Spread with an undetectable PSA?

Hello Jnc . I remember reading your husband's journey and he's one with the non-secreting PSA, so you can't rely on PSA results.

I can't really comment on this issue as I am on the RT/HT route, however as I can detect your anxiety and because of the issues with the PSA results personally I would ring or e-mail his oncology department to express your concerns and suggest that a CT scan at least is required. Sorry I can't of any further help but you need answers.

Please let us know how you get on just in case this problem arises again.

Best wishes - Brian.

Hi Brian, thank you for replying. 
I think we will give them a ring on Monday, hopefully they will look at doing something and not just go off his PSA being undetectable.  I will let you know how we get on after we call them.

Very best wishes to you x

Hi Jnc ,

I understand your situation because my dad received a very similar diagnosis 1 year ago and I have the same concerns.

gleason was 10, t3b N1 (only 1 lymph node was involved at MRI/CT scane) M0 and PSA only 4 at diagnosis, so locally advanced.

He started 3 monhtly injection HT in november 2022: PSA in february dropped to 0.2. So the therapy seemed working (?)

Then he started 30 sessions radiotherapy with curative intent in march and last PSA in august was 0.01.

Next appointment will be in february 2024 (after 6 months) with PSA test only.

He always suffered from sciatica. Also, since last injection in august, he also complains about leg weakness. Basically, he struggles with doing the stairs despite generally good level of fitness. We didn't say anything to the doctors at last appointment because this pain came up a few weeks later, 1 month ago.

Listening to the doctors advice at the beginning of the journey, Radio-hormone therapy needs at least 1 year to show results so prescribing scans after a few months is useless. However, If the pain won't disappear soon, I will insist on discussing it with doctors before next visit and asking for a scan as well.

Please, keep me updated about your OH journey. I will do the same!

Stay strong and positive for him as I'm (trying to) do!

Hi, thank you for your reply.  
It appears you are in the same situation, we did wonder if it could be sciatica but his  injection was 5 months ago, due again in November.  We rang the MacMillan nurses,  who didn’t seem concerned as his PSA  undetectable, but because of the aggressive cancer they have ordered an MRI, I did express my concern about his initial low PSA on diagnosis and my concern at reading too much into PSA.  
I really do think we have to fight to make sure we get the best of care we can unfortunately x

Hi Jnc ,

Thanks for the update and finger crossed for the MRI. Be positive, always!

Happy to know that nurses are not concerned as the PSA is undetectable (same as docs told us at last appointment), that's more reassuring! For sure I agree with Millibob  in saying that PSA test can't be the one and only way to check the desease/treatment, but maybe it's anyway a good result suggesting that the HT is actually working.

Probably we should just trust the experts!

keep each other updated!

Thank you x

I certainly don’t feel they should only rely on PSA as there are so many men whose PSA is non secreting.  when my OH was diagnosed we were told they wouldn’t rely on PSA, but would scan, when we asked about scanning after treatment they said there’s no point as everything distorted for a long time after radio but instead rely on PSA.  It’s such a worry as we’ve also been told that PSA after treatment wouldn’t be a true reading either.  

all we can do is trust the professionals!!

Jnc

Hi 

It took a while for me to get my head around being diagnosed.

In November 2019 I had a normal PSA under four.

However after being treated for a possible UTI the symptoms kept going.

I was visiting the bathroom on average of 25-30 times each 24 hours,

the fatigue from this was massive.

it was in June 2020 that I took myself off to A&E with very painful urine retention.

In the seven months that had passed my PSA had risen to Twelve.

The highest it got was 17

After a CT scan, bone scan I was told that I had a 90% chance of having prostate cancer and 10% risk of infection mimicking cancer.

I had a TURP operation to help me to pee and all the biopsies taken revealed that every one had come back cancerous.

 I kept asking myself why in such a short time had my normal PSA Risen to a point that my prognosis was as follows-

Locally Advanced

Aggressive

High risk

T3b  N1 M0 (spread to the lymph nodes deep in my pelvis)

Gleason 4+5=9

Life expectancy 5-10 years

It was only when I asked after months of beating my self up as to why things had changed so quickly.

 “I Was low secreting”

As you can imagine every Six months at PSA time I worry.

My last PSA was 0.01 undetectable in August just gone.

However the worry has set in now as after a repeated bad chest and two lots of antibiotics I am waiting for a second X-ray as an oval density was found in my right lung.

Thank you for reading this, I hope that it all makes sense.

Feel Free to read my profile.

Take care everyone, stay safe and “never doubt your pain”

Spud

”You don’t know how strong you are,

until being Strong is your only choice”

Bob Marley 

Please forgive me as I am writing from complete ignorance but am wondering whether repeated scans with contrast might have an adverse effect on the body? Is this why they don’t offer routine scans? But, then again, people on active surveillance have routine scans, I think? So, is this lack of scanning due to cost saving and lack of resources? Does anybody know what they do in other countries?

It does take a while to come to terms with, we both spent a good few months angry as he had been going to the GP for at least 2-3 years with different symptoms, all of which we now know was were symptoms of PC, now he’s incurable.  
it is such a worry when they rely on PSA alone.so totally understand your fear.  My OH has 3 monthly PSA tests because his is non secreting, maybe it’s different from area to area.  
I understand your worry re your chest X-ray, its just the dread of spread.  my OH is getting an MRI on his back/buttock area as he’s in terrible pain with it, we know it’s probably something not related to PC but until we know then we will worry. 

Hopefully your X-ray comes back good, I’ve everything crossed x

Hi, I’m not sure but there’s no other way of checking other than scans, maybe MRI the least damaging bit cost and resources must come into it.  I know in certain areas PET scans are done as routine, when first diagnosed, but my OH never received one. 
Very best wishes x