PSMA Scan before Intermittent Hormone Treatment

User

Posted 16 Jan 2023 at 12:09

I was diagnosed in late 2015, PSA 9.4, 4/9 cores, Gleason 3+4, T3a, and had a radical prostatectomy. Post operation PSA undetectable.

In autumn 2017 with my PSA rising at 0.3, I had salvage radiotherapy to the prostate bed.

Although initially PSA was undetectable after SR, since mid 2019 it has been rising slowly and reached 2.2 in November 2022.

I had a telephone appointment with the consultant urologist in November and it was suggested I should go on Intermittent Hormone Therapy. Fairly blunt comments highlighting all the negatives associated with HT. No discussion about which drugs or delivery mechanism. No mention of a scan to identify location of the cancer. The consultant suggested a review in 3 months and not leaving treatment beyond a PSA of 4.

My January PSA is 2.9. With a further appointment imminent I am looking to become an informed patient so I can ask the right questions.

The specialist nurse has suggested a PSMA scan, but after reading several threads there appears to be several different types. Also, PSA levels were significantly less than mine.

Any suggestions, comments, advice would be much appreciated.

User

Posted 18 Jan 2023 at 20:58

Found it

https://community.prostatecanceruk.org/posts/t2678-Just-another-story#post46339

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

User

Posted 19 Jan 2023 at 00:33

Ah Jules, I am rarely moved by anything but looking back at the poetry written by warriors I have known through this forum leaves me wrecked. If you wept at Andy, try reading Nimeniton's post "the moon reflects a greater light not its own" or have a look at Spurspark's later posts when he agreed to be a guinea pig for what later became a number of our now-established treatments. I definitely need a tissue now!

https://community.prostatecanceruk.org/posts/t9135-The-moon-reflects--a-greater-light-not-its-own

Edited by member 19 Jan 2023 at 00:58 | Reason: to activate hyperlink

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

User

Posted 22 Jan 2023 at 08:39

No need to apologise, Lynn

Every post is interesting and leads to more threads, experience and knowledge

User

Posted 25 Jan 2023 at 07:41

Good news - I had a positive discussion with my GP. He could understand my frustrations and was very supportive in me getting the 'right' 2nd opinion.

Whilst he has gone off to research where to recommend, he's happy for me to come back with a suggestion.

Living in North Wiltshire, realistically I am looking to Bristol, Swindon, Oxford and at a push Southampton and have seen the last two mentioned in various posts. Obvious everyone's experience is different, but any pointers towards centres that are forward thinking and have the capability in-house to deliver a range of treatments would be welcome.

Thanks again for your support.

Andrew

Show Most Thanked Posts

User

Posted 16 Jan 2023 at 14:36

I would not want to overlook the prospect of a curative treatment before going on to life-long hormone therapy. It could be that you had just one or two mets which could be amenable to zapping with SBRT. Even if that turns out not to cure, it would probably still punt off life-long hormone therapy by a couple of years and similarly extend life.

So yes, I would push for a PSMA PET scan before starting hormone therapy. Hormone therapy will reduce the sensitivity of the PSMA PET scan (although its sensitivity increases again to castrate resistant prostate cancer cells later on). I think at a PSA of 2.9, the differences between the PSMA tracers would not be significant, and go with whichever you can get quickest and/or is most convenient.

User

Posted 16 Jan 2023 at 14:50

A1000, if you check my profile you will see there are some similarities in our journeys. I had a PSMA scan at a PSA of 1.4 in July last year and SABR treatment to a pelvic lymph node tumor in August last year. I have a PSA test in two days time. I had the 1007 tracer.

Thanks Chris

User

Posted 16 Jan 2023 at 15:39

+1 for get a PSMA scan so that you can see what you are dealing with and if it can be treated. My post op PSA was 0.8 and it identified pelvic lymph nodes. I wouldn't get too hung up on the tracers they use - the main thing is to get the scan. Best wishes.

Edited by member 16 Jan 2023 at 15:40 | Reason: Not specified

User

Posted 16 Jan 2023 at 17:23

Get the PSMA scan! If you only had prostate bed salvage therapy you have 1 remaining chance of curative RT to the whole pelvis if a scan identifies the recurrence in that area.

As others have said if you only have one or two metastasis elsewhere these too could be zapped.

User

Posted 16 Jan 2023 at 19:00

Your psa appears to be around the right point for a decent psma scan. The likelihood of detecting what's there rises with increasing psa and 2.9 is getting to the point where you don't want it to get much higher anyway.

From memory the chances are about 20% at 0.2 and 50% at 0.5 although some are detected much lower especially if it's one lesion.

Where to get it done might be a problem. You could look it up where they are and whether you can afford a private one. Also that your doctor will look at the private scan and take it on board. Private RT costs a fortune but a scan is much less.

Edited by member 17 Jan 2023 at 12:20 | Reason: Decimal point error corrected

User

Posted 17 Jan 2023 at 08:36

Many thanks for your comments and suggestions - all very welcome and thought provoking.

I have heard that with a PSA >2 the detection rate with PSMA is 95% so agree it would seem the obvious approach to take.

I'll let you know how things go with the consultant towards the end of the week.

User

Posted 17 Jan 2023 at 13:03

As others have said, don't get too hung up on the PSMA if it isn't available in your area - although the fact that your CNS has suggested it is a very good sign! If not available, there are also other tracers such as Axumin, which is easier to produce and transport but with very similar sensitivity to the PSMA tracers and may be available in your region. And if PSMA / Axumin are not available to you on the NHS, your PSA is high enough that a good old fashioned choline PET scan may identify the problem - certainly worth a go before you decide to fork out privately. .

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

User

Posted 17 Jan 2023 at 17:03

I had a PSMA PET scan in December in Oxford. This was a referral from my urologist due to noticing something in the MRI. They usedAxumin ( brand name), the point is today I met with Oncologist to discuss results and treatment plan in some detail and the scan definition was stunning. Unfortunately it did show a lot more spread in the lymph nodes than I was expecting and has shaken me up a little.

I will get over it but I recommend you push for the PSMA.

User

Posted 17 Jan 2023 at 22:45

Originally Posted by: Online Community Member

Intermittent HT sounds like a rather old school approach to me. I agree with the general view suggested above, that a PSMA PET scan would be wise.

Jules

User

Posted 17 Jan 2023 at 23:54

Originally Posted by: Online Community Member

I will get over it but I recommend you push for the PSMA.

Great that your scan images were really detailed Nigel but Axumin is not a PSMA scan 🤦‍♀️

Sorry that the results were not as you had hoped.

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

User

Posted 18 Jan 2023 at 18:34

Oh Lyn haha

i couldn’t remember the name of the tracer… tbh. But remember it was something like Fluro something or other

so I googled and there lies my mistake 🤣

however I do stand by the images.

I have to admit I felt quite sorry for myself yesterday . Today is better I don’t sulk for long

User

Posted 18 Jan 2023 at 19:44

Yes, while it was being trialled, it was called FACBC and is the preferred tracer of our regional cancer centre. That is possibly because there is no Gallium 68 production in our region apart from Manchester which can only produce enough each day for a small number of patients (and perhaps can use all they produce on their own patients)? There is also a production line in Windsor I think but Ga68 doesn't always travel well so the risk of appointments being cancelled on the day is significant. Fortunately, there is very little to choose between Ga68 PSMA and Axumin PET scan unless you need the scan in order to see if you are suitable for Lutetium.

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

User

Posted 18 Jan 2023 at 19:48

PS glad that you are bouncing back. I have a friend diagnosed with terminal cancer in her 30s - her status on Faceboook is now "kcuf cancer" which I think is probably a very healthy attitude to take!

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

User

Posted 18 Jan 2023 at 20:06

My scan was in Oxford so perhaps that influenced the tracer? Whatever it produced the desired effect

So sorry for your friend Lyn…. I have been really surprised by the offer of support from both male and female colleagues. Quite heart warming actually

I am deffo in the Kufic place 😊

User

Posted 18 Jan 2023 at 20:14

Can I ask you Lyn. If you and OH embarked on any major changes ?

I feel like I want to get the most out of our life but don’t want to be silly about it … in othe words just a silly old ma

actually I have addressed this to you but keen to here other members views too

User

Posted 18 Jan 2023 at 20:55

Changes as in lifestyle? Yes, when J was first diagnosed, I panicked; I was nearly 45 and he was 50 - I thought I was going to be a young widow and he would never make retirement and all our dreams. So:
1 - I changed his diet completely - no more red meat, dairy or ready meals ... loads of soya and processed tomatoes. I had to learn to cook from scratch as I had never really done that. After a couple of years, I found out that every time I went away on business he was cheating (especially with bacon sandwiches and cheese) so I gave up on all that lark. Felt better when our urologist said that it made no difference once you have been diagnosed and treated
2 - I booked major holidays - things that were on the bucket list. The first year, I think we went away 4 times, Gambia, Greece as well as the usual France trip. That continued until a couple of years ago (see 5 below)
3 - when he had the recurrence, I went back into panic mode and bought him a Harley Davidson (eeek) for Christmas. The sales guys at the HD garage dined out on the story for months; it was only when it was delivered that I found out he didn't have a licence 🤦‍♀️
4 - when his PSA became detectable again, I persuaded him to take early retirement on the basis that he wasn't going to live to be an old man so might as well enjoy life now
5 - a couple of years ago, I had to break it to him that since a) he is still here and his PSA does mostly stay undetectable, b) has only a very small pension and c) isn't earning anything, we need to cut back on the fancy holidays 😂😂😂

We had a very special friend on here, TopGun, whose strapline was "life is for living" - he was one of my heroes. You might enjoy reading Andy Ripley's old posts here (yes, as in England & Lions rugby player and Superstars champion) - he wrote in the introduction to his book:-
"Dare we hope? We dare. Can we hope? We can. Should we hope? We must, because to do otherwise is to waste the most precious of gifts, given so freely by God to all of us. So when we do die, it will be with hope and it will be easy and our hearts will not be broken.” For a few years, PCUK sold a T-shirt with the first 15 words on it.

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

User

Posted 18 Jan 2023 at 20:58

Found it

https://community.prostatecanceruk.org/posts/t2678-Just-another-story#post46339

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

User

Posted 19 Jan 2023 at 00:08

Thank you Lyn, both for sharing your own experience with directness and humour, as usual, but also for locating "Just another story".

Like others I'm lost for words to respond to Andy's effort and his amazing "diary" stretching over 5 years. I've shed a few tears this morning marveling at the way he and his family took on the cancer challenge. In a sense, I think they won.

Strongly recommend reading "Just another story" to everyone but have a few tissues handy.

Jules

User

Posted 19 Jan 2023 at 00:33

https://community.prostatecanceruk.org/posts/t9135-The-moon-reflects--a-greater-light-not-its-own

Edited by member 19 Jan 2023 at 00:58 | Reason: to activate hyperlink

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

User

Posted 19 Jan 2023 at 01:23

I read the first paragraph of The Moon but I think I might need a few days before I can follow through. Thanks again for the link Lyn.

Jules

User

Posted 19 Jan 2023 at 08:07

Great post Lyn. Thank you so much for sharing.

I love the HD point, hilarious 😂

I will take the time to read the links tonight.

Not sure if I am picking up correctly but are you saying OH jumped to early with the retirement ?

User

Posted 19 Jan 2023 at 20:47

Dear Lyn,

thank you for sharing the link to Andy’s thread.
I think you were very perceptive to send that to me. Thank you.

I am only half way through and need a break for an hour or two. I was particularly touched by Andy’s chat with ‘her’

i hope many others take up the link

also pretty impressed with your memory 🤓

User

Posted 19 Jan 2023 at 21:09

Originally Posted by: Online Community Member

Not sure if I am picking up correctly but are you saying OH jumped to early with the retirement?

Good God, no!!!! He has never looked back - I just have to work extra hard to fund all his bloody hobbies and holidays and I am feeling a bit tired 😂

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

User

Posted 19 Jan 2023 at 21:32

Hahahahahaha.
I know this is a stupid thing to say but you should take care of you too

i can’t imagine a life without work. Sad as it is but I enjoy it and hate it. But I feel it defines me …… I know that is sad and I think Andy’s threads gives food for thought

the trouble I have with this is it feels so selfish

like I have always hated job applications and interviews me me me etc

User

Posted 19 Jan 2023 at 22:44

ChrisJ is probably a good person to talk to about this - he left work but then took on a new career as a school caretaker which he loved, and also was employed for a while as a care assistant to vulnerable people, I think.

Work is great if you love it and a waste of precious time if you don't. John loved his work but had a 2 hour commute most days; I felt that he could do something more joyful with his life.

There is a sombre consideration as well. I come from a local authority perspective and when we (sadly) had employees diagnosed with incurable illness, one of the things they were advised to do was get proper financial advice. The options (take ill health retirement, take early retirement & cash in the pension or stick with the job because of the death in service benefit) are complex & need to be worked through carefully. So, for example, I had a team member diagnosed with terminal cancer and her D-I-S was 5 x annual salary plus a decent widowers pension - it would have been madness for her to resign or take early retirement - she worked while she felt well enough and then went off on sick (on full pay) until she died.

John wasn't terminally ill so the finance adviser calculated it all out and if he lives for 17 years, we will start to lose out financially by something like £5 the first year and £17 the second year. By that calculation, retiring early and drawing down the tax free lump sum means he can have fun now and if he is still here in 17 years time, we won't really miss a fiver! But it wouldn't work out that way for everyone.

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

User

Posted 19 Jan 2023 at 22:45

Andrew1000, just wanted to apologise - these last few posts have been completely unrelated to your post. Sorry!!!

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

User

Posted 20 Jan 2023 at 10:52

Sorry to jump in on this post - but Lyn, your post at 20.55 is great and cheered me up - which hasn't been easy to do lately!

Edited by member 20 Jan 2023 at 10:52 | Reason: Not specified

Mrs MAS

User

Posted 21 Jan 2023 at 00:30

As promised here's my update following the discussion with the consultant which was no better than the first 3 months ago..........

"IHT is the only way forward for someone like you." "What's the point of a scan since it would not change the treatment being offered" "There would only be a change to the treatment if it stopped working." "The location would not affect the treatment."

Armed with the information and suggestions from you kind folks, and some NICE/NHS guidance, I am off to talk to my GP next week having already told him the answer is not this consultant!

Thanks again for your inputs.

User

Posted 21 Jan 2023 at 01:35

So basically, you are incurable and should just accept that? How disappointing and frustrating for you that the consultant isn't open to any more creative approach. Absolutely right of you to seek a second opinion from one of the uro-oncology centres of excellence, where the oncos may be a bit more modern in their approach.

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

User

Posted 21 Jan 2023 at 06:47

Have a look at the NHS clinical research page to see what is available also perhaps? It is very frustrating when they take 'what's the point approach'. Seems very much like NHS management speech. I can imagine if it was some of these physicians family members who have same presentation they would be asking the same questions!

User

Posted 21 Jan 2023 at 18:21

You said in your first note it's a consultant Urologist. Was it a slip of the keyboard or was it an Oncologist? Someone may correct me but I'd want to meet an Oncologist.

The specialist nurse might advise. My Macmillan nurse covers both Urology and Oncology.

Edited by member 21 Jan 2023 at 18:22 | Reason: Not specified

User

Posted 22 Jan 2023 at 08:39

No need to apologise, Lynn

Every post is interesting and leads to more threads, experience and knowledge

User

Posted 22 Jan 2023 at 08:48

Originally Posted by: Online Community Member

You said in your first note it's a consultant Urologist. Was it a slip of the keyboard or was it an Oncologist? Someone may correct me but I'd want to meet an Oncologist.

The specialist nurse might advise. My Macmillan nurse covers both Urology and Oncology.

Good point Peter 2016, bio says consultant Oncologist they are listed under that department but letter from the hospital states Urology consultation.

User

Posted 23 Jan 2023 at 20:25

Andrew, your browsing through this forum might have already alerted you to Old-Barry

but if not you could check out his profile and some of his posts. He has been in the position of having recurrence some years post RT in 2007, had several HIFU treatments and is still holding PCa at bay.

The words of your consultant are still in my head and I hope you never have to deal with that contemptible a******* again.

Jules

User

Posted 23 Jan 2023 at 21:22

Simply put

You’re fired

User

Posted 25 Jan 2023 at 07:37

Originally Posted by: Online Community Member

Andrew, your browsing through this forum might have already alerted you to Old-Barry

The words of your consultant are still in my head and I hope you never have to deal with that contemptible a******* again.

Jules

Thanks for the pointer, Jules

User

Posted 25 Jan 2023 at 07:41

Good news - I had a positive discussion with my GP. He could understand my frustrations and was very supportive in me getting the 'right' 2nd opinion.

Whilst he has gone off to research where to recommend, he's happy for me to come back with a suggestion.

Thanks again for your support.

Andrew

User

Posted 25 Jan 2023 at 08:59

Originally Posted by: Online Community Member

Good news - I had a positive discussion with my GP.He could understand my frustrations and was very supportive in me getting the 'right' 2nd opinion.

Nice work! It's hard enough dealing with PC with good medical advice but being told to just take HT and see what happens was deeply disappointing from a urologist in 2023.

I'm in Australia so I can't suggest any places to check out but hopefully someone on here will have some suggestions.

I wish you all the best with this Andrew. Clearly it's not going to be easy but you've still got good options.

Jules

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