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Different advice from consultants

User
Posted 05 Jan 2017 at 15:55
We have been given some conflicting advice from consultants and would appreciate other views as we are not too sure which way to go.

David had his HDR Brachytherapy privately and we paid for it, and his radiotherapy on the NHS so he has two consultants.

Mr. A the private consultant is suggesting a Tesla. 3 scan in January after his next PSA. His last 2 PSA readings have come back as 0.1

Mr. B NHS consultant is saying PSA every six months and that's all he needs, scans are not required.

David is Gleason 9 locally advanced and therefore it's an aggressive type of PCa, so we want to do the right thing, but we are self funding and don't have endless funds, but we want to do the best thing for his welfare.

Our local surgery is of course following the NHS advice, which we can appreciate, and they won't refer him for the scan.

Any experience and views or advice would be appreciated.

Thanks

Leila

Edited by member 05 Jan 2017 at 19:22  | Reason: Not specified

User
Posted 26 Jan 2017 at 19:54

Best of luck with the psa ok !! I'm having mine done monthly now and it's doubling six-weekly. Can't wait for the scans so I at least know what's happening. What is immensely difficult is that I'm JUST beginning to recover 19 months after the op , only for treatment very likely to start again soon and spoil things. Feel like giving up sometimes , but yes you have to keep trying and enjoy stuff when you can x

If life gives you lemons , then make lemonade

User
Posted 05 Jan 2017 at 18:54

Although the psa level itself isn't always a true indicator of aggressiveness , it's rate of change is a good indicator of advancement or recession. In your shoes I would stick with psa testing just for now , but for freedom of worry would see my GP and ask politely if you could have 3 monthly testing. They may oblige. I personally have great faith in the NHS , and at the end of the day the private doctors mostly work for the NHS also. If your NHS doctor suspects recurrence , you will get the scan reasonably quickly hopefully

If life gives you lemons , then make lemonade

User
Posted 06 Jan 2017 at 02:00

Ha ha ha - no, but I investigate them sometimes! No more discussion though since this is a Google-searchable forum :-/

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

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User
Posted 05 Jan 2017 at 18:54

Although the psa level itself isn't always a true indicator of aggressiveness , it's rate of change is a good indicator of advancement or recession. In your shoes I would stick with psa testing just for now , but for freedom of worry would see my GP and ask politely if you could have 3 monthly testing. They may oblige. I personally have great faith in the NHS , and at the end of the day the private doctors mostly work for the NHS also. If your NHS doctor suspects recurrence , you will get the scan reasonably quickly hopefully

If life gives you lemons , then make lemonade

User
Posted 05 Jan 2017 at 19:26

Thanks chris, I think we might go that route. We have been chewing over options and I've done quite a bit of reading that indicates it's the rise in PSA that's important. Thanks for taking the time to respond.

Leila.

User
Posted 05 Jan 2017 at 20:02

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.

User
Posted 05 Jan 2017 at 20:19
Thanks Col. U.

David thinks he might just do the three monthly PSA, and see how it goes.

He's a devoted Charlton Althletic supporter he started going to home games when he was 10.

We live in west Wales now, but he still gets nervous when they play, and upset when they loose.

Leila.

User
Posted 05 Jan 2017 at 21:45

Originally Posted by: Online Community Member

He's a devoted Charlton Althletic supporter he started going to home games when he was 10.

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.

User
Posted 05 Jan 2017 at 22:22
Col,U. David passes on his thanks for sending Mark Kinsella, he was captain when they were in the premier league.

Edited by member 05 Jan 2017 at 22:23  | Reason: Not specified

User
Posted 05 Jan 2017 at 23:07

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

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

User
Posted 05 Jan 2017 at 23:31
Thanks Lyne. We have been discussing this evening, and decided to go with the three monthly PSA.

advice from you and others is appreciated,

Can I make a guess you might be a SW in residential/ fostering ... don't answer if you think I am over stepping the mark, just interested.

Leila.

User
Posted 06 Jan 2017 at 02:00

Ha ha ha - no, but I investigate them sometimes! No more discussion though since this is a Google-searchable forum :-/

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

User
Posted 06 Jan 2017 at 11:51

Originally Posted by: Online Community Member
Col,U. David passes on his thanks for sending Mark Kinsella, he was captain when they were in the premier league.

Mark was loved, and I mean really loved, by the supporters of both of our clubs. It's something that binds us together.

Up the Addicks!

User
Posted 26 Jan 2017 at 18:23
Read this comment today and it resonated with me.

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

Leila

User
Posted 26 Jan 2017 at 18:51

I'm not sure it's even that tbh. For many on here it is the relentless mental anguish whether cured or uncured. It scars you forever one way or another it seems :-((

If life gives you lemons , then make lemonade

User
Posted 26 Jan 2017 at 19:26
Chris ....Yep, I think I get that, David is due to have his PSA tomorrow and see the oncologist soon... this whole roller coaster stuff is very painful for him... and I watch him suffer. I try to keep a lid on my feelings, but I know they leak out. The politics stuff iritates me I suppose it's as if this crappy disease ain't enough to manage.

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

User
Posted 26 Jan 2017 at 19:54

Best of luck with the psa ok !! I'm having mine done monthly now and it's doubling six-weekly. Can't wait for the scans so I at least know what's happening. What is immensely difficult is that I'm JUST beginning to recover 19 months after the op , only for treatment very likely to start again soon and spoil things. Feel like giving up sometimes , but yes you have to keep trying and enjoy stuff when you can x

If life gives you lemons , then make lemonade

User
Posted 17 Dec 2017 at 21:34

Good to learn David continues to do well physically and that his PSA is still so low. Am not in a position to comment on whether a bone scan is advisable in his case and if so why.

The subject of insurance comes up from time to time and you may be able to find one of the threads. Try google as the threads from this forum are usually much more easily found that way rather than by using the poor search facility on this forum.

I have always taken the view that unless a man's PCa is at an advanced stage, for a holiday of say 2 or 3 weeks the potential extra cost of covering PCa is not worthwhile, so have always carried my own risk on it so far. I have however always informed my insurers though. (This is information and does not constitute advice).

Festive greetings warmly reciprocated.

Barry
User
Posted 28 Jan 2018 at 12:07
David has one more Prostrap injection to go. For the past week or so he’s been suffering with pains in his legs and groin. He is fed up with the HT now and I’m wondering if the extra pains are because he can see the end of the tunnel, an accumulation of the three years treatment or there is a need to discuss with his onco. He’s exercising regularly he works through the fatigue with excercise but the last week he’s been low on all fronts. We’ve had an emotionally rough few months with friends dying, and more cancer in the family... so it’s trying to rise above the sadness, acknowledge we ain’t immortal and dealing with side effects of the dammed disease. David does not like making a fuss,so do I need to strongly suggest further action or go with his flow. Any suggestions welcome. This week we are in cornwall at a lovely place, and I hope he can enjoy some days of enjoyment ( and me of course ) thanks .

Leila

User
Posted 11 Feb 2018 at 20:02
David is still experiencing pain in his groin, he had a on line chat with the oncologist who assured him it’s side effects of the HT, which it may well be, he’s been on the stuff for nigh on three years. The last three weeks have been hard for both of us, he’s been feeling generally rough, low and grotty. He’s G9 T3B which isn’t brilliant. We’ve both been feeling the strain of this, and I’ve put on a brave face. I suppose I’m looking at how this is going to unfurl when the HT finishes. Oh yes we both tell the world we are positive and upbeat. At the moment the demons are drowning me with negativity and gloom. We sadly have little faith in our gp, although a new dr has joined the practice and he seems a bit more on the ball. We have managed the ED, dealt with all the fall out of a late referral which was a blow. We are strong as a couple, and honest to a fault about things I suppose I am scared stiff of this crappy bl##dy disease coming back, especially with his “scores” should we be asking for an appointment with an nhs onco to discuss plans ( he paid for his treatments, in hindsight we might have done it differently) Currently he has a private onco and an nhs radiologist but no specialist nurse or appointments booked. David finds it hard to ask for help, he buries his fears deeply. I suppose I’m trying to look forward and plan, and realistically we should expect more treatments in the future. He’s petrified of further invasive treatments especially chemo. I suppose these feelings are not uncommon, and they will pass.

Thanks Leila

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

User
Posted 11 Feb 2018 at 20:27
David also has a passion for living and keeps himself fit and healthy. He wants to throw as much at this disease as he can. I’m the

one who does the reading and researching, though 😌

User
Posted 12 Feb 2018 at 00:33

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.

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

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 16:58

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 

 

 

 

 

 

 
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