PC kept in the dark

Dear fredek welcome to this forum. You will find very good people with experience based advice and support on this forum. I am relatively new to this myself with advanced Pca only diagnosed a month ago. You will undoubtedly be receiving a message from millibob who is a community moderator for this forum. He will probably ask if you could put some information on your profile page about you journey and diagnosis to date. This will help others who are on the same journey link up with you and provide meaningful support. I wanted to respond simply to say hello on Christmas Eve just in case others were preoccupied with family and Christmas. Welcome to the forum and don't hesitate to ask any questions however small they may seem. It is our community and we all support each other 

• Thank you skippy 1959 any help and advice would be greatly appreciated. 

Hello Fredek.

Glad you have made it here and a very warm welcome. No, it does not sound like the standard start to your journey. I am not in a position to help you through the system in the UK as I no longer live there but I know that others will come on and guide you in getting the treatment you deserve. To help to know where to start, have you actually been given your biopsy results - Gleason score, TNM (tumour, node, metastasis), PSA and MRI or CT scan info. If you haven't got these then again I know you will be guided in the best way to get hold of them. This is the starting point to give you an idea of what treatment you are likely to expect. What we have all learnt is that everyone's journey is tailored to their particular form of prostate cancer but you need to know what your treatment plan is. Who told you that you had non curative cancer? Have you had any contact with an oncologist? Fortunately you have started on hormone therapy which is putting the brakes on the cancers food of testosterone so that is buying you a little time but I would have thought that you should have been given more information by now as it is 4 months after diagnosis. Hopefully this will start the ball rolling for you.

Hi alwayshope 

I think I just needed a good rant. Was told by consultant in my 5min telephone call that it was non curative, and was told by a GP that my gleason score was 3-4 or 4-5 ,was told by another consultant that my psa was down to 1-1 .I have another appointment on the 10th of January with a different consultant but every time I am with them they talk at 90mph so leave with my head everywhere. 

Hi Fredek.

I hope that having a rant helps you get it out of your system. A drop of PSA down to 1.1 is good as it shows that the hormone therapy is working - a good plus. The Gleason score of 3-4 would indicate that it is moderate, whereas 4-5 would suggest aggressive. I think that what you need to do at your next meeting is to go in with a list of questions and just sit there until you have the answers that you need to take control of your journey. Some of the questions you can ask are:

Where has my cancer spread to.

What type of prostate cancer have I got eg. Adenocarcinoma, cribriform....

How aggressive is my cancer.

Will I be having chemotherapy or radiotherapy.

Have I been referred for treatment and if so where - this will allow you to check up whether you are on the list.

How will I be monitored after treatment and by whom.

Do you have anyone to go with you to the meeting as 4 ears are often better than 2. If you don't then either ask if you can record it or ask them to wait whilst you make notes. 

I hope that you have gathered from the time when you have been dipping into the community that having a non curative diagnosis does not mean non treatable. There have been great developments in treatments over recent years and there are now many options beyond chemotherapy and radiotherapy. It is very important to have a positive attitude and to keep as fit as possible. We can help you with what to expect from your different treatments but please come back and ask whatever questions you like.

Hi alwayshope 

Just been working on the question list. The things you mentioned are top of that list. I have my better half with me but don't know if she is taking it all in and I am struggling to talk about it especially when I don't know what's going on ,from day one I have had to try and find out about everything even had to phone around and try to get catheter bags and then had to try and get a district nurse to come out to change catheter it had been in for about 14 weeks she told me it should have been done at 12 weeks .Thanks again for the help will keep going with updates 

I think things are becoming a little clearer. It sounds as if you might have come to your prostate cancer diagnosis by an unusual route. How did you get your catheter in the first place. Were you having urination problems and admitted to hospital by the GP or was it an emergency admission? Whichever, it doesn't excuse the fact that you should have been told it needs to be either removed or replaced after 12 weeks and you should have been given contact details of where to get help and what to do next. Also, are you aware that in England you are entitled to access your medical records on line - you will need to ask your GP for FULL access and if necessary ask for the links. You also need to establish how you are going to access your hormone injections in future so that you aren't chasing all the time. It sounds as if you need to sit down with your GP to iron out these issues fairly soon as well as how you get routine blood tests and more importantly results. Can I suggest you keep a record of all conversations, dates and names, plus telephone numbers so that if you feel you have to make a complaint you have evidence to back it up.

It is your cancer but it is very much a couples disease. What your partner is feeling is very natural.You have both been dealt a devastating blow which takes a while to come to terms with but can I assure you that things will get better. You are going to have a few difficult months as you undergo treatment and things become clearer but hopefully in six months time you will be in a much better place.

Good Morning Fredek . As usual I am late to the party - but a warm welcome to the online Community.

My good friend Alwayshope looks like she's on your case. I can however help with any catheter issues you may have - I had an indwelling catheter for 10 moths awaiting a TURP operation. (You can read my journey by clicking on the icon of the beach).

It's OUR Community and YOU are a valued member so feel free to ask whatever you want - and if you want a rant - that's fine too.

Best wishes and Merry Christmas - Brian.

Hi alwayshope 

I should try and sort my profile. Just to let you know I live in Scotland so don't know if it is the same up here. I started my journey with a trip to A+E had couple of weeks when I could hardly go to the loo then couldn't stand the pain any longer so that was when I got my catheter. Then the problems started it was about another 2 weeks before I seen a GP then it was wait on this and wait on that I don't like to talk about our doctors and nurses because they do a great job but I just seem to be kept in the dark about everything so now I have been writing down a lot of questions like you said so hopefully they don't fob me of again. 

My partner have been trying to talk about it but still very difficult, the both of us work full time me nights her day's. She is struggling on with her health problems which I find very difficult to help her with she is amazing she does care in the community so she is out there helping people and listening to their problems then home to me and mine so I think that's part of the problem me trying to talk to her but told her that I want her to read through all the messages on here tomorrow she agrees. So hopefully this will help both of us going forward. Thanks again 

Would just like to say thank you guys for all your help, I wouldn't have known where to turn so thanks and a very Merry Christmas to you all.