Whether to have a new PSA and an MRI scan after 24 years with elevated PSA (12-16)

  • 17 replies
  • 109 subscribers
  • 363 views

I am 78-year-old, taking finasteride for an enlarged prostate. I have just had an appointment with a consultant urologist, following concerns about nocturia (x 3-4 times a night). DRE showed a ‘craggy prostate’ (this is not new: an earlier DRE 6 years ago also showed a slightly nodular prostate on the left). Ultrasound scan shows a 117-cc prostate. The consultant recommended a new PSA test and an MRI scan.

Background

I first started this ‘journey’ in July 2000 when I consulted a urologist about discoloured semen. However he was more concerned that I had a PSA of 13.4. and recommended a biopsy. The biopsy in September 2001 was clear. In March 2003 PSA was 12.4 and another biopsy was recommended. That was also clear except for a tiny area of PIN in one sample. November 2003. PSA 12.9

March 2005 PSA 16.2. Yet another biopsy was suggested, this time under general anaesthetic. This is where I decided to call a halt and to have no further PSA tests or biopsies and have maintained that position for the last 19+ years.

My problem following the recent consultant recommendation now is that I now have to decide what action to take:

1.       Do I continue my policy of non-engagement with PSA or would it now be wise to have a PSA test and MRI scan? Having had an elevated PSA (12-16) and survived the last 24 years with no obvious symptoms apart from urinary problems, do I continue in the same way?. This is of course a gamble, but it is one that I have taken for the last 24 years and I am still here (for the moment at least!).

2.       Do I take the consultants advice. My concern with this is that if I have a PSA and MRI I would again be on the merry-go-round of tests with the attendant stresses that I deliberately decided against 19 years ago. An MRI would probably show some cancer (at age of 78 most men probably have some cancer?). Even if low grade this could lead to possible over-treatment. I really want to avoid active surveillance with its continuous and stressful round of continuing PSA tests, MRI scans and biopsies. This would  mean a life dominated by continuous anxiety, and rather than this I would perhaps rather continue the gamble that I have taken, but I remain rather undecided.

Has any else faced a similar dilemma? If so I would appreciate your experience and advice.

  • Hello  

    A warm welcome to the online Prostate Community.

    That's some story - personal opinion, large prostate, PSA of 16.2 - take the Consultant's advice, PSA test and MRI.

    I know you don't want the stress of treatment and you are taking age into consideration, but you could be living with a ticking time bomb that could kill you! Isn't it better to know just where you are at with this cancer?

    That's my personal opinion - follow the Consultant's advice.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hello  .

    A warm welcome and I can understand your dilemma. Are you aware that Finasteride reduces the PSA by 50% so your actual reading is double? Do you know where the PIN was located as I believe certain parts of the prostate carry a greater risk of it developing into full blown cancer. None of us on the forum are medically trained but can only recount personal experiences so here goes. My husband had a PSA test in 2010 which was borderline for his age at 66 so he had a biopsy which showed PIN and ASAP. The biopsy was repeated a year later with no change. He chose to be monitored regularly,  as he was prone to UTI's, with PSA, DRE and scans which showed no change for 10 years. 6 months after his last visit to the Urologist he started to feel unwell and thought it might be a UTI or prostatitis so back to the Urologist. The upshot was that the area of PIN had suddenly erupted into full blown advanced metastatic prostate cancer at the age of 76. From a personal point of view I would get checked out to hopefully put your mind at rest and then re-evaluate what you are going to do based on expert opinion.

  • Hello Brian

    Many thanks for your response to my post. I suspect that others will echo your suggestion that I should take the PSA/MRI route and it will help me to decide what to do.

    Thanks again.

    Jenward

  • Dear Alwayshope

    Many thanks for your response to my post. I was very sorry to hear about your husband.

    The PSA levels that I mentioned pre-dated when I stated finasteride which was in 2016.

    I appreciate that things can change rapidly even when one is being monitored regularly as your husband was.

    Thanks for your advice - the MRI people have just rung up to book me in so will have to decide soon!

    Best wishes

    Jenward 

  • Hello  

    It's not a problem, I know how aggressive this cancer can be. I set off on my personal journey with a biopsy as a Gleason 7. After my TURP operation the chips were checked and I was regraded to a Gleason 9!! Grimacing.

    Although I am not suitable for surgery I like to keep an eye on my PSA  even though I am 30 months down the HT/RT journey. - You can read the full story by clicking on my avatar.

    If you need anything else just give us a shout. Keep in touch and let us know how you get on.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hello Brian

    Thanks for your reply. You have had quite a journey and I wish you the very best for the future.

    Best wishes 

    Jenward

  • Hi J

    Wow, you've done well no testing for many many years.

    If I was in your position I think I would have a PSa and a MRI which are relatively simple to do.

    U can tell a lot from a MRI, see what the results are and come back on here , also talk with the consultant obviously.

    By the way what was their reaction when u said u didn't want more testing

    Best wishes 

    Steve 

  • Hi Jenward,

    Hello and very sorry to meet you here under these circumstances.

    You have a refreshing philosophy on life and it is down to personality what should be the next step. It is, as you said, very stressing to have the tests, treatment diagnostic etc. For us it was no brainer. We wanted to know the full diagnostic and start treatment immediately. Your philosophy on life is different and I totally respect that. I can just say from our experience that after 3 months you settled in to the new routine and live life almost normal. 

    Lots of love and good luck with your decision. Keep us updated

    Dafna

  • Hello jacobanddafna

    Many thanks for your helpful reply. I suspect that many would share your approach and I am probably unusual in my philosophy. It was useful to know that you found the post-diagnosis routine acceptable and easy to live with.

    Best wishes and good luck

    Jenward

  • Hello Jenward and welcome to this forum! I am sorry to hear about your concerns and the personal dilemma this is presenting for you. For what they are worth - here are my thoughts as a wife of a man who had his PSA monitored over several years (without biopsy or scans) until his PSA reached 10 in 2022, aged 75, and further tests revealed prostate cancer which needed to be treated:

    1. I think you have felt that regular testing since 2000 would have caused lots of anxiety and unnecessary stress and treatment for yourself. As we all know, some prostate cancers are very slow growing such that some men will die with it rather than of it.  Others are very aggressive and, left unmanaged, can be life-limiting..

    2. The fact that you are now 'concerned' (is that the right word?) suggests to me that the balance has somewhat shifted for you recently. You are now worrying about whether or not you should be tested. My question would be, if you don't have tests, will you be more worried going forward in wondering about the 'what if's?' and 'not knowing'.?

    3. You mention the possibility of over-treatment. I think this is a very valid question. However, the scans of today and even the procedure for doing biopsies are so more accurate than some 20 years ago. Going through these tests would give you, hopefully, a much more precise diagnosis and be able to tell you whether or not there is any cancer and how  aggressive it is and whether you can carry on as before or would be better advised to have treatment. You would also be advised about treatment options but nobody can force you to have anything done to your body without your informed consent.

    I would suggest you take a look at www.prostatecanceruk.org for their extremely informative documents on the diagnosis, treatment and management of prostate cancer. Here you will get evidence-based knowledge you need to make a decision for yourself. But, by all means, do come back to us if you need details of how we have experienced the various treatments etc.

    We are not prostate cancer physicians on here but we are all used to all sorts of queries and have varied experiences along our own cancer pathways. However,  I would add that we will all respect whatever you chose to do as you go forward and there will be no judgements made and every support given.

    I do wish you all the very best and I really do hope that you arrive at a decision that is the best for yourself. It would be lovely if you could keep in touch and let us know how you get on :)