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Rising to the occasion

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User
Posted 17 Aug 2015 at 23:29

 Well guys, not been online for some time, but good to see some familiar faces. Just an update really, because it serves well as a diary of events as we go on this journey together. Having had the prostate out with PSA at 22.5 it was suddenly .24! Unfortunately not the .01 but hey-ho... oh, the memories of that catheter! ... what next, radiation treatment,... again moving in the right direction .14. Now after 5 months the PSA has gone up to .19 oops! also I'm told I need another blood test next month for Kidneys? Apparently my score? has gone from 71 to 59 (should be 60+) We just have to keep positive and rise above it all,.... Just had a brain storm on the Kidney situation,.... less wine, more water!!!!  .. Above all else guys, keep your sense of humour!      Not sure where to post this as this site is as confusing as ever,... take care. Sid x .. P.S. Add tags?... haven't done that since Junior school.

What matters is not the years in your life, but the life in your years!
User
Posted 15 Mar 2016 at 00:28

Well, It's that time already,... can't believe it's been a year since I have seen my onco, I have had three blood tests going from 0.14 to 0.19 then 0.25 just had the latest blood test, waiting for the results, I have learnt not to worry and just accept what's coming, as far as I'm concerned I had the RP then Radiation that's all I could do, now it's just wait to see what the onco makes of it all, it seems he is not too worried in the fact he did not want to see me for a year! Anyway nice to come and share, but I still find this site a little awkward to negotiate and talk to men in a similar position. Take care all. Sid

What matters is not the years in your life, but the life in your years!
User
Posted 15 Mar 2016 at 07:19

Good luck Sid
You are in a very similar situation to me now except I turned down the RT as it was extremely unlikely to work. I suspect you will start permanent HT of one sort or another now , maybe with an interval. I was told I could wait till PSA reached 5 before a worthwhile scan was applicable. I'm going to stay on Bical until 5 is reached and then ask for a scan set. As Lyn said if only a few tumors are found they can be blasted with RT, although easier in my case as I've not had any already.
Best wishes. Please feel free to talk. There's nothing you could say that would upset anyone.
Chris

User
Posted 02 May 2016 at 00:14

So basically, they are saying RP and RT did not produce the hoped-for cure so you are incurable, there is nothing else that can be done so you might as well delay HT until it gets quite serious and then hope that the HT holds it back for a while.

Personally, I think that is quite an old-fashioned approach now. I think 'a bit let down' is the understatement of the year - do you feel up to asking for a referral to another oncologist for a second opinion? There are undoubtedly some big decisions you would have to make, particularly about quality of life v longevity but there are plenty of men on here who have begun the HT much earlier than is being proposed in your case and have been able to keep their PSA stable enough to go onto intermittent HT - check Topgun, Ray, George, among others. You could also explore with a second opinion onco the possibility of HIFU (if they know where in the prostate bed the cancer still sits) and/or a choline PET scan to see what is actually happening. It may be that your PSA is still a tad too low for the PET scan but these are pretty persistent cells and may be clustered together enough to show up.

When you had the RT, how many sessions did you have and can you recall how many Gy?

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

User
Posted 09 May 2016 at 23:22
Hi Sid ,

Lovely to hear from you although not quite with the news that you would have wanted to report. I am sorry to hear about your wife and I hope things improve soon. Life can be tough at times ehh.

Keep going forward.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 May 2016 at 00:06

Sorry to hear about your wife Sid - is she back home now?

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

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User
Posted 18 Aug 2015 at 11:06
Hi SS

we haven't heard from you in a while, but it looks like you are still pretty much in control of the aircraft even if you do have to make some flight adjustments as you go along.

The main thing is you are still posting and maintaining your own sense of humour. As to where to put things on the new site ... we all pretty much do our own thing (no change there then!)

Best wishes

xx

Mo

User
Posted 18 Aug 2015 at 18:44

Hello Sid,
Love the sense of humour and purpose. Good thought about the water. Perhaps you should water the wine to start yourself off with and lead into it gradually!!!

As for where to post, I never look at a particular section. I read "recent conversations" as and when they arrive. I certainly couldn't tell you where they are found.

We can't control the winds - but we can adjust our sails
User
Posted 18 Aug 2015 at 19:52

Ello Sid,

Good to hear from you again...

You gave me good support and encouragement when I was just embarking on my journey, so I remember you well!.. 

Sorry your PSA results were not quite as you would have hoped for after your surgery......maybe a little early yet to know if RT has failed? I'm sure you are in good hands and a plan will be put in place if needed.....
I dunno nothing about wine.......I'm a beer and cider man meself http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

You are so right about a sense of humour....it's been a big player in helping me cope with my initial diagnosis together the side effects of surgery etc...

Hope you can get the ol' kidneys sorted soon and not have to drink too much horrible water http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes
Luther

User
Posted 18 Aug 2015 at 23:01

Good luck with your progress and keep that sense of humour going!

Paul

Stay Calm And Carry On.
User
Posted 18 Aug 2015 at 23:02

Mo, Johnsan & Luther,..Thank you all for taking the time to reply,.. Mo, you have always been an encourager, John, I remember emailing you early in my diagnosis and Luther, you were preparing for "Going in" a little while after me. It's good to hear from you all. I will keep in touch and update my "progress" as and when. Mo, you take care, John keep positive, Luther, enjoy life!  ... Sid x

What matters is not the years in your life, but the life in your years!
User
Posted 18 Aug 2015 at 23:05

Ahhhhh,,, fivefooteight,..... keep swinging,.. looks like your coming down on the inside,.... watch that!!!!... Sid x

What matters is not the years in your life, but the life in your years!
User
Posted 29 Aug 2015 at 00:08

Just wondering if this is normal procedure?... had Radiotherapy for a month back in late December '14, in March '15 psa reading was down from .24 to .14 latest psa August .19 so a slight rise. Rang the onco sec. and she said everything fine onco will see you next March? Is this normal procedure? I said my testosterone is 26.6 which is above normal and cancer likes testosterone yes? The reply was, talk to your Doctor.

Seems as if everything is too much trouble, well, that's the impression I got.

Any thoughts would be appreciated. Thanks. Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 29 Aug 2015 at 10:30
Sid

Isn't it strange how Hospital Consultants have secretaries who can dispense information that is sometimes less than reassuring. Other times we turn to them as the "key" person who can magically get their Consultants to call us or find an appointment nobody else could.?

In this instance when you are asking what seems to me like a very serious medical question, her answer has not really helped.

I hope someone who knows far more than I do about these things will post and give you the benefit of their wisdom. Maybe you should call your GP and explain your concerns. It seems to me that a rising PSA albeit only slightly, coupled with increasing levels of testosterone may need more active monitoring at least.

All the best

xx

Mo

User
Posted 15 Mar 2016 at 00:28

Well, It's that time already,... can't believe it's been a year since I have seen my onco, I have had three blood tests going from 0.14 to 0.19 then 0.25 just had the latest blood test, waiting for the results, I have learnt not to worry and just accept what's coming, as far as I'm concerned I had the RP then Radiation that's all I could do, now it's just wait to see what the onco makes of it all, it seems he is not too worried in the fact he did not want to see me for a year! Anyway nice to come and share, but I still find this site a little awkward to negotiate and talk to men in a similar position. Take care all. Sid

What matters is not the years in your life, but the life in your years!
User
Posted 15 Mar 2016 at 01:08

Hi Sid,

Just wanted to wish you the Best of Luck for your results.

Take care.

Steve

User
Posted 15 Mar 2016 at 01:54

Hi Sid,
sorry to see that the PSA isn't behaving very well. I suppose the important conversation to have when you see the onco is at what point he would want you on permanent HT - and then what you think about that. Medical people would say that chemical recurrence is when you get to 0.2 but while some hospitals will wait until it gets to 10 before resorting to treatment, others do it earlier. You could also ask about new scans (just in case they can see where any small cluster of prostate cancer might be and then target them) but your PSA may still be too low for that.

Good luck at the appointment.

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

User
Posted 15 Mar 2016 at 01:55

PS Sid, did you have any hormone treatment alongside your salvage radiotherapy?

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

User
Posted 15 Mar 2016 at 07:19

Good luck Sid
You are in a very similar situation to me now except I turned down the RT as it was extremely unlikely to work. I suspect you will start permanent HT of one sort or another now , maybe with an interval. I was told I could wait till PSA reached 5 before a worthwhile scan was applicable. I'm going to stay on Bical until 5 is reached and then ask for a scan set. As Lyn said if only a few tumors are found they can be blasted with RT, although easier in my case as I've not had any already.
Best wishes. Please feel free to talk. There's nothing you could say that would upset anyone.
Chris

User
Posted 15 Mar 2016 at 11:40

'Ello Sid,

Good to hear from you again.

Sorry to read that things have not being going quite as you would have hoped for with your PSA results......

Hope you get plan of action in place soon if the PSA level still continues in the wrong direction....

Best wishes
Luther




User
Posted 30 Apr 2016 at 10:05

Thank you so much for you replies,...http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

I hope you are all ok at the moment, especially mentally, as I find having a positive mindset is much more beneficial than negativity.

At this moment in time I would greatly value your opinions,... having gone through having the prostate out and radiotherapy, I feel I have done all I can do. The result being the cancer was not contained as first thought, so it lives just outside in the prostate bed,..http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

My PSA has been monitored since, a few months ago it was .19 then 4 months later .25 then another 4 months .20, there was a red flag on my bloods (Kidney) so I had another test a week later, they did a PSA test as well and it came back as .27. Meanwhile I saw my oncologist wondering where we go from here? He said not to worry at all, go and enjoy your life I am signing you off back to your GP and I'll see you again when the PSA is between 15 and 20,..http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif.. I guess at that point I will have Hormone Treatment. (Lyn, I have not had any Hormone Treatment yet!) So I will continue to have a PSA test every 4 months, I know the test fluctuates up and down and the amount is miniscule really and also the Radiotherapy I had back in November 2014 is still in my system but somehow I feel a bit let down, as after my prostatectomy when the PSA went above .2 it was all hands to the pumps and on to Radiotherapy, now it's .27 it's have a good life see you in a few years,... Do you see where I'm coming from? Anyway I am positive and thankful because I know there are some of you going through it at the moment and I really feel for you, support is crucial and I hope you are getting it. Thanks for reading, sorry for such a long post, but as they say,.. "It's good to talk!"... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif.. Bless you all.  Sid x

What matters is not the years in your life, but the life in your years!
User
Posted 02 May 2016 at 00:14

So basically, they are saying RP and RT did not produce the hoped-for cure so you are incurable, there is nothing else that can be done so you might as well delay HT until it gets quite serious and then hope that the HT holds it back for a while.

Personally, I think that is quite an old-fashioned approach now. I think 'a bit let down' is the understatement of the year - do you feel up to asking for a referral to another oncologist for a second opinion? There are undoubtedly some big decisions you would have to make, particularly about quality of life v longevity but there are plenty of men on here who have begun the HT much earlier than is being proposed in your case and have been able to keep their PSA stable enough to go onto intermittent HT - check Topgun, Ray, George, among others. You could also explore with a second opinion onco the possibility of HIFU (if they know where in the prostate bed the cancer still sits) and/or a choline PET scan to see what is actually happening. It may be that your PSA is still a tad too low for the PET scan but these are pretty persistent cells and may be clustered together enough to show up.

When you had the RT, how many sessions did you have and can you recall how many Gy?

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

User
Posted 08 May 2016 at 23:37

Hi Lyn,.. thanks for your reply,.. sorry I have not replied earlier, only my wife had to be taken into hospital and because of her condition I have to fight every time to make sure she has the right drugs at the right time, it's a nightmare! I'm very grateful to the NHS for all they do but these days, staff are in short supply,.. I guess in some ways I feel that is why I have been told come back in a few years or whenever, perhaps there are so many patients these days they can't cope! At the hospital I attend there are two oncologists. Anyway to answer your question I went up to the radiation department and asked them, I was informed I had 32 days, 64gys. Thanks again for taking the time to read and reply. Take care all. Sid x

What matters is not the years in your life, but the life in your years!
User
Posted 09 May 2016 at 23:22
Hi Sid ,

Lovely to hear from you although not quite with the news that you would have wanted to report. I am sorry to hear about your wife and I hope things improve soon. Life can be tough at times ehh.

Keep going forward.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 May 2016 at 00:06

Sorry to hear about your wife Sid - is she back home now?

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

 
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