Active surveillance let me down

Hello Dee, I’m so sorry to hear of this latest development. I can tell that you are absolutely reeling with the shock of this development.

My husband had a slowly rising PSA for quite a few years before they had actually formalised ‘active surveillance’ for patients and before they scanned prior to biopsy or did the template biopsies which are more reliable. 

He saw a young urological registrar the first time and he and my husband agreed to just keep monitoring the PSA. Then, when it rose a bit more we were referred back to urology and saw the rudest, most horrible consultant we have ever come across. He told my husband to go away and not come back until his PSA reached 10 which it did in 2022. He was T3a N0M0 ( bone scan and biopsy only and we didn’t know about PET scans etc). He had Rt and HT with’the intention to cure’ but I am not convinced he has ever had the best of care and worry the cancer might not have been demolished!

we put our trust in these people but I’m not sure they always deserve it!

I don’t know whether or not it is scientifically true but the words the cancer nurse specialist spoke to us reassured us and I hope they will give you some reassurance. She said, ‘ As soon as you take the first ( bicalutamide) tablet the cance is stopped in its tracks’! So , if this is so, your cancer will be stopped once you swallow that tablet! 

don’t forget that even when the cancer had spread outside the prostate, there are some very powerful treatments to kick it into the long grass for a very long time! Your consultants initial prognosis that something else might get you will , hopefully, still ring true!

I hope all goes well for you. "

Good Evening Dee (Dee55) 

A warm welcome to the Macmillan Online Prostate Community - you say 

Dee55 said:

This site has been a lifeline, providing information and support when Google searches only amplified our fears. I'm writing in hopes of helping others navigating active surveillance.

I am so pleased you have found the group to be of help however I am so sorry to read of your situation. I am very pleased you have posted your situation to date. I am a firm believer that once Prostate Cancer has been found, you should do something about it - it's not going away and you will notice I personally never recommend Active Surveillance or Watchful Waiting.

I do hope that in your circumstances you have some good results from your scans and that you get a treatment plan sorted out.

Please feel free to vent your feeling here with us rather than your family - we understand and will help you in any way we can.

Keep in touch and ask any questions you need to - we are here for you.

Best wishes - Brian.

Hi Dee.

Sorry to hear what has happened.

Although in nearby nodes potentially still curable, you don't mention how many nodes , possibly one or two?

Looks like you had no MRI done between 2022 and ,2024 unless I'm reading it wrong, they relied on another biopsy which doesn't always show the full picture.

Anyway starting on HT will stop it growing, hopefully some RT at a later stage will finish it off

Hope all goes ok for you

Best wishes 

Steve 

Hi Dee55

Very sorry to hear this, and thanks for sharing - much appreciated.

Thanks for completing your profile, which I have read with considerable interest, not least because I too am on AS. 

As I understand it, you have had two biopsies, the first in late 2022 (presumably 'random' since the preceding MRI detected no lesions), with a second about 18 months later in Apr.202 (presumably also 'random', since a preceding MRI is not specifically mentioned).  But please correct me if I am wrong.   

I have to say that to me (no medical training, just personal reading), a PSA > 10 seems to be rather a warning signal indicating perhaps that something has been missed, unless there is a known contributory factor e.g. significant prostate enlargement.

Very best wishes for an good result from the imminent MRI scan on your leg.  

I want to thank everyone for their kind and encouraging words in response to my previous post. I'd like to clarify a few points.

Like Worriedwife, I had a very negative experience with the urologist who delivered the initial diagnosis. His lack of compassion was shocking, and we've decided we don't want him involved in sharing the results of my upcoming MRI.

My biopsies were prompted by rising PSA levels. While I've had one MRI, it showed no lesions, enlargement, or other abnormalities.

In retrospect, I should have pushed for more investigation when my PSA reached 11, but the urology team consistently dismissed my concerns until it hit 23, potentially allowing the cancer to spread.

We're hoping the next MRI shows the spread is limited to the two lymph nodes near my prostate. The urologist mentioned treatment options depend on whether the cancer has spread to my leg.

I regret not seeking a second opinion privately earlier. Right now, I'm focusing on preparing for the challenges ahead and staying strong for my family.