Bilateral PIRADS 5 target lesion with suspicion of bladder base and seminal vesicle involvement - what?

Hello Eversleigh , oh those first weeks are so difficult! We are bombarded with information, tests, results, consultations, phone calls and all the while we are absolutely scared silly.

So, first of all, I recommend sitting down quietly and take a few deep breaths before I thro more info at you

My best source of info at the beginning was www.prostatecanceruk.org They have lots of different for each stage of the prostate cancer journey, the different diagnostics needed, the different treatment pathways etc. it’s all in very clear, understandable English. You can dip in and out of the leaflets as your husband’s circumstances progress. 

from the MRI you will have been given a score . The T number tells you whether or not there has been spread outside of the prostate. The N number saying whether any lymph node spread has been detected and the M number shows whether there have been any secondaries ( metastases) 

From the biopsy you will get a Gleason score. This is in two parts. The higher the number of the most prolific cancer cells and the second most prolific cancer cells (1-5) are added together. So, my husband was Gleason 4+3=7. There was a greater amount of more aggressive cells.

After the biopsy it is common to pass on to further scans ( several different sorts on offer here!) to check the rest of the body for further spread eg to bones or further away lymph nodes and organs.

All thes investigations pile on the pressure! There are lots of delays within the NHS at the moment. What I found got us through the bureaucratic treacle was to

1. let every department know that we were ready and available to take ‘short notice cancelled appointment.

2. be politely assertive, state your anxieties and concerns and wishes for sooner rather than later and monitor, monitor and monitor again as you go through the system ie you take as much control as possible

3. keep a diary! Keep the date, time , name and direct contact details of everyone you speak to! Ring them up to chivvy things along - nicely!!!

4. Ask about a local support group! This forum is brilliant but people here who have access to a Maggies speak highly of this organisation. Our local hospital had a MacMillan area and they were supportive.

5 Enquire about reduced or free parking if you need to visit the hospital many times.

6 Last but most important. Prostate cancer, caught early, can be cured. Caught at a later stage, it cannot be cured but it can be treated and controlled - in most cases for a long time. There are lots of different therapies out there and new treatments coming on line all the time.

i wish you and your husband all the very best. It is tough on the emotions to begin with but things do settle. 

Hello Eversleigh21 .

Welcome to the family but sorry that you have found yourself here. The first thing we say to people is please don't Dr Google because a lot of the data refers to studies which were done many years ago and could be out of date. Treatment has changed considerably in recent years with a definite emphasis on treatment and quality of life. There are a plethora of ongoing trials so the landscape of what is available is changing every couple of years. There is a very good book which you can download and is a very good start to understanding prostate cancer. It is in plain English and will start to get you used to some of the terminology. Please ask any questions - we are more than willing to help as we know what a scary time this is. The mind can think of nothing else apart from cancer and becomes all consuming for a while until you start to get some answers.

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

All this advice is spot on. The key thing is to be assertive so you can maintain some element of control. Ask questions at all stages and always seek clarification. After any op don’t be scared to push for your own needs and don’t give in to medical orthodoxy. Be in control!

A brilliant response WW, as always.  

AW

So, so true.

AW

Morning Eversleigh21,

You had an informative and detailed post from WW.

I found in the early weeks of diagnosis that the written information is often too much. Apart from this community which is so amazing I used to call by phone the prostate cancer specialist nurses on 0800-0748383. This is part of the prostate cancer charity. This number is free and open from 10am week days. All the nurses are so knowledgeable and I found reassuring and clarification. I had many conversations with them in the first few weeks and I learnt so much.

For me it was a great help to TALK to someone who knows not only to read about it.

Lots of love

Dafna

Good points , Dafna. :)

Thank you and reminder that so much information is out of date online was so apt. (I knew but sensibility was out of the window yesterday).  So many people are saying that they know or have family members who are living with it or have been cured it has given us more hope and also the speed that the treatments are improving and being more precise is very heartening.  I am downloading the book and hopefully will be prepared for the journey ahead with actual facts and the right questions. Thank you again.

Hi Eversleigh21 sorry I am late to the party but you have already had lots of good info.  I would just add that it is very confusing at the start of this process and waiting for the biopsy and scan results is so stressful (we have all been through it). I  hope you get the biopsy and results soon. Please come back with any questions. Best wishes, David