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PSMA scan for PSA of 0.023?

User
Posted 23 Feb 2018 at 13:09

It’s great to have a good relationship with your Onco. Mine fully understands my decisions and I asked him if I was being stupid and he said not at all. He’s a prof of medical Oncology. He’s running the new immunology stuff here in Southampton. He’s made it clear I’ll need treatment —he even suggested I may not reach 56 , but he knows I want good years with QOL.
I took 20mg Tamoxifen once per week mate

If life gives you lemons , then make lemonade

User
Posted 09 Mar 2018 at 15:55
My GP had never heard of tamoxifen being used to prevent breast pain and growth. He did a bit of reading up on it and said it seemed perfectly sensible and prescribed it.

Ulsterman

User
Posted 09 Mar 2018 at 16:31
Well good on your GP, quick question though, what will the Onco say when he/she finds out? I think it’s better that all the information about treatment is clear to all involved and you have a bit of an issue with an Onco daying no to a treatment and a GP saying yes.

I’m now on weekly 20mg, though my Onco seemed a bit reluctant. I think it is helping slightly with the pain as it seems to be lessening and in a less large area beneath the nipples - there are small moobs though but hopefully growth can be halted

The 10mg didn’t seem to be helping much though I wasn’t on it for long

Edited by member 09 Mar 2018 at 16:43  | Reason: Not specified

User
Posted 09 Mar 2018 at 21:44
Out of curiosity Ulsterman,

What dosage did your GP prescribe?

Bill

User
Posted 09 Mar 2018 at 21:57

Love it Walter. Guide your own recovery. To be informed is excellent. My GP said I know far far more about PCa than him ! Good luck

If life gives you lemons , then make lemonade

User
Posted 10 Mar 2018 at 11:31
Bill - I'm on bicalutimide for six months and don't see the oncologist again until late July, so I'll cross the GP/oncologist bridge then if I have to. I have been prescribed 20mg per week. TBH, I don't want man boobs if I can avoid them so I don't care. I suppose the question would be how soon one stops using tamoxifen once the bicalutimide stops.

Chris - once again, this forum has empwered the patient!

Ulsterman

User
Posted 10 Mar 2018 at 13:38
Yep

I agree with you Ulsterman, Oncos need to take gynecomastia more seriously

Kudos on getting the treatment you need

User
Posted 20 Jul 2018 at 16:24

An update on my post SRT PSA result.  Pre treatment it was 0.023.  It is now 0.006.  Oncologist is over the moon and I’m off backpacking in Central America.

Ulsterman

User
Posted 20 Jul 2018 at 17:33

Brilliant news. Just what you want. Enjoy your backpacking trip.☺

 

Ann

User
Posted 20 Jul 2018 at 18:24
Great news. Chuffed for you and you had the evidence in front of you. Enjoy your holiday

If life gives you lemons , then make lemonade

User
Posted 20 Jul 2018 at 18:26

Great news. Enjoy your time away.

Ido4

User
Posted 20 Jul 2018 at 22:53
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2018 at 10:18

Briĺiant news Ulsterman. The scan and the treatments have worked for you.

Enjoy your break

 

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 21 Jul 2018 at 12:02
Brilliant...enjoy Central America

Bri

User
Posted 21 Jul 2018 at 14:40
From your starting point you have done very well. Now enjoy the well earned hol.

Ray

User
Posted 23 Oct 2018 at 11:11

October 2018 PSA test - still less than 0.006.

Next test, February 2019.

Ulsterman

User
Posted 23 Oct 2018 at 15:15

Good news.

Ido4

User
Posted 23 Oct 2018 at 15:22
Brilliant !!

If life gives you lemons , then make lemonade

User
Posted 23 Oct 2018 at 15:44
Bl**dy good news!
User
Posted 23 Oct 2018 at 16:29
Nice one!

Ray

User
Posted 23 Oct 2018 at 18:33

Looking good.😀

User
Posted 23 Oct 2018 at 21:58
We all love good news!
Barry
User
Posted 24 Oct 2018 at 00:09
Fantastic - really pleased for you x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2018 at 00:37

Two years ago, on 8th November 2016, my PCa was confirmed.  Today, I’m writing to you all from Antarctica.  It was always a dream of mine to get here.  I don’t know what the future holds, but today is a good day.  The scenery is stunning.  I’m happy.

Ulsterman

User
Posted 16 Nov 2018 at 01:07
Is it a freebie school trip?

Watch out for polar bears......er....I mean feral penguins! I’ve got it 180° degrees wrong again!

Enjoy your voyage and the summer sun. Factor 50?

Cheers, John.

User
Posted 16 Nov 2018 at 01:18

I don’t know of any school that has gone to Antarctica.  And factor 50 isn’t enough - hole in the ozone layer and my fair, Northern Irish complexion!

User
Posted 16 Nov 2018 at 01:22

😉

Which vessel are you on?

Edited by member 16 Nov 2018 at 01:24  | Reason: Not specified

User
Posted 16 Nov 2018 at 01:45

Ocean Nova

User
Posted 16 Nov 2018 at 02:44

Hmm.......very intimate - where’s the casino?

My mate’s just recently been on Quark’s nuclear-powered Russian ice-breaker “50 Years of Victory” on a voyage to the North Pole. You could get some radiotherapy just by visiting the engine room! 😂😂😂😂

Bon Voyage.

Cheers, John

Edited by member 16 Nov 2018 at 02:56  | Reason: Not specified

User
Posted 16 Nov 2018 at 06:36
Have fun!
User
Posted 16 Nov 2018 at 07:40
Sounds great ,enjoy .

Debby

User
Posted 16 Nov 2018 at 09:46
The Antarctic trip sounds amazing. Enjoy the moments there.

Ian

Ido4

User
Posted 16 Nov 2018 at 16:13
Watch John Carpenter's The Thing first :)
User
Posted 23 Nov 2018 at 12:22

Have you been imaged with Gallium PSMA?  If so, would you be willing to share your experience?

 

 Curium (Radiopharmacy), who  provide PSMA prostate cancer imaging to UCL  and are in the middle of expanding the provision of PSMA in London and UK are hosting a meeting  on the 18th December 2018 at UCL and they would very much like to hear from the experience of a patient. 

If you would be interested and fit the criteria, please email sue.boyes@prostatecanceruk.org

Assistance with reasonable travel expenses available.

 

User
Posted 23 Nov 2018 at 15:21
Good news that the PSMA scan should be more widely available and it would be even better if hospitals could provide it more readily for NHS patients. If your return from the Antarctic permits and you are able to attend the meeting I am sure you will find it interesting. I was told by the Paul Strickland Scanner Centre where I had my PSMA scan that the same supplier provided the ligand for all the London hospitals so if there is a break down in the 'generator' (as happened in my case, no alternative supply is available so the scan had to be aborted). Assurance that steps were being taken to avoid similar situations arising in future would be appreciated. Another aspect is that the cost of these scans seems to be rising in the UK rather than decreasing as one would expect. One can purchase return flights between the UK and Australia, pay for short stay accommodation and have the PSMA scan for what is being charged in London. Could they account for the difference?
Barry
User
Posted 23 Nov 2018 at 16:58

One reason Barry, is that the NHS is out of control and no-one is really in charge, together with constant political meddling, so healthcare suppliers and providers charge what they think they can get away with. Like anyone in business would do.

Hence astronomic prices for drugs and rubber gloves, etc., etc., which could be purchased on the open market for a fraction of the cost, if it were the NHS buyers’ with deep pockets own money they were spending.

I am no socialist, but I would propose a Citizens’ Panel of Medics, Patients and Politicians to assess the cost of the NHS to the country, and tell the Chancellor exactly how much he will have to cough up to fund it annually for an efficient, no waiting-list service like in some other parts of Europe, by whatever precept.

Rather than politicians telling it the other way round. ”NHS funding is increasing in real terms”. They never mention the population and thus customer base has increased by 20% in real terms!

As soon as Tesco take it over the better!😉

Cheers, John.

Edited by member 23 Nov 2018 at 17:04  | Reason: Not specified

User
Posted 23 Nov 2018 at 17:08
Have you seen what is happening in places like Swindon where all paediatric services have been handed to Virgin and as a result, seriously ill and disabled children haven't seen their specialist for over a year? Or the fiasco in the south west where all urology diagnostics have been given to a company owned by some GPs?

God help us all :-(

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

User
Posted 23 Nov 2018 at 20:25
As we have said previously, the NHS is neither well funded nor well organized. and is insufficiently staffed. I,like many here could illustrate this from our own experiences. However, this does not address the aspect I raised as to why the costs of PSMA scans is so high in the UK compared to Australia for private patients and not only in Australia. Is the supplier asking too much or are the treating hospitals doing thee same? Perhaps a bit of both is applicable. Sometimes it's a question of supply and demand. On an American forum I sometimes visit a patient asked of a hospital why they charged so much more than other hospitals for a particular scan. He got a short but honest answer which was "because we can".
Barry
User
Posted 24 Nov 2018 at 00:46

Old Barry

I’m returning from Antarctica tonight.  Unfortunately, though, I can’t make that meeting as I’ll be in the Dominican Republic.

Ulsterman

User
Posted 24 Nov 2018 at 02:25

Originally Posted by: Online Community Member

Old Barry

I’m returning from Antarctica tonight.  Unfortunately, though, I can’t make that meeting as I’ll be in the Dominican Republic.

Ulsterman

Bit of a change of climate then. I once flew back from the Caribbean to a few days in Iceland in January - sunrise 10 am, sunset 4pm. I did notice a slight change in temperature.....but then the clue is in the name!

Cheers, John.

User
Posted 26 Nov 2018 at 13:19

Oh that's a shame but thank you for offering.  Enjoy the Caribbean definitely a change of climate from here and the Antartic.

User
Posted 25 Feb 2019 at 14:31

8 months post salvage radiotherapy and I am still <0.006.  I'm happy.  I'm still on HT until August.  I don't like bicalutimide - my body hair has fallen out, I've put on a bit of weight and I am more tired and less fit than I ought to be.  That said, I'm alive.  I'll finish Bicalutimide in August and then we'll really start to see what's going on.  But good news for now.

Ulsterman

User
Posted 25 Feb 2019 at 15:36

Great news Ulsterman.

I had my last Prostap 3 injection 3/1/19 so waiting to see what's going on,  hopefully nothing!

Ido4

User
Posted 25 Feb 2019 at 15:57
Keep ticking those boxes and teach me the trick :)
User
Posted 26 Feb 2019 at 08:29
Brilliant news Ulsterman.

I continue on the Abiraterone bus and it is rolling along very nicely at the moment

Very best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 12 Aug 2019 at 16:12

Just over a year since my SRT.  PSA is still <0.006.  I’m relieved.

I see my oncologist next week and I expect her to tell me to stop taking bicalutimide.  I’ve been on it for 18 months.  Hopefully, PSA won’t start rising.

Ulsterman

User
Posted 12 Aug 2019 at 16:32

Ulsterman

I will be in the same boat as you come December, that will be 2 years and I’m looking forward to stopping Bicalutamide and Tamoxifen. I’m not looking forward to the anxiety of the 3 monthly PSA tests and worrying about any rise

but I would be very interested to hearing how you get on in the coming months as your body re-adapts to normal hormones

 Bill

User
Posted 12 Aug 2019 at 17:23

Fingers crossed for you ulsterman

User
Posted 12 Aug 2019 at 18:21
Best wishes mate. I’m beyond worrying now and spend little time thinking about it these days until right before and after scans. Funny ain’t it but I’m approaching 9 months without a psa test and it was 83 back then. All I’m thinking about is my cruise in 3 weeks and our next date night , work and living. Total acceptance of my situation. But watch this space when they find something .......

still very glad I’ve kept off all treatment tbh

If life gives you lemons , then make lemonade

User
Posted 12 Aug 2019 at 18:41

Good news Ulsterman. Here’s hoping the PSA stays undetectable.

 

Ido4

 
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