Newly diagnosed with metastatic prostate cancer

This is the reply I just gave to someone else in a similar situation.

The best thing to begin with may be to ask the oncologist to explain the full diagnosis to you, and just listen carefully. Take notes to help you remember the important stuff later. Unless it is covered by the oncologist, I would then ask
- exactly which bones is it in
- what is the treatment plan and why - is early chemo being offered, for example?
- is there anything they can give your OH to strengthen his bones
- if there are any mets in the spine and spinal cord compression might be a risk later, ask them to explain the signs of SCC to you so that you always know the danger signs
- any dietary advice (which may depend on the treatment plan)

Hi my husband has just been diagnosed. PSA over 1000 and it has spread to bones and nymph nodes. He has been started on hormone injections. We see Oncologist next week and want to know what sort of things may be offered and how others have coped with various treatment. 

Hi, I was diagnosed in Feb 17 with extensive bone mets and PSA 1500---at the time I had no idea there was anything seriously wrong with me. I had just come back (end of Jan) from a "boys" golfing break in Spain, and all I was really suffering with was general aches and pains, and a headache, which I put down to old age catching up with me, (64), golf several times a week and general maintenance of a very large garden/plot. However following some excellent and quick initial treatment by the NHS I soon had a prostate biopsy which confirmed PCa followed by x-rays, ultrasound, a CT scan, MRI and a bone scan to identify spread. I started hormone therapy on the same day as I had the biopsy, and other than regular sweats, ( male menopause symptoms), I'm doing ok. I've also just about completed my 1st (of 6), cycle of chemo with my 2nd cycle starting next week, and again so far only one bad afternoon where I felt completely drained and wiped out. Other than that I'm still walking and cycling regularly, although I have been advised not to play golf until chemo ends, which is a pain!!! As an aside I've also completely changed my diet, no red meat or processed food, and very limited dairy products, which has now been replaced by loads of soy products, veggies, fruits, and vegetarian substitutes, plus still eating fish and chicken, and whilst I'm definetly missing my regular bacon/sausage butties I've lost 2 1/2 stone, ( which was needed), and feel much better for it? Just wish I'd done it years ago without the illness prompting it?? Anyway hope this helps and if you need anymore info from this "newbie" then check out my "the road ahead--valleyboy" blog on this site. No one knows what the future holds but I hope everything works out ok for you and yours, all the best J.

Docetaxel started yesterday. So far all seems fine and my husband has gone to work today which is what he wanted. I thought I had read through everything I could find on this but had not come across Filgrastim injections. Has anyone else had them? They are to be given for 5 days starting on day 4 to reduce the risk of blood counts going low.

Your journey has been almost a mirror of mine. Was diagnosed Sept 2016 PSA 1000+, Gleeson 9.5. Hormone therapy started straight away, with a PSA down to 130 within six weeks. Started chemo (Docetaxel - 6 session, three weekly) PSA went to 0.15 after two sessions; having had a scare with very low white blood cell count along the way. But developed anal abscess that became a fistula and need surgery to correct (ouch!). After surgery was fully healed chemo was suspended as it was thought that the remaining sessions wouldn't be helpful but I stayed on the hormone therapy.

A blood test in March revealed that my PSA had risen to 11 and it was decided to resume chemo again. As they also wanted to start injections to support metatistised bones I needed to have an abscessed tooth removed; this took three weeks to heal. Having started chemo again I've just had the second cycle to this new regime and my PSA has risen to 31. Obviously this is very disappointing but I'm hoping that all these new interventions will get on top of it but only time will tell. Feeling good at the moment and I'm sure it will come around eventually.

Hope this helps in some way and underlines that it's not a straightforward journey for any of us. Best of luck and best wishes for your on-going journey.

Boyd