Diagnosed yesterday

Hello Mcfmaw - And a warm welcome to the club you didn't want to join.

Active surveillance is good - but at some point I would suggest you are going to have to go down one of the treatment routes. I know it's not what you want to hear but I am honest and say it as it is - the good part of this is you know just where you stand, it's not spread, it's contained within the Prostate and when the time comes you should have the choice of various treatments

The biopsy is over and that for most people is the only part of the PC journey that causes pain and anxiety.

Is there anything else you want to know - please feel free to ask - however trivial - we are a decent bunch and you will get honest answers from people who have "been there done that". You are most welcome and please join in with any of the conversations. A sense of humour and a positive attitude are two assets that will help you on this journey.

Best wishes - Brian.

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Hello Mcfmaw.

Welcome to the group. You have obviously had a worrying 3 months and have been told that you are on the start of a journey you never expected to be on. If you would like to why not start logging it onto your profile with dates, Gleason score, biopsy TNM and PSA. This would give you a record of your progress and if you have any questions further down the line it would help others on the forum give you more targeted information.

Being on active surveillance will keep you monitored and hopefully you will remain there for some time with no change. The reassuring thing is that most men die with PCa and not of it. You have been diagnosed at an early stage and with the current treatments and the rate at which new ones are coming on stream then the outlook for you is very good.

We are here for you but also for your family as well if you have one because your diagnosis can hit them hard. At the moment a positive attitude is essential. Look forward, look after yourself both physically and mentally and you will then be better able to face what might be thrown at you in the future on your PCa journey.

Odd questions may come up and hopefully there will be someone on here who has been on a similar journey and will share their experiences. If you click on the icon next to the name you may find the journey people have already been on and some inspirational tales of surviving against the odds.

Best wishes to you and keep posting.

Hi M

I was on AS for 4 years, it went ok although u always have it in the back of your mind that treatment will be needed at some point so a good idea to start looking at different treatments now so that you are ready when the time comes.

U will still need 3 or 6 months PSA tests and yearly MRI to monitor tumour size.

All the best

Steve 

That is useful information Steve. It starts the conversation that people want to know but are afraid to ask - how long before treatment is necessary. 4 years in your case, 10 in my husband's case. Everyone is going to be different. The important thing is not to let the regular tests slip just because you may not have any symptoms and see your doctor if you do start to feel differently or notice any changes in your bodily functions.

wow, 10 years , that must be a record, ,never heard of that before, must have been hardly growing.

yes everyone is different, I must say I did find that they were trying to push me into treatment all the time which got a bit wearing.

I reckon MRI just as important as PSA   cos my PSA went up from 5 to 12 in the 4 years  but my tumour size went from 3 mm to 13mm in the same period and it was very close to the gland edge at that point.

Hope your OH is doing OK, I'm sure he is

All the best

Steve

It wasn't growing Steve until all of a sudden POW. In 6 months we went from AS to Grade Group 5. No symptoms until a month before upgrade when husband was feeling tired and beginning to lose weight. Unfortunately his is a rare and very aggressive form with a non secreting PSA, and because of the rate at which it was spreading through the body (doubling exponentially every 2 to 3 weeks) we were initially told he may only have 6 months. That was over 3 years ago and still fighting. Every time we see a professional they say they can't believe how well he is doing and because of our positive attitude I think they are fighting with all the tools in the locker to keep him going. He is feeling a bit rough today because chemo side effects have kicked in. Only one more cycle to go. Every day together is a bonus and we still have a good QOL.

Yes, have heard of those rare aggressive PC's were PSA doesn't rise.

Were they still doing a MRI yearly just to check up on what exactly was going on or were they relying on PSA only? What was his Gleeson before starting AS ?

Steve 

He had annual MRI's. Biopsies in 2010 and 2011 32 cores each time showed abnormal cells in the one small area that is difficult and painful to get at but not definitive, just presumptive especially due to family history. Should have realised there was something odd going on at the time. When it took off in 2020 there was very little cancer actually in the prostate capsule, it had erupted out into the viscera towards the kidneys and was tracking up the nerves.. A secondary mass was found behind the pancreas and eventually invaded it. Numerous lymph nodes were involved. RT dealt with the lower mass and nearby lymph nodes. Enzalutamide dealt with the pancreatic mass and shrunk the upper lymph nodes. In July this year there was evidence of increasing lymph nodes in mid abdomen so chemotherapy started which appears to be working for now. PSMA PET scan was clear in all other areas so PCa controlled for now.

Ok, well at least under control,  that's the main thing.

Hope all goes well for him in the future

Best wishes

Steve 

Hello and welcome to this fabulous group. I don't know where I would have been without the lovely people on here to keep me on track. My husband was diagnosed this year and is currently having chemo.