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Diagnosis and the truth

User
Posted 24 Feb 2018 at 11:18
Hello I would like some help please ,

My partner has been diagnosed with metastatic prostate cancer. Spine tumour kidney tumour and lymph nodes.

He is having his kidney removed this week and has had a hormone injection. The pain is terrible in his pelvis and legs and has a morphine patch. Which dulls the pain but he has to have top up tablets .

My question is this curable as no one will answer my question all I get is “let’s remain positive “ I am being positive but also realistic and will need to put many things in place I.e give up work possibly move to a bungalow etc

Thank you

User
Posted 24 Feb 2018 at 13:27

Julie, With metastatic PCa it is better to think in terms of survival than cure. The latter is not impossible, but unlikely. But survival can be for many years. Can you give more details if the diagnosis? PSA, Gleason score, biopsy results etc? It would help us advise.

AC

User
Posted 24 Feb 2018 at 20:12

Hi Julie, metastatic cancer is incurable but the hormones will starve the cancer and the pain should reduce very quickly. We have had members who lived for many years on hormone treatment.

It is probably not a good idea to make major decisions like giving up work or moving house - it is a bit too soon to be able to judge how successful the treatment will be.

Edited by member 24 Feb 2018 at 20:14  | Reason: Not specified

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

User
Posted 24 Feb 2018 at 21:39
Thank you for your replies

He had 8 biopsy and 8 came back positive his PSA is 120 and I believe level 8

He had the injection 2 weeks ago but the pain is worse

He was being treated for the last 6 months for a slipped disk until a new dr joined and did the scans

He had pins and needles now on his hands a and feet and has flatulance which he is so embarrassed about

User
Posted 24 Feb 2018 at 22:08

The increased pain might be down to something called tumour flare - when the HT starts, the cancer cells realise that they are being starved and become more active as they run around looking for food. It should settle back down soon as they will run out of energy and food.

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

User
Posted 24 Feb 2018 at 23:21
Thank you

I understand it’s hard to predict but these symptoms and scores from what I’ve read this is extremely bad

How do I get the Drs to tell me ?

I even left my bag behind in the specialist so I could go back and ask but again just got stay positive do they not realise some people can only deal with trauma head on

User
Posted 25 Feb 2018 at 00:21

It isn't that easy.

- Firstly, the doctors have a legal duty of confidentiality - they wouldn't be allowed to give you information without your husband's consent so unless he has already told them that he is happy for you to have direct conversation, you might have a struggle to find anything out
- if he has told them that he doesn't want to know, they are unlikely to tell you
- the doctors have no way of knowing how long he has left so it is almost impossible to answer your questions
- I am not sure where you have been looking but the scores you have posted here aren't that bad, and the scores can't predict what will happen anyway

We have had members like Trevor diagnosed with a PSA of 13000 and lived for 5 years, Si had a PSA of 3 but mets all over his skeleton and is still here being a walking miracle, Irun was diagnosed with mets all over his body and he has done extreme marathons in the years since. Devonmaid's husband had a Gleason 9 or 10 and is still here 6/7 years later. On the other hand, we have had men diagnosed with quite low Gleason grades who died really quickly because their cancer didn't respond to the hormones. At the minute, your partner's doctors can't tell you what you want to know because it is impossible to guess.

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

User
Posted 25 Feb 2018 at 00:29

It would help if you could get hold of the proper diagnostic results. From what you have said, he is a Gleason 8 but it would be useful to know whether that is a G8(4+4) or a G8(5+3) or a G8(3+5) - it makes a difference.

Also note that the Gleason can be anything from a G6(3+3) to a G10(5+5) so for aggressiveness your partner is in the middle-ish although it is towards more aggressive if he is a G8(5+3)

And in terms of his PSA, all that indicates is that there is a problem - the number itself doesn't tell you how bad it is. Finding out the full results (Gleason, staging (a T number) and type (there are at least 27 types of prostate cancer) will help.

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

User
Posted 28 May 2018 at 21:41

Hello

the kidney removal was successful and the pain did go but then he started limping .. the cancer is now in his knee and spine.

still no one will tell me what his life expectancy is, guess it’s just gonna keep popping up everywhere

 

 

User
Posted 28 May 2018 at 21:55
The hormones should be controlling this - what was his most recent PSA score and did he have his testosterone measured? if so, what was the number?

Do you have a clinical nurse allocated? Can you speak to them to clarify whether it was already in his knee or whether this is a new tumour site? You had already been told it was in his spine when you joined us in February so are they saying this is a new hot spot or the same one?

You really need to know whether the hormones are working - can you get hold of the scores?

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

User
Posted 28 May 2018 at 21:56
They aren't telling you about life expectancy because they don't know.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2018 at 22:08

His psa score has dropped down to 1.27 his prostrate score is 4+3 his kidney was a level 7 

it was thought the spinal cancer was secondary to the prostate but now because of the knee it’s thought but not confirmed it’s secondary to the kidney which apparently is a hole new ball game. 

User
Posted 28 May 2018 at 22:43
So they are saying the kidney tumour is not related to the prostate cancer?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 May 2018 at 22:53

No he has 2 primary cancers they thought the spine was secondary to the prostate but now with the knee they are saying secondary to the kidney 

 
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