Initial diagnosis of prostate cancer T3/T4

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Up until 5 days ago I had been a person aged 70 who had gone through life without significant medical problems. I had a comfortable retirement and could enjoy  family, grandchildren and travel. 18 months ago I started getting senior mens problems - poor urine flow, not quite emptying my bladder. I had a PSA test which came back within the normal limits. The GMP said I probably had a slightly enlarged prostate - take Tasulosin and Finasteride and come back if symptoms get worse. 18 months later I asked for another PSA test and was pleased when it came back within normal limits. However the GMP said it would be worthwhile having an MRI scan just to check on the size of the prostate. I had this done 2 weeks ago. Then last Thursday I had an early morning call from a urology consultant, who apologised for the fact he was just going off on holiday and couldn't see me in person, but that he wanted to arrange an urgent biopsy. I had what he termed was evidence of a T3 / T4 prostate cancer. He could not offer a cure but there were a number of treatments that could prolong life. He started to discuss surgery, radiotherapy, chemotherapy and he would arrange for me to meet his team, when he was back. At some point I stopped listening - the words cancer and palliative care were said - but mentally I had shut down.

Now 72 hours later I find I can't sleep and my wife is asking what he meant by "palliative care" - how long have you got? No you didn't ask did you?

I am sure many on this prostate pathway have had similar experiences and I would be grateful for any suggestions on how to manage my mental health, which is probably in a worse state than the cancer. When seeing the urologist again what are the important questions to ask? I have never taken medication for anxiety or depression but is it worth going down that pathway?

Thanks for any help offered

Chris

  • Hello Chris  and welcome. These first weeks when you are told that you possibly have prostate cancer are the worst as everything seems to revolve around it but you don't have any answers, don't know what to expect and all life's certainties have gone out of the window. Firstly, palliative care does not mean end of life care - it is a term used to provide treatment which will allow you to live as good a quality of life as possible for as long as possible. Secondly, there are many men who have T3 prostate cancer who are still on a curative pathway. Even if you have T4 there are many treatments which can keep the cancer in hibernation for years. Also, if you are diagnosed with prostate cancer then the story you get from an oncologist can be a lot more positive than the one you get from a urologist. There is a good statistic that 98% of men die with it and not of it. Also prostate cancer is usually slow growing. It is very difficult to get a prognosis as to 'how long have I got' as all statistics are based on retrospective data which, by its nature, is based on a time when older protocols were used. In recent years new drugs and techniques have become available, plus how and when to use them, which means that men are living longer and with a better quality of life. My husband is T4 with a very aggressive form and was diagnosed in July 2020 - his urologist suggested possibly 6 months, his oncologist wouldn't predict and says he still has more tools in the toolbox to deal with the cancer as and when it is needed. The deciding factor is how the cancer reacts to the treatment and how well the patient tolerates that treatment.

    As a starter I usually point people to a very good book which you can download for free which explains the diagnosis process and then the possible treatment routes but what is offered you will depend on what type of prostate cancer you have.

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

    Mentally it can be difficult for all members of the family and, as a wife I have suffered from insomnia since my husband's diagnosis. Some people find sleeping tablets help but I found that nothing really helped me apart from getting up, wandering around and then returning to bed with a good book. This jolt to the system makes us re evaluate our lives. We put our house in order and made a conscious decision to enjoy whatever time we had left together and we are now much closer. There has been another thread where we are talking about how much cuddles mean when penetrative sex becomes a problem due to the side effects of treatment but also how the treatment can affect you mentally. No questions are off limits and you will get honest replies so ask away. If you are struggling mentally then you could phone the Macmillan helpline on 0808 808 00 00 . Alternatively some hospitals have a Maggie's centre which is there for the whole family affected by cancer. Some men do derive benefit from antidepressants (my husband does because he suffers from PTSD -he is ex services) so if you are struggling then this could be an option for you to discuss with your GP. 

    Finally, things do settle down once you have had all the tests and got the diagnosis. You might need to make decisions on your treatment route and we have many men who have outlined their experience in their profiles which you can find by clicking on the chair or picture by their name. In the meantime the best thing you can do for yourself is to find things to distract yourselves and to try and get as fit as possible as this really does help to mitigate some of the side effects from the treatments.

  • Just to pick up on the use of Finasteride and the PSA results - the Finasteride can affect it so your actual PSA is double the level recorded on your blood test so does this bring your recent PSA level into the area of concern, i.e. above 5ng/ml (the limit used can vary with different health authorities).