Advice

Hi Bassmaster and I understand what U are saying, I always felt I was being pushed into treatment 

I reckon the most important thing here is what does MRI show in terms of tumour size and location in the gland

When was your last MRI and how did it compare with the previous one

Steve

Sorry just seen your last MRI 2021, Def U need to ask for one now otherwise you don't know what's going on.

Hello Bassmaster . To add to your knowledge I have attached a link to the NHS guidelines. It says that MRI's are not to be routinely offered for men on active surveillance but you should be having annual DRE's, however, if there is any concerns then an MRI should be done. Your PSA is showing a general slow trend upwards and you are above the level where further investigation is triggered so turn the tables on the CNS and ask for an MRI to put everyone's mind at rest.

 https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#localised-and-locally-advanced-prostate-cancer

You have educated yourself and come up with the pathway which you are happy with and yes in an Ideal world there should be more time given to everyone who is diagnosed with cancer to educate them on their choices. I can understand your frustration at being pushed towards surgery especially when there are other options which might be equally effective but with less risk of long term side effects. There is a video which I found informative on Gleason 6, especially the importance of routine testing just in case another site pops up which could make treatment advisable.

https://youtu.be/a0sjUallZQU?si=nqAMKnkKJMwsNWjA

Hi Bassmaster I am also confused.  Partly by your PSA but mainly by ‘active surveillance’.  Your PSA appears to be rising so why are you not getting additional information about what is going on?  I think you should have an MRI as it’s 4 years since your last one and if your PSA continues rising, annual scans after that.  I understand you don’t want surgery, but are you opposed to other treatments?  David

Hi after my latest in clinic psa results I was due for my annual DRE but the nurse informed they have removed DRE from active surveillance so she didnt perform examination?. I checked online and they are going to remove it from active surveillance.. The reason that I understand is that imaging is far better for growth detection..Which leads to my question only a slight rise but surely warrants investigation to help me with my anxiety.. I did ask and she said she was happy with psa because it went down?? I personally am not a physician but only a very slight drop.. again she went on to say she was not concerned about my psa she said she sees men with psa in the 100's I don't understand what this has do with my case?? Maybe I could ask for another psa test in 3 months rather than the 6 months she suggested.. iam so confused?? 

• Hi David due to my age  I personally wish to avoid any treatment offered surgery or radiotherapy. Both come with possible awful long term side affects that I will have to live with.. Hopefully if I last out active surveillance as long as possible newer less invasive and fewer side affects will be available.. But imagine it will only be available privately?

You need to know what's going on because if MRI showed near the gland edge then Def u should start some kind of treatment.

It is probably not  near the gland edge but only MRI will show that.

Radiotherapy is really easy normally with no lasting side effects 

Steve 

We faced a similar decision but I now question whether my husband would have been better able to cope with treatment when younger and fitter and with no other health problems to contend with?  Something to weigh up in your decision- making? 

From my understanding you are entitled to switch from active surveillance to treatment at any time. My argument would be that you are unable to make an informed decision because you have been refused an MRI or DRE so I would be politely assertive and ask for the MRI which will help you make that informed decision of whether to continue with AS or progress to treatment. I would also stress that this is causing you anxiety. If you cannot get anywhere with the CNS then ask how you can progress this with someone further up the decision making chain and if necessary progress it through the PALS in your hospital.

I went for radiotherapy myself, weighing up the 3 options offered,  do nothing,  surgery or radiotherapy,  ruled do nothing out straight away as consultant said 5 to 10 years, surgery to many side effects hence chose radiotherapy which was completed April 2nd this year. No major side effects 

Hi Terence 

Just as a matter of interest did you have hormone therapy in addition to the RT.

Steve