Hello, advice please

Hello Polly1912 and welcome from a wife whose husband has advanced metastatic prostate cancer. He was diagnosed in July 2020 and is still going strong. Since his diagnosis things have moved on in terms of treatment protocols and drugs available which is good news for our men giving many more the chances of being treated with curative intent but even if that is not possible there is still treatment available for many years for most of them.

False positives can occur but are rare with that level of PSA. Our community champion Brian Millibob had a PSA above 180 at initial diagnosis and was still treated with curative intent although he is now finding out if more treatment is needed for a recurrence.

Try and take one day at a time. Keep a note of all conversations and contacts but hopefully your husband should have his scans and biopsy soon which will give you a better idea of what you are facing.

There is a good book which you can download for free which explains things.

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

We have just had a call to say he has a bone scan arranged for tuesday

Thank you for your reply, I will have a look at the book too

There are lots of similar stories here and lots of great help, so ask away. My own story has a similar start point and you will be worried and going around in circles trying to make reasonable judgements with no new reliable data. So it’s a tedious waiting game. Nothing alarming is going to happen while tests are made and reported on so as everyone will tell you; record all the advice from experts, if you’re unsure (and you will be unsure) ask loads of questions, try and stay calm, and distract yourself by living for today.

Millibob will be along soon with some great advice.

When you get new data, tell us your thoughts and our calming replies will steady your ship. Good luck.

Hello Polly (Polly1912) 

Welcome to the group, although I am so sorry to find you here. My initial PSA was 182 and I am still being treated with a "curative intent". We are all different and react to the treatment differently.

I would stick with the NHS - once you go private if you need some of the more expensive treatments or medication you will find rejoining the NHS not too easy.

Best advice - get through the various diagnostic tests, MRI biopsy etc and once the results are in then your MDT will come up with a tailored treatment plan.

Ask any questions here, nothing is too trivial. You can read my journey by clicking on my user nane or avatar.

Remember 98% of men with Prostate Cancer die WITH in not OF it.

I hope this helps.

Best wishes - Brian.

I agree with what Brian says but once you have all your results it could be an idea to get a second opinion privately at a centre of excellence just to make sure that you have all your options laid out. Also with private health insurance you might be able to access complementary therapies which some people find helpful e.g. my husband has an osteopath to help him with his back pain from when he broke it who he swears by but she is also able to help him with his mood.

Thanks everyone, I already feel alittle better and my partner has read through these comments too which has been helpful. Will await the bone scan on Tuesday and see where it takes us!

I think my head has certainly gone to all different scenarios and worrying about the future, next month, next year, all the "will we be able to do this or go here, will I still have him at Xmas, next xmas etc etc" thoughts are going crazy.....so reigning that in and only focusing on today is what we need to do at the moment

I am going through the same as you right now.  My husband is 55 and it’s all come as a real shock because he had a PSA test as part of a routine check up, no symptoms or problems.  His biopsy is tomorrow.  This all started at the end of April and I have had felt every emotion possible.  I have almost driven myself crazy researching everything I can find and there have been times when I have just wanted to scream out for somebody help, although I’m not sure who.  This forum has helped though.  I am now trying to take it one step at a time, easier said than done.  I read something on here, expect the worse, but hope for the best. But I have realised that it’s probably the better cancers and is certainly treatable.  One day we will look back at it and realise it has brought us closer.  I know how you feel with worrying about the future, but let’s take one day at a time xx