Me again

Hello JCat 

No problem, we know where you are with this and happy to answer questions:

1. The second CT scan may well be to a larger area of the body rather than just the prostate and pelvis.  Also it will be a check for any comorbidities before administration of chemotherapy (he may well get a full blood test too).

2. The Gleason 10 (5+5) sadly is top trumps with Gleason scores, it's the most aggressive HOWEVER once treatment starts then it matters not as the treatment will stop any further spread.

3. Dr Google has information from around the world. Everyone's journey is personal to them. Here we rely on information, diagnosis and treatments used in the UK. My tip - don't Google things. We do have Community members from outside the UK and some other countries do things differently.

4. Life continues. My personal thread is called Que Sera Sera. You can't go back in time and you need to trust your team. My wife has been there for me throughout over 4 years and all my adult children are very supportive.

As you say you work in oncology (my wife was a nurse for 40 years) everyone has a personal journey - we all think differently, we all worry about different things - you will see that people with a positive outlook and the ability to control their worry and anxiety tend to have better outcomes than others.

I hope the above helps - carry on asking questions - carry on helping your dad - he deserves a long, happy and healthy retirement.

Best wishes - Brian.

This is just the place to ask questions. I’m very glad you did.

The calculation of gleason scale is just a method. It’s a number. It’s to give a measurement to everyone so they know how far you are in terms of cancer. It’s not an x-ray, a CT Scan or a Bone scan so it’s not as informative as it’s just a number. Relax. It’s the diagnosis that’s important.

The googling and chat-bot idling when you’re looking for answers that we are to slow to give you, is ok. I say it’s ok but you need to firstly understand that the answers you will get will be mostly from the USA and their health system is very different to ours so take it with a pinch a of salt. You can stop but just be careful of what to believe and never take one answer from one script as gospel. Dig around and look for other data that backs it up and always ask here too. We all look from time to time.

Talk talk and talk. It’s the best thing ever. Talk to counsellors, talk to the specialist nurse you’ve been given, talk to the consultants when you can and you can always talk to us. Your new normal isn’t quite the same as your dad’s new normal but talk to him too. It’s great to talk. Ask for help if you need it, don’t be afraid.

Take care

Thankyou for your help Brian, it’s so much to navigate at the moment but your words mean a lot. That’s reassuring to know about the Gleason score once treatment starts, and I have seen another member post elsewhere that their Gleason score dropped which I didn’t realise was possible too! 

It’s got its positives and negatives with myself working in oncology but I’m hoping I can use the skills to advocate my best for him along the way. You are absolutely correct that having a positive outlook is a huge part and I certainly do see this on the daily.

I’ll make sure to have a read of your personal thread too, Thankyou Brian! 

Thankyou for your response Mr U. I have certainly found the talking the most helpful part and feel so grateful for the community on here. Talking to people on their own journey is certainly what I’m finding the most valuable at the moment and really putting my mind at ease so Thankyou again 

Anytime,

Just ask, or chat, or tear, just keep in touch and ask for help.

Take care

Hi JCat 

Just a small add on to the excellent answers you’ve had already. I too find it difficult to not google things and now and again I slip into it. Firstly there’s excellent advice from MacMillan, Prostate Uk. But if you do find yourself randomly googling, it’s really important to check the source of this information and the year. You could find yourself looking at something that’s so old that it’s no longer relevant. Treatments move on quickly and each year there seems to be something different or new. Men are living longer now with incurable PC than they did 10 or even 5 years ago and the last thing you should be reading is old data and AI answers that are made up of valid information and complete nonsense from anywhere.

Hope that helps with the Googling.

L 

Hi JCat good, solid answers so far.  One important thing to add: the dread inducing statistics on Google are often based upon research, treatment and patients’ outcomes from many years ago (certainly the early 2000s), but treatment and effectiveness has moved on so much since then.  Longevity and quality of life are so different today, and the research / new treatments and drugs are being added all the time.  Please remember that.  Right, I’ve got a plane to catch to the Alps.  AW

Hi JCat,

There are many on here who are far more knowledgeable than me on the many and varied details on here that are available to you if you want  them.

I have been for MRI scans,CT scans and PET CT scans  as requested by my oncologist and then returned to my 3 monthly appointments with some trepidation.

However my only questions have been very basic in line with my own philosophy that the medical team know far more than me in how to interpret the scans and then offer the most suitable treatment.

Perhaps I am being very naive but do I really want to know if I have a prognosis of 2,5 or 15 years in front of me.Given my age the latter is most unlikely but its certainly not unusual for those in their 60s or so.

I feel reasonably fit and active,I enjoy my food ,family and hobbies and I think the key is whether or not you trust your medical team.I have no reason to mistrust mine so far but if I did I am sure that I would be more inquiring.

In the past I have tormented myself with compulsive Googling which almost always finished in tears because the thing that stick are the “what ifs “ it being the worst outcome.I fully understand that it is a compulsion,but no matter how subtly you word your search the same old sites and information remain the same.

All specialists understand this compulsion whether it be related to cancer or any other medical issue.
You only end up very confused and as with any habit it’s tough to break,but it will diminish with time.

Try not to let the good things in life pass by whilst worrying what tomorrow may bring and if you think that I follow my own advice all the time then you would be wrong.

Thankyou I think that’s really useful information, I hadn’t even considered that information is changing all the time as research progresses. This definitely makes me think twice about going straight to google! Thankyou so much