the stuff of life. In the meantime back to exploring holiday options.

User
Posted 08 Jan 2018 at 13:45

Any advice in travel insurance please, we a planning a trip to europe. Just to recap David is G9 T3b he's on hormone treantent until March 2018, he has hypertension and also takes tamsulosin. He currently feeling well and his PSA is <0.1 


I have asked this before, but things change so Im just checking for advice. We have the EHIC.


 


Thanks Leila. 

User
Posted 08 Jan 2018 at 14:40

Hi Leila


i used insurancewith last year for holidays in Europe found them really good, i am terminal and i think for myself and the rest of the family with everything covered was £140


i have just had a promo code sent through from them for 20% off it is "sun20"


Hope that helps


Si


PS just noticed on the email


* Please note, our online prices automatically include a 15% discount. The 'SUN20' code gives you an additional 5% off, making a total saving of 20% against our call centre prices


But every little helps

Don't deny the diagnosis; try to defy the verdict
User
Posted 31 Jul 2018 at 10:19
David has completed 3 yrs go HT, last injection was in March 2018. He is getting constant aches in his legs and feet, he finds it quite debilitating on some days. He continues to be reasonably active, though sometimes he finds it hard. Has anyone else found this after completing the Prostrap injections. He is also scared that being off the HT will allow the cancer to spread, he’s T3B G 9 so I can appreciate his fears. Any advice would be welcome. Thanks Leila
User
Posted 31 Jul 2018 at 11:37
taking hormone holidays when the psa is under control is generally considered to be beneficial in terms of quality of life and according to studies I have read doesn't impact life expectancy.

PSA needs to be regularly monitored of course and make sure any unexplained pain is investigated.

User
Posted 31 Jul 2018 at 11:57

Thanks for your reply, he has completed the course, and  hopes he does not have to use it again.He is concerned about the constant aches he has in his lower limbs, and if this is a side effect of coming off the  Prostrap or something else. 


 


Thanks Leila. 


 


 

User
Posted 31 Jul 2018 at 15:45

Stop worrying about it and get it checked out...

User
Posted 31 Jul 2018 at 18:05
Thanks, it’s in hand appointment made by me. You are right it needs checking out.
User
Posted 31 Jul 2018 at 18:34
Hi Leila

Tony was diagnosed in 2006 gleason 9 T3B , he had RT and zoladex. he has been on and off hormones from about 2 years after the rt, think the first time was for about 3 years then on it again for about a year and so on. he went back on it again at the start of last year I think it was and was told he would have to stay on it until it stopped working, his psa has just started to go up and they have now added casodex. I remember the start of hi journey so well and thinking he wouldn't be around for long and 12 years on he is still here and in himself quite well apart from he has started to get really tired lately. His oncologist told him when he first came off hormones that the longer he could stay off them the longer they would work and this has proved to be the case.

hope all is well with David


regards barbara
User
Posted 05 Jan 2019 at 18:31
David has been off the HT for just over 6 months now, after three years of it.He has developed pains and discomfort under his right rib cage, sometimes a sharp pain sometimes a dull ache. His PSA has been consistently <0.1 for over 2 yrs and since being off the HT.
He is also beginning to worry that being off the HT could open him to a reacurrance of the PCa, and every ache or pain is a worry.
As he was diagnosed locally advanced G9 Tb3 N0 M0 and told he is on a “curative path “ he has been really positive until recently. He has read that some types of PCa don’t give off PSA and his was 8.8 (quite low) at diagnosis, this has made him feel very uneasy.
Has seen a GP but tbh he’s not reassured.

I read regularly but I’ve not posted much, as we’ve been trying to forget about cancer for a while.
We are waiting to see the urologist for hopefully some reassurance.

Any advice would be appreciated.

All the best for 2019.

Thanks Leila
User
Posted 05 Jan 2019 at 19:13
Hi Leila. Nice to hear from you again. Basically your news is good although not being perceived as that which is a shame. I think all of us at a certain age are aching all over , and it only takes a certain extra activity to set off a raft of pains. My legs are simply awful and I couldn’t run across a road literally at 51. I’ve been told it’s nothing to do with cancer , it could be Cialis , but I’m worried it’s lymphodoarma tbh.
I would never compare or “ black cat “ someone , and I know our paths have been different , but even though I had surgery and was found to be G9T4N1M0 , I have done nothing bar 11 months of Bicalutamide. I’ve had zero treatment for two years and psa up to 82. As far as I know nothing has changed inside me and I feel well and healthy apart from my legs. I insisted on keeping a sex life if at at all possible and we have made the most of that. I know I’m running the gauntlet and am going to die very young, but in the vast majority of cases it is a very slow growing disease and nothing needs to be done in panic — as said the article that for localised low Gleason PCa doing nothing was as effective as having all the treatments over a 10 year scale. I’m solidly concerned with living with the best QOL rather than dying. I know the disease is unpredictable and I’m not a doctor , but it seems your OH could be looking forward to a great rest and new beginning and return of normality / even libido , rather than worrying about something that can be dealt with again later on. I know it’s not easy as I’ve been stressed all Xmas as I have my review next Weds. My Onco hates me as he’s used to everyone going in saying “save me “ , and I go in saying “ leave me alone “. I guess we will see just what happens. Try and enjoy some recovery and better quality of life. Happy New Year both x

If life gives you lemons , then make lemonade
User
Posted 05 Jan 2019 at 20:05
Hey Leila, you are correct that there are rare prostate cancers that don’t give off any PSA (or hardly any) but it would have been identified at the template biopsy stage. I think they would have mentioned it to you at the time so the fact that you are not aware suggests that he had a nice run-of-the-mill adenocarcinoma. But you could check with the GP or look back at the original diagnosis letters if you have kept them.

My instinct is that the pains are most likely to be unrelated.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2019 at 21:00

Hi Leila.   The worry never goes completely away does it? As others have said David's pain is more likely  to be non cancer related.


I do hope the consultant can give you positive news and that you can continue living "The Good Life"  on your smallholding. Sounds idyllic as I am a townie but feel like a country girl at heart. Just try to relax in the meantime. Easy to say I know.


 


Best Wishes


Ann

User
Posted 05 Jan 2019 at 22:24
Are different pains to what he had before? Sounds like you may be working him to hard on the smallholding!!
User
Posted 05 Jan 2019 at 23:49

Thanks for all the lovely replies, I’ve just read ‘em all out to him, and he’s smiling and touched. David is, a bit like a quality street sweet, hard on the outside and very soft on the inside, and sometimes very scared.
His diagnosis was andenocarcinoma, common as muck eh! He’s probably a bit on the autistic spectrum, if it ain’t clear, factual and no possible variations he panics, that and being a bloody musician ( drama queen)
He does panic, mostly I can thankfully keep his sane head on... sometimes I have to admit I fall into his world and join in for a day or so, then I have to make sure we get back on track.
The small holding continues, we still have parsnips, leeks and cabbages to eat, lots of them too. I have enough carrot soup to keep us going till spring.


Chris, I am not bi polar, I’ve seen it, and seen what it can do, I admire you, the mixture of PCa & bipolar, I cannot imagine how you and your lovely family manage, take me hat off to you, I do.


Thanks Lyn, I wanted him to hear your post, it helps, he feels better when he hears from people and families who are in similar situations.


Ann, yes keeping a sane balanced head can be hard, every pain is cancer.... isn’t it? Most days it’s good, just sometimes the cancer world takes over.


franclj1 Ha ha, we are planning to have a tractor load of the local farmers best well rotted manure delivered soon, hard work, we haven’t begun yet. The raised beds are clear, garlic planted,hedges to trim trees to prune, muck to spread.


We also fancy a holiday somewhere warm afore spring work sets in, so he’d best be alright. 😉


 


 

Edited by member 06 Jan 2019 at 03:06  | Reason: Not specified

User
Posted 14 May 2019 at 15:24

Have just got David’s latest PSA result, it’s 0.2 He has been off the hormone treatments for a year, and this is the first time it has gone up it has been <0.1 after treatment until now. He was diagnosed Gleason 9Tb3 so he’s understandably nervous with any rise in the PSA with such an aggressive cancer.


We are aware that as he still has a prostate the PSA will rise and he is hopefully making healthy cells, and has rekindled sexual feelings. Having this 0.2 has wobbled us a bit, I hate this three monthly PSA time.


Some reassurance, factual advice, would be appreciated 


Thanks


Leila 


 


 

User
Posted 14 May 2019 at 20:52
It looks like a great result to me - break out the wine and chocolate. As long as his PSA stays below 2.0, happy days 🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 May 2019 at 21:38

Thanks lyn,


We managed to break out the wine, and supper by the  beach, talk it through, sometimes


a bit of realistic reflection is all that’s needed.


Leila 

Edited by member 14 May 2019 at 23:49  | Reason: Not specified

User
Posted 16 Jul 2019 at 18:08

David has been off the HT since March 2018, his PSA was 0.1 until six months ago, and the last two have been 0.2 the oncologist seems happy, so we are happy.Long may it continue.


David is now 69, today he's been up on the barn roof cleaning the solar panels. Not a job for the faint hearted. He says he feels his strength is returning since coming off three  years of HT. I  can see a well earned beer being supped in the garden later.


We are still growing all our own organic veg, enjoying the summers and feeling thankful.


I don't post much these days, I read regularly, so much more experienced people posting very useful information.


Thank you for all the help support, sadness and smiles I've had reading posts on here.


I've just noticed a reference to wine in my last post, we don't imbibe every night ;-) but sunny evenings in the garden are such a treat.


 


Leila.


 


 


 


 

Edited by member 16 Jul 2019 at 22:18  | Reason: Not specified

User
Posted 16 Jul 2019 at 21:20
Brilliant update - enjoy the sunny evenings :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jul 2019 at 21:57

Thanks for the update Leila


From October I will be in the same situation as David was, albeit with PSA undetectable and only on HT for 18 months. It’s great to hear such a success story, just when I’m about to embark on the same second part of my journey as you have experienced

Edited by member 16 Jul 2019 at 21:58  | Reason: Spelling

User
Posted 16 Jul 2019 at 22:11

It’s always wonderful to read such a lovely story, enjoy every minute and every nice evening with a glass of something good.


lots of love Devonmaid xxx

User
Posted 17 Jul 2019 at 15:16

Hi Leila, agree with the others that it’s lovely to hear your updates. Stay positive as it all sounds like it’s going to plan.


My last injection of Prostap is in October and so I will begin to watch the PSA with baited breath ....


All the best and enjoy the wine ...


Phil 

User
Posted 22 Sep 2019 at 17:04
David has ongoing discomfort and sometimes pain in his right side. He has had this for a long time now about 3yrs, he has mentioned to both the GP's at our practice and the urologist when he's had a check up.He has been advised it is 'nothing to do with your cancer'
He's had x-rays & scans as well.
What he has yet to find out is what could it be to do with.
David is 69 until his PCa diagnosis healthy, and since treatment fairly heathy, with the well seasoned side offects of 3 yrs HT 5 weeks RT & HDR Brachytherapy.
He had his last Prostrap injection March 2018
He is on blood pressure meds, nothing else.
He plans to make an appointments to see a GP ( easier getting an appointment with the Pope these days) and go over the old symptoms yet again.

1. Could all these symptoms be side effects from his treatment
2. Just getting older
3. Gastro problems, he doesnt get indigestion, or after eating symptoms, has a varied diet etc.
4. He does drink wine & beer but is not a greedy drinker
5.His BM's are regular, no problems there.

Any suggestions as he is getting both exasperated and worried by the " nothing to do with your cancer" answer and little suggestions as what it could be.
A few idas about what he could ask, might help us.

I hope someone can advise as he wants an answer,rather than a blanket statement received so far.

We are prepared to pay for a consultaion if required, but would rather have the NHS back follow up support if possible.

Thanks

Leila
User
Posted 22 Sep 2019 at 17:34

I had my final Triptorelin injection mid July and am in similar nervous situation.  At my review in July my PSA was less than 0.1 


 So my final injection of 18 months HT expires mid October and my hormone therapy has been working on my 0.1 PSA for three months.


 But of course I can’t help being extremely nervous as my testosterone begins to return what will happen to any cancer cells that are left in my system.


My next  planned review will be February 2020 where I will have a PSA test and “ Face the music “

Edited by member 22 Sep 2019 at 17:36  | Reason: Not specified

User
Posted 02 Oct 2019 at 17:48

David has his latest PSA results today. 0.2 he has been off the HT now for 15 months, strength has returned and his libido is rising.He has bought a new ladder to cut the hedges to celebrate.


 

User
Posted 02 Oct 2019 at 17:56

Fantastic news Leila. So pleased that you are getting your lives back. I have one last injection in a couple of weeks and I can’t wait to get the HT out of my system . It’s so good to hear a happy story.


Long may the low PSA last.


Phil 

User
Posted 02 Oct 2019 at 18:28

It’s great to hear good news on here. I’m in the G9 club and at PSA level less the 0.1 I’m starting to get optimistic. It’s now 24 days till my final HT jab expires 


I have kept myself active all the time since I was diagnosed in March 2018 and in fact I have cycled at least five times a week with a total distance of about 120 miles over the seven day period. Yes I suffer with prolonged periods of exhaustion so I take care I allow myself to recover but I can now manage a 60 mile ride once a week in about four hours.


 As for the libido I surely hope it will return over the next six months and at my 68th birthday in April I’m already considering how I’m going to celebrate , lol

User
Posted 02 Oct 2019 at 19:17
Oh Lord, Leila - was there nothing more exciting to do than the hedges????

Great update x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Oct 2019 at 11:39

Well, we did find some more exciting than hedge cutting... but only just. 


David has been advised to have a testosterone serum test,  with his next PSA,his libido is recovering nicely for a man of 69. So, can anyone tell me a bit more about this test please, and why he’s been advised to have it. 


Thanks Leila 

User
Posted 03 Oct 2019 at 12:10

What's interesting is the PSA value when testosterone has recovered.


Testosterone often doesn't recover when hormone therapy stops, but can take up to a couple of years, and it's often not a linear return, but can be nothing for some time, followed by a sudden return. So you need to monitor testosterone as well as PSA when you come off HT, or you don't know if PSA hasn't risen because of no testosterone, or because there's really no extra prostate cell growth. Once testosterone has returned, the testosterone test can be dropped.


Also, if he's on metformin to reduce HT side effects and cancer recurrence (e.g. one of the STAMPEDE arms), he needs to stay on that until testosterone returns (or until a year after HT ceases).


It does sound like David's testosterone is returning from the reversal of HT side effects.

User
Posted 06 Jan 2020 at 18:00
Once again it is PSA time and this reading is 0.3 so it has gone up once again. Davids testosterone is 16.6. He has now been off any treatment for 18 months now, and all services are just about resumed. ED has improved greatly, not as before, but we have smiles on our faces, and enjoy ourselves.👫👨‍❤️‍👨🤗🤗

He’s always a bit wobbly afore the results and to see it go up once again, has unnerved him but I think it ok... comments appreciated.

Happy NY to you all.

Thanks for the supportive posts they are so welcomed.

Leila

User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 18:56

Thanks Lyn, a good day for us! I do hope you are keeping those thigh boots well polished. If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. Meanwhile keep those wonderful supportive, and funny posts coming please do.🤓😎

User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member


If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 



John would be horrified if he knew what I have written on here over the years 😬

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x

If life gives you lemons , then make lemonade
User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both
Lyn have you got a blog somewhere..I love your humour
User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.
User
Posted 06 Jan 2020 at 20:49
Thank you for the posts, they mean a lot, living with this €$§€dy disease is one helluva ride, and not one I’d recommend to any one. You lads and lasses are a wonderful support that has carried me and ‘im through a lots of tears and laughter. Long may it continue

Leila
User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 07 Jan 2020 at 10:29

I agree with Dave , It’s great to hear encouraging stories on here. I’m sure as treatments get better there will be more . I hope so.


I was G9T3 locally advanced with a PSA of 27 and had EBRT and Brachy plus HT. My last (ever) Prostap injection was October ‘19 after 2 years. This Friday I will be 12 weeks from then 😳😳. Wait till March for next PSA.


Leila I hope your journey back to some kind or normality continues as well as it has so far. Good luck. 

Phil

User
Posted 07 Jan 2020 at 11:37

Thanks for your responses, it’s good to hear from the exclusive  ‘G9’ club. David is a bit cheesed off with the rise, as he hoped it would settle at 0.2. As time goes on he will adjust to the new normal, and we will trundle along. Please keep posting as it’s good to share info.


Leila 


 

 
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