What should we be asking consultant?

I have the same diagnosis and am seeing my consultant on Wednesday this week with my dear wife. You will find lots of wonderful people on this site who can help you , and have provided me with loads of support 

one of them kindly sent me this link to some very useful information about advanced prostate cancer which may help you with your questions . These are free and available as PDF

https://shop.prostatecanceruk.org/our-publications/all-publications/advanced-prostate-cancer

please remember this group is yours and is here to help you . Whatever questions you have please ask and someone will be along with there experiences. I personally try to connect to people with the same diagnosis so we can share our thoughts, fears and hopes on our journey together, but everyone is so supportive here. I hope your meeting goes well 

Thank you so much for replying and for sending the pdf link, really appreciate it.  I hope all all goes well for you too. 

Hello Diane - A warm welcome to the online Prostate Cancer community - you are in the right place for help and advice.

First off - can I ask you to update your husband's profile - this will help us to help you. You can do this by clicking on the icon of the chair in the top right of the home page, then "profile" and then "edit". You can read my profile as an example by clicking on the icon of the beach.

Your husband should have a diagnosis and a Gleason Score (mine is T3aN0M0 Gleason 9 (5+4)). This helps us work out where he is on his journey.

Tomorrow you need to be asking for the full diagnosis (if you don't already have it). Where has the cancer spread to exactly, He's started Hormone Therapy - what further treatment can he expect and when will this start. You need Calcium and Vitamin D prescribing to stop any bone thinning and ask for some Painkillers.

Be sure to write down the answers and ask to be copied in on the meeting notes.

I hope this helps, please keep us informed as to how you go on and if you need to know anything else just ask.

Best wishes - Brian.

Welcome and all the best

Hi Diane and welcome, so sorry to hear of your husbands diagnosis.  As you have not given many details it is difficult to give best advice. Ask If cancer spread only to pelvis recently is radiotherapy still an option, chemotherapy should be available and immunotherapy, ask if radiopharmaceutical therapy is an option. For pain relief and to strengthen bones denosumab and zoledronic acid, Diane some of these treatments may not be available at all hospitals. Diane if you can give a little more information it would really help, good luck tomorrow, take care, Eddie

Thank you Brian I will update my husband’s profile really appreciate your response.  Hopefully will find out more tomorrow but at least having read some of the comments on here the letter from the consultant makes more sense and will give me the confidence to ask more questions tomorrow.  Best wishes Diane 

Good morning Diane.

A warm welcome from another wife. My husband husband was diagnosed over 3 years ago with T4 plus lymph node and distant metastasis and is still going strong. From your profile I see that you are now having more scans at the end of December and then will get your full treatment plan after that with possible radiotherapy and chemotherapy. Please come back if you want any help or guidance as many of us have been through these treatments with our partners. Try and enjoy Christmas to the full (I know your mind will be whirling about what has hit you) but know that it is still treatable with many options further down the line if necessary.

Look forward to hearing from you and best wishes for the festive season.

Diane,

Sorry your husband has joined the club, but welcome.

Thanks for posting his profile, which helps others on the site be able to match to you more closely.  Although I currently don’t have bone spread, I can relate to much of the rest.  My diagnosis was in March 2017 and have subsequently had both RT and Chemo.  It is initially one hell of a shock and changes your life completely, however, I would add that it many ways it has changed things for the better.  We no longer take things for granted and not knowing how long I would be here, we made lifestyle changes that we would not have done.  As it turns out this is my 7th Christmas since getting PCa and hopefully many more to come!

Some of the guys on here are on a ‘curative’ pathway which is amazing and wouldn’t have happened only a few years ago.  Many of us are currently incurable, but with research and new drugs becoming available who knows how long we might have.  The drugs my Oncologist is talking about now, many were simply not available even when I started this journey.  

You sound very supportive and I know I was very fortunate to have my wife’s support.  In many ways the journey has been harder for her, but we try and remain positive with whatever is being thrown at us.  

You will have many questions as you progress with your own journey, so feel free to post (there are no silly questions).  The answers you will get are from others in the same situation.  You are no longer alone.

With best wishes,  David

Thank you so much for taking the time to message me, you really have given me hope and so far the NHS have been really quick at responding.  It’s good to hear your husband is still going strong that’s fabulous news.    

Have a  lovely Christmas! 

Hi David, thank you for your message, and so pleased you are doing really well.  Yes you are certainly right it was a huge shock but reading everybody’s comments is giving me hope.  The medication certainly seems to have come a long way over the years.  I think it’s just the word cancer that scares the life out of you but I am definitely feeling more positive since joining this group, so thank you.  

Have a wonderful Christmas and healthy new year! 

best wishes Diane