Not the news I wanted

Hi,

I have also been through it. It is a difficult lengthy journey especially with NHS. Lots of tests and anxiously waiting for the results.  Mine got mixed up with couple of other issues. The 1st MRI scan picked up spot in my colon and bone. That made me really worried to the extend I had “panic shock” and had to call for emergency and even ended up staying in hospital for a day to recover a bit. At the end the scans on bone and colon testing to be negative. I also got a better result after surgery; T3a turned to be T2c and with negative margin. You see, even some of the test results are not accurate and could inject unnecessary anxiety. Nothing is for certain until diagnosis. The hardest part is testing period and once the plan of treatment started things get running much smoother.

Rather than just reading many statistics and leaflet, also talk to people especially those who have the experience and gone through it. Amazingly, this ugly illness turns many patients/sufferers even more stronger, helpful, kinder, …. and these people are more helpful than leaflets. I would have a much harder time if i was not in touch with this forum. Thanks to them many times again.

Not the news I wanted. Just had my biopsy results and it shows a Gleason of (4+5) 9 but told it’s contained in the prostrate, prostate smooth, no suspicious of spreading to nodes or bones. Consultants, surgeons to meet next Friday to discuss treatment options. To say I am devastated is an understatement. Done nothing but cry. What next could happen? Thanks.

Edited by member 22 Sep 2022 at 20:04  | Reason: Not specified

You have remembered correctly SLF. Your Gleason score is a 9 which usually means that either the majority of cells were a 5 but there were also some 4s OR the majority were 4s but there were also some 5s. Sometimes the results seem confusing because they talk about the Gleason grades ( a description of how distorted the cells look under a microscope - a 3 or a 4 or a 5) and the Gleason score (the sum of the two most common patterns such as 4+5 or 5+4); in your case, there were a lot of 3s (which is reassuring) but they don't want to ignore the 5s so have given you a higher total. The meeting next Friday is the multi-disciplinary meeting, involving urologists, oncologists and other specialisms such as radiology - together, they look at all the diagnostics (your scans, biopsy results, etc) and form a view about which treatments might be suitable. Then someone will tell you what the MDT view was - as stated above, you might be told that surgery, radiotherapy or brachytherapy would all be suitable, or you may be told that one treatment is going to be better for you than others. Assuming you are given a choice, you then ask for an appointment with a urologist and a separate appointment with an oncologist to discuss the treatment, potential side effects, likelihood of success, etc and then you make a decision about which treatment you want to go for. This is where the PCUK toolkit mentioned above comes in handy - all treatments have side effects and you end up having to decide a) which treatment gives you the best chance of full remission and b) whether you can live with the potential side effects of that particular treatment.

Things will seem better once you have the full diagnosis and a treatment plan. My dad was diagnosed nearly 25 years ago and my husband 13 years ago.

This is entirely normal. Believe me, we’re all been there and know how stressful this is, but try not to get yourself in a panic about it. You’re NOT going to die (well, you are, but not from this!). You’ll go through some mildly unpleasant but entirely bearable treatment, and it’ll be sorted. Things will all seem a lot brighter once there’s a definite treatment plan in place.

Just take things one day at a time and you’ll get through it all just fine. You’re not alone in this.

All the best,

Chris

You will feel a lot better once all the tests are done and there's a plan of action in place.

I'm three and a half years after the end of my treatment and I still get pretty stressed in the few days between having my 6-monthly PSA test and finding out the result. I don't think that will ever go away. The rest of the time I never think about it, but the tests are always a bit of a worry.

All the best,

Chris

Excellent news! I think once they give you a plan, you feel some relief. My prostate size was double yours (I know Size Queen) with T3b but pretty much no symptoms....here I am 9 months on from RT and I finished HT early cos of the side effects...so 7 months on from that and lo, my hormones are back,(speaks in a much lower voice), I be more manly now! Lol . I hope the blog helps - lots of info in there - esp the RT stuff, which you'll find a doddle. I hope the HT side effects are slight - every man is different. I'm guessing your wife has seen the blog and/or is fully genned up on HT? Then she'll be able to support you...biggest thing I did was a diet change.

Do report back on here...we're here to help.

Steve