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Diagnosis day on Wednesday

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User

Posted 06 Nov 2016 at 12:10

Good afternoon everyone

I had my TRUS last Wednesday and my urologist was surprisingly frank about my mpMRI scan results. I had a PIRAD score of 5 - clinically significant cancer is highly likely to be found. That was a bit of a blow - I'm only 46. He told me to expect a cancer diagnosis on Wednesday this week when I get my results.

It's odd being back at work and trying to get on with life and fill the time. I feel like I'm living in two worlds simultaneously - the real world and the cancer world (and yet I know the cancer world is real too). Feeling low today and just wondering how to make it to Wednesday when I'll get my Gleason score and TNM score.

What is likely to happen at that appointment? How long does it last? Do I indeed get my Gleason And TNM? Do we discuss treatment options? Do you go back to work afterwards or crawl up in a ball and cry? This is such a strange place to be. I can still hardly believe it.

Anyone willing to share anything they think might help me prepare for and deal with Wednesday?

Thanks.

Walter

User

Posted 06 Nov 2016 at 13:01

I was 46 on diagnosis so know exactly where you're coming from. You are so right about there being two worlds brother. The cancer world, particularly at the beginning, seems so unreal because this time a few months ago, cancer was not part of your life - and now, despite your best wishes, it must be. No amount of advice will help alleviate the fears. However, in the early days, I used to alott two days a week to worrying about cancer, Tuesdays and Thursdays, and for the remainder of the week, it did not enter (nor I did not allow it to) enter my head. Every man finds his own strategy to deal (for good or bad) with his cancer and you will find yours too.

As far as your appointment, I strongly suggest writing all your questions down as the sheer significance of the day tends to cloud any rational thought and you end up coming out of the meeting confused and none the wiser having forgotten to ask the most salient of questions. So, write them down now then take a pen and paper to jot the answers down at your appointment. Ask for your Gleason scores, both the first and second numbers, how many cores were taken, how many cores were cancerous and if so, by what percentage. You may or may not be given a TNM score depending upon whether you have had any scans. Ask the consultant to lay out the treatment options for you and any further investigative work that many need to be done first. Remember, some consultants have a bent towards different treatments so I would firstly see what the options are then go home, absorb the news then start researching those specialists in your hospital/s who offer these treatments, if necessary making appointments to see them with your numbers to gauge their views on treatment efficacy based specifically on your biopsy.

After all this research, you should feel more empowered to make the right treatment option for you. Only you can decide that based on the meetings you have with the professionals. Remember one thing, knowledge is power so make sure on Wednesday, you go armed with a comprehensive checklist of questions so that both you and the medical professional can go forward in full knowledge of the facts. Until then, grab a glass, fill it with your favourite tipple, watch some TV, do some gardening, go for a brisk walk, plan a short break holiday, whatever you need to do to allow your mind to think about better things.

I wish you well brother and please do let us know on here what the outcome is. There are men who have experienced the whole gamut of treatments at all stages of disease and can advise, support and guide you right.

Take care

Bazza

Edited by member 06 Nov 2016 at 13:02 | Reason: Not specified

User

Posted 06 Nov 2016 at 13:50

Thanks Bazza - roll on Wednesday - the waiting is horrendous.

Walter

User

Posted 06 Nov 2016 at 14:01

W

Hope Wednesday's appointment goes as well as it can. My sequence of events were, I saw the consultant one week after my biopsy, straight to the point sorry Mr C, 10 of 12 samples positive, you have Prostate cancer. He was very positive about the future outcomes. I went on my own and remember very little else, so take someone with you. I was told the options were RP or RT but all subject to MRI ,CT and bone scans.

Following the 5-10 minute appointment with the consultant I had too wait about 30 minutes to see the Urology/ oncology nurse,she spent about an hour with me and went through loads of info,and answered any questions and was very supportive.

Thanks Chris

User

Posted 06 Nov 2016 at 14:18

Hi Walter
I'm a young man too. Diagnosed at 47 and operated on at 48. Click on my picture and read my profile if you want.
I just wanted to say that the whole business is waiting and waiting and waiting. You do get used to it after a while. I'm waiting now while we allow my remaining cancer to grow enough to be seen on a scan next year. It's been an utterly rubbish 17 months. But I'm kind of not as bothered anymore. The urgency and fear has more or less gone , but I detest this cancer living on my shoulder day after day.
I do hope your results aren't too bad on Wednesday. You've already been given great advice so I don't have much to add. All I would say is use this forum if it helps you , but please please call this charities fantastic nurse specialists any time you want. They really do know everything and are an invaluable service.
Best wishes
Chris

User

Posted 07 Nov 2016 at 09:21

Hi Walter,

On the positive side you have looked into Pca and getting to grips with treatment and expectations early. I went into my appointment thinking I had a bladder problem, even after my bio's and was hit by the cancer word for the first time 60 seconds in the door. I did however quickly take out my phone and asked if I could record the consultation and this I found really helpful afterwards. I did it for every consultation afterwards. My appointment lasted about 1/2 hr and was given the toolkit, etc, told what scans I would have and got appointment for consultant.

Good luck for your appointment.

Steven

User

Posted 07 Nov 2016 at 12:54

Hi Walter

All the very best on Wednesday. Usually about 15mins to 45 mins (however takes as much time as you feel comfortable)

I believe the consultant tends, from his/her experience tends to feel; you will absorb very little, and they will come to the main subject very quickly and professionally. It depends on whether you have any relationship with this person before in the 'style' and manner they use. Take someone with you if you feel comfortable. Oddly I ended up at a different hospital, (as I would have had to wait another 2 weeks at my local one) saw a different person who I hadn't seen before and the wife had to stay in car with very young grandson (as his mum had been taken poorly ) + appointments running over 2 hrs late. So things don't always go as planned ..

Although I was still shocked, (see my profile) I did spend a lot of time (30 mins) asking loads of questions and did take some prepared notes. I think I may have interrogated him looking back. The main questioning (as this was my one and only biopsy) was about the relevance of Gleason 4 + 3 and the location of tumour(s). Again the speed of the next course of action, what happens next ?

I can not fault NHS; that was the only appointment that was late and always had wife with me at other times.

I assume you owe the Lions a big thank you, whatever the outcome. Are you a Lions member may I ask or did they offer this to the general population as a one off event or a regular drop in ?

All the best

Gordon

Edited by member 07 Nov 2016 at 12:59 | Reason: Not specified

User

Posted 13 Nov 2016 at 00:16

Gordon

Sorry for the delay in responding to your question. Since the start of my PCa journey, I've been on this website every day and I've been researching the condition and its treatments. I got to the point of exhaustion over the past few days and needed to stay away.

I'm not a member of the Lions Club - it was a public event they held. I have now told my family about the diagnosis and will be telling my work colleagues next week. I've also told my employers, who have been kind and supportive. Once I have told colleagues, I plan to contact the Lions to thank them.

Walter

User

Posted 13 Nov 2016 at 19:31

Hi Walter
I received my results on Monday this week. I thought I would see the consultant but it was two oncology nurses. They delivered the news - 5 of 15 cores with Gleason 3+4=7. I went on my own but I was well prepared. They discussed the treatment options and I had various questions.
As my PSA was 72 they said I would not qualify for Brachytherapy. I raised the issue that the raised PSA was probably an anomaly as I had regular PSA checks and always between 4 to 5, and the last one was six months ago. I suggested that it should be reviewed again and one of the nurses checked with a consultant and he agreed. So the moral of that story is be prepared - this site is a fantastic resource - and don't be afraid to challenge anything. It's your life, your decision, so make sure you are comfortable with it.
I have now received the follow up letter from my session with the nurses. They didn't quite relay the information exactly as I gave it to them. Overall you have to applaud the NHS and the way the systems kicks into action. However it's sad that you have to keep telling the same story - it never seems to be in the records, or they aren't reading the records. I will be writing a letter to the nurses, consultant and GP correcting the details.
I now have appointments - within a week - for the surgeon and the oncology consultant. So it moves ahead very quickly, and now I'm trying to evaluate all the options ahead of those appointments.
It's easy to say don't worry, but there is nothing you can do except prepare yourself with knowledge.
Good luck.
Chris

User

Posted 13 Nov 2016 at 23:12

Hi Walter
Take care of yourself. Life is probably becoming a blur. Ie so much has happened to you so quickly. I was not working full time and had time to absorb the emotional impact. Those around you also need time .. its a balance when to make the key decisions. Best wishes
Gordon

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