Active Surveillance - how effective? - Localised cancer - Prostate Cancer UK Online Community

User

Posted 26 Apr 2021 at 17:21

Hello all,

I am 65 years old.

After an initial examination and PSA test I had an MRI scan which showed a couple of suspicious areas. I went for a biopsy and the outcome was that I have prostate cancer. I'm told that mine is a very 'mild' and restricted form of cancer. That was in February 2020.

My cancer is described as Gleeson 3+3 in a single core - low volume disease.

My PSA was initially 8.5 but after the biopsy it increased to 11.5 - I was told that this could have been due to 'swelling' of the prostate following the biopsy. However it has stayed at about 11.5 for over a year now.

After the first MRI my prostate was 89 ml in size. After a second MRI a year later it has increased to 121 ml.

Apparently the cancer hasn't increased in size.

After the initial diagnosis, the consultant recommended Active Surveillance - to do more would be over-treatment he said. The surveillance was to be 3 monthly PSA tests and another MRI scan after 12 months. He explained that this should detect any change or possible spread, so that more intensive treatments could then be considered if required. This seemed like a sensible way forward.

My concerns are -

- the fact that my PSA remains at a relatively high level of 11.5 (this doesn't seem to concern the specialist nurses, who say it is the doubling rate that matters and mine is 4.7 years).

- the fact that my prostate has increased in size by about a third in a year (no comment from the specialist nurse).

- More generally, how effective is Active Surveillance - given that it seems to rely almost entirely on 3 monthly PSA tests, which are apparently notoriously unreliable. I'm not sure whether any future MRI scans are planned.

Does anyone have any thoughts on this?

User

Posted 27 Apr 2021 at 08:28

A chap I know in a US support group has been on active surveillance for 11 years, and still going.

Prostate Cancer UK run an Active Surveillance online support group, which meets monthly on Zoom. You might find that helpful.

User

Posted 10 May 2021 at 10:19

Update: telephone appointment today and PSA is up to 13.3 (it was about 8.5 when first diagnosed in February 2020 then increased to about 11.5 for the last year).

They want another PSA in about 6 weeks and depending on that referral to the MDT.

They confirmed that MRI scans would normally be every year, on anniversary of diagnosis.

They still seem unconcerned the prostate increased from 89 to 121ml in a year - not too unusual at my age (65) they say and could explain increased PSA.

Will see what next PSA brings.

Show Most Thanked Posts

User

Posted 26 Apr 2021 at 18:48

PSA tests are unreliable at identifying whether someone definitely has cancer but as a monitoring tool, it is highly reliable. Presuming you were diagnosed with adenocarcinoma, there is years and years of data that tells the medics how the cancer will behave ... if your cancer was active, the PSA would rise. As yours is now stable and your doubling time is very slow, the PSA test with annual MRI should be a robust tool for identifying whether and when you might need radical treatment.

Some men are successfully on AS for many years; others find that their cancer progresses within a couple of years and they choose to have surgery or radiotherapy at that point.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2021 at 18:50

PS re the volume of your prostate - this is subjective so different radiographers may estimate the size and come up with different views. It is also fairly normal for a man's prostate to increase a bit with age.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2021 at 19:22

Thank you for your quick reply.

I’ve not heard the expression Adenocarcinoma from anyone.

Is it normal to have an annual MRI scan? I was under the impression that I would have the one I’ve had after 12 months and that would be it. Which was a concern that I’ll raise at the next telephone appointment.

My health authority seem to be a bit ‘tight’ on treatments. They keep pushing to move the PSA tests out to 4 monthly of even 6 monthly. I’ve resisted that so far, on the basis that a longer spacing wouldn’t be very ‘active’.

Regarding prostate size - an increase of a third in a year seems to more than an ‘increase a bit with age’ but I take your point about it not being a very scientific process to assess size. I wonder why the specialist nurse didn’t offer that (or any) explanation.

User

Posted 26 Apr 2021 at 19:40

Hi, A 122mL prostate is big. 5 times bigger than most. I'd be interested in why it's so big especially when you say it grew 30mL after the mri. I don't know how PSA relates to size but if it was linear your PSA would be normal.

I'd guess your is a slow growing or perhaps non-growing growth. It is sometimes said most older men have some form of prostate cancer.

3 monthly psa tests should be good enough for as long as it lasts and that could be a long time.

If you don't mind me saying. You might consider being nice to your prostate and bladder with your diet and drinking. If you're a bottle of wine in a night person you might try to keep it to half and so on. All the best Peter

User

Posted 26 Apr 2021 at 19:49

There are many types of prostate cancer, adenocarcinoma is the most common by far. If you had one of the rare types, they wouldn't have put you forward for AS.

Under NICE guidelines, AS should include 3 monthly PSA, annual DRE and MRI if they believe anything is changing. In many areas the MRI is annual, in others the MRI is offered only if the PSA is rising.

Don't be pushed into less frequent PSA - if they test your PSA infrequently it rather makes a nonsense of the active part of active surveillance!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2021 at 20:07

Peter - I’m going to make more enquiries about the increasing size. When I thought about it afterwards I was a big dismayed that the specialist nurse just sort of shrugged (figuratively - it was a telephone appointment).

I have stopped drinking mid week - so good advice there.

Lyn - not had a DRE since first diagnosed, but all appointments since then have been telephone.
I’m going to try to push for annual MRI’s unless there is a medical reason not to have them.

Thank you both.

User

Posted 26 Apr 2021 at 20:17

MRIs are completely harmless unless you have metal fragments in your body. The scanner just uses a magnetic field; there's no radiation. There's no limit to the number of MRI scans you can have.

Best wishes,

Chris

User

Posted 27 Apr 2021 at 00:45

Originally Posted by: Online Community Member

That statement may be correct unless 'Contrast' is injected as part of the scan. Inverably, the Contrast used in MRI is 'Gadoliniuum', where there may be a residue build up in the body and be of particular concern to people with kidney problems. Scroll down to 'Gadolinium in the News' in this link https://qsprivatehealthcare.com/knowledge-base/mri-contrast-is-there-a-need-to-worry/

Barry

User

Posted 27 Apr 2021 at 03:41

My friend in his seventies, Gleason 3+4=7, has been on active surveillance for five years quite successfully.

He has quarterly PSA tests, annual hi-res MRI scans, (which are somewhat blurred due to a metal hip) and an annual consultation with his urologist. He has seen five consultants urologists on three continents and he feels this London-based one is the best.

He has been to the famed Mayo clinic in the States, and is following a ‘cancer reducing’ diet recommended by them, and his PSA is going down incrementally. He runs five miles a day.

He has paid privately for all of the above.

Best of luck to you.

Cheers, John.

User

Posted 27 Apr 2021 at 08:28

A chap I know in a US support group has been on active surveillance for 11 years, and still going.

Prostate Cancer UK run an Active Surveillance online support group, which meets monthly on Zoom. You might find that helpful.

User

Posted 27 Apr 2021 at 10:59

Hi,

If done correctly, Active Surveillance can be highly effective in the over treatment of low grade PCa. I've been on Active Surveillance since August 2019, it has consisted of PSA tests every 3 months to start with and an MRI every 12 months or sooner, if needs be. I get a telephone nurse led appointment every 3 months with my PSA results and we discuss how I'm feeling physically and mentally. I'm given the choice of bringing forward or extending the next test depending on the result, but I'm also re-assured that I can proceed with a different treatment plan as well. There's plenty of information on this website and also on the Europa Uomo website. Infact, they held an interesting zoom webinar last week, the 2nd one to be held will be on the 20th May 2021. The link to last weeks webinar is here:

https://www.europa-uomo.org/news/active-surveillance-is-safe-and-effective-webinar-hears/

All the best,

Paulo

Please check out my profile.

User

Posted 27 Apr 2021 at 21:29

Thank you all for all the useful information.

Paulo - I attended the same hospitals as you, so hopefully won’t be met with resistance if I ask for annual MRIs.

The ‘contrast’ shouldn’t be a problem. I don’t have kidney disease, just had stones once (still have one lodged in there).

User

Posted 10 May 2021 at 10:19

Update: telephone appointment today and PSA is up to 13.3 (it was about 8.5 when first diagnosed in February 2020 then increased to about 11.5 for the last year).

They want another PSA in about 6 weeks and depending on that referral to the MDT.

They confirmed that MRI scans would normally be every year, on anniversary of diagnosis.

They still seem unconcerned the prostate increased from 89 to 121ml in a year - not too unusual at my age (65) they say and could explain increased PSA.

Will see what next PSA brings.

Notification

Active Surveillance - how effective?

Join the online community now.