Confused about diagnosis severity.

Hi Snaphook Bob sorry you have joined our group but welcome.  We generally don’t use the ‘terminal’ word on here but divide diagnosis into ‘curable’ or ‘treatable’, but before being able to give any further into we need to understand your start point.

Are you able to provide a Gleason number (usually something like 4+4) and a staging (TxNxMx) plus any other info like treatment given and your age.  Ideally pop that on your profile (the armchair) or just reply here.  We can then give you some idea of a way forward but in my own case I was given 5 years to live and that was over 7 years ago, so even with a sensationalist  ‘terminal’ diagnosis we are all different and respond to treatments differently.  Best wishes. David

Hello and welcome Snaphook Bob .

This is a subject which has generated a lot of debate both on this forum and others. In a sense all prostate cancers which have metastasised to the bones or distant viscera or organs are classified as terminal but I think a better description is not curable but treatable, but even the not curable bit is being challenged nowadays. My husband is T4 diagnosed with visceral mets and distant lymph node involvement in July 2020 and is doing extremely well at the moment. We had a meeting with the oncologist last Friday to discuss how recent targeted SBRT has done and his comment was that my husband's type of cancer is very radiosensitive whereas the chemotherapy he had last year was not fully effective. The key thing from this conversation was that everyone's cancer is different and it is a matter of finding the treatment which works best for that person. There have been a plethora of treatments developed in recent years with more in the pipeline plus they are refining the optimum sequencing and timing of the therapies which keep pushing the prognosis further out. Our oncologist refuses to give a timescale on prognosis as long as he still has more tools in his toolbox and my husband responds favourably to them. We have discussed possible future therapies such as nuclear, radioligand, PARP inhibitors, immunotherapy, Bipolar Androgen Therapy....... you get the picture but some of these are dependent on having the right genes so we are waiting for the results on the genetic screening which has been carried out. There are members on this forum who were diagnosed with bone mets several years ago. It is sad that Sir Chris Hoy has come out with the timescale of 2-4 years and I hope that he surpasses this. His statement has caused alarm for others who have recently been diagnosed with bone mets but what it failed to do was quantify the number or where the blighters are lurking. If it is in a limited number of places then it is possible to spot treat, if more widespread then chemotherapy, and in particular Triplet Therapy with ADT, ARPI and chemotherapy are producing good results.

If you want to know what is available and current thinking on treating advanced prostate cancer then can I suggest you watch this video.

https://youtu.be/-RVVq0uDAEE?si=Qu8fHlxPcQLn4Ipm

In the meantime if you have any questions then please ask but I hope that your treatment goes well. It can be a bit of a rollercoaster journey - from personal experience my husband has had 3 recrrences so far - but staying fit, modifying lifestyle and overall staying positive are important factors in fighting this disease. Right from the start our oncologists said they could do 50%, the other 50% was down to us.

Thanks for the reply and apologies for my poor choice of wording.  My first post!  To bbe honest, I've been bombarded with numbers, letters and hard to say medical names that I'm a little bewildered!  

Fortunately my partner is there as a listening ear and she tends to answer the questions on my behalf.  I'll look into it and see if I can find anything out.

Having read through a few posts on here now, I already feel reassured and looking forward to my future.  I've already changed my diet accordingly and other changes are following.

Thank you for this.  It's all a little bewildering but I'll get my head around it.

Hi again Snaphook Bob , apologies if my answer came over as a rebuke - not intended in any way from me.  I think AH (Alwayshope ) said roughly the same thing but much more eloquently!

It is very confusing particularly at the start with numbers and letters as all these terms were not in our vocabulary at the start of each of our journeys.  It is a learning curve and great that your partner is with you for this.  I know when I was being hit with info at the start my OH and I came away sometimes like rabbits caught in headlights.  Any info you can provide will help, do you know your PSA score?  Once you are under treatment as you are, then there isn’t any rush.  David

We are all confused at the beginning so a good starting point is this book which you can download for free. It explains what all the numbers and letters mean, diagnosis and treatment options plus where to get support if you need it. When you have bone mets the doctors often suggest calcium and vitamin D supplements plus a biphosphonate or denosumab to help protect the bones so something to check out if it hasn't already been prescribed.

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