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Post RP and SRT journey - Jan 2021 update

User
Posted 06 Nov 2019 at 20:34
Chris

Yes. I was frazzled and moved the decimal place. I know the damn numbers move up and down. Not easy is it?

Ian

Yes. I was flapping like a good one until I rang back. An increase but still below 0.1. Just gotta cross fingers...

User
Posted 07 Nov 2019 at 00:32

Originally Posted by: Online Community Member
I’m also a panicking pollock.

I got home and rang them back because something big was bothering me and it was actually 0.05 to 0.09 with the original number being 0.7


 

I quite like pollock. It is now more than 3 years since John went to 0.11 and then it dropped back down and has stayed at 0.09 / 0.1 / <0.1 ever since. Maybe it will rise eventually but for the time being the onco is of the view that he may just have a higher than average amount of 'healthy' PSA floating around. 

 

If it does recur, I can honestly say that I will never feel he let us down .... I am more likely to feel bad that I couldn't protect him from it. 

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

User
Posted 07 Nov 2019 at 12:58

Thanks Lynn.

Im very hard on myself as you know from past posts.

I have a question. Can one get psa bounce after SRT as well as primary RT?

Thanks

User
Posted 07 Nov 2019 at 18:34
Quote:
Quote:

 

 

If it does recur, I can honestly say that I will never feel he let us down .... I am more likely to feel bad that I couldn't protect him from it. 

unlike me Lynn. I sense the very experienced surgeon I had was possibly focussing too much on side effects results. I say this as I had a focal breach so have always wondered why he saved both sets of nerve bundles. 

User
Posted 07 Nov 2019 at 21:03
I don't understand your post Bri - I was saying that I will never feel that John let me or the family down.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Nov 2019 at 22:12

Sorry Lynn. I thought you meant your oncologist 😏

User
Posted 08 Nov 2019 at 08:42
One good bit of news. My wife came back all clear for her tests. A ray of sunshine to a daft old codger.
User
Posted 08 Nov 2019 at 08:43

That’s great news about your wife. Glad to hear it.

Ido4

User
Posted 08 Nov 2019 at 19:38
One less thing to worry about 👍
User
Posted 08 Nov 2019 at 20:55
Great news x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2019 at 21:51
Yes. It’s my job to fall apart not my wife’s 👍
User
Posted 21 Nov 2019 at 14:30

Fully expect to get a slap but here goes

Have had persistent neck pain in the right hand big musle that runs from the base of the skull to the shoulder muscles and it hurts like hell when I lean my head back and to the right. I also get a lot of referred pain in that area from IBS and in my ear and surrounding areas (it goes when I go if you get what I mean). I also had a viral infection about a month ago that made my neck and shoulders really bad.

Also feeling really tired a lot of the time at the moment.

Correct me if I am wrong but there is no chance with where I am that this is any form of met involvement?

Edited by member 21 Nov 2019 at 15:06  | Reason: Not specified

User
Posted 21 Nov 2019 at 16:53

It’s really hard to deal with pain and not link it with PC.  I doubt it is met involvement but I’m no expert.....

Ido4

User
Posted 21 Nov 2019 at 19:11

Well I also went to the gym four or five days ago for the first time in ages and since then have felt off. Am now shivering and have a headache. I suspect it is so tied together. I think my immune system is a bit pants.

Could be Lupus.

 

House joke 😂

Edited by member 21 Nov 2019 at 19:12  | Reason: Not specified

User
Posted 21 Nov 2019 at 21:28

Hi Pete

Read your post and thought I have got virtually the same symptoms. Last year I had an issue with my left shoulder and this turned out, after a thorough exam by my GP followed up by an ultra sound at the local hospital, to be a case of impingement syndrome where a piece of cartilage get trapped. Physiotherapy resolved the issue.

Fast forward to September this year and I have very similar symptoms to yourself but in my right shoulder. The soreness starts in the lower right side of the back of the skull and radiates into the shoulder and on into the back. Certain movements, like taking off a jacket, are agony and yet other movements like using the arm to carry heavy shopping cause no pain at all. In short, it's only if the joint is moved in certain planes that the excruciating pain   occurs.

I have just had a raft of scans including a bone scan not because of this but because my PSA is rising again after EBRT so I'll know soon enough. My gut reaction is the pain is entirely dependent on which way I move. I suspect a met type pain would be constant?

Anyway, hope it's nothing too ominous. I suspect it's something unrelated but I get the "OMG it's spread to my bones" thought exactly.

User
Posted 21 Nov 2019 at 21:45

Cheers for the info

Well I reckon on sober reflection it’s a combination of things

My physio says my neck is wearing a bit
When I drink red wine or too much if any alcohol I get inflamed
When I overeat I get ibs
My recent virus (returned?) made all my neck and shoulders very sore
I really overdid it at the gym
It hurts when I move it not all the time
It hurts when I poke certain muscles

I’m talking myself into accepting I’m falling apart and need to sort things out a bit

P

Edited by member 21 Nov 2019 at 21:46  | Reason: Not specified

User
Posted 21 Nov 2019 at 21:56
Wear and tear is a big factor. Bit like an old car with dodgy suspension and a few unexplained leaks LOL!!
User
Posted 29 Jan 2020 at 10:00
Next test in a few weeks. I feel somewhat detached but know I have suppressed my anxiety rather than getting rid of it. Still working on accepting my future will be what it will be. Being off work has given me too much time to think.
User
Posted 29 Jan 2020 at 10:15

Pete next test in a week. Then telecon with onco nurses a week after. I do cope quite well with it all, just wondering which side of .2 I will be this time.

Thanks Chris

User
Posted 29 Jan 2020 at 11:35
Yes, it is frustrating when the numbers go up and down making you wonder which way the dice will fall. I have to work hard on not catastrophising the whole damn situation. Ironically, the worry is more exhausting than the bloody disease!

Cross fingers for you!!

 
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