Reassurance if possible.

Like you and no doubt others I started worrying about back ,hip ,thigh and pelvic pain. GP thinks I would benefit from physiotherapy. I do have some ostio arthritis and having x-ray next week.

Saw my urethra consultant today and managed to also see my lead Uro-onco nurse. She said with a PSA of 0.06 the pains are highly unlikely to be PCa related but gave me a PSA test form just to check no recent rise.

Thanks Chris

Hi Jayne
I'm so pleased you and Paul had a good break and learnt to laugh again despite it all. It gets easier as the months roll on. Sorry he's not well now though. Keep posting , keep talking.
Chris

Just got my latest PSA 0.07 so a rise of 0.01. Uro onco nurse not worried and as before at such a low reading highly unlikely to be connected to the pains. See GP next week for x-ray results.

How is OH and his pains ?

Thanks Chris

Hi Jayne

I've been on Cialis 5mg daily for last 11 days and nothing has changed, impotence wise, not that I expected it to. 

Perhaps I'm a bit more low back achey, and could say that the Cialis was responsible, but ( linking it to your earlier comment about OH's backache..) I strongly suspect it has a lot more to do with how the discomfort and incontinence  post op has led to me sitting differently and for longer periods than I'm used to.

I've been either sitting reclined, with the weight through my tailbone, or leaning forward and hooking my feet under a dining chair. This means that the muscles either side of the spine (at the level  below the ribs) are either being held stretched, in the former, or are overworking in a shortened position in the latter. They ache for this reason. They're doing work they're not usually called on to do for such long periods. 

In a healthy low back, sitting is accomplished by postural muscles, not the ones I'm over-using, and part of that postural system is the muscles of the pelvic floor. But after a prostatectomy  those pelvic floor muscles are suddenly required to be  in a heightened state of alertness to cope with incontinence. They're not able  to respond as readily to small  challenges in sitting balance. It's like asking them to multitask when they're not used to doing one of the tasks. As a consequence you can end up sitting more statically 'down there'. Typically, the pain is worse when rising from a chair,after sitting for sustained periods,  and eases when walking a bit.

Any half decent physio should be able to advise you how to sit correctly- and it is not 'chest out -shoulders back' as if you're having your army photo taken!  You can still follow up any necessary investigations whilst you're exploring this approach to self management. 

Pleased to hear your good news ,don't leave the ED issue too long. When you have finished your garden you are welcome to come and start on mine.

Thanks Chris

That's great news Jayne. I'm really pleased for you both. It's tough but you have come out of the other end now. Yes new probs ahead re ED etc but give him that space and time maybe , and all could come good. I was strangely the reverse in that I was rampant for 3 months post-op. I guess I felt so awfully incapacitated I was trying everything to prove I was still a man. I've not given up yet. Things are ok.
Being a fellow sufferer I'm happy to hear you feel you are benefitting from councelling. It's been damn hard for you too. Not just the PCa. Take care you both
Chris

Haha thanks Jayne
El and I are at opposite ends of the country so we are getting on great thanks. Petes with me on grandparent road trip.

Following my initial visit to the GP on the 22 Feb about my hip and back pain I got a phone appointment to be told that the x-ray showed early on set of osteoarthritis, which is quite strange because I new I had that three years ago.

GP said result did not really explain pain but the options were physiotherapy, yoga, Pilatus or cycling almost any exercise that did no invole joint impact.

The discomfort is easing and sometimes goes almost entirely, I assume bone involvement pain does not come and go.

Thanks Chris

L

I saw your reference to epidurals in a previous post, I have never had it confirmed that I had one, but I do recall sitting on the anaesthetic table asking if it was too late to change my mind about the op and having the anaesthetist doing something behind my back.

For reassurance I think in an ideal world J/P and myself would have been sent to have a bone scan to allay our fears, but we live in the real world so that is not going to happen. My estranged father died of metastatic PCa, something I did not know until after his passing and my diagnosis. I did speak to my father by phone but never saw him during his last years but he would often say " I just wish I could get rid of this back ache" so it perhaps wrongly raises the concern slightly.

My Uro nurse has said with a PSA of 0.06 (as it was) bone involvement is highly unlikely.

Thanks Chris

Thanks for the update Jayne, always good to hear how others are progressing. Good luck to Ben for his A levels.

Glad you have been able to extend your sessions. They can only help.

All the best

Sandra

its good to hear that things are settling down for you both and that counselling is helping you to cope.

Keep persevering with the intimacy, things should improve. The two of you should take as much enjoyment as you can from trying. There are lots of posts on here about how others are getting along with ED so plenty of good tips on things that you can try or medications that might help too.

I don't know if I dare ask what a mature stag do might involve?? Seen plenty of rutting and staggish behaviour from groups of young men out on the town in Newcastle and Tallinn when I have been there with my family, so I hope Paul has as much fun as they all seemed to be having!

As for Paul' brother's request for a PSA test being denied, his GP is NOT following the NHS guidelines there are two specific scenarios where a man has a right to the test, one is if a man of any age presents with symptoms and the other is if he is 50+ and there is a familial history (with or without symptoms)

Is there a different GP he can see at the practice, you could also try to see if any NHS service in your location is running well man clinics?

I have been doing a bit of research into the genetics of cancer and have done several courses on that subject. The last one I did had a whole section devoted to BRCA2 related cancers and included genetic profiling and genetic counselling (like drawing up a family tree of cancer history with a trained professional) if there were multipe instances of BRCA2 related cancers across the profile or more than 2 in first level familial connection, then the patient could be recommended for a genetic test after having counselling to advise them what the potential results could mean and the treatments they might imply as necessary.

If you read Man with PC"s post about perseverance (from the option Recent Conversations at the top of the home page) you will see why this could be of some interest to you.

I do get reminded that this genetic cause of PCa is quite rare, but it can and does happen. The article Barry has posted up just goes to show what can happen if that is identified even at a late stage of the disease.

I wish you all the very best as always

xx

Mo

Edited by member 16 May 2016 at 10:33  | Reason: Not specified