Prostate Cancer Diagnosis

Hi BGG

All looks ok, low everything, good.

AS an option I was on it for 4 years.

The only thing is looking back Radiotherapy was so easy should I have just gone ahead with that, mmmm.

Only thing I think I would say  if going straight for treatment instead of  AS I wouldn't perhaps be so positive if doing surgery or if included HT with the RT.

Remember the lower the stats the more likely u won't need HT.

One thing if u go on AS , not sure about MRI every 3 years, PSA doesn't always tell the whole story.

I had MRI yearly so I would say 2 years minimum.

See what others say and please remember all that I have said just my opinion.

All the best 

Steve 

When my husbands first PSA test was raised they didn’t do mri scans before biopsy. The biopsy procedure was through the back passage, risky and unreliable. They had not formalised Active Surveillance. We lived for about 8-10 years with just annual PSA tests and the agreement that action would be taken when his PSA reached 10 - which it did 3 years ago this month. So, we just got on with life. He was eventually diagnosed with PC T3a Gleason 4+3=7. He underwent hormone therapy and radiotherapy with ‘the intention to cure’. By this time he had ‘collected’ other long term conditions. The burden of multiple conditions requiring multiple hospital visits was enormous and wore us both down and out. So, we traded some 10 years of good quality life for treatment later on when he was less able to tolerate it. ( and the same for me). 

But no treatment is 100% guaranteed - neither as we were 13 years younger or as we were 3 years ago when properly diagnosed. All treatments and AS carry their own specific risks. 

had diagnostics and treatments available today been available 13 years ago I think my husband might have opted for treatment at an earlier stage, with a better chance of cure and when more able to tolerate it. But….some prostate cancers are so slowly growing that he might have died of something else before the prostate cancer killed him? The treatments do have risks and side effects.

it’s a tough choice. I do think an MRI every 3 years is not frequent enough but I am not a medical expert. I would want the reassurance! I think that so long as you are fully informed that the decision is very personal but very hard to make.

Good luck!

Thanks Steve,

Appreciate your thoughts on your experience. I agree with the MRI frequency, that was what they said but at the time I'm on information overload but afterwards thought that seemed a tad long (as you say PSA doesn't show everything) so when I have my follow up I think I'll raise that time frame with them and push for more regular than that.

thanks

Brian

Just to tell u a bit more

Year 4 on AS with yearly MRI.

MRI suddenly showed tumour on the gland edge

so obviously had to go with treatment.

PSA at that stage about 12, tumour size 13mm

Steve 

Thank you Worriedwife for sharing you and your husbands journey, I hadn't considered the impact of treatment on you as you get older, but as you say every option has its own specific risks. Think both of your views on frequency of MRIs has definitely made me want to raise that with the Urology nurse on my catch-up with her.

shows the importance of MRI. Thanks for sharing.

Just one more thing, always keep your eye on tumour size.

Find out from your MRI report what the tumour size is and them monitor throughout IE whenever u have a MRI done.

From your stats I reckon easily under 10mm.

Steve 

Hello Bristol Grey Guy 

Welcome to our exclusive club, although I am so sorry to find you here.

Let me say from the outset I am not a believer in AS (personal view not Macmillan).

It's not going away and at some point you will need treatment. The younger you are the quicker you recover from your personal choice of treatment. Also having treatment removes the anxiety you are living with.

I have been on the Community over 3 years (A Community Champion for 2) and in that time I have seen 2 Community members go from AS to incurable - hence my personal views.

Whilst you are chewing over your options here's a link to the NICE guidelines for Prostate Cancer Treatment:

NICE guidelines - Prostate Cancer Treatment.

You will see at 1.3.14 on AS an MRI is advised every 12-18 months.

I hope my ramblings help - happy to answer any questions.

Best wishes - Brian.

thanks Millibob and thank you for the link. Yes it a dilemma I am struggling with at the moment and tbh I wasn't necessarily thinking of the additional impact in treatment/recovery as I get older (still Peter Pan in my head - not anywhere else lol) until you and others have raised it, so will need to factor that into my decision. Really appreciate your view.

thanks

Brian

52 diagnosed recently with G7 3+4 , psa 4.9, density 0.15

Nothing on mri.

Told AS with 3 month psa and 12 month mri.

Asked for biopsy results via email later and told 43% of cores positive, 4 areas have cancer 1 area has high grade PIN.

Both lobes.

Apparently some cores are 70% cancer ?

Have a meeting booked for 25th as thinking take treatment now given my age, health and biopsy results.