My husbands recent diagnosis of advanced prostate cancer

User

Posted 12 Jun 2023 at 15:45

Go on holiday Elaine, enjoy it.

User

Posted 12 Jun 2023 at 16:11

Holiday hard Elaine. Hopefully you are only looking at residual cells in the prostate bed area and very slow growing. Dr CJ says travel 👍👍👌

User

Posted 12 Jun 2023 at 16:30

Going to be different. He has a G9 that is doubling every 3 months. SRT sooner rather than later if you want the best chance of long term remission.

Maybe get the treatment plan set before you go on holiday so you can forget about it while away maybe the best approach?

User

Posted 12 Jun 2023 at 17:29

Elaine, you probably already know there is no guarantee the PSMA scan will pick up anything. My own PSA tests have been erratic and no one can explain why.

Holiday does sound good.

Thanks Chris

User

Posted 12 Jun 2023 at 19:12

I’m inclined to agree with Francij1, get a plan in place and then go. Think you will feel better that you a plan in place, I know I would. Sending love x

User

Posted 12 Jun 2023 at 21:46

If you wait till you have a plan in place, you won't be going on holiday this year.

If you don't go on holiday the next PSA test will be in about six weeks and will be about 0.32 The consultant will probably say "come back in six weeks" (consultants like a summer holiday too). So in another six weeks (12 weeks from now) the PSA will be 0.64 and maybe some one may think it's worth doing a PSMA scan. Alternatively you can go on holiday, come back in 8 weeks and have a PSA test (probably be 0.5) and be no better or worse off treatment wise than if you had stayed at home.

Go on holiday.

Dave

User

Posted 13 Jun 2023 at 10:21

Originally Posted by: Online Community Member

Thanks Francij1
I’m inclined to agree with you aswell and I would much prefer to have something in place.

The main issue is the scan, do we have a scan knowing it might not show anything….I would just have to book one private as none of the consultants recommend at this point.

The fact Rob had cancer in his lymph node means we can’t take a chance on SRT without the scan and don’t want him to start HT before the scan as really want to know what we’re dealing with.

I think Rob just wants to go away now but I do worry we will have left it too late!

User

Posted 13 Jun 2023 at 10:25

Originally Posted by: Online Community Member

Elaine, you probably already know there is no guarantee the PSMA scan will pick up anything. My own PSA tests have been erratic and no one can explain why.

Holiday does sound good.

Thanks Chris

This is exactly the issue Chris. If I knew there was a chance it would pick something up we wouldn’t hesitate. Must be really frustrating for you not knowing what is going on….hope you get some answers soon.

We paid 4.5k for his last PSMA pet, I’ve seen people put they have paid less than that though and just wondered where they would have had it done?

User

Posted 13 Jun 2023 at 10:32

Originally Posted by: Online Community Member

If you wait till you have a plan in place, you won't be going on holiday this year.

Go on holiday.

Thanks Dave.

I completely understand what your saying but, if we paid for a scan we could probs get one next week, if it showed anything they would probably start him on bicalutamide straight away, we could delay the holiday slightly to wait for his first injection and then if RT was an option sort that out when we get back. It all sounds so simple apart from the fact no one thinks the PSMA will show anything. I think we all look at ulsterman in this situation, but I know that isn’t the case for everyone 🤷🏻‍♀️

Really appreciate everyone’s thoughts on this, thank you x

User

Posted 13 Jun 2023 at 13:21

Elaine as he has already had one positive node it would be whole pelvis Salvage therapy not just the prostate bed. Ulsterman had additional targeting of his + node but your other half has already had that removed otherwise I suspect the salvage RT would be identical to Ulsterman..

User

Posted 13 Jun 2023 at 13:27

Originally Posted by: Online Community Member

We paid 4.5k for his last PSMA pet, I’ve seen people put they have paid less than that though and just wondered where they would have had it done?

Elaine, my insurance company paid £4.1k for my scan at the Genesis centre in Oxford. The following is a link to a recent post that gives details of their scan.

https://community.prostatecanceruk.org/posts/t29071-Lutetium-177-treatment-in-Germany#post281978

I finished some more treatment yesterday I will post an update later.

Thanks Chris

Edited by member 13 Jun 2023 at 13:28 | Reason: Not specified

User

Posted 13 Jun 2023 at 15:57

I think if you hadn't asked for an early referral to oncology, it would be a no-brainer to go on holiday ... no new diagnosis, no change in circumstances and no change to treatment plan so nothing to have to inform the insurer of. As you have been referred to oncology, you would have to tell the insurer who may withdraw cover until you have more tests and a treatment plan in place - or might just charge you an extra fee. Going on holiday without insurance is risky.

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

User

Posted 14 Jun 2023 at 15:31

Originally Posted by: Online Community Member

I suppose I’m thinking that if there is anything distant RT would be a waste and cause unnecessary damage. With Rob having the suspected bone met originally I would really want to know exactly what is going on. I think I would chance a scan now but I’m not sure Rob agrees, and of course when all the professionals are telling him it’s too early then I can see why.

User

Posted 14 Jun 2023 at 15:39

Originally Posted by: Online Community Member

Thanks Lyn. I think we would just get insured and not include the prostate cancer even though I know we have to still declare. It’s really unlikely that the PC would cause immediate problems I’m guessing and if need be I’m sure I could drive us home within a day or two.

I’m more worried what could be happening in that time although I know a scan might not show anything at this point x

User

Posted 14 Jun 2023 at 15:42

Quote:

Originally Posted by: Online Community Member

We paid 4.5k for his last PSMA pet, I’ve seen people put they have paid less than that though and just wondered where they would have had it done?

Elaine, my insurance company paid £4.1k for my scan at the Genesis centre in Oxford. The following is a link to a recent post that gives details of their scan.

https://community.prostatecanceruk.org/posts/t29071-Lutetium-177-treatment-in-Germany#post281978

I finished some more treatment yesterday I will post an update later.

Thanks Chris

Thanks Chris.

I guess it must be a pretty standard price then, I thought I seen people paying a lot less but maybe not.

User

Posted 06 Jul 2023 at 10:26

So we made the decision to go on holiday as no point waiting around when no one seemed to want to do much at the moment. We set off as planned and got the eurotunnel 27th June. Decided to stay in France a couple of days before the big drive to Nordkapp.

Three days in I got a phone call from Christie’s to book Rob in for a PSMA pet scan 🤦🏻‍♀️ well this was unexpected!! We’ve haven’t had an appointment with the oncologist but I asked for a referral and I know she requested robs info from London. She has obviously looked and thought worthwhile to do the scan at this point. For us it was a no brainer, we travelled home yesterday and scan tomorrow.

He’s having F18 (his previous PSMA was G68) just a different tracer?? Do they work differently does anyone know?

So a bit disappointed we didn’t complete our trip, but glad we will hopefully have an idea of what is going on soon and if more treatment needed we will hopefully still have a chance at curable/very long remission 🤞🏼🤞🏼

Hope everyone is doing well x

User

Posted 07 Jul 2023 at 18:26

Scan done 👍 now the dreaded wait for results! Really have no idea how long that could be but trying not to stress too much about it.

Been keeping myself busy and decided to do a 90 day challenge to walk 5k everyday. So far I’ve raised over £1500 for prostate cancer UK and still about 65 days to go.

User

Posted 07 Jul 2023 at 18:38

Definitely worth cutting your holiday for the scan. Good luck with that.

Great work with the 5k/day and £1500. Is it a gifting page? All the best, Peter

User

Posted 07 Jul 2023 at 18:46

Elaine, I had my scan done privately and the report was ready the next day, although I didn't see the onco and get the results until four days later

My first scan was f18 1007 and the next one was G68. I think there is a difference between the scans but I will leave that to the scholars to explain. Both my scans picked up tumors.

Hope you get sorted out.

Thanks Chris

User

Posted 07 Jul 2023 at 19:06

I'm glad the scan worked out. It's pretty hard getting treatment on the NHS so when it is offered grab it with both hands.

I just googled Nordkapp, I think it's a bit like Scarborough, so you might have had a narrow escape.

Dave

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