how long to stay on surveillance

Mine has been on active surveillance for 3 years. At his MRI scan in September (the first one since his diagnosis) the tumour had grown, so another biopsy was done. Based on the biopsy results, his consultant recommended surgery asap & this is about to be done.

Over the 3 years his PSA level had remained fairly stable, so maybe don't rely on this alone to indicate that all is well!

We are now in the position of wondering whether we made the right choice to stick with the surveillance, or whether it would have been better to have had the surgery when the cancer was less advanced. However, it seemed like the right decision at the time for someone who was young & otherwise very fit & active.

Good luck with whatever you both decide.

Thank you for sharing your story Jemima.  I have often (silently) wondered if he made the right choice to remain on AS.  There are no real physical indications to raise a flag to potential spread.  I am quite concerned about the almost 3 point rise in his PSA in just 6 months.

Very best thoughts on your husband's upcoming surgery and recovery.  

#Fin31

I appreciate the dilemma you're in.  I am in a different, but similar situation.  Having had surgery nearly 8 years ago, but with detectable PSA, I am, in.effect, under active surveillance.  I had a series of scans in July.

In some respects this is easier as 0.2 PSA is the accepted value for recurrence.

I do believe.the "kitemark" for rising PSA as an indicator for.treatment is the "doubling time".  i.e. if PSA should rise by 100% or more.in less than 10 months.  A rise, say from 6 to 9 in six months is, marginally NOT doubling in less than 10 months. (for that it would have to at least risen from 6 to 9.6).

However, it is a dilemma, in that as you probably know, the longer you put it off, the more problems it might possibly cause.  Additionally it might be a 3 +3 Gleason now.  It can change!  Furthermore, the Gleason score is based on needle samples, not the whole gland.

In my case for example, my biopsy Gleason was 3+4,  after surgery the report on the whole gland was 4+3,  which is a significant difference.  My dilemma is also that if.I wait until.my PSA reaches the official 0.2 this doubles.my chances of metastases.

One way of reducing "risk" is to have PSA tests more frequently, e.g. 3 monthly instead of 6.  However, having had 6 monthly tests now for 7 years I find it quite distressing.  I couldn't bear it more often.  Sometimes it seems like I'm only living in six month stretches.

This all points to the conclusion, that as others suggest, PSA testing on its own is not a reliable, effective or psychologically acceptable strategy.  Perhaps you should insist on a MRI if one isn't offered.

As I wrote, I had a CT scan, a bone scan and an MRI in July and it was so reassuring, in my case, to read the reports stating no sign of prostate cancer.

The other problem is that it looks like you are seeing a surgeon, just checking back thru your posts, so he is only going to be interested in removing the prostate gland. When he sees the psa jump he will probably say it is time to remove the prostate but on looking at an Mri u could still be ok for AS or possibly Radiotherapy would be more suitable. I don't want to overburden u with things to think about but its better to know and understand all the facts

regards

Steve

Before I had surgery my case was discussed at an MDT with radiotherapy present, there were reasons why radiotherapy were discounted. Always worth asking options and why they were discounted.

Neither surgery or radiotherapy are pleasant but worth understanding rational behind decision. The side effects I believe are similar. The main rationale for me was my age and surgery after radiotherapy is more tricky but radiotherapy after surgery is more feasible.

Explore all options and ask.

All cases are usually considered by an MDT and, I believe, because of this, whether you're seen by a surgeon or some other specialist isn't that relevant in itself to what treatment you have.

It's also usually, "urologists" that are involved in the initial diagnosis and pre- treatment of PCa and they're generally surgeons.  Most however do not carry out prostatectomy because it is highly skilled and there's not that many radical prostate surgeons around.  Transurethral prostatectomy is more routine.

Oncologists on the other hand, don't just treat urology patients.

Consequently, I don't think there's that much bias towards a particular treatment.

Certainly in my case, after the MDT, I was told all the possible options and given a choice without any pressure towards one or the other.  It was a little unusual however, as I was on since although all options are usually open at my stage of the cancer,  was only given a choice of 2, because of a history of prostatitis.

Hello,

An update.  Saw the urologist/surgeon today.  His recommendation is a repeat PSA in 2 months.  If the level remains the same, slightly under or over, a biopsy will be done.  His opinion is a biopsy provides a better understanding of the scope and characteristics of the cancer.  He also informed us of a gene test that is done in California (cost of approx. 4k).  Has anyone had this done?

His opinion is if the PSA reaches 15, surgery will likely be the next step.

Looks like u are in the US?  

I don't understand the reluctance to do a MRI, after all, two years have passed.

Biopsy will tell the aggressiveness of the cancer but not necessarily any spread.

4k£ for a gene test seems expensive compared with a MRI.

I think that gene tests are more regards the susceptibility to contract cancer . I would ask what the gene test would tell you.

Regards

Steve

The dr. is of the opinion that a biopsy is more informative in terms of determining next steps, he didn't rule out MRI, just wants the biopsy first in a couple months.

My husband is an emotional mess today.  Its been 2 years he has been on AS and I think it is beginning to take its toll.  Does anyone have any book recommendations on prostate cancer they are able to recommend?  

thank you!

I took the approach that if active surveillance was about qhen to treat rather than whether to treat, that I'd prefer to start treatment as soon as possible. Glad I did as the cancer had spread small amounts that were only detected because of raised psa post surgery