I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

«<2627282930>»

Chris J's Journey

Email this conversation Print this conversation
User
Posted 03 May 2017 at 18:41

Hi Chris,

Looking at your biog, it seems when you were on the HT, it was doing its thing and may be RT would give it a good "kickin" too?

This dropped into my inbox today which might be worth a read....

http://www.oncologynurseadvisor.com/prostate-cancer/aggressive-combination-approach-efficacious-in-metastatic-prostate-cancer/article/654514/

I wish you strength and of course peace of mind

Flexi

 

 

 

User
Posted 03 May 2017 at 20:16

Hello Chris,

I'm ever so sorry to hear about your scan result. But I'm confused.

If you have zero cancer, how come your PSA is rising? I'm not going to be the one, to blindly tell you to go for the radiotherapy, as I still remember how inconvenient it was. Indeed I was told today, that I'm still recovering from its effect, even after 14 months.

I pray all goes well for you.

 

Frank.

User
Posted 03 May 2017 at 20:29

Hi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data

User
Posted 03 May 2017 at 20:34

Ho hum. The other option is to hold your nerve for a while longer, not have RT, not have HT and see whether anyone will agree to another scan in 6 months. If nothing has shown up on the PSMA then these are still VERY micro-mets and could be anywhere so what was his rationale for RT and where is he going to aim it????

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

User
Posted 03 May 2017 at 20:48

Chris,

Your analysis of a failed scan seems the only logical answer to me.. in which case they should admit it and get you lined up for a new scan asap.

Regroup sir! You need a plan that makes sense and as Lynn says what was his rationale for RT with nothing to aim at!?

Sometimes when a plan makes no sense it might be because it's nonsense

Clare

User
Posted 03 May 2017 at 21:03

Chris

Not a good read. Whatever path you take will involve some unknowns so take time out before deciding. The choice may well come down to the not unusual one of what is more important more severe side effects with a possible longer life or the opposite.

Good luck

Ray

User
Posted 03 May 2017 at 21:49

Thanks everyone.
I like my Onco but he insisted PSMA PET didn't exist in this country until I told him it did ( helped by you guys ). He categorically insisted today that no one EVER does 20 RT sessions on a man post surgery , yet we all know they do !! Out of touch maybe. He knows I have small margins on bladder so I guess he can only see that in front of him. He would aim at lymphs as well. Filled with dread and I reckon no way will I have it done without evidence. I read some of your awful reports about swollen legs and bladder spasm and bowel problems and it's not for me. Not even the chance. Feeling fearful but brave enough to face it head on. I'm helping care for a guy at the moment that has just given up Abi due to S/E's. I need facts not fiction now to progress I think

Edited by member 03 May 2017 at 21:53  | Reason: Not specified

User
Posted 03 May 2017 at 22:01

Ah sh*t.
Take your time. No point at all jumping into treatment you're not happy with.
I know you can work through this and move forward.
All the best. Julie

User
Posted 03 May 2017 at 23:37

Originally Posted by: Online Community Member

I like my Onco but he insisted PSMA PET didn't exist in this country until I told him it did ( helped by you guys ). He categorically insisted today that no one EVER does 20 RT sessions on a man post surgery , yet we all know they do !! Out of touch maybe. 

 

You are being more generous than I would be! 

 

Second opinion / alternative onco perhaps? 

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

User
Posted 04 May 2017 at 06:57
Originally Posted by: Online Community Member

Hi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data

Good morning Chris,

I am sorry to poke my nose in on this thread, but I thought my experience may be of interest.

I have had 2no PSMA PET scans over the recent months. Mine were done at The London Clinic. Both scans were incredibly detailed and we're able to advise my Onco in miniscule detail where my secondary mets were.

Following the 1st scan the treatment followed was Chemo. The 2nd scan was to identify it's effectiveness. Again the PSMA PET scan picked this all up in minute detail.

You indicate that they might not have got the scans right in your case. I would be amazed if that were the case. These things are not cheap and I am sure BUPA would not have authorised these tests going ahead in my case on the assumption that it may or may not work. No chance.

As regards your future treatment, I am confused. Why are you looking at RT where there does not appear anything to aim at?

Should you not be considering Chemo if there is something out there?

All the very best wishes to you Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 May 2017 at 06:58
Originally Posted by: Online Community Member

Hi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data

Good morning Chris,

I am sorry to poke my nose in on this thread, but I thought my experience may be of interest.

I have had 2no PSMA PET scans over the recent months. Mine were done at The London Clinic. Both scans were incredibly detailed and we're able to advise my Onco in miniscule detail where my secondary mets were.

Following the 1st scan the treatment followed was Chemo. The 2nd scan was to identify it's effectiveness. Again the PSMA PET scan picked this all up in minute detail.

You indicate that they might not have got the scans right in your case. I would be amazed if that were the case. These things are not cheap and I am sure BUPA would not have authorised these tests going ahead in my case on the assumption that it may or may not work. No chance.

As regards your future treatment, I am confused. Why are you looking at RT where there does not appear anything to aim at?

Should you not be considering Chemo if there is something out there?

All the very best wishes to you Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 May 2017 at 08:35

Dave that's very kind of you to reply thank you. I guess I'm just wary that the injections are so difficult to make and all my cancellations etc could mean I got a duff one. But I see that you had superb results and wish you the best with your treatment.
I have no idea which way to turn other than HT only for the future

User
Posted 04 May 2017 at 10:34

Chris,

I know how important your sexual function is to you. Is Chemo without HT an option? I'm assuming chemo and the associated steroids one has to take don't affect sexual function, this assumption would need checking. I've been on Zoladex since August 2013 so I don't know the answer to this. It's been a long time since the old boy stood to attention.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

David

Edited by member 04 May 2017 at 10:36  | Reason: Not specified

User
Posted 08 May 2017 at 18:46

I have received fabulous advice from so many of you kind people on another thread in order to help me make a decision. I left a message with my specialist nurse on Sunday night and I was in a bit of a state emotionally. He called today and said he was kind of expecting to hear from me lol !!
I fed to him that El and I had already more or less decided again that I didn't want RT based on incomplete facts , and that my mental health had just plummeted in 4 days etc.
Explained I had loads of advice from PCUK and from research and that I would like a second opinion. He was FANTASTIC and reassuring as ever and fully agreed with me and says the team at Southampton understand I may need my treatment ' tailoring ' to give the best all round results. He has insisted I will get a new appt with a different Onco without having to pay, and fully reassured me it's not a ' closed-shop' between consultants there. I can't mention names but there is an AMAZING Onco here who is running the new headlined immunology unit at Southampton , and he specializes in prostate and bladder cancers. I've asked if I can see him either NHS or privately. I've had superb service in this area so I feel more at ease. I've been told it's fine not to restart HT until some decisions have been made.
Thanks so much to all of you on this precious forum.

User
Posted 08 May 2017 at 18:49
Glad you're happier Chris.

Ulsterman

User
Posted 08 May 2017 at 19:04
Great result 😀😀
Don't deny the diagnosis; try to defy the verdict
User
Posted 08 May 2017 at 19:22

Brilliant news x

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

User
Posted 08 May 2017 at 19:27

Good lad.

User
Posted 08 May 2017 at 19:51

Chris, that's really good news, and power to your elbow for doing it!

 

Flexi

User
Posted 08 May 2017 at 19:57

Chris

I read the other thread, felt for you both but nothing I could have added at this time.

Fingers crossed this new path leads to the success you've worked so hard for.

Ray

 
Forum Jump  
«<2627282930>»
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK