Salvage radiotherapy after radical prostatectomy

Hi Cillian 

Sorry to hear you need to have a scan...I guess you are also being treated for prostate cancer - difficult time.

My hubby had his PSMA Gallium tracer scan done on the NHS....first one organised post op by his urologist (the surgeon) and second one organised by his oncologist in February 2018. Hubby is under the Macmillan Cancer centre at UCLH in London. I think you can request for one private at same hospital...under nuclear medicine at UCLH Main building....go on their website. The scan did not pick up secondary and hubby is on a new drug from America at the moment and his PSA is down from 4.13 to 0.4 in four weeks. Keeping fingers crossed for good news again next month re PSA reading. 

Take care and good luck with PSMA scan.

Hafez. 

Thanks Hafez for the quick response, and for the information.

Yes, I've a prostate diagnosis. Early but aggressive, still local - but PSMA required to confirm this.

I'll contact UCLH this morning and find out more about what they can offer.

Best of luck to you and your husband.

- Cillian

Dear Cillian

Thank you. Really sorrry to hear about your situation and hope you will be able to sort out the PSMA Gallium scan at UCLH and don't have to go to Germany.

My hubby's cancer is also aggressive....Gleason 5 + 4 and it was contained in capsule pre op but it was in seminal vesicles and sadly post op MRI shows small residue in seminal vesicles...so treatment is on going. 

Take care and let me know how you get on with UCLH. 

Hafez. 

I thought it was time for an  update. I've had a sigmoidoscopy 1/9/18. Evidence of radiation proctitis and a polyp removed for checking. Good news is the polyp has been looked at and is benign.
I saw my oncologist 15/10/18 and he is quite happy with the way things are for now. I have my last PROSTAP 3 injection on 3/1/19 and in my oncologists words "we wait and see what happens. If your PSA rises again then we will put you back on PROSTAP".

I had my bloods tested yesterday including PSA. I have full blood tests regularly as I am on arthritis medication so red cells. white cells, electrolytes, liver and kidney function.
I got a call from my GP at 4 p.m. to say the lab had phoned. My potassium reading was high (6.3) so I had to head off 15 miles to the Western General Hospital in Edinburgh for ECG, blood pressure. temperature and bloods to be rechecked.
After 2 and a half hours of waiting (not too bad overall) the potassium came back as normal (4.2) so got home at 9 last night, phew!
While I was there I asked the doctor if the labs had reported my PSA value. She went to check and it is still <0.1, hip hip!
Why is it that while I was driving home I had an urge to ask for a printout so I can see <0.1? Bloody disease and my control freakery!

Hi Ian

That's good news all round especially the PSA.

I don't blame u for wanting to see a printout, I always make a point of going to the surgery and asking for a copy just so that there is no mistake and I can keep looking at it again and again in the coming days and weeks, mad , I know.

best wishes

Steve

PS

wouldn't worry to much about the potassium, twice my partner has been summoned to hospital because   of high potassium in blood test result and both times false alarms, better safe I suppose

Hi Ian

Great news about your PSA!! 

I understand the disbelief and needing to see it in black and white - I tend not to trust PSA results that go down (unusual) or don’t go up a lot whereas I take a big jump as gospel. Daft I know, but this bloody disease has made me like that. 

Hopefully your nice very low level will stay that way.

Cheers

Jim

Thanks Steve, it’s good to know I’m not the only one needing to see the PSA figure in black and white. I know what you mean about the potassium. I’ve been in several times for the same reason but that was the first in nearly two years. Hope you are doing ok.

Ian

Thanks Jim, in my oncologist’s own words, it will make my day of the salvage radiotherapy has worked! I’ll take the undetectable for now.

Hope you are doing ok.

Ian

Hi  Ian

Thanks for your update. Glad to see things are going well for you with prostap 3 injection....it seems to be controlling the disease. Wishing you all the best and looking forward to reading more good news from you. I must say you seem to have good knowledge of this disease and always give out good informations which I find really helpful. 

Aso for hubby....he is on Zoladex at the moment and PSA was 0.97 last reading. Will get new reading next Wednesday the 8th November. He was put on a new trial drug in April 2018 which controlled his PSA but he had to come off the drugs three times due to severe side effects and unbalanced Thyroid readings. Between July 2018 to September 2018, he had MRI brain scan, Echocardiography and 24 hour ECG...all clear. He also had another PSMA Gallium last month and no detections of secondary. We have no idea where we are heading at the moment...so wait and see what happens next week.  Hubby seems fine and not really worried about his rising PSA at the moment but I feel so anxious all the time.  

Thank you Ian. Take good care and all the best. 

Hafez

Thanks Hafez, it’s good to see your hubby’s PSMA Gallium scan showed no secondaries.   Also glad he is feeling good at the moment. This is a horrible disease and anxiety is never far away.....

All the best,

Ian