Initial diagnosis of prostate cancer T3/T4

Hello Chris Chris126 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).

Hi Chris (Chris126 ), sorry to hear that you have possibly got cancer.  The initial diagnosis sets your mind racing and terms like palliative don’t help.  That was the term the urologist gave to me 8 years ago!  Until you get your biopsy you won’t know what you are dealing with, so try and do normal things.  Since I was diagnosed, treatments have progressed and will no doubt continue to get better.  All the stats about survival rates are now well out of date and each of us responds differently to treatments, so there isn’t a standard route.  The people on this forum have real experience of living with this disease and while we are not medically qualified, we can offer real assistance at every stage.  Quite honestly, none of us know how long we have got, but a prostate cancer diagnosis (even a bad one) can still mean decades of quality life.   Please ask any questions and come back once you have your biopsy results.  David

Thank you so much for your very detailed reply, which has certainly helped me to begin to come to terms with this new challenge. I now feel in a better place with a slightly more balanced view to my situation. In due course I hope to get my wife to read this when she is ready.

Kind regards

Chris

Dear David, thanks for getting back to me and I will get back to you once I have the biopsy results.

Regards Chris

This is very much a couples disease Chris. As a wife or partner you are catapulted into the unknown, with fear being uppermost. Fear of losing a loved one, fear of how will I cope, fear of being on my own, fear about finances, fear that my loved one will be in pain, fear of talking about it in case I upset my partner. We have both shed many tears, and still do when we hit another bump in the road which is the prostate cancer journey. Bottling things up didn't work for us so we made an agreement to tell each other if we had fears or were feeling down rather than walking on eggshells around each other. The one thing that I have learnt is that I am stronger than I thought and we do cope because we have to. Your wife needs time and reassurance to come to terms with what might be happening, as do you. It can seem a lonely journey so it is a matter of finding your best way to deal with it. Some join cancer groups, others get help from forums, some need therapy or help through mindfulness techniques, some write a diary. I have met some marvellous and inspiring people on the forum who help me through and continue to walk with me through this journey. They pull me up when I have wobbles and celebrate with me when we have successes. It is also a good place to learn about the disease and can open up a personal insight into how to cope with the different treatment strategies and more importantly what you can do for yourself. Give your wife a big hug from me and tell her that things do get better. You can still have holidays and family support will help, life does return to normal but maybe with a couple of modifications.

Hello Chris (Chris126) 

Another welcome to the group from me - we did speak on "New to the Community" and I am pleased to find you have found your way here.

To add to the great posts you have received, yes you can enjoy life with a cancer diagnosis - I am in year 4 of my journey (you can read mine by clicking on my name or avatar) and I have had some up's and downs but the support from our community has been there for me when I have needed it.

As I type this i am sat in the sun - on holiday with my wife in Turkey  and life is good.

We are all here for you - feel free to ask anything, however trivial it may be.

Best wishes - Brian.

Dear Brian (Millibob),

Thanks for this very positive contact. Enjoy the holiday you deserve it. The sun was shining in Yorkshire today which lifted my spirits. I will have a look at your journey.

Very best wishes Chris