Need some advice for my Dad!

User

Posted 06 Apr 2026 at 17:44

Hi,

I am looking for some advice. My Dad (aged 63) has recently been told he has a PSA level of 52 and I feel like nothing is happening. It took 4 weeks for him to get an MRI scan following this news and we are currently waiting for these results. I feel like both his GP and the consultant he saw have given very little information and haven't even committed to it being cancer but at this level I'm assuming it is, and likely to be at an advanced stage? Especially as I'm reading on this forum that people with levels of around 4/5/6 have been diagnosed.

I am absolutely spiralling and cannot sleep, eat or think about anything else.

My big concern is that he had a stint in hospital around 6 months ago and during that time had a couple of MRI scans on his back to which he was diagnosed with spondylodiscitsis. Since then he has been suffering constantly with back pain and now I can't help but think that he was misdiagnosed and it could have been PCa metastases in his spine.

Unfortunately I have history of this sort of thing as I lost my Mum 12 years ago following a misdiagnosis of cancer. I'm 34 years old and I am terrified that I could be going through all this again.

However, I want to feel more prepared this time round and have come on here to seek some advice on how long tests/results etc should take and what kind of questions we need to be asking in his next appointment? What other tests should be done and what treatment options could be available (particularly if it has spread)? This is all an absolute minefield to me!

Any advice would be greatly appreciated 🙂

Stacey

User

Posted 06 Apr 2026 at 20:28

Hi Stacey,

I'm sorry that you're here on behalf of your dad. He is lucky to have you by his side. Getting a diagnosis is a horrible process. There may be others on here who can give examples of high PSA without advanced cancer - I hope that is the case for you.

My experience has some similarity to your dad's so far. It was 3.5 years ago, but I hope it might be informative if, as you fear, it is advanced cancer.

4 May 22: I went to the A&E with severe back pain, had two CT scans and was discharged without a diagnosis.

3 Sep 22: I went back to A&E with severe pain in pelvis. X-ray of pelvis showed possible tumour. PSA 42.

13 Sep 22: had MRI of prostate and pelvis which showed prostate tumour with likely metastases in hip, pelvis and sacrum.

20 Sep 22: Met with surgeon who performed (following day) a digitally guided rectal biopsy - 2 cores. Which showed tumour gleason grade 4+4=8 (where 10 is most agressive). Surgeon prescribed bicalutamide (which blocks testosterone) until more definitive medication could be started.

23 Sep 22: whole body nuclear bone scan which showed a metastasis in my thoracic spine (where I had had pain in May 22) as well as the ones seen on MRI.

28 Sep 22: Multi-disciplinary team (MDT) met to review my results and decided that I should be referred to oncology (as surgery was not an option once cancer had spread widely to bones).

30 Sep 22: met with nurse specialist who told us the biopsy result and that the cancer was "treatable but not curable".

2 Oct 22: CT Chest / abdomen / pelvis showed no soft tissue metasteses.

7 Oct 22: Met with oncologist to discuss: 1) Androgen Deprivation Therapy (e.g. decapeptyl injections); 2) Androgen Receptor Pathway Inhibitor (e.g. enzalutamide tablets); 3) chemotherapy (e.g. Docetaxel). There are so many options here, it is overwhelming. I chose 1 and 2 and will keep chemotherapy 'in reserve' until the others stop working. I also got a genetic test done on my tumour as some new therapies are genotype specific.

The rest of my treatment history is in my profile - I have been very fortunate to date.

The NHS can work slowly, the best advice I can give is to find out the telephone number of your consultant's secretary - from the hospital website or switchboard and call (and call) them to ask if the MRI has been reported yet and when your dad's next clinic appointment with the consultant is. If possible, emphasize that you can be there at short notice if they have cancellations.

With best wishes.

Edited by member 06 Apr 2026 at 20:34 | Reason: Not specified

User

Posted 06 Apr 2026 at 22:37

There are other reasons why a Prostste may show a higher than average range PSA, a very enlarged Prostate being one of them. However, even if this was the case with your father, unfortunately with a PSA of 52 the chances are that he has prostate cancer. He has had an MRI and may be given a bone scan or PSMA scan. He may be asked to have a biopsy but this is sometimes omitted if Metastases have been seen on scans, the reason being that systemic rather than radical treatment is needed. Some hospitals are exceedingly busy and it may take even longer to consider the results and give a diagnosis and then discuss treatment options. There are different types of PCa and it affects men in different ways. I was diagnosed with spondylitis in my neck and upper spine many years before I had PCa. This usually affects a wider area whereas PCa Metastases usually produces hot spots or small clusters, at least at an early stage when PCa has spread. I would be surprised if two MRI's got it wrong, but sometimes mistakes happen.

The important thing now is to get a full diagnosis and agree a treatment plan in the light of what is found. As has been said, there are a growing number of options and Dad, perhaps with your help, should discuss the best way forward for him with his consultant, which might be quite different to treatment for another person. PCa is a very individual disease.

Waiting for the results of scans and tests can be agony but are something that most of us have experienced and there is no easy answer. Sometimes a chaser may produce an early response. As has been suggested, it would be a good idea for you to attend Dad's appointments if possible and also take a notebook so you can further consider at home because it can be difficult to absorb all that is said, particularly as some of the terms may be unfamiliar.

Hope the small chance that it is not cancer is determined but you should prepare yourself for PCa being diagnosed.

Barry

User

Posted 07 Apr 2026 at 11:54

Hi Stacey.

As the guys above have mentioned the waiting is the hardest part.

Getting contact details is good advice because you will need to chase results, the NHS are very poor at communicating with themselves, never mind with patients.

I've sent you a direct message which you will be able to access through your inbox here.

Best regards Mick. Xx

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