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Inconclusive PSMA scan

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User
Posted 15 Jun 2022 at 14:47

Just as an update on my progress. My post prostatectomy PSA came back as 0.28. I suppose this is not remarkable as histology showed a positive margin and 1 out of 36 the nodes removed was positive. I had a PSMA scan on 20th May. I was expecting this to be a Gallium 68 tracer but discovered it was in fact F18. That immediately resulted in a call to Dr Google. Some studies suggest it may be more successful than Gallium at PSA less than 0.5 while other studies suggests generally less successful at picking up PCa than Gallium but much better than Choline. I was wondering whether anyone has had any experience with F18.

I have been getting increasingly concerned about the lack of information on my scan results. Three calls to the Urologist’s secretary didn’t get me anywhere but I finally received a call from the specialist nurse today. My scan results were discussed at the MDT last Friday (which is where the bottleneck lies). She wasn’t at the MDT but was able to access the notes. The scan results seem to me to be a bit inconclusive. There was, surprisingly no indications in the prostate bed but more worryingly an indeterminate indication on the right Iliac bone. This is going to need an MRI scan. I’m still waiting for notification of an appointment with the Urologist but I am guessing I am going to me monitored for a period and the PSMA scan repeated. Any thoughts? Chris

Edited by member 27 Jul 2022 at 16:47  | Reason: Tracer changed to F18

User
Posted 15 Jun 2022 at 20:12

Chris J and ColwickChris. Thanks for your input. I have read both your profiles. I can certainly see the similarity to Chris J, although at diagnosis my PCa was readily detectable. Despite everything it is good to see you are still here and getting on with life.

ColwickChris, I hope you get some positive information from your forthcoming scan.

With the amount of Chris's on this site I do wonder whether the name is an omen when it comes to PCa.

Thanks

Chris

User
Posted 16 Sep 2022 at 14:22

Best of luck Chris.  Fingers crossed for you. 

Just to compare notes I had an RP at the end of April and also had persistent PSA of 0.6.   Prior to my RP, in April I had a PSMA scan which was clear.  However my post RP PSMA scan in August showed two pelvic nodes and a potential hilar node (chest area).  Had a biopsy yesterday on the hilar node to double check it.  Not terribly optimistic but maybe I deserve a break,  don't we all. All of the areas highlighted were about half a centimetre which highlights how sensitive the scans are and that in my case that new lymph nodes showed up on the scans after 4-5 months. 

User
Posted 16 Sep 2022 at 15:57

Thanks Jellies. We seem to be treading a similar path. Your first PSA result must have been a shock after a good histology result. I do hope you get the break you deserve.

User
Posted 29 Mar 2023 at 14:50

Time for an update. Five months post SRT and five weeks post Bicalutamide. Latest PSA came back <0.01. This  looks promising but I'm not counting my chickens just yet. Onco reckons most of the Bical will be out of my system now but libido still seems pretty flat. Bowel and bladder function issues are still improving but neither is quite back to where it was pre SRT. Gynecomastia is still persistent and probably a little worse since stopping Tamoxifen. Right leg lymphoedema remains about the same but Onco thinks it should improve in time. No lymph nodes were specifically targeted so they have a chance of recovering from the effects of scatter radiation. That sounds more promising than the gloomy prognosis form the lymphoedema nurse. I think I can rest easy for another three months.

User
Posted 15 Jun 2022 at 14:47

Just as an update on my progress. My post prostatectomy PSA came back as 0.28. I suppose this is not remarkable as histology showed a positive margin and 1 out of 36 the nodes removed was positive. I had a PSMA scan on 20th May. I was expecting this to be a Gallium 68 tracer but discovered it was in fact F18. That immediately resulted in a call to Dr Google. Some studies suggest it may be more successful than Gallium at PSA less than 0.5 while other studies suggests generally less successful at picking up PCa than Gallium but much better than Choline. I was wondering whether anyone has had any experience with F18.

I have been getting increasingly concerned about the lack of information on my scan results. Three calls to the Urologist’s secretary didn’t get me anywhere but I finally received a call from the specialist nurse today. My scan results were discussed at the MDT last Friday (which is where the bottleneck lies). She wasn’t at the MDT but was able to access the notes. The scan results seem to me to be a bit inconclusive. There was, surprisingly no indications in the prostate bed but more worryingly an indeterminate indication on the right Iliac bone. This is going to need an MRI scan. I’m still waiting for notification of an appointment with the Urologist but I am guessing I am going to me monitored for a period and the PSMA scan repeated. Any thoughts? Chris

Edited by member 27 Jul 2022 at 16:47  | Reason: Tracer changed to F18

User
Posted 15 Jun 2022 at 15:37
Hi Chris maybe read my profile notes. Very similar situation to you. Very poor post op results and 4 lymphs cancerous. Declined SRT as deemed already spread. I had a choline and gallium PET but both inconclusive and nothing in the prostate area. I decided to live life to the full and bury my head in the sand. Multiple bone and CT scans showing nothing until 2 yrs ago ( 5 yrs after surgery ). I’d let my psa go over 1000. Then it all showed up. Mets everywhere and RT needed to spine and ribs. I’m 18 months into HT at last and obviously incurable but I’m responding well so far. I’ve just turned 55

Best wishes

User
Posted 16 Jun 2022 at 01:26

Fluciclovine is also referred to as Axumin, FACBC or 18F - our oncologist was involved in trials for it following some fantastic results in Italy and it is now used at our hospital which is one of the centres of excellence for uro-oncology.

18F and Ga68 are both good at spotting cancer clusters at very low PSA readings in recurrence situations. Ga68 is slightly better below 0.5 in trials but 18F is easier to make and transport so there is less risk of appointments being cancelled at short notice because the tracer hasn't arrived in one piece. However, 18F (axumin) is not a PSMA scan.

This thread might be interesting to you https://community.prostatecanceruk.org/posts/t27344-F18-or-gallium-68

 

 

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

User
Posted 22 Jun 2022 at 08:23

Fluciclovine is not PSMA. It is less specific as compared to PSMA although possibly as sensitive

User
Posted 08 Jul 2022 at 17:23

Just by way of an update I met with the Urologist today to get the results of the pelvic MRI scan. The scan wasn't able to pick up the indication on the right Iliac bone (pelvis) which was originally detected by the F18 scan. Nothing else was detected thankfully, including in the prostate bed. I mentioned this was odd as the histology indicated positive margins on the prostate. He told me that 40% of histology results on the prostate return false positives, so there may well be nothing there. This is something I hadn't heard of. Anyway, something in there is producing a PSA of 0.28 so I am being referred to an oncologist. The good news is no need for any HT for now at least. I'll carry on enjoying my testosterone while I can and keep pushing for a Cialis prescription. Chris 

User
Posted 08 Jul 2022 at 21:05

That's great news Chris. Best of luck to you

User
Posted 09 Jul 2022 at 10:52

Good news for now Chris. Fingers crossed no treatment required for a long time 👍

User
Posted 27 Jul 2022 at 18:01

Chris, I think you already know how my "educated guess" worked out for salvage RT. Lyn did say in my thread that 1007 and Gallium had similar results. Just reading one report said the 1007 could pick up 1mm tumors, mine is apparently 8mm , my PSA was 1.6 when scanned. I made a call to my scan centre and they quickly gave me details of the tracer used.

I was surprised when my onco said they were still using the educated guess approach. I didn't have HT because my team thought it would be to toxic. In a few months I should have some idea whether all my PSA is being produced by the lymph node tumor.

Hope you get a suitable plan sorted.

Thanks Chris 

User
Posted 10 Aug 2022 at 22:47
Some nen have adjuvant RT almost immediately after RT so it isn't a requirement to have a 12 month gap. However, it may be your oncologist's preference.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Aug 2022 at 23:17

 Chris, If I am reading the profile of Lexi26 correctly, her husband had ART three months after surgery.

Thanks Chris 

 

User
Posted 16 Sep 2022 at 12:06

Hi, I hope everyone out there is doing as well as can be expected. Just by way of an update I have just started 33 fractions of RT to the prostate bed. The PSMA scan back in May and the subsequent MRI scan were both inconclusive, so this is just a best guess at where the problem lies. It does seem to be a common scenario when it comes to SRT. It maybe all a complete waste of time if the PCa is lurking elsewhere. I’ll never know for sure but fingers crossed.

I’ve been on 150 mg Bicalutamide for just over four weeks. So far the only apparent side effects are slight tiredness and indigestion but it is still probably early days for side effects. The Onco has indicated I’ll be on it for six months with no plan to switch to Zoladex. He also seemed happy for me to start RT straight away without waiting 3 months for the tumour shrinking effects of the Bical to kick in. I can only guess the logic behind that is the tumour(s) is/are already small in that they are undetectable from scans. Chris

User
Posted 16 Sep 2022 at 16:17

Good luck with that Chris.  If it is somewhere else there is a chance of RT on that area from what I read.  I read of someone who had treatment on higher up lymph nodes after prostate RT.  The oncologist said a risk in the past was damaging the intestines, improved RT focus nowadays can avoid that.  Let's hope your current treatment catches it though.

User
Posted 17 Sep 2022 at 12:30

Best of luck with the treatment Chris 

User
Posted 19 Sep 2022 at 08:11

Best of luck Chris with your treatment. Everything crossed for you x

User
Posted 19 Sep 2022 at 16:00
Chris I did an 11 month stint on 150mg Bicalutamide per day with very little issues at all. I was prescribed Tamoxifen once weekly from the offset and never had any breast issues nor tenderness at all. Good luck 🤞
User
Posted 20 Sep 2022 at 09:59

20mg Tamoxifen tablets are generic and dirt cheap. Never heard of anyone being refused in last 4 years (except on medical grounds, typically if you're at risk of cardio issues or DVT), but most often you do need to ask for it.

The other tablet sizes are massively more expensive.

I was prescribed 20mg/day, but told to start with twice a week and adjust to symptoms. It's quite slow acting.

It is liver toxic for some people, and my liver wasn't happy with more that about 40mg/week. It is worth getting a liver function test done when you've been on it for 3-4 months.

User
Posted 22 Sep 2022 at 11:59

Jellies, good news on the biopsy results. Hopefully everything is confined to the pelvic area. It's easy to get yourself tied in knots with the "what ifs" but best just to try to put your hilar out of your mind now.

So far, five weeks on Bical hasn't produced any significant side effects for me. I'm arranging to get a Tamoxifen prescription from my GP. I understand that whilst it's used to treat gynaecomastia in men, it's not actually licensed for it. However it's approved in the NICE guidelines for men on long term Bical (20 mg per week), so hopefully there shouldn't be any problem getting a prescription

User
Posted 28 Oct 2022 at 22:14

Chris, I had already been fitted with a suprapubic catheter before salvage RT so judging incontinence is difficult.

If you ever start passing lots of blood clots and debris get help from someone who understands severe radiation cystitis, stage 4 radiation cystitis it is rare, which means it is not always recognised. 

My bowels were a bit iffy for quite a while but when they eventually settled down they were better than pre surgery.

Hope things start to improve, keep doing the PFEs.

Thanks Chris 

User
Posted 29 Oct 2022 at 10:03

Hi Chris, I have found that my level of urine control deteriorated during SRT. I don’t wear a pad every day but do have the occasional accident. I find there are times I can hold a full bladder without a problem and then can suddenly leak at other times when my bladder is almost empty. I wear a pad when I’m golfing or going out. I saw a urologist who offered to fit an AUS but I decided to leave it for now. I also took solifenacin for a while which helped but when I read that this drug is linked with dementia I stopped taking it! 
Sorry it’s such a long reply. All the best.

Ido4

User
Posted 29 Oct 2022 at 13:00

Thanks Ido4. Its a big decision having an AUS fitted. It's early days and I'm hoping the continence improves from two pads a day. The odd dribble I can live with.

Thanks for the heads up on the Solifenacin. I'm not going to stay on that any longer than I have to.

Chris

User
Posted 04 Nov 2022 at 23:13

Enjoy your time away Chris and your change of scenery and hope you get through to someone next week who can help. Keep the limb moving if you can.  Self massage is great (even better when an expert shows you what to do rather than YouTube), but currently you don’t have any other options! I hope the pain subsides, I take ibuprofen when mine flares which helps with the inflammation. X

User
Posted 29 Mar 2023 at 15:48

This all sounds really good Chris.....best wishes for continued improvement 

User
Posted 29 Mar 2023 at 17:45
Great news Chris, really pleased to hear and long may it continue x
User
Posted 28 Jun 2023 at 20:27

Well, it’s now 8 months since I finished SRT to the prostate bed and 4 months since I finished Bicalutamide. I’ve just had my latest PSA result which remains at less than 0.01. That’s a big relief because the plan to target the prostate bed was an educated guess. The F18 and MRI scans failed to show up any indications. The post RP histology showed up a positive margin so it was always pretty likely there were remnants in the prostate bed. However one of the lymph nodes removed also showed up positive, so there was also a possibility there could be mets further afield. Thankfully not it would seem.

As for side effects, the gynecomastia is no longer tender but I have a lingering hard lump under each nipple. My bowels are still rather loose which can be a nuisance at times. Somethings to mention to the Onco at the next appointment. I feel like I’ve finally come to the end of a very long chapter in my prostrate story or am I speaking too soon? Here’s hoping for a long sabbatical before any chapter 2.

User
Posted 28 Jun 2023 at 20:47

Wow Chris, that is fantastic news. I am thrilled for you. 🍾🎉

User
Posted 28 Jun 2023 at 23:54

Fantastic news Chris. All the best

Jim

User
Posted 29 Jun 2023 at 01:11

Chris, great news,long may it continue.

Thanks Chris.

User
Posted 29 Jun 2023 at 18:48

Well done, Chris Bromsgrove,

You've certainly been through the mill, but hopefully, you've come out the other side.

Take good care of yourself.

JedSee.

User
Posted 29 Jun 2023 at 19:18
🎉🎉🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jul 2023 at 07:41
Great news Chris and long may it continue x
User
Posted 01 Jul 2023 at 08:40

Really pleased for you Chris, that’s great news!

Derek

Edited by member 01 Jul 2023 at 08:47  | Reason: Not specified

User
Posted 01 Jul 2023 at 20:14

Less than 0.01 is a dream result. Great news!

Show Most Thanked Posts
User
Posted 15 Jun 2022 at 15:37
Hi Chris maybe read my profile notes. Very similar situation to you. Very poor post op results and 4 lymphs cancerous. Declined SRT as deemed already spread. I had a choline and gallium PET but both inconclusive and nothing in the prostate area. I decided to live life to the full and bury my head in the sand. Multiple bone and CT scans showing nothing until 2 yrs ago ( 5 yrs after surgery ). I’d let my psa go over 1000. Then it all showed up. Mets everywhere and RT needed to spine and ribs. I’m 18 months into HT at last and obviously incurable but I’m responding well so far. I’ve just turned 55

Best wishes

User
Posted 15 Jun 2022 at 16:28

Chris, I have got my F18 scan 17.00 on Friday, my PSA was 1.4 at the last test a few weeks ago. I will let you know when I get the results.  I had salvage RT based on the " educated guess" and although the PSA did drop for a while, it has crept back up.

Thanks Chris 

 

User
Posted 15 Jun 2022 at 16:56

As regards scans there may have been some advances since this information was published but listed in this article is how scans for PCa compared. I think fairly small numbers were used and some scans were better than others in certain respects. I was going to just copy and paste but there is a lot of info including tables if you scroll on. https://www.prostatecancer.news/2016/12/pet-scans-for-prostate-cancer.html

 

Edited by member 15 Jun 2022 at 16:57  | Reason: to highlight link

Barry
User
Posted 15 Jun 2022 at 20:12

Chris J and ColwickChris. Thanks for your input. I have read both your profiles. I can certainly see the similarity to Chris J, although at diagnosis my PCa was readily detectable. Despite everything it is good to see you are still here and getting on with life.

ColwickChris, I hope you get some positive information from your forthcoming scan.

With the amount of Chris's on this site I do wonder whether the name is an omen when it comes to PCa.

Thanks

Chris

User
Posted 15 Jun 2022 at 20:49

Barry, Thank you for the link. It makes very interesting reading for my situation. When I mentioned Fluciclovine earlier, that may not be the indicator that was actually used. I was told over the phone it was F-18 and that is the first thing a Google search turned up but as I can see from the study the F-18 designator applies to a number of different indicators. Let's hope it was F18-PSMA-1007.

It does seem there is a case for zapping the prostate bed based on an educated guess as well as waiting for a clearer PSMA scan. In the case of ColwickChris the educated guess didn't work and in the case of Chris J the scans were not helpful.

Well, I'm certainly wiser although I'm not sure anything is clearer 😊.

Chris

User
Posted 16 Jun 2022 at 01:26

Fluciclovine is also referred to as Axumin, FACBC or 18F - our oncologist was involved in trials for it following some fantastic results in Italy and it is now used at our hospital which is one of the centres of excellence for uro-oncology.

18F and Ga68 are both good at spotting cancer clusters at very low PSA readings in recurrence situations. Ga68 is slightly better below 0.5 in trials but 18F is easier to make and transport so there is less risk of appointments being cancelled at short notice because the tracer hasn't arrived in one piece. However, 18F (axumin) is not a PSMA scan.

This thread might be interesting to you https://community.prostatecanceruk.org/posts/t27344-F18-or-gallium-68

 

 

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

User
Posted 16 Jun 2022 at 11:59

Thanks Lyn, the link to the previous thread is helpful. It's also encouraging to note how quickly imaging technology is developing. When I eventually get an appointment I'll find out which F18 tracer was actually used. Chris 

User
Posted 22 Jun 2022 at 08:23

Fluciclovine is not PSMA. It is less specific as compared to PSMA although possibly as sensitive

User
Posted 08 Jul 2022 at 17:23

Just by way of an update I met with the Urologist today to get the results of the pelvic MRI scan. The scan wasn't able to pick up the indication on the right Iliac bone (pelvis) which was originally detected by the F18 scan. Nothing else was detected thankfully, including in the prostate bed. I mentioned this was odd as the histology indicated positive margins on the prostate. He told me that 40% of histology results on the prostate return false positives, so there may well be nothing there. This is something I hadn't heard of. Anyway, something in there is producing a PSA of 0.28 so I am being referred to an oncologist. The good news is no need for any HT for now at least. I'll carry on enjoying my testosterone while I can and keep pushing for a Cialis prescription. Chris 

User
Posted 08 Jul 2022 at 21:05

That's great news Chris. Best of luck to you

User
Posted 09 Jul 2022 at 10:52

Good news for now Chris. Fingers crossed no treatment required for a long time 👍

User
Posted 27 Jul 2022 at 17:15

I had a further and somewhat unexpected follow up meeting with the surgeon today (this time back in the NHS). It seems he has been giving further thought to the scan results (or the lack of any real results to be precise). This was good timing because my PSA results had just come in. It has now increased from 0.28 on 4/4/22 to 0.6 (effectively doubling in three months. He believes the occurrence might be from another lymph node rather than the prostate bed. The indeterminate indication on the right iliac bone, picked up on the F18 scan, he thinks is spurious.

I mentioned about another scan, say possibly with Gallium but from what he told me, isotopes were being rationed at the moment due to supply issues from Europe (he wasn't very happy about it and blamed Brexit). He thinks the best approach is for RT over the pelvic area. It seems all hope for a focal treatment have now gone and I'll just have to take the collateral damage on the chin. Interestingly, he seems to want to hold HT in reserve for now but he did point out that will be for the Oncologist to decide (appointment booked for 10/08/22). I would be interested to hear for situations of 'educated guess type of radiotherapy' whether others have been spared HT. Chris

User
Posted 27 Jul 2022 at 18:01

Chris, I think you already know how my "educated guess" worked out for salvage RT. Lyn did say in my thread that 1007 and Gallium had similar results. Just reading one report said the 1007 could pick up 1mm tumors, mine is apparently 8mm , my PSA was 1.6 when scanned. I made a call to my scan centre and they quickly gave me details of the tracer used.

I was surprised when my onco said they were still using the educated guess approach. I didn't have HT because my team thought it would be to toxic. In a few months I should have some idea whether all my PSA is being produced by the lymph node tumor.

Hope you get a suitable plan sorted.

Thanks Chris 

User
Posted 27 Jul 2022 at 19:06

I have been following your progress, Chris and I do hope the focal treatment does the job for you. Having had 36 nodes removed during surgery (one of which was positive), I had hoped that the blanket approach would have caught all the potentially cancerous ones. He did point out that he can only remove the actual nodes he can see and some are apparently very difficult to spot. Chris

User
Posted 10 Aug 2022 at 20:52

I had my Oncologist  appointment today. He was very thorough in his explanation of my options, of which there were three. Option 3 (Lifetime HT) he ruled out straight away. Option 2 was watch and wait and repeat the PSMA scan. Option 1 standard HT/SRT to prostate bed based on the “educated guess” probability that is where the PCa is most likely to be. He didn’t rule out lymph nodes and bone mets but he says these usually pick up on PSMA scans. The indication on the right Iliac bone is being treated as spurious for now. At the rate my PSA is climbing (doubled to 0.61 in 3 months) I’m leaning towards suck it and see option 1 for HT/SRT and hoping for the best. He was undecided on what the HT would be administered but radiotherapy would be 33 fractions with an overall dose of 66 Gy. Is it correct that radiotherapy on the surgical area should not take place for twelve months following surgery?

 

User
Posted 10 Aug 2022 at 22:47
Some nen have adjuvant RT almost immediately after RT so it isn't a requirement to have a 12 month gap. However, it may be your oncologist's preference.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Aug 2022 at 23:17

 Chris, If I am reading the profile of Lexi26 correctly, her husband had ART three months after surgery.

Thanks Chris 

 

User
Posted 16 Sep 2022 at 12:06

Hi, I hope everyone out there is doing as well as can be expected. Just by way of an update I have just started 33 fractions of RT to the prostate bed. The PSMA scan back in May and the subsequent MRI scan were both inconclusive, so this is just a best guess at where the problem lies. It does seem to be a common scenario when it comes to SRT. It maybe all a complete waste of time if the PCa is lurking elsewhere. I’ll never know for sure but fingers crossed.

I’ve been on 150 mg Bicalutamide for just over four weeks. So far the only apparent side effects are slight tiredness and indigestion but it is still probably early days for side effects. The Onco has indicated I’ll be on it for six months with no plan to switch to Zoladex. He also seemed happy for me to start RT straight away without waiting 3 months for the tumour shrinking effects of the Bical to kick in. I can only guess the logic behind that is the tumour(s) is/are already small in that they are undetectable from scans. Chris

User
Posted 16 Sep 2022 at 14:22

Best of luck Chris.  Fingers crossed for you. 

Just to compare notes I had an RP at the end of April and also had persistent PSA of 0.6.   Prior to my RP, in April I had a PSMA scan which was clear.  However my post RP PSMA scan in August showed two pelvic nodes and a potential hilar node (chest area).  Had a biopsy yesterday on the hilar node to double check it.  Not terribly optimistic but maybe I deserve a break,  don't we all. All of the areas highlighted were about half a centimetre which highlights how sensitive the scans are and that in my case that new lymph nodes showed up on the scans after 4-5 months. 

User
Posted 16 Sep 2022 at 15:57

Thanks Jellies. We seem to be treading a similar path. Your first PSA result must have been a shock after a good histology result. I do hope you get the break you deserve.

User
Posted 16 Sep 2022 at 16:17

Good luck with that Chris.  If it is somewhere else there is a chance of RT on that area from what I read.  I read of someone who had treatment on higher up lymph nodes after prostate RT.  The oncologist said a risk in the past was damaging the intestines, improved RT focus nowadays can avoid that.  Let's hope your current treatment catches it though.

User
Posted 17 Sep 2022 at 12:30

Best of luck with the treatment Chris 

User
Posted 19 Sep 2022 at 08:11

Best of luck Chris with your treatment. Everything crossed for you x

User
Posted 19 Sep 2022 at 10:52

Originally Posted by: Online Community Member
I’ve been on 150 mg Bicalutamide for just over four weeks. So far the only apparent side effects are slight tiredness and indigestion but it is still probably early days for side effects.

You might want to ask about getting Tamoxifen too, to prevent the Bicalutamide causing breast gland growth and painfully sensitive nipples, which can happen if you're on it more than a month (usually at around 2-3 months).

User
Posted 19 Sep 2022 at 11:57

Thanks Andy. I was wondering about Tamoxifen. The Onco just said if you get tender breasts we will give you something for it. From what I have read it is more likely a when than an if.  It would seem to make sense to be proactive about it rather than reactive. I'll contact my GP as they did the prescription for the Bical. Chris 

User
Posted 19 Sep 2022 at 16:00
Chris I did an 11 month stint on 150mg Bicalutamide per day with very little issues at all. I was prescribed Tamoxifen once weekly from the offset and never had any breast issues nor tenderness at all. Good luck 🤞
User
Posted 19 Sep 2022 at 19:22

Our CCG (now called an ICB) does not permit tamoxifen or RT to the breast buds to prevent breast growth in men on HT. Another postcode lottery.

Edited by member 19 Sep 2022 at 19:23  | Reason: Not specified

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

User
Posted 20 Sep 2022 at 09:41

Thanks for the heads up Lyn. I'll need to find out whether my post code is a winning ticket.

User
Posted 20 Sep 2022 at 09:59

20mg Tamoxifen tablets are generic and dirt cheap. Never heard of anyone being refused in last 4 years (except on medical grounds, typically if you're at risk of cardio issues or DVT), but most often you do need to ask for it.

The other tablet sizes are massively more expensive.

I was prescribed 20mg/day, but told to start with twice a week and adjust to symptoms. It's quite slow acting.

It is liver toxic for some people, and my liver wasn't happy with more that about 40mg/week. It is worth getting a liver function test done when you've been on it for 3-4 months.

User
Posted 21 Sep 2022 at 22:54

My hilar (chest) node biopsy was negative.  Phew.  So it looks like the PSMA scan was a false positive - of course the biopsy could have missed the spot but no point dwelling on that.  

Net result is I came out of the med onco meeting with a prescription for Bical and Decapeptyl and good to read everyone's experiences with these drugs.  Will be reviewed in a month to see if they add addional treatments.  To be followed by pelvic RT - presumably in a few months. 

Best all. 

User
Posted 22 Sep 2022 at 11:59

Jellies, good news on the biopsy results. Hopefully everything is confined to the pelvic area. It's easy to get yourself tied in knots with the "what ifs" but best just to try to put your hilar out of your mind now.

So far, five weeks on Bical hasn't produced any significant side effects for me. I'm arranging to get a Tamoxifen prescription from my GP. I understand that whilst it's used to treat gynaecomastia in men, it's not actually licensed for it. However it's approved in the NICE guidelines for men on long term Bical (20 mg per week), so hopefully there shouldn't be any problem getting a prescription

User
Posted 22 Sep 2022 at 15:36

Thanks Chris,

I totally agree, take the positives and move on.  For treatment I take Bical for 2 weeks, then the Decapeptyl injection, then Bical for another two weeks.  After that I think I am done with the Bical as it is just to counteract testosterone flare.  Good to know you had no serious side effects on it. 

User
Posted 28 Oct 2022 at 21:53

Time for an update. My 33 sessions of SRT to the prostate bed are finally complete. The radiotherapy team have been brilliant which has made the process so much more bearable. It’s now the waiting game to see what happens (or doesn’t happen as the case may be). The side effects have been fairly varied. Bladder urgency started first but Solifenacin eased the symptoms. Bowel urgency followed and caused me a few accidents until I became better able to predict what was going to happen and when. Radiation Proctitis has been a pain in the arse but that has been improving with Proctosedyl suppositories. Fatigue/tiredness have been tolerable and so far not a single hot flush from the Bical. My main concern is my continence started to go rapidly down hill in the final week of RT. Just when I thought I had it cracked it I’m back to wearing pads during the day. I would love to hear other people’s experiences of this. Did you eventually get back to where you were before RT?

The other peculiarity is suddenly starting with Lymphoedema in my right leg. I did get a mild symptoms in my right leg post RP (34 lymph nodes removed) but has the RT acted as some sort of trigger? The RT team tell me that zapping just the prostate bed shouldn’t cause Lymphoedema. The symptoms are mild but it is limiting how far I can walk. I’m trying to get hold of my CNS to discuss it. In the meantime I’m going to have a go at some self-massage techniques to see if it helps. Again, would love to hear other people’s experiences.

User
Posted 28 Oct 2022 at 22:14

Chris, I had already been fitted with a suprapubic catheter before salvage RT so judging incontinence is difficult.

If you ever start passing lots of blood clots and debris get help from someone who understands severe radiation cystitis, stage 4 radiation cystitis it is rare, which means it is not always recognised. 

My bowels were a bit iffy for quite a while but when they eventually settled down they were better than pre surgery.

Hope things start to improve, keep doing the PFEs.

Thanks Chris 

User
Posted 29 Oct 2022 at 10:03

Hi Chris, I have found that my level of urine control deteriorated during SRT. I don’t wear a pad every day but do have the occasional accident. I find there are times I can hold a full bladder without a problem and then can suddenly leak at other times when my bladder is almost empty. I wear a pad when I’m golfing or going out. I saw a urologist who offered to fit an AUS but I decided to leave it for now. I also took solifenacin for a while which helped but when I read that this drug is linked with dementia I stopped taking it! 
Sorry it’s such a long reply. All the best.

Ido4

User
Posted 29 Oct 2022 at 13:00

Thanks Ido4. Its a big decision having an AUS fitted. It's early days and I'm hoping the continence improves from two pads a day. The odd dribble I can live with.

Thanks for the heads up on the Solifenacin. I'm not going to stay on that any longer than I have to.

Chris

User
Posted 03 Nov 2022 at 06:47
I can’t offer any advice re incontinence, but sending you best wishes Chris and hope the continence improves and lymphodema. I suffer from lymphodema in my arm following radical surgery and rt. there should be a lymphodema service attached to,your local hospital and your GP should refer you for a lymphatic drainage massage and possibly a compression garment which will help keep the swelling down and ease the pain. It really is a pain, but hopefully you will get some relief. Keep us updated with your progress x
User
Posted 03 Nov 2022 at 07:59

Thanks for your kind words Jayney. I'm struggling to get hold of the clinical nurse specialist (not helped by being away in a bad phone signal area). Same with my GP. I can't believe how difficult it is just to get Tamoxifen prescribed for my sore nipples. However being away for a fews days is at least a tonic after the RT sessions. I'll have another try when I'm back. In the meantime I'm having a go at some self massage watching a YouTube demo video. I think it's helping. I'll keep you posted.

User
Posted 04 Nov 2022 at 23:13

Enjoy your time away Chris and your change of scenery and hope you get through to someone next week who can help. Keep the limb moving if you can.  Self massage is great (even better when an expert shows you what to do rather than YouTube), but currently you don’t have any other options! I hope the pain subsides, I take ibuprofen when mine flares which helps with the inflammation. X

User
Posted 29 Mar 2023 at 14:50

Time for an update. Five months post SRT and five weeks post Bicalutamide. Latest PSA came back <0.01. This  looks promising but I'm not counting my chickens just yet. Onco reckons most of the Bical will be out of my system now but libido still seems pretty flat. Bowel and bladder function issues are still improving but neither is quite back to where it was pre SRT. Gynecomastia is still persistent and probably a little worse since stopping Tamoxifen. Right leg lymphoedema remains about the same but Onco thinks it should improve in time. No lymph nodes were specifically targeted so they have a chance of recovering from the effects of scatter radiation. That sounds more promising than the gloomy prognosis form the lymphoedema nurse. I think I can rest easy for another three months.

User
Posted 29 Mar 2023 at 15:02

My understanding of the F18 PSMA PET scan is that is very good at NOT finding cancer - it's accuracy is 90-100% and is far better than the other scans (bone, MRI, CT). So the probability of having any PCa is very low from the scan.  We can hope,

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:06
Glad you seem to be recovering - I had very few side effects from my RT - just the usual urinary ones and they cleared up with a fortnight. Newer LINACs and more precise kit I suppose ( I went to Singleton, in Swansea). It's taken 8 months post HT for my hormones to come back and probably nearer 12 to say I'm now in the normal range and libido is "OK". ED still a problem but sortable. I try and keep my blog up to date. All the best

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2023 at 15:48

This all sounds really good Chris.....best wishes for continued improvement 

User
Posted 29 Mar 2023 at 17:45
Great news Chris, really pleased to hear and long may it continue x
User
Posted 29 Mar 2023 at 18:19

Thanks Steve. My waterworks had already been given hammering from the RP so they weren't really fighting fit from the off. At least things are still going in the right direction.

User
Posted 28 Jun 2023 at 20:27

Well, it’s now 8 months since I finished SRT to the prostate bed and 4 months since I finished Bicalutamide. I’ve just had my latest PSA result which remains at less than 0.01. That’s a big relief because the plan to target the prostate bed was an educated guess. The F18 and MRI scans failed to show up any indications. The post RP histology showed up a positive margin so it was always pretty likely there were remnants in the prostate bed. However one of the lymph nodes removed also showed up positive, so there was also a possibility there could be mets further afield. Thankfully not it would seem.

As for side effects, the gynecomastia is no longer tender but I have a lingering hard lump under each nipple. My bowels are still rather loose which can be a nuisance at times. Somethings to mention to the Onco at the next appointment. I feel like I’ve finally come to the end of a very long chapter in my prostrate story or am I speaking too soon? Here’s hoping for a long sabbatical before any chapter 2.

User
Posted 28 Jun 2023 at 20:47

Wow Chris, that is fantastic news. I am thrilled for you. 🍾🎉

User
Posted 28 Jun 2023 at 23:54

Fantastic news Chris. All the best

Jim

User
Posted 29 Jun 2023 at 01:11

Chris, great news,long may it continue.

Thanks Chris.

 
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