New diognosis

Good morning Antep and welcome to the prostate cancer forum. You have raised several valid points in your post. The PSMA PET scan is recognised as the most accurate scan available for the detection of prostate cancer to date but like any new technique its benefits and limitations are becoming more apparent the more available it becomes. It is part of the equation used by the experts when coming up with a full diagnosis and treatment plan. I have found an interesting article which discusses false positives on PSMA PET scans and it does reference a weak uptake in the bone as being a possibility but this has to be read in conjunction with the raised PSA. It raises a good point that if you can get a repeat PSMA PET scan in 6 months time after ADT treatment and the anomaly has gone, then it probably was prostate cancer metastases.

https://www.urologytimes.com/view/dr-reiter-discusses-accuracy-of-psma-pet-scans

Next, where to be treated. It sounds like your urologist has been giving you excellent service by organising the scans but will now transfer you to an oncologist for the treatment part. I think it is usual to try and keep it within your health authority simply for ease when the MDT meet to discuss treatment and for ongoing reviews but there is no reason why you cannot get a second opinion from a chosen person who may recommend and have oversight of treatment locally if it is available. If your local health authority doesn't have access to the most appropriate treatment then you can travel to get it. All treatments can cause fatigue and things like radiotherapy need preparation before each session so this needs to be taken into account when choosing location for treatment. The thing to do is to speak to the Urologist and ask the question.

You have started the first part of your treatment with the hormone therapy and this can have fairly rapid effects on your body as the testosterone level is reduced. The hormone therapy works throughout the body no matter where the cancer is lurking. There has been a video produced recently which you might find useful to give you an idea of what to expect and more importantly how to minimise them. Basically exercise and keeping fit and active is the most important piece of advice people will give you.

https://youtu.be/44nCEtxK24Q?si=_bqz2YVn4-r1UdeQ

I would also suggest downloading this free book which explains terminology and treatments.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Mentally it can be difficult at the beginning when you are first told you have cancer, not just for you but also for your family members. We all handle it in different ways but if you need to talk to someone then there is help at the end of the telephone on

0808 808 00 00

From experience things improve once you have a full diagnosis and treatment plan but the waiting is the difficult bit. One tip is to keep a diary of who you have spoken to, get telephone numbers and a summary of the conversation so that if things slip then you have the evidence behind you.

As a community we are here to try and answer your questions but none of us are medically trained so the information is based on our own experiences. Ask away, we are a friendly bunch with a range of different experiences. My husband is dealing with advanced metastatic prostate cancer and was diagnosed in July 2020. He has had a range of treatments and is still going strong and we both say we have a good quality of life. It has made us put our house in order with wills etc but it has actually brought us closer together as a couple so there are positives as well as negatives.

Hi Anteo

I am a bit puzzled by this.

Your initial stats were low but they gave u a PET scan .The scan results not easy to decipher .

Could be worth getting hold of the original MRI scan results to see what that said, could give the answer as to why a PET scan was done, just to be sure.

Could be worth getting a second opinion but think u need some more info first.

Just to let u know I have always read good things about UCLH over the years.

With a PSA of 10 unusual to be in the bones, ok it does happen but not a lot.

Try and get some more info and come back on here.

All the best

Steve 

As usual you raise some good points about the PSA and likelihood of bone mets. As you say, it is unusual to be sent for a PSMA PET scan unless there was something to indicate that it could be useful from either the biopsy, MRI or if the PSA were above 20. 

I found this article interesting on the association between PSA and findings from the PSMA PET scan in treatment naive patients in relation to presence or absence of different types of metastases. It also raises a good point about the type of tracer used as some appear to be slightly more accurate than others.

https://www.sciencedirect.com/science/article/pii/S2666168323025314

Thanks for the info AH , i will have to read again as a lot to take in but looks interesting.

I suppose we just assume with a PSA of 10 its going to be a T2 or possibly just a T3a unless low secretion .

I must admit I don't understand the PET scan results here, that's why I suggested a look at the MRI which possibly could give some clues.

best wishes

Steve

Hi AH,

Just read that link , that’s exactly what’s happened to me , when my PSA reached 5.12 nothing showed up on the pet scan , 

I’m in a strange position now as my PSA has reached 20 and I will be having another scan, I say strange as I want and hope it shows so I can start treatment to eradicate it.

The next few weeks will tell me one way or the other..

Best Wishes

Tony

Hi Tony (Tony 123 ), sorry you are not feeling well, is this fatigue or pain? I presume you are still being treated at the Marsden, if so it is one of the best (if not the best) the uk has to offer.  Keep us posted. Good luck, David.

Hi David,

Thanks for your reply, I’ve suffered with Fatigue, other symptoms headaches especially first thing , sweating a lot , just not feeling great , sometimes pain in hip area ,( that could be old age ) ..

After two clear scans in the last 18 months it’s bizarre that this time I want something to be there , I never thought I would be saying that . I feel with my PSA increasing there is obviously something there and hopefully I can still be cured..

all the best

Tony

Hi Antep , just wanted to give you some info on my dads journey so far as it is very similar sounding to yours. 

He had slow and steady rising PSA levels over the past few years (around 9.1 in May 2023 to 12.7 in the summer of 2024). He had a biopsy done following the increasing PSA and it came back that less than half of the samples taken were shown to be cancerous and i think a Gleason score of 4+3. The doctors presumed the cancer was contained within the prostate due to an initial MRI and his low PSA readings but sent him for a PSMA  scan at Kings to double check. The results came back that he had three small ‘suspicious areas’ within his pelvic bone but they could not confirm if they were bone mets or not. The plan was to start him on hormone therapy straight away for 3 months and then rescan to see if there had been any change in the size of the suspicious areas. 

Fortunately the primary prostate tumour shrank in the follow up PSMA but unfortunately so did the three areas within his bones meaning that the cancer could be confirmed to have metastasised to his bones as it reacted to the hormones in the same way as the prostate tumour. Although the news was a huge shock to us to now be staged as ‘advanced’ PC with a relatively low PSA reading but in the back of my mind, I also count it as a blessing as the tiny spots within his bones have been picked up early and we can treat them rather than being left undetected until they potentially become a bit more problematic. 

it might also be worth sharing that since starting on hormone therapy 3 months ago, my dads PSA level is now 0.4 and he will begin radiotherapy hopefully soon once we meet with the consultants. This is just our story and I am truly hoping your results are different to this. 

Thank you for sharing your experience. Urologist did not explained anything, I just want to go UCLH for treatment. Is it easy to choose where I get my treatment

Hello

I managed to get all the reports, MRI, biopsy and PSMA PET. I also managed to get an appointment at UCLH, I just hope that they will accept me as a patient