New here, would like to hear your thoughts on active surveillance

Hello Cip8910 

A warm welcome to the Macmillan Online Prostate Community, although I am sorry to meet you here - I am Brian one of the Community Champions on the group.

Your question has been asked many times and your doctor is right "98% of men with Prostate cancer die WITH it not OF it".

I am sure there will be plenty of posts following mine so to help us a little can you please add your PSA and Gleason score to your profile (I know you have started it!). My personal view (and not that of Macmillan) is that if you have cancer, the sooner you do something about it the better - the younger and fitter you are, the more able you are to deal with your treatment path.

Others will have a different opinion - that's my personal view - let's see what others think.

Best wishes - Brian.

Hi Cip8910

And welcome also from me.  I agree with Millibob that if you provide more information, that will help the forum to provide a response.  

There's probably a lot of helpful info already available here, so if you have not done so already I'd suggest doing a search (search field is on top left, adjacent to the home symbol) and reading through the results.  

https://community.macmillan.org.uk/search?q=active%20surveillance#serpq=active%20surveillance&serp=1&serpgroup=123

Regards, Peroni.

Hello Cip8910

that is what my original consultant said to me, with, not of.

I got diagnosed in August 2023 and got put on hormone treatment - enzalutamide tablets and injections, the latter every three months at first, now every six. I also had radiotherapy once a week for six weeks. I was not given any other options as the consultant said surgery was not worth the risk and the mets are already out in my pelvis.

PSA at last count was 0.10, down from 52.5. Hot flushes still occur, tiredness, occasional irritability, and most disturbing, brain fog - I sometimes forgot to put a teabag in my cup before pouring the water! Terrible.

cheers,

Tony.

Hi

At this stage of your journey my advice would be to research your options from reliable web sites and then list the pros and cons for each of them as they might affect you both physically and emotionally. This will help you make the next decision and generate specific questions. All the best.

Hi Cip

I assume stats are low because you are on AS although as others have said would be good to know for best advice.

I was on AS for 4 years up until treatment started in 2017.

One  thing that I realised was  very important to do, regular PSA and yearly MRI just to make sure not spreading.

I possibly left it a bit too long because near the gland edge when treatment started

So keep a record of all PSA  results and copies of MRI report

Good luck

Steve

Thank you Brian. I updated my profile 

Thanks Peroni, I’ll look at the other results, I also updated my profile.

Thanks Cip8910 

That's some PSA rise 5 to 21.7 - something is going on. If it's also causing anxiety, depression and lack of sleep it's time for action.

As well as Surgery, there's Hormone Therapy/Radiotherapy and Brachytherapy - the latter two come with with side effects but aren't major surgery.

Time to have a chat wit your team I think. If you have any questions or need any support please do get back to me.

Best wishes - Brian.

Thanks for sharing, I am planning on getting a surgery but after reading up on the forums, my stats are pretty low compared to them and to you. My psa jump from 5 to 21.7 in six months got me very worried. I have an appointment with the Urologist in a week and will make a decision depending on what the doc says about my latest MRI results.

Your input helped me understand more about this 

Thank you for your advice, very much appreciate it.. Wishing you all the best as well.