Terrible journey so for.

Hello juda8240cd38cb 

A warm welcome to our exclusive club, although I am so sorry to find you here.

Sadly your story isn't unique as many of us have had issues with either our diagnosis or treatment.

I am not a great believer in asking for a prognosis - we have members here who were given a couple of years and they are here 8/10 years later. I do believe a positive attitude will get you through this.

Please do give our Support Line a call on 0808 808 00 00 (8am to 8pm 7 days a week) - They will help you with "getting your head around this", they are a great set of people.

I am one of the "lucky ones" I was placed on HT within a week of me meeting my urologist but my circumstances were not the normal ones associated with PCa. (you can read my journey by clicking on my name or avatar).

Feel free to ask any questions - we will all get back to you.

Best wishes - Brian.

Sounds like you need more support and you’re in the right place.

HT is normally given as an immediate and important first treatment to put the cancer to sleep. It works very well and has the potential for being a couple killer due to the changes to our sexual health and interactions.

If what you’re asking is should your hubby have  been put onto sooner to HT, then probably. If your question is about the prognosis of 2-10 years then this is harder to analyse.

The Gleeson score is important and future tests and changes will obviously affect the rolling assessment of how well he is. The biggest challenge is in your head and I know how hard this is to understand and get to terms with.

Getting on with it - is ok, but we all need a bit of help from time to time and I’m glad you’ve asked here. Keep asking questions until you have no more questions. We will all try to help. Our bodies are very different but we all share the same problems. You’re not alone.

Thanks Brian, I do wish we hadn't asked for a prognoses, I think this is what i am struggling the most with, how can you go from it will be cured to it wont.

Thanks MR U, my husband is looking into support groups, so hopefully we will get the help we need.

The curative pathway is where we all want to be but lots of us are on non-curative. The difference is easy to see in that my PC will always be with me (non-curative) but it’s more likely that something else will get me in the end. In other words PC will always be there but it’s just another problem. Most symptoms and treatments work well and you will get used to keeping the cancer at bay rather than getting rid of it totally.

Everyone wants to know the prognosis because we all like to plan ahead. I would suggest you should get planning and enjoy each day, week month and year you have, because today we are all alive and want more than a guessed date in the future. Dint be to hard on yourself, try and be yourself like you were before the prognosis. Believe in hope and enjoy everything you can.

Thanks, I need to calm myself down, my mum passed away very quickly with bowel cancer in 2016, I am scared that I will go through the same thing with my husband

Hi juda8240cd38cb 

we started our journey last March and my OH didn’t start treatment right away . Long story short . We were told he was curable and the  proverbial rug was pulled and he’s palliative treatment due to one left femoral lymph node . He is on HT and had 6 blasts of RT.  His PSA is undetectable  and he walks miles every morning and goes to the gym at least three times a week .We are living a new norm . We went on holiday in April and going again in October.

This group of people on this forum have helped us tremendously over the past months answering and giving support .

Please ask any question whether you think it’s trivial or important as we are all different . We stress at different levels . none of us are medically trained but we all give honest support via experience. 

we cry, we laugh , we support in this amazing forum But  most important you have reached out. 

best wishes & hugs 

Liz & OH xxx

Hello juda8240cd38cb 

Sadly PCa can progress and I have seen people go from Active Surveillance to incurable in 6 months!! !!

I myself am sat on that fence - as I write this I have had 4.5 years on a "curative pathway" but I have a rising PSA and have a meeting next month with my consultant,however I know where I stand am happy with my team.

From being ill and my personal diagnosis it took 12 months for it all to fall into place and since then I have been a changed person. I don't worry anymore (my team are doing what they can) - I have more holidays, I don't work as hard - I spend more time with my family and Mrs M says I am a better person for it. I am 70 in October and I just love making memories - cancer lives with me but doesn't control me!!

This is me though and I almost died so I have a different outlook on life. I am sure things will settle down for you, the HT will keep his PSA down and you can start to enjoy life again.

Best wishes - Brian.

Thank you Liz and OH, your words and everyone else is helping, we too are away on holiday in September.

It does make me think if HT had been started at the beginning it may not have spread to the lymph nodes behind his tummy, but we are where we are.