Cancerous tumours in kidney and prostate. I also have Perineural Invasion (PNI). Worried about spread. Would more scans help at my current stage of diagnosis?

Good morning, I am Sean,

I have recently been diagnosed with synchronous cancers in my kidney and prostrate, perhaps more bet that will be in the sequel.

Although my 3 tumours in the prostrate are Gleason 3+4, there does seem to be a lot of it and some 25% at Gleeson 4, also I have something called Perineural Invasion (PNI) which is a significant transport mechanism for cancer cells and with a family history on both side of metastasis, I am concerned about spread. The hospital and MDT are categorising my situation as high risk due to the PNI and a second malignant primary tumour.

The tumour on my kidney  (identified by CT scan with enhancement on contrast) has not had a pleasure of a biopsy (the prostrate biopsy was so much fun...NOT) so unknown in severity however, it is only 3.5 cm so unlikely to be anything more than T2, so not too worried about that, it is exophytic so a quick partial nephrectomy should sort that out.

My concern is the PNI, I wanted to know if tests (bone and PSMA PET) are encouraged at an early stage to check for spread and take remedial action or given the that fact the 3 tumours are Gleeson 3+4 does not justify the costs to do bone scans etc

Living in North Wales, we do not have much in the way of facilities for further tests above MRI and CT, the costs to the Wales NHS trusts and internal policies seem to limit such tests if you are already in or close to (Gleeson 8 and above) a Metastatic state.

Some background information that may help, my PSA was 10.5 and risen to 11.5 a couple weeks later back in early April. 

From the first PSA report it took some 84 days to have a final diagnosis of prostrate cancer. I had to push for the CT scan to determine the status of kidney lesion which initially showed on my MRI in April, the radiographer suggested the CT scan, which did not happen until mid May and showed to be malignant.

Due to the lack of surgical consultants etc it was suggested I take a hormone and radiation strategy for my prostrate and defer the kidney treatment until later however, on the back of my own research I believe a radical prostatectomy may be better in the long run. I appreciate there are no wrong decision by in large on treatment but given the potential for spread, I would rather take a radical approach and remove the cause albeit there may be a need for additional treatment afterwards, e.g. radiation etc

So in summary, just a heads up on whether further scans given a presentation of synchronous tumours and PNI are important at my current stage of diagnosis

Thank you for any help or experience you may have had that can assist my thinking and questions I should be asking, thank you and look forward to hearing from you

  • Hello Sean, and thank you for your post

    I am sorry to hear about everything you have been through. This must be a difficult time.

    As Cancer Information Nurses, not being involved in your care, we cannot provide a medical opinion or advise on whether or not further scans will be helpful. This is something you will need to discuss with your hospital team. Everyone's situation is individual, and treatment and scans are planned depending on the situation.

    If you are concerned that you may be missing out on tests, it might be worth thinking about having a second opinion, as this may help to clarify your situation.

    I am sorry we cannot be more helpful on this occasion. Please feel free to come back to us. If you would like to talk things through with one of the nurses on the helpline, you would be welcome to call us on 0808 808 4040,

    Jemma