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Father-in-law just diagnosed really scared as results not good PSA 3900! With numerous Metastasis,

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User
Posted 13 Jul 2017 at 18:09
Just been reading all the really useful information on the Website which is excellent although now very scared as my father-in-law has advanced prostate cancer, his results at diagnosis was PSA 3900, numerous metastasis in skeleton and lungs including one tumour on spine pressing on cord, he went into hospital with what we thought was his diabetes being out of control, to find out this!

He is 81 and not really understanding what's going on, he's had radiotherapy and hormone injection plus vitamin injections, he seems to focus on the diabetes and doesn't seem to want to talk about the cancer, whilst in hospital a consultant told him that there are lots of treatments to manage his cancer plus an excellent new tablet, which is all he keeps talking about, it worries me that he thinks this will cure him.

He has follow up appointment and further hormone injection next week, the family want to know his outlook but I'm not sure he does, they did mention support groups i.e. St. Peter's hospice but he won't hear of it, don't know how best to support him,

I don't want to sound selfish but all the families lives seem to be on hold, no one knows what is the best way forward, I've lost so ymany close family members to cancer in different forms so you'd think I'd know how to deal with this but I'm at a loss, any advice would be greatly appreciated. Many thanks for reading this.

User
Posted 13 Jul 2017 at 23:13

Hi Twilliams
My husband's PSA at diagnosis in March was over a thousand, not as high as your father in law, and extensive bone mets and lymph nodes, His PSA came down quite quickly with Hormone Treatment, latest 12. He has started Chemo because he is younger (late 60:s) and fit, He was in a lot of pain from his bones but that decreased once hormone treatment started. One question I would suggest asking is what is his Gleason Score? This should indicate how quickly his cancer is growing.

When I go to appointments with my husband I try to write down everything that is said. Would his wife be able to do this? It's very difficult to remember afterwards what exactly was said.

It might be helpful to make a second copy of your questions so one can be handed over at the appointment and his wife can write the answers down on the other one.

I do wish you all the best as I know how difficult this time can be.

User
Posted 14 Jul 2017 at 21:22

Hi Tracy,
Yes, obtaining the Gleason score as part of the diagnosis would help establish his situation, assuming a biopsy has been done rather than just PSA and scans. However, the Gleason score does not indicate how quickly the cancer is growing but rather is a measure of by how much the cancer cells have have deviated from normal cells.

There are many types of PCa and it can be established following biopsy which type of PCa. Some types of PCa respond better to various treatments and you could ask if the consultant's have any idea how successful his present treatment may be and if not for long, what else might be tried.

Barry
User
Posted 16 Jul 2017 at 21:23

Hi my husband was diagnosed last October with a terrifying psa of 6,700 and widespread mets.

He has been on zolodex injections since then and also had 6 cycles of chemo (but I have also spoken to other people with a similar diagnosis who have not had chemo - either because they didn't want to or because other health issues made it unwise.)

Things are under control at the moment but we know that will change at some stage - although thankfully there are other treatments available.

I found the initial time when he was first diagnosed completely terrifying and I still worry all the time now but things are clearer.

I hope you get more info soon. It definitely helps to write down questions x

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User
Posted 13 Jul 2017 at 21:29

Hi Tracy and welcome to this forum though sorry for the reason that brings you here.

From what you say your FIL is in denial of his situation or chooses to ignore it and he is not alone in this respect. This can make it very difficult for his family and I wonder if one of them could accompany him on his next appointment. This way both he and the family can become aware of his situation, prospects and what further treatment can be given according to his response.

It is unfortunate that he will not become involved with the hospice support group as this could help him, particularly as his situation becomes more advanced and pain management becomes an issue. I assume that with a PSA of 3900 on diagnosis the radiotherapy he had was to ameliorate the effect of some cancer hot spots helped by the HT.

You don't say how PSA has changed since diagnosis and how long it is since he was diagnosed. If you could show in the Profile Bio more basic information regarding when he was diagnosed, what that diagnosis was in more detail and how it has changed to now, it would be helpful.

Barry
User
Posted 13 Jul 2017 at 22:35
Thank you for your response, it's only been 3 weeks since diagnosis so he hasn't had a follow up blood test yet I assume this will be done when he has his second HT injection. It's all very new and we are all trying to get our heads around it, we are going to write down a list of questions to ask at his follow up appointment as I know he only wants his wife to go in with him, if there are any questions you think we should be asking id be grateful for your help, thank you again
User
Posted 13 Jul 2017 at 23:13

Hi Twilliams
My husband's PSA at diagnosis in March was over a thousand, not as high as your father in law, and extensive bone mets and lymph nodes, His PSA came down quite quickly with Hormone Treatment, latest 12. He has started Chemo because he is younger (late 60:s) and fit, He was in a lot of pain from his bones but that decreased once hormone treatment started. One question I would suggest asking is what is his Gleason Score? This should indicate how quickly his cancer is growing.

When I go to appointments with my husband I try to write down everything that is said. Would his wife be able to do this? It's very difficult to remember afterwards what exactly was said.

It might be helpful to make a second copy of your questions so one can be handed over at the appointment and his wife can write the answers down on the other one.

I do wish you all the best as I know how difficult this time can be.

User
Posted 14 Jul 2017 at 21:22

Hi Tracy,
Yes, obtaining the Gleason score as part of the diagnosis would help establish his situation, assuming a biopsy has been done rather than just PSA and scans. However, the Gleason score does not indicate how quickly the cancer is growing but rather is a measure of by how much the cancer cells have have deviated from normal cells.

There are many types of PCa and it can be established following biopsy which type of PCa. Some types of PCa respond better to various treatments and you could ask if the consultant's have any idea how successful his present treatment may be and if not for long, what else might be tried.

Barry
User
Posted 16 Jul 2017 at 21:23

Hi my husband was diagnosed last October with a terrifying psa of 6,700 and widespread mets.

He has been on zolodex injections since then and also had 6 cycles of chemo (but I have also spoken to other people with a similar diagnosis who have not had chemo - either because they didn't want to or because other health issues made it unwise.)

Things are under control at the moment but we know that will change at some stage - although thankfully there are other treatments available.

I found the initial time when he was first diagnosed completely terrifying and I still worry all the time now but things are clearer.

I hope you get more info soon. It definitely helps to write down questions x

User
Posted 20 Jul 2017 at 18:05
Thank you for your replies it helps to know you are not alone. My husband has taken day off work as wants to go with his father for his next appointment and can then ask some questions and also take some notes. They won't do a biopsy as his psa too high so no Gleason score. They have told him chemo is not an option. He has now come off the steroids and is very tired and emotional, I think we just have to take each day and await the results of his reaction to his treatment so far,
 
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