Different advice from consultants

I concur with Chris. I've never had any significant delay getting a scan done once my Onco has ordered it. The last time she requested scans, the appointment letter for the nuclear medicine scan arrived through my door on the morning after my consultation with her. You could have knocked me over with a feather. The NM scan took place 6 days later. The CT scan were real laggards http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif, it was a further 10 days before the scan was done.

In that case he will remember Phil Parkinson (Parky) who is probably the best manager ColU ever had. He was with Charlton for a while after moving on from ColU.

At 0.1 the cost of a private scan could be money down the drain - we have been told that nothing is likely to show up until the PSA is over 1.0

I am not sure why the private guy is suggesting scans anyway - 0.1 seems a pretty good result considering your OH does still have a prostate which will be secreting some PSA from healthy cells???

I wouldn't accept anything less than 3 monthly tests though - 6 month gap seems a long time for a G9

The most complicated part of cancer is not the treatments but working out the politics behind the treatment.

Leila

The not knowing whether it's cure or not is intolerable.

Yet we somehow seem to keep going,even enjoy too.

Leila

Edited by member 26 Jan 2017 at 19:35  | Reason: Not specified

Thanks Leila

Edited by member 11 Feb 2018 at 20:21  | Reason: Not specified

Leila, it was a curative treatment plan and you know that the 3 years of HT was way above what many other men do so you have absolutely given it your best shot. What is your worst fear? That the PSA is going to shoot up now the last Prostap has been given? It doesn’t usually happen like that - it usually takes a few months for the testosterone production to really get going again so perhaps relax a bit for now and delay the worst fears stuff until this time next year or the year after? His PSA will rise a little over the next year or so but that is normal - look at Ray’s profile for an idea of what an irradiated PSA looks like over a 10 year stretch.

It is hard to settle into a new normal but you will do it. The big positive in your case is that the PSA has stayed so low for the duration of the HT - no sign of hormone resistance is a good thing.

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.

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

Leila

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 

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..

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.

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! !