Recently diagnosed without NHS. PSA result only 2.9.

Hello Everyone, I have been having NHS treatment for another cancer, apparently successfully so far.  Recently I had a PET/CT done privately as this was not offered to me on the NHS and these scans have shown I have prostate cancer.   I have had a PSA test on the NHS and the result has just come back at 2.9.  I am concerned that this will not have been flagged up to my GP as bei)ng outside the normal range and am worried about my referral path to a urinary oncologist.

Is there an obvious pathway for me to get referred for prostate cancer treatment?

(I have been taking Tamsulosin 400ug once daily for over ten years.

  • How old are you? What does the PET Scan report actually say and what are the scores recorded in that area?

    What you need to do is take the Scan and report to your GP and ask to be referred to a urologist on the basis of the PET Scan.  Alternatively you can ask to be referred to a urologist privately - have a look on  line and see if any of the urologists at your local hospital have a private practice and then you can ask to be refferred to them privately and after the first consultation you can move onto their NHS list if treatment is required. You usually need to be referred by your GP. A private consultation costs from £200 to £350 ask the price when /if you make the appointment.  If they offer you any tests there and then you will have to pay for those as well.  

  • I presume that the Pet scan is showing the cancer confined to the prostate and not spread elsewhere?

    I think that you would need a biopsy to confirm the cancer especially with a low PSA.

    I would definitely check that the scans done privately were correct before doing anything else.

    As Freefaller suggests, go to your GP for a NHS referral and take it from there.

    Steve

  • Thanks for your post, freefaller.  I'm 74.  All I know from the private, London, oncol. is that the region of the original cancer (oesophagus) was clear but that cancer showed in the prostate.  He'd seen my earlier (original NHS) PET scan for comparison (no mention of prostate before).  I asked for his report/scans to be sent to my NHS oncologist and GP.   No idea if they've seen them yet.

    I spoke to my NHS GP and on the basis of what I told him he ordered the PSA test.  I'll leave things a few days and then try to speak to him again (or, I expect, another arbitrary GP in the practice) to ask what's next.  I was just a bit concerned that otherwise the "normal" PSA measure of 2.9 would mean my case would get shelved.  I will only go private locally as a last resort.

    Best regards.

    Fortie
  • Thanks for the post, Grundo. I am assuming that the cancer showed only in the prostate.  (As it happenes, I did ask the London oncol. if anything showed in my colon, because there had a bit of concern re. a couple of polyps which hadn't been biopsied a year or so back.  He said there was nothing cancerous there.)

    I don't want to doubt the judgement of the private people I have dealt with.  After all, they have been givers of good news about my oesoph. cancer!  Of course, I really want to have the NHS looking after me, and will do what I can to that end (see my reply to frefaller above).  I am a bit miffed, though, about the NHS not doing a PET after my treatment.  I'm told it's needed to distinguish between scar left from successful therapy and cancer left from unsuccessful therapy.   

    Regards,

    Fortie
  • Fortie

    If the clinic is confirming that u have PC what r they suggesting as your next step?

    As u have said perhaps try and move to NHS , when  they see the scan/reports they will hopefully do a biopsy.

    In an earlier post u mentioned that scans/reports should be sent to your GP.

    It could be worth asking for a copy of scan reports to be sent to yourself as well ,. Just for info.

    Steve

  • The NHS  seems to be reluctant to do scans after some  therapies/procedures and operations because all that will show is the "mess" for want of a better word, left after that particular procedure.  PET Scans do not show up really small areas of cancer so maybe at the time you had the first PET Scan if there was cancer present in the prostate it was too small to show up.  PET Scans can show other things that are not cancer from treatment received years ago.  My wife had a PET scan for a possible tumour in her lungs - there was one but it wasn't cancer and barely showed up on the PET Scan as any different but the sites of previous surgery/treatment elsewhere in her body from 3 and 8 years previously showed up with the higher readings - bordering on cancer at 2.8 - of course they weren't but that is what the Radiographers report stated so her consultant made a very rapid appointment to tell her and of course she told him of the previous surgeries and got the other surgeons offices to contact her Respiratory consultant who all had to look at the PET Scan and confirm that this is exactly what they would expect to see.  This may be why the NHS are reluctant to use PET Scans after previous treatment as it would seem they may be quite hard to interpret - that's my take on it anyway maybe ask your consultant about it. 

    To pick up on Grundos point I would definitely ask your consultants - whether private or NHS to copy any scans xrays and, letters etc to you.  When you get them then make an appointment to see your GP and discuss them - try not to obsess about anything contained in them because medical jargon and the way reports are written can confuse you and make things sound worse than they are just from the language and phrases commonly used.  If you ask for copy scans you may have to take a disc into the radiography department and pay a small amount to have it copied but I have never had any problems getting this done whether through the NHS or Privately.  Another good reason to get the copies of reports, letters etc sent to you is that when you receive yours your GPs copy should also have been received so ring the surgery to make sure it has been received and make an appointment.  This ensures that the copy going to your GP has either not been lost or filed and not been read or acted upon.  This again happened to my wife when a letter from a consultant lay on the file for 5 years and it had asked for a change of medication - she only found out because her condition got worse and one of the Docs int he surgery went through the actual paper file with her and found the letter and asked her why she hadn't been on this medication! Also, 6 months after my Radiotherapy I went to see a cardiologist privately as there wasn't a cardiologist at our local hospital and he asked for me to bring a medical history with me from my surgery - they provided me with one but nothing mentioned on there of my prostate cancer, hormone therapy (which I received at that surgery) or radiotherapy - obviously a huge time lag in getting it typed into the computer.  Always be proactive and check.

  • trouble is normal PET CT scans show tumours but not prostate  tumours.

    PSMA Pets will generally only show prostate tumours if PSA after prostatectomy is over 0.5.

    The CT part of the scans should also show some abnormal structures but the onus is on the detection of tumours through the glucose and the metabolic effect in normal PET scans.

    They are loathe to do all these scans because they cost a lot.

    all the best

  • Cost is always a considerastion unfortunately unless you can pay for a scan yourself ir have an insurance that weill pay for one.  My wife's healthcare society paid for one for her back in 2015 and it cost £1200 in an NHS Hospital as there isn't a private hospital near here that has a scanner.

  • Thanks for your interesting post.  See my post  to you all below.

    Fortie
  • Thanks for your interesting post.  See my post  to you all below.

    Fortie