How do you know when advanced prostate cancer has spread? PSA low.

Hello Liesbet.

A warm welcome to the forum, however under the circumstances may I pass on my condolences and am so sorry to read of your father's death and the circumstances leading up to it.

You must remember that none of the forum members are qualified medical staff and are only able too you give you their  understanding from a personal point of view. Having read again what you have said, to help you:-

* A PSA test is only an indicator of how bad the Prostate Cancer is.

* You say he was on Hormone Therapy, you don't say when his diagnosis was, or what it was. (Mine is Gleason 9(5+4) T3a N0 M0) this would help with any further answers and also did he receive any radiotherapy?

* Do you know when he last had a CT or MRI scan? Was he on 6 monthly oncology meetings or urology meetings?

* Do you have a record of his PSA readings from diagnosis to date?

I am sorry to ask the above, but it will give me and the other forum members the history of your dad's journey and we should be able to shed some light on what has gone on.

I am not around later tonight but if you have the answers for us we will do our best for you.

With my "Champs" hat on can I just say we have another forum Emotional support forum where you may find additional support - just click on the link I have provided and when the page opens up just click "join" on the black banner at the bottom of the page. You can also access further support by ringing MacMillan Support line on 0808 808 00 00 - They are a great bunch and will support you in any way they can.

Once again - I am so sorry to find you here - but we are here for you.

Best wishes - Brian.

Hello Brian,

Thank you for your kind response. These are all the details that I know. I hope they may shed some more light on his situation.

My Dad ws diagnosed with Prostate cancer at the end of 2019. He had a course of hormone therapy followed by Radiotherapie. 

Unfortunately the Metestses were picked up on a CT scan in the Summer of 2021. Since then he had been on 3 monthly Neoadjuvant Prostap injections, no further treatment.

Dad didnt have routine appointments with an oncologist (because he wasnt driving and couldn't get to the hospital easily). He was told he could just could call a "prostate nurse" as and when he needed.The last appointment with an oncologist (the one that I mentioned) was a follow up to  hospital visit for suspected spinal cord compression. Not  routine visit.

He had been having increasingly more problems with continence and had an appointment with a urologist. Unfortunately he never made this.

Dad's PSA when diagnosed was about 6, it  went down gradually through using the Prostap and has been 0.01 for the last couple of years (we thought this meant that the cancer in his body was stable and not getting worse)

His diagnosis is T2b NO MO adenocarcinoma prostate, Gleason 4+3=7. I am afraid  not sure what the T2b and Gleason scores are indicators of.

I look forward to hearing from you or another member of the community when you have time.

Kind regards,

Jo

Hi Jo

Sorry to hear .

I am a bit puzzled though.

The stats u have given would indicate that the cancer was contained within the gland but you are referring to mets elsewhere in the body.

Unless I'm reading it wrong.

Regards. 

Steve 

Hello Steve,

Thank you for your response.

I can go through my Dads medical history to check the facts. This is what I had understood from my Mum though.

What makes you say that the stats suggest the it was contained? We were definitely told that the cancer in the sacrum and pelvic nodes were secondary to the prostrate cancer.  

Kind regards,

Jo

Hello Jo

Thank you so much for the information so from what you told me at diagnosis Late 2019

PSA - 6 - That's quite low and nothing to worry about.

Gleason 7 (4+3) This is from the biopsy examination of the samples taken. The numbers mean "Most of the cancer cells found in the biopsy look likely to grow at a moderate rate. There are some cancer cells that look likely to grow slowly".

The following will be from his MRI scan:

T2b - The cancer is in more than half of one of the lobes of the prostate, but not in both lobes of the prostate.

N0 - No cancer can bee seen in the lymph nodes.

Mo - The cancer hasn't spread to other parts of the body.

So that's his initial diagnosis in Late 2019 - he would have been placed on Hormone Treatment to be followed up with a course of Radiotherapy given with a view to being curative.

So all's well until Summer 2021.  His post RT PSA is correct at 0.01 which means the RT is working.

Why then a CT scan in Summer 2021 which discovers the Metastasis and he's put on Neoadjuvant Hormone Therapy - that's usually before radical radiotherapy. This is where I am unsure what's going on.

All's going well with his PC treatment according to his PSA readings and diagnosis - and in a short period of 18 months it's escaped the prostate and "gone walkabout" even though his PSA is almost undetectable and he had a diagnosis which was treated as being curative.

It doesn't add up to me. Let's see if anyone else has any answers

I hope this helps - I am always about - you can contact me by leaving a message or if you want a chat and some reassurance you can personal message me - my message box is open so you don't have to send a friends request.

Best wishes - Brian.

Hello Liesbet

i am so sorry to hear about your father’s last days and can well understand the shock and distress you and your family are feeling. 

brian has given as much ( and more!) explanation than I can give but I would like to add another point. It is well known that prostate cancer can and does in time escape the control of the ‘first line’ hormone therapy. When this happens there are ‘second line’ drugs which the doctors call upon. If these don’t work then there is chemotherapy . There are also newer drugs coming . I am wondering whether or not your father was prescribed any of these drugs for  when the first line hormone therapy stopped working ( known as castrate resistance)?

some prostate cancers also don’t result in increased PSA. I don’t know much about these but others here might be able to fill you in. Is this the reason for everyone thinking the cancer was well controlled?

my other concern is a seeming lack of proper care when your Dad was sent home ‘for rehab’  - no provision of a hospital type bed, inadequate pain control, lack of GP response etc. Is this something you could raise, in due course and when you have the emotional strength, with your local care providers? It won’t help your Dad but it might raise enough flags to prevent other families having to go through the same experience - a little positive and some recognition ( even apology?) to come out of a devastating experience, perhaps? 

I send you and your family love and hugs at such a sad time and I’m sure all of us will be thinking of you.

Firstly I am so sorry to hear of your loss.

As others have already said this doesn't add up.

What I am thinking is that although your dad died of cancer, that maybe it wasn't picked up by PSA testing was because it wasn't Prostate Cancer and it was a different type of cancer that started somewhere else. 

In 1999 my father in law had a painful elbow and at first he was told that it was tennis elbow. Fluid was aspirated and he was sent home from hospital with pain killers. A couple of days later he got a phone call to say they'd found something and he needed to be admitted for more tests. He had a chest x-ray and this was clear. We asked if we could be there when he was seen by a Dr so we could hear for ourselves what they'd found as my father in law said he'd not been told. We never got to see a Dr as they discharged him.

A few weeks later he rang us and asked us to visit because he wanted to tell us the truth. It transpired that he'd been told when he was in hospital that he had bone cancer and he would be treated with radiotherapy. He had one session of RT and was told that he would get a phone call giving him his next appointment. The following day an ambulance arrived to take him for another session and when he told them he didn't have an appointment they rang the hospital and confirmed he didn't have an appointment.

That appointment never came. 

Within weeks of him telling us the truth he lost the use of one of his legs and at another appointment it was confirmed that it had spread to his leg. He was asked if the radiotherapy had made any difference and he said he didn't know because he'd only had one session. The Dr told him that it wasn't meant to cure him, just to make him more comfortable and we were shocked to hear him say that he was terminal.  It later transpired that he had lung cancer and the bone cancer was secondary to this.

His elbow pain started in June and he passed away in a Hospice in November.

Sorry for the long contribution, but I wonder if your dad's situation could be similar and if he knew more than he was telling you, thinking he was sparing you from the worry, which as an adult he was allowed to do. 

I can't remember what it said on his death certificate but I know from when both my parents died in hospital it listed the main cause as pulmonary embolism which I think is their stock reason which can only be confirmed by post mortem, which they don't do if the patient dies under their care. Although in my father's case I was asked if I wanted one I decided against it. If it would have helped medical science to help others I would have agreed, but they said it wouldn't help anyone.

If your dad's death certificate gives the cause of death as Prostate Cancer, this could be just because he was being treated for that with HT and it was easier to use this for them and you than looking for another cause. 

It's very early day's for your grieving process but I can assure you that time is a great healer. Cherish the memories you have and look after your own wellbeing x

Hi L

Ok, I think I.ve worked it out.

Looks like it was contained when initially diagnosed, looking at the stats u have given which were low

Then he had the treatment RT and HT  and after that everything looked ok with low PSA.

But looks like it quietly came back even though the PSA was low . How many PSAs was done between  treatment finishing and finding out that it had spread?

Scans are not normally done when treatment finished instead relying on PSA.

I would say very unusual that HT keeping PSA down but cancer still spreading, perhaps more to it .

Again, sorry to hear what has happened.

regards

Steve

sending condulences

Hello  and so sorry to hear about your dad and experience with the care system.. as others have said. The PC can be rather rogue at times but tbh I’m not sure this all stacks up as a cause Like others my concern is a seeming lack of proper care when your Dad was sent home ‘for rehab’  as others have said.  
it may be worth raising when you feel strong enough. The PALS or complaints depts of the hospital and primary care group can help with this. with your local care providers? 
man apology won’t change things for your dad but would be an acknowledgment of failings and hopefully help others. 
wishing you well. Xx