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New to this Forum - and raising awareness

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User
Posted 22 Sep 2026 at 10:46

Am new to this community so hi!

Feel it's crucial to share an important experience regarding my ongoing care and monitoring.

For some time, I have been under active surveillance following a diagnosis of small, low-grade prostate cancer. As part of this protocol, I have undergone routine PSA blood tests, with the results sent to both my GP and my consultant. For a period, my GP reviewed these figures and consistently advised that no immediate action was required. However, after experiencing multiple rescheduled appointments with my consultant over the past year [I know they're busy but…], I finally managed to see him early this year.

During the consultation, he reviewed my recent PSA levels and pointed out a critical detail: because I am taking Finasteride, my actual PSA score needs to be doubled to reflect a true baseline. Because this adjustment had not been accounted for previously by the GP, he ordered an MRI scan. The subsequent MRI revealed a new area of concern on the prostate that was not visible on prior imaging. This prompted a follow-up biopsy, which confirmed that the cancer has expanded and now requires active medical treatment.

I am sharing this to raise awareness: if you are undergoing PSA screening or surveillance and are currently prescribed Finasteride, please verify that your 'healthcare team' is doubling your PSA values when interpreting the results. While it is uncertain whether earlier detection would have altered my current treatment plan, ensuring that PSA scores are accurately evaluated is essential knowledge for anyone managing their prostate health.

K

 

User
Posted 22 Sep 2026 at 10:46

Am new to this community so hi!

Feel it's crucial to share an important experience regarding my ongoing care and monitoring.

For some time, I have been under active surveillance following a diagnosis of small, low-grade prostate cancer. As part of this protocol, I have undergone routine PSA blood tests, with the results sent to both my GP and my consultant. For a period, my GP reviewed these figures and consistently advised that no immediate action was required. However, after experiencing multiple rescheduled appointments with my consultant over the past year [I know they're busy but…], I finally managed to see him early this year.

During the consultation, he reviewed my recent PSA levels and pointed out a critical detail: because I am taking Finasteride, my actual PSA score needs to be doubled to reflect a true baseline. Because this adjustment had not been accounted for previously by the GP, he ordered an MRI scan. The subsequent MRI revealed a new area of concern on the prostate that was not visible on prior imaging. This prompted a follow-up biopsy, which confirmed that the cancer has expanded and now requires active medical treatment.

I am sharing this to raise awareness: if you are undergoing PSA screening or surveillance and are currently prescribed Finasteride, please verify that your 'healthcare team' is doubling your PSA values when interpreting the results. While it is uncertain whether earlier detection would have altered my current treatment plan, ensuring that PSA scores are accurately evaluated is essential knowledge for anyone managing their prostate health.

K

 

User
Posted 22 Sep 2026 at 13:16

Isn't it depressing that patients have to keep an eye on the medical profession and their own treatment. 

These are basic failings in knowledge, ability and availability. 

You can be ill through the week but dont expect anything to be done if you dare to be poorly over the weekend.

The sooner we scrap a care model that was conceived so long ago that it can no longer sustain basic care the better. 

The NHS is trying to provide for things that were never part of health care when it was created. That leaves less time and resources to provide for lifesaving treatments.  

 

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User
Posted 22 Sep 2026 at 13:16

Isn't it depressing that patients have to keep an eye on the medical profession and their own treatment. 

These are basic failings in knowledge, ability and availability. 

You can be ill through the week but dont expect anything to be done if you dare to be poorly over the weekend.

The sooner we scrap a care model that was conceived so long ago that it can no longer sustain basic care the better. 

The NHS is trying to provide for things that were never part of health care when it was created. That leaves less time and resources to provide for lifesaving treatments.  

 

User
Posted 22 Sep 2026 at 13:16
Hi Kerbox,

I am so sorry that you have joined the band of PC sufferers and so hope all goes well with your treatment.

Thank you for this warning - although I have never used Finasteride, it is important that others are aware! Just so it's totally clear I will add this drug (Finasteride) appears to be for hair loss treatment. I often don't remember the name of the treatments I am on, but I generally know what I am taking them for.

User
Posted 22 Sep 2026 at 17:44
Unfortunately, it is not possible for a GP to have a detailed knowledge of all the many illnesses and problems he/she encounters and be up to speed with changes, new drugs, what has been found to work well and not so well. In fact there are a number of men on this forum who have a better knowledge of PCa and various treatments than their GP's. Both of my GPs told me this and my present one asked me to give a presentation to his students on certain treatments where his knowledge was lacking.

So what's the answer when it comes to PCa, where everything goes through your GP who is instrumental in referring you for treatment and monitoring you and who may know less than you about aspects of PCa, although most men know very little? My view is that there should be greater specialisation with larger practises, each with a doctor where cancer would be his/her speciality. A suspected or established PCa patient could then be referred directly to that doctor where cancer may be possible or needs monitoring. It's what happens in A&E in hospitals if you think about it, where after an initial triage people are sent to various areas of specialisation.

Barry
User
Posted 23 Sep 2026 at 14:54

There is a massive variability in monitoring for AS across the country, and there is an initiative to standardise that.

A GP should never have been doing this. It should have been the hospital in the form of a consultant, or a clinical nurse specialist if everything is stable.

You really do need to take responsibility for monitoring your own readings and not rely on others, because that easily goes wrong. This is where support groups can help. The big failing is GPs monitoring PSA after treatment, and using the PSA values for those who've never been diagnosed with prostate cancer rather than the limits set by the consultant based on the treatment received. This was the main topic at PCUK's Clinical Nurse conference a couple of years back.

 
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