My husbands recent diagnosis of advanced prostate cancer

User

Posted 22 Mar 2023 at 15:49

Originally Posted by: Online Community Member

Elaine, any rise no matter how small is always unwelcome. It took me three years to get from 0.03 post op to 0.23. I kept being told it could level off at 0.1, sadly it didn't, my surgeon did say he had many patients at 0.1.

Good look for next test.

Thanks Chris

Thanks Chris. It’s difficult to know how long to give it to see if it will level off. Rob’s surgeon originally said 0.3 for a PSMA pet scan but after this test he’s said it would be good to start discussions on the pro’s and cons of radiotherapy and when. It could maybe be with it being a fairly significant rise in just 6 weeks.

User

Posted 22 Mar 2023 at 15:51

Also if anyone has any recommendations of good oncologists at Christie’s Manchester could you please private message me.

Thank you x

User

Posted 22 Mar 2023 at 17:28

Originally Posted by: Online Community Member

It’s difficult to know how long to give it to see if it will level off. Rob’s surgeon originally said 0.3 for a PSMA pet scan but after this test he’s said it would be good to start discussions on the pro’s and cons of radiotherapy and when. It could maybe be with it being a fairly significant rise in just 6 weeks.

Hi Elaine,
How long to wait to see if it levels off is a good question. From what I've read if your psa rises fairly quickly after surgery it's better not to wait too long. On the other hand reaching a point where a PSMA scan is useful is also regarded as better. My hospital said it would be 0.5 before they'd put me in for a scan. Although the nurse said some patients have private scans before then.

From what I've read and watched on video a case like your OH should be reading about intense treatment; RT, with HT and chemo in parallel for quite a while. I noticed your onco said pros and cons of RT, for me the cons will be what I have to tolerate and not a reason to avoid. When the time comes we'll see.

I've found this is a hilly track. My psa shot up then went down and then crept up taking a year to pass its previous peak so you can't be certain from individual readings. So good luck, I wish I was at Christies as they have all the gear and reputation although Preston is pretty good except it hasn't a psma scanner so uses Liverpool's.

User

Posted 22 Mar 2023 at 18:42

Originally Posted by: Online Community Member

Thanks Peter. Yes I think I’ll be reluctant to wait too long. Having a retest in 6 weeks and then appointment with local urology and then will make appointment to see surgeon and gather some opinions. I’m guessing we wouldn’t get a PSMA on the NHS with low numbers so may just have to pay again.

It must have been a shock to go above undetectable after 5 years, it looks like it’s pretty slow and steady though so hopefully all will be ok for you.

Do you go to clatterbridge for your scans?? I hear good things about them too. We’re lucky to have Christie’s close, although I hoped we’d never have to see the inside of it.

User

Posted 08 May 2023 at 22:30

Latest PSA 0.115 😥 quite a significant rise in just 6 weeks. Is there any hope that this isn’t cancer 🤷🏻‍♀️ I obviously don’t think so but worth an ask! I’m assuming with the quick doubling time and increased momentum this is likely to be mets rather than prostate bed left over cells?

We have a local appointment this week and then London next week with surgeon so will see what opinions and information we get then.

Really not what we wanted but just need to re group and get some plans in place, hopefully that will help.

Hope everyone is doing ok 👍

User

Posted 08 May 2023 at 23:04

Lots off things can cause a rise in psa stay positive could be anything 👍

User

Posted 08 May 2023 at 23:15

Originally Posted by: Online Community Member

Lots off things can cause a rise in psa stay positive could be anything 👍

Thanks Gaz. It’s 3 consecutive rises now and the latest was a bit of a leap….I could kick myself for booking an afternoon blood test though when I never usually do. Will see what happens the next couple of weeks anyway and next PSA I’ll book 5 weeks from now.

Hope all going well with you x

User

Posted 08 May 2023 at 23:19

Yes ok thanks Elaine I give a lift to a guy who's psa keeps fluctuating found out he had bladder infection stay positive 👍

User

Posted 08 May 2023 at 23:44

Elaine, I was hoping my sudden rise could be an oddity but unfortunately or fortunately we have found the reason.

I took two years for my PSA to go from 0.03 to 0.15, my salvage RT reduced the PSA but not completely. It looks like I had cancer cells in the prostate bed and already outside of the prostate bed.

There has been alot of advice about getting a PSMA scan before SRT but also articles that suggest in certain circumstances SRT before 0.25 can be beneficial.

Hope you get some answers with your next appointments.

Thanks Chris

User

Posted 08 May 2023 at 23:49

Originally Posted by: Online Community Member

We have a local appointment this week and then London next week with surgeon so will see what opinions and information we get then.

Really not what we wanted but just need to re group and get some plans in place, hopefully that will help.

Hope everyone is doing ok 👍

Actually, that rise is fairly consistent with the previous one - your OH's doubling time is around 4 weeks. It could be cells left in the prostate bed but they usually show up as a slow, steady rise rather than rapid like this so yes, I suspect that more scans will be ordered and a careful look at that original suspected met plus the wider lymphatic system. Disappointing but you gave it your best shot.

Edited by member 09 May 2023 at 08:51 | Reason: Not specified

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

User

Posted 09 May 2023 at 00:10

Probably need to be seeing an oncologist now rather than a surgeon.

An early scan would be great to rule out distant spread, you should then have the option for salvage RT asap.

User

Posted 09 May 2023 at 06:40

Sorry to read this, Elaine. Hopefully, everything gets found and sorted.

Ivan

User

Posted 09 May 2023 at 11:24

Heart out to you both Elaine.. Fingers crossed that you have answers and strategy as soon as.

Jamie

User

Posted 09 May 2023 at 11:49

Originally Posted by: Online Community Member

Elaine, I was hoping my sudden rise could be an oddity but unfortunately or fortunately we have found the reason.

I took two years for my PSA to go from 0.03 to 0.15, my salvage RT reduced the PSA but not completely. It looks like I had cancer cells in the prostate bed and already outside of the prostate bed.

There has been alot of advice about getting a PSMA scan before SRT but also articles that suggest in certain circumstances SRT before 0.25 can be beneficial.

Hope you get some answers with your next appointments.

Thanks Chris

Thanks Chris.

I think we’d be silly to go ahead with RT without a PSMA pet scan to be honest, especially knowing it was in his lymphatic system and with the first opinion suspecting a bone met initially. I emailed consultant though and he said no to scan at the moment, will speak to him properly next week. He did say initially probably 0.3 to scan but at this rate we’ll be there before we know it and it does worry me we’ll wait to long 😥 x

User

Posted 09 May 2023 at 12:06

Originally Posted by: Online Community Member

His lastest 3 PSA results were 0.029, 0.044 and now 0.115. These have all been every 6 weeks so the latest one seems to have jumped quite a bit more.

Hopefully we can get scans sooner rather than later and find out what is going on. Will see what happens but like you say we did give it the best shot and still wouldn’t change our choices. And certainly not defeated we’ll crack on and hopefully get him sorted 👍 x

User

Posted 09 May 2023 at 12:15

Originally Posted by: Online Community Member

Probably need to be seeing an oncologist now rather than a surgeon.
An early scan would be great to rule out distant spread, you should then have the option for salvage RT asap.

I suspect we’ll get referred at the appointment this week. We’ll need to rule out the original suspected bone met but that came back negative on the initial PSMA pet scan 🤷🏻‍♀️. I was going to book a scan before next week’s appointment in London but he’s said no for now. Will get 2 different opinions over the next week and hopefully a quick referral to oncology for another one 👍 x

User

Posted 09 May 2023 at 12:18

Originally Posted by: Online Community Member

Sorry to read this, Elaine. Hopefully, everything gets found and sorted.

Ivan

Thanks Ivan.

We always knew it was a long shot to stay in remission for any significant time, but he’s had a good 18 months of hope and positivity which he would never have had had he not gone for the op….so no regrets just onwards and upwards 👍 It’ll be all the waiting again that will drive me mad 🤦🏻‍♀️😥

Hope all still really good with you x

User

Posted 09 May 2023 at 12:20

Originally Posted by: Online Community Member

Heart out to you both Elaine.. Fingers crossed that you have answers and strategy as soon as.

Jamie

Thanks Jamie. Let’s hope so, will be better when we know what’s going on…I hope 🤦🏻‍♀️

Hope you’re doing well x

User

Posted 12 Jun 2023 at 12:52

Hi All,

Just another update.

Since Rob’s last PSA result we had appointments with urology both local and his surgeon in London. No one seemed overly concerned with his numbers which I questioned because of the 3 consecutive rises and the last one being quite significant.

We were always told by his surgeon that more treatment would be likely so it was just a question of when. I think everyone happy to wait for 0.2 atleast. I wouldn’t want rob having any further treatment without PSMA pet scan either so we may have to wait even longer.

Local urology said they would see us again in 3 months, I wasn’t really happy with that though and emailed him to request an immediate referral to oncology which he has actioned so just have to wait for an appointment now.

So…..latest PSA 6 weeks on from the last one is 0.164. So another rise but not as much as I was expecting, so even more confused….although feel a bit better that it has slowed slightly.

Any advice would be greatly appreciated.

We also have a dilemma in that we’re due to leave for holiday on 27th June and we were planning on being away for around 6-8 weeks. Should we just forget about the cancer for now (easier said than done of course) and go and have our holiday, not go at all or cut it short to get back for another PSA at our normal 6 week interval?

Last 4 PSA tests 6 weekly

0.029, 0.044, 0.115, 0.164

Really hope everyone is keeping well.

User

Posted 12 Jun 2023 at 13:20

Go on holiday.

Dave

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

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?

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

User

Posted 08 Jul 2023 at 10:35

Originally Posted by: Online Community Member

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

Thanks Peter, yes we feel we have done the right thing and that’s always been important to us…we could have had huge regrets not coming home.

Yes I set up a just giving page, it’s been quite overwhelming all the support I’ve had. Really pleased to be able to be giving a little something back 👍

User

Posted 08 Jul 2023 at 10:39

Originally Posted by: Online Community Member

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

Rob’s first PSMA was done privately and we heard back within a few days. I’m assuming we may wait longer this time and it will possibly go to MDT first to discuss? It still might not show anything with his psa being low.

I asked about the scan and the best they could give me was F18, same on all the paperwork so unfortunately have nothing more specific.

Will update when we find out. Thanks Chiris

User

Posted 08 Jul 2023 at 10:47

Originally Posted by: Online Community Member

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.

🤣 made me laugh Dave. Never been to Scarborough though so still don’t know what I’m missing….maybe try there instead ha!

We had intended to book a scan on our return if we hadn’t heard anything anyway, so yes like you say we have grabbed this opportunity and just see what happens 🤞🏼

User

Posted 24 Jul 2023 at 22:57

Next update.

Rob’s latest PSA 0.221 so we seem to have a doubling time of 3 months and official BCR. I understand this puts him more at risk with a quicker doubling time. Just really glad we’ve already had PSMA pet scan (although I know it might not show us anything). We have appointment on Wednesday to get the results and see what next.

My head is spinning a bit with all the possibilities but trying not to worry too much and stay positive (easier said than done at times though).

Hope everyone is ok and doing well xx

User

Posted 25 Jul 2023 at 17:30

Hi Elaine,

Sorry it is now official BCR. I totally understand why your head is spinning. All sorts of possibilities go through our minds! Hopefully you will start to see a way forward after next week’s appointment.

Ido4

User

Posted 26 Jul 2023 at 08:39

Thanks Ido4

Appointment is today so will see what happens. I’m assuming regardless of what the situation is HT will be starting again at some point, I suppose just hoping RT will be offered because they’ll feel we’re still on a curative pathway 🤞🏼

Hope you’re doing well, great to see you still have an undetectable PSA and long may it continue 👍

User

Posted 27 Jul 2023 at 11:58

So we had appointment yesterday with oncologist. PSMA pet didn’t show anything as possibly expected with low numbers. It has given some peace of mind that there are no big tumours around, and it’s the second scan that it didn’t show in his pelvic bone too.

She recommended that Rob has SRT (to the prostate bed and pelvic lymph nodes) starting in about 3 months time and 2 years of HT. It’s such a difficult decision as we have no idea where the cancer might be (so could be unnecessary treatment) but we worry if we wait for it to show it may have spread further in that time.

Not looking forward to hormones again or the prospect of RT, but to be honest we were very grateful that we had options for treatment and still on a curative pathway.

We still have no regrets of the path we have taken to this point and still think the surgery was completely worth it. The help and support we have had from Robs surgeon is incalculable to us and we feel very lucky to have found him.

Rob had hormone treatment initially of course (prostap 3), he has been prescribed this time decapeptyl. I think I would feel happier sticking with what we already know as he was ok on it. Are the 2 exactly the same does anyone know or could side effects etc vary between them?

So here we go again. Yes I’m worried and wish he didn’t have to go through this again but he’s feeling ok and we’re both trying to think positively. We know we could have had much worse news yesterday xx

User

Posted 27 Jul 2023 at 12:35

Hi Elaine sorry you have to begin treatment again but some good news with the scans I had 2 years of decapeptyl along with radiotherapy and found it all tolerable and worked all the way through with minimal side effects I was told decapeptyl was the best treatment available good luck with your treatment plan gaz 👍

User

Posted 27 Jul 2023 at 15:25

Elaine, hope it works out well for you both.

Thanks Chris

User

Posted 27 Jul 2023 at 15:39

Hi Elaine,

Obviously not good that you guys have to go through this nonsense, but im picking up a positive as possible vibe from your post. Hang on to that as best you can Mrs.

Wishing you the warmest,

Jamie.

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