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Different advice from consultants

User
Posted 12 Feb 2018 at 00:58

Thanks Lyn,I know the facts, yes, my worst fears is his PSA will shoot up like a rocketI the mature sensible woman in me realises this is unlikely. He’s done really well on the treatments. Normally I’m so well planned and prepared, this crisis of confidence has hit a bit too hard. I’m usually the manager, planner and organiser, definitely not whimpering in the corner with me hankie.
I’m sure tomorrow, or even the morning will balance my wobbles. Too much reading and researching, I have always been someone who likes to keep informed. I like things to be organised, this PCa isn’t, so I find my mind going off into negative realms .
Thanks for your response, I needed some good plain common sense.
My dear colleague Pete says, “the thing about common sense is, it just ain’t that common”

Leila

Edited by member 12 Feb 2018 at 01:00  | Reason: Not specified

User
Posted 13 Feb 2018 at 15:00

Hi Leila hope al goes well and try to stop worrying, tony was diagnosed with gleason 9 T3B before one of my grandsons was born, he has now started senior school and is almost 12. tony had RT and HT and has been on and off hormones since diagnosis but is still fit and healthy as a 73 year old can be.
barbara.

User
Posted 13 Feb 2018 at 15:28
Hi Essex babe, thank you for your reply. I think I have put my demons back in their box and nailed them down. I’m am back to my positive self again. It is reassuring to hear others positive stories. I think my blip was because the end of his Prostrap is in sight. My common sense intellectual brain tells me he has had the treatments 3 yrs HT, RT & the brachy. So he had done everything right. I’m delighted to read you husband is doing so well, long may it continue.

Let’s look forward to a good spring and summer. Thanks again.

User
Posted 17 Mar 2018 at 15:52
Ive come across this website, any views people. https://www.oncologica.com/about-us/our-team/# it’s quite costly to have the test, and if you have focussed drug regime will the NHS pay for it. Initially it looks tempting but after some thought I’m beginning to wonder.

So much information and research available, it can be like a jungle of information.

User
Posted 17 Mar 2018 at 18:51

Are you in danger of over-thinking Leila? Perhaps just enjoy the end of planned treatment for now and if .... if ... you ever have a need to think about going back on treatment in the future, you can ask the onco about these types of testing companies?

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

User
Posted 17 Mar 2018 at 19:20
Haha, not this time Lyn, I was reading and came across this and thought it was interesting. I think I’ve got my head around the treatment and my overthinking phase. Thanks for thinking of me though.

Leila

User
Posted 17 Mar 2018 at 19:42

Okey dokey - glad you are okay

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

User
Posted 17 Jun 2018 at 15:58

David has completed his three years of HT, he had a P.S.A last week and it is still <0.1 he is due to see a new consultant tomorrow. Throughout the three years  he’s had an ongoing discomfort, pain in his  right side. Over the last year he’s put on a bit of weight around his tummy from the HT, though not a lot. He is really worried about the disomforting feelings  he is experiencing , hence seeing a urologist tomorrow. He has been told by the oncologist the discomfort is nothing to do with his prostate cancer. What he would like to know is what it is, if it’s damage from the HDR Brachy, RT or HT he can manage it, it’s the not knowing that gets to him.  He finds medical appointments  stressful as he’s a very black & white type of person, does not deal with possibles and maybes very well. I’ve tried to prepare him, so he gets  the best out of the time with the urologist. 

I will go with him and “ride shotgun” takes notes and try and keep him calm, any suggestions on questions to ask that might gets some reassuring answers, or action to help. 

Thanks Leila 

 

 

 

 

 

User
Posted 20 Aug 2018 at 23:57

David seems to be getting aches and pains,especially in his left side, he finished his three yrs HT five months ago. Is this a known side effect of coming off HT. He gets really worried about these pains. On a more positive. Let he has been doing awareness and money raising gigs for lour local prostate cancer support group, these reslly help him feel hes helping other men who may have PCa. Any advice on the aches and pains would be appreciated. 

 

 

User
Posted 21 Aug 2018 at 11:13
Make sure you get a convincing answer from your medical team, be prepared to kick up a fuss if you don't.

Skeketal pains of any type are a worry to anyone with PC because we all know PC likes bones so this makes us prone to worrying about them. BUT pain is pain so if it is unexplained and especially if it is intolerable or getting worse it needs to sorted..

User
Posted 21 Aug 2018 at 14:16
Thanks francij1, I agree, I’m pretty good at being polite and assertive. David is seeing the urologist in a few weeks. He has

hip pain which is my worry. Your post will convince him to take it further. I might be making a “ fuss” 😏

User
Posted 21 Aug 2018 at 14:17

Hi Leila,

I started getting aches and pains the day after my bone scan was conducted and indeed had a week with sciatic nerve pain.

This all went away, especially two weeks later when the bone scan came back clear.

Then when I started on the hormone treatment aches and pains again mainly in my left side ironically. Still the occasional twinge now and again, but I've stopped worrying about it now.

I think some of the problem is reading too much on Google and of course becoming hyper sensitive to every ache and pain in the body.

Add to that the fact that the body is probably responding to (in my case) starting hormone therapy and in David's case coming off hormone therapy could account for the aches and pains.

Furthermore my bone scan whilst finding no evidence of skeletal metatases, did note arthropathic uptake in various joints including the hips. Indeed thinking back before I was diagnosed with prostate cancer, I had various aches and pains at times and especially after conducting physical work which as a 57 year old would be expected.

 

 

 

 

User
Posted 21 Aug 2018 at 15:04
Hi Jon, David has had three yrs of Prostrap, HDR Brachytherapy and then five weeks of RT. His initial diagnosis was also Gleason 9 Tb3 N0 M0. We researched and we were advised HDR was the route for the best clinical outcome.

As he is now 68 I suppose he can expect the odd ache here and there, though he is fairly fit. He is due to have a PSA and a follow up with a consultant in September. As PCa does tend to go to the bones we both get a bit “itchy”

Thanks for your response,not many men around who have had HDR Brachytherapy with G9.

Hope you are doing well ?

Thanks

Leila

User
Posted 21 Aug 2018 at 15:16
Must admit my aches and pains usually start when I log on to this site! ! I have a very low but detectable PSA and I am convinced if I didn't I would not notice any pains or frequent this site - although as you get to know the characters on here it does become a little addictive!!

12 months ago my nagging hip and sciatic pain bugged me so much that I got a refferal to an oncologist he did a nuclear bone scan and overlayed Xray. It showed I had arthritis in my hip joint but no sign of cancer. Unfortunately my own father who died of this disease also had "clear" bone scans so thy are not infallible but he never had hip pain either!! He did not get any PC pain until the last year of his life and then it was because his femur fractured due to the cancer.

He is lucky to have a supportive wife and should count his blessings! !

User
Posted 21 Aug 2018 at 15:29

Originally Posted by: Online Community Member
Must admit my aches and pains usually start when I log on to this site! !

😂😂😂😂😂

 
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