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Dad just been diagnosed

User
Posted 25 Nov 2022 at 09:16

Morning All,

My Dad was diagnosed with locally advanced prostate cancer yesterday after 4months of tests from going to the doctor with something unrelated. The tests consisted off PSA, MRI, CT and bone scan.

I have found this forum to be very helpful and see everyone pulls together with advice and help which must be so warming.

I went into the specialist room with him yesterday for a second ear but the consultant wasn't overly forthcoming with information and said it was locally advanced and gave us a leaflet to read up about it.

He didn't give Gleason scores just told us his PSA was 16 and that he has had it for a long time already. He said it was locally advanced and the CT and Bone scan was clear.

He also has said that it is treatable but not curable, I have read that at this stage it might be able to be curable but definitely no expert just going off what I have read. 

The treatment plan is hormone tablets and injections for 3 months and then radiotherapy after that for a few weeks daily.

What are the next steps in terms of seeing the specialist and people again to see how he is reacting to treatment etc.

Thanks in advance for any advice/info.

Nick

User
Posted 25 Nov 2022 at 09:54
Generally the procedure is that he'll be assigned a specialist cancer nurse who will be his contact point if any issues arise, although most men cope with HT absolutely fine. A week or so prior to RT starting he'll be brought in for a planning session where all the RT procedures will be explained.

Best wishes,

Chris

User
Posted 25 Nov 2022 at 10:23

Originally Posted by: Online Community Member
He also has said that it is treatable but not curable, I have read that at this stage it might be able to be curable but definitely no expert just going off what I have read.

So far the picture is incomplete, though from what you've said your father will be in a position to receive treatment that will keep him alive for many more years. "Curable" is a contentious word for cancer treatment and recovery. It's impossible to say that someone who has recovered from cancer, won't have a recurrence at some time in the future and the word "cure" is almost forbidden for some people. It's also quite possible that someone who has been treated for cancer will not have recurrence and will live on to die from something completely different. Does that qualify as a "cure"? Has to go pretty close.

Jules

User
Posted 25 Nov 2022 at 10:27

Yes I understand that totally, thanks for your input

User
Posted 25 Nov 2022 at 10:36

My surgeon pronounced me 'cured' at my first post RALP consultation. Must say I was surprised and took it with a pinch of salt. Following that, my PSA tests have been <0.06: 0.06:0.08. Microscopic rises I know and I am now waiting for the result of a test I had two days ago. Hey Ho. 

 

 

User
Posted 25 Nov 2022 at 18:09
was there no biopsy? You don't mention it?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Nov 2022 at 18:15

Yes he had a MRI followed by biopsy then CT and bone scans over a 4month period. Thanks

User
Posted 25 Nov 2022 at 18:28

I think you need to ask for further information. Get the Gleason score and his TNM score.

I would want to know what the treatable but not cured means aswell. Are they expecting him to stay on hormone treatment for life? 

My husband was diagnosed advanced, we got a second opinion which changed it to locally advanced, it was in one lymph node. (All info on my profile) He had HT for 6 months and had operation. His psa is now undetectable and he’s not had any HT for 12 months and his testosterone is up to 10. I know we can never say he is cured and further treatment was always expected….but who knows, we’re just praying things stay this good. Everyone’s situation is different but there is always hope. 

User
Posted 06 Dec 2022 at 14:38

Hi, so my Dad has just had a letter following his results appointment a couple of weeks ago. This had more information on it;

Gleason score 3+4 in 7 cores. Stage T3b in right side. N0 M0 CPG 3 WO 2 PSA 16.

He is on Cyproterone tablets for 3 weeks and then 3 monthly injections with radiotherapy in around March'23 time.

The specialist said it wasn't curable but treatable. Any further advise would be greatly appreciated.

Also he has to go for a liver function blood test in 3 weeks does anyone know what that is for?

Edited by member 06 Dec 2022 at 14:50  | Reason: Not specified

User
Posted 06 Dec 2022 at 16:50

Nick, the test results indicate his PCa can be treated with curable intent. There is no evidence of lymph node involvement  (N0) and no evidence of bone mets (M0). Certainly the HT/RT treatment that has been planned is for a curable trajectory. 

User
Posted 06 Dec 2022 at 19:37

Originally Posted by: Online Community Member

Nick, the test results indicate his PCa can be treated with curable intent. There is no evidence of lymph node involvement  (N0) and no evidence of bone mets (M0). Certainly the HT/RT treatment that has been planned is for a curable trajectory. 

I thought the same Chris. I would have thought he had locally advanced PCa and not advanced so therefore as you say, be treated with curable intent. 

User
Posted 06 Dec 2022 at 23:17
I don't think it is helpful for any of us to state that the cancer is curable when the consultant, with all the diagnostic information in front of him, advises that it is not. It has the potential to create false hope. Having said that, dad cannot be CPG3 and T3b at the same time so it may be that the urologist believes the diagnostics are underplaying the situation - or there is a typo in the letter? Also, many cancer specialists will avoid saying that any cancer is curable - what they are aiming for is a very long remission.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Dec 2022 at 09:31

Thanks for all your replies, very helpful

User
Posted 07 Dec 2022 at 10:15

It’s certainly not my intention to give anyone false hope, but after what we went through I think it’s important to question. 
Not sure how old dad is but we felt my husband at 73 was almost written off. Lots of decisions made about his future without us ever having a single appointment with a consultant!

I realise these consultants do incredible work and I am completely in awe, but I guess like every profession you get different attitudes. Some I find are set in their ways and happy to do what has always been done and others are more innovative and want to keep pushing boundaries as to what can be achieved….we were lucky enough in the end to find the latter.

The difference in mindset for Rob between incurable and curable intent was immeasurable. So even if the original prognosis was right (hopefully not), I know he’s in a much happier place believing in a better outcome. 

A really good point Lyn has made about the CPG3 and T3b, definitely worth getting that explained a bit more. 

Really wishing your dad all the very best Nick.

 

 

User
Posted 07 Dec 2022 at 10:23

Thanks for your reply, I agree with Lyn in that different consultants use the word cure differently. 

Does anyone know why he is having a liver function blood test in 3 weeks time,

Cheers Nick

User
Posted 07 Dec 2022 at 22:48

Does anyone know why he is having a liver function blood test in 3 weeks time

It is probably a routine test because of the Cryproterone he is taking 

 

 

 

 

 

 

User
Posted 08 Dec 2022 at 08:17
Indeed. In a (very) small number of people it causes liver problems, so a liver function test is routine.

Cheers,

Chris

User
Posted 19 Feb 2023 at 19:11

Hi All,

Just a little update and some confusion so any help would be greatful, if you read above a few months ago my Dad was diagnosed and these were his results on paper;

Gleason score 3+4 in 7 cores. Stage T3b in right side. N0 M0 CPG 3 WO 2 PSA 16.

He started hormone therapy straight away and radiation 3months after. He went yesterday to the oncology appt to discuss his radiotherapy and she said she looked at his bone scan and there is a really small lesion in his rib. She doesn't know whether it is secondary bone mestatsis or not? His treatment will still remain the same either way.

Why only now has he been told this, how many other consultants would have looked at it? Should chemo now be offered?

We were originally obviously shocked but found a positive in the results that it was T3b and no bone or lymph node involvment. He hasn't had any more scans so is it just a case that a more senior consultant happened to pick it up? 

 

Thanks,

 

Nick

User
Posted 19 Feb 2023 at 22:09

Reading scans can be very subjective; it might just be that she has a view which is different to the view of the multi-disciplinary team that agreed the diagnosis you were given in writing. It will make no difference to his current treatment plan but I think his PSA will be monitored closely when he comes off the HT.

I understand that it might be a bit shocking for you all but, given a little time to process the information, you will perhaps come to realise that it is a blessing in disguise .... if the MDT had picked up a suspected bone met, he probably wouldn't have been offered the RT and would be on lifelong HT instead.

Hopefully, this onco is mistaken and the MDT were right.

Edited by member 20 Feb 2023 at 00:59  | Reason: Not specified

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

User
Posted 19 Feb 2023 at 22:13
Unless of course that bone lesion was the reason the original onco said it was treatable but not curable and it is the 'clear bone scan' that has been misreporting or misunderstood?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2023 at 23:27

Hi Lyn,

Thankyou for your reply, she said that it was only her that picked it up and it was so small they wouldn't re scan as they would still be none the wiser. Wouldn't they offer Chemo with bone mets? 

Thanks

 

 

User
Posted 20 Feb 2023 at 00:56

Not at this point, usually. Let's imagine that your dad had been diagnosed with multiple bone mets all those months ago ...

1. the standard treatment route until fairly recently would have been HT until it stopped working and then chemo at the end of life stage to try to extend life a little. Chemo doesn't kill prostate cancer

2. more recently, chemo would have been offered at diagnosis because it is believed it can make the HT last longer - but lifelong HT is still the only treatment plan

3. just as the pandemic started, NICE allowed men to have a new generation HT with the standard HT - this was because they wanted to minimise the number of patients going to hospital for chemo and then dying of Covid. The new generation HTs are still only offering lifelong HT

4. Very recently, there has been much excitement about research that suggests men with bone mets might benefit from having the prostate removed or blasted - potentially makes the HT last much longer than the other options. Exciting development but as rare as hens teeth - many men simply can't find a hospital or onco willing to do it.

In effect, if this onco is right and your dad does have bone mets, he has accidentally got into group 4, the best place to be.

It would be madness to put him through chemo or double HT (both of which have some pretty serious side effects) if they are not even sure it is a met. The only way of finding out will be to wait and see what his PSA does when the HT is out of his system.

Edited by member 20 Feb 2023 at 00:58  | Reason: Not specified

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

User
Posted 20 Feb 2023 at 08:31

Thanks for all your help Lyn, I can see you are a great help for everyone on this group.

Would it be worth him trying to get a third opinion and having another scan somehow? I'm guessing the difference between a stage 3 and stage 4 diagnosis is a big difference and changes alot?

 

Thanks,

 

Nick

User
Posted 20 Feb 2023 at 08:48
No point having another scan as he has been on HT. All a scan could say now is a) the rib lesion is still visible so it's probably not cancer or b) the rib lesion is not visible so either was cancer but has responded well to HT or was down to some other cause like a fall or stumble.

For how long is he due to have HT?

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

User
Posted 20 Feb 2023 at 09:24

He is due to start RT next week and they said he will be on HT for another 2years.

 

Thanks,

 
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