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PSA help

User
Posted 28 Dec 2019 at 10:32

Hi all, I wondered if anyone has had a similar experience so that we know roughly what will happen next. My Dad has been on hormone injections since last October to control his metastatic prostate cancer (bones). In September his PSA started to rise again. And has gone from 0.2 to 21.0 between September and now, doubling at least each time we had the results. They have put him on abiretarone now. Has anyone been or had family in similar situations? Is the PSA rising that quickly a bad sign? They did a scan and told us it’s more widespread through his bones and lymph nodes. Looking for any similar experiences, as unsure to whether he has many more options for treatment and what this means for his prognosis. Dad doesn’t like to ask too many questions but we would like to know more where we stand. Thank you in advance. 

User
Posted 28 Dec 2019 at 13:17
It would help the good people here to offer you advice if you were to fill in more details of your father’s condition, (age, when diagnosed, Gleason score, treatment since, PSA levels, etc) in your profile ‘LT2001’.

Click on mine ‘Bollinge’ or most others here to give you an idea of what to write.

Best of luck.

Cheers, John.

User
Posted 28 Dec 2019 at 13:56
I think you are saying that he started on hormone treatment in Oct 2018 and the hormones only controlled your dad's cancer for 11 months, which is quite short (for some men, it works for many years) so it seems that your dad has quite an aggressive type.

The way that PSA rise is measured is by doubling time and your dad's doubling time is about 2 weeks which is concerning because it indicates that the cancer is very active, but you know that because the scans have identified new growth .... new growth equals rising PSA.

It is good that they have identified a problem and added the abiraterone, which usually makes the hormones work better. For some men, abi works for a number of years although sometimes it only works or a few months. When it stops working, they will look at alternatives such as chemotherapy or something for the bone mets (Radium 223). If he has a lot of pain from the bone mets, the onco may give him a little bit of radiotherapy; radiotherapy can also be used to stabilise bones that are becoming weak because of the tumours. If dad has a lot of pain, he should be referred to either a pain clinic at the hospital or to specialist nurses such as the local Macmillan or hospice team. Depending on his age, it may also be a good idea for him to speak to the Macmillan / hospice adviser about things like benefits that he can claim.

Does dad get copies of the consultant letters to his GP? Does he have a letter with his diagnosis written on it? Did he have a biopsy in 2018? If so, have a look to see whether he was definitely diagnosed with adenocarcinoma - there are at least 27 kinds of prostate cancer and some of the rarer ones do not respond to hormone treatment so it would be useful for you to know whether that is the case.

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

User
Posted 28 Dec 2019 at 13:56

Hi,

The hospital will have written to your fathers GP after he was diagnosed with all the detailed medical info.This letter would have been copied to your father.If you can find it you can use it to fill in his profile otherwise we can only offer generalised opinions.

Kind Regards

Norm

User
Posted 28 Dec 2019 at 19:04
Hi LT2001

I agree with Norman above. The procedure, generally, is that a patient going for a hospital appointment should be asked at the Reception when they attend the appointment whether or not they would like to have a copy of the letter which will be sent to their GP after the consultation. If this does not happen you can ask at your Surgery for a copy of the hospital letter. Don't take no as an answer from the Receptionist. If necessary, ask for your request to be passed on to your GP. If your GP is not around ask for it to be passed on to another GP.

I Hope this is useful for you..

Art

User
Posted 28 Dec 2019 at 19:33
Worth making the point that it is the dad who will have to request copies, etc - LT2001 will not be able to get copies without his/her dad's consent. And since the dad doesn't like asking questions, that might be a bit of a problem.

Norm, not all hospitals copy all consultant letters to the patient. In some areas, it would have to be requested by the patient.

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

User
Posted 28 Dec 2019 at 21:19
Chemo doesn't cure prostate cancer but it can make the HT work better for longer so is sometimes given quite quickly after diagnosis, if the man is otherwise fit and healthy. Alternatively, it can be held back until near the end as a way of reducing pain and improving quality of life a bit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 28 Dec 2019 at 13:17
It would help the good people here to offer you advice if you were to fill in more details of your father’s condition, (age, when diagnosed, Gleason score, treatment since, PSA levels, etc) in your profile ‘LT2001’.

Click on mine ‘Bollinge’ or most others here to give you an idea of what to write.

Best of luck.

Cheers, John.

User
Posted 28 Dec 2019 at 13:56
I think you are saying that he started on hormone treatment in Oct 2018 and the hormones only controlled your dad's cancer for 11 months, which is quite short (for some men, it works for many years) so it seems that your dad has quite an aggressive type.

The way that PSA rise is measured is by doubling time and your dad's doubling time is about 2 weeks which is concerning because it indicates that the cancer is very active, but you know that because the scans have identified new growth .... new growth equals rising PSA.

It is good that they have identified a problem and added the abiraterone, which usually makes the hormones work better. For some men, abi works for a number of years although sometimes it only works or a few months. When it stops working, they will look at alternatives such as chemotherapy or something for the bone mets (Radium 223). If he has a lot of pain from the bone mets, the onco may give him a little bit of radiotherapy; radiotherapy can also be used to stabilise bones that are becoming weak because of the tumours. If dad has a lot of pain, he should be referred to either a pain clinic at the hospital or to specialist nurses such as the local Macmillan or hospice team. Depending on his age, it may also be a good idea for him to speak to the Macmillan / hospice adviser about things like benefits that he can claim.

Does dad get copies of the consultant letters to his GP? Does he have a letter with his diagnosis written on it? Did he have a biopsy in 2018? If so, have a look to see whether he was definitely diagnosed with adenocarcinoma - there are at least 27 kinds of prostate cancer and some of the rarer ones do not respond to hormone treatment so it would be useful for you to know whether that is the case.

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

User
Posted 28 Dec 2019 at 13:56

Hi,

The hospital will have written to your fathers GP after he was diagnosed with all the detailed medical info.This letter would have been copied to your father.If you can find it you can use it to fill in his profile otherwise we can only offer generalised opinions.

Kind Regards

Norm

User
Posted 28 Dec 2019 at 19:04
Hi LT2001

I agree with Norman above. The procedure, generally, is that a patient going for a hospital appointment should be asked at the Reception when they attend the appointment whether or not they would like to have a copy of the letter which will be sent to their GP after the consultation. If this does not happen you can ask at your Surgery for a copy of the hospital letter. Don't take no as an answer from the Receptionist. If necessary, ask for your request to be passed on to your GP. If your GP is not around ask for it to be passed on to another GP.

I Hope this is useful for you..

Art

User
Posted 28 Dec 2019 at 19:30

Thank you. Dad was 73 and was diagnosed in October 2018 with prostate cancer that had spread to his bones. He had had no sign until back pain and his legs had given way. When we went to A&E they quickly diagnosed him. He had mets in his spine, ribs pelvis and legs then. They told us straight away that there was no need to biopsy and that it was terminal and he started palliative care immediately. His pain is dealt with by our local hospice. And he has been having the injections 3 monthly. As mentioned in September 2019 his PSA started to rise. And on 20th December they started him on abiretarone after trying bicalutamide for a month or two and it not doing anything. 
I am looking for any guidance really on what we can expect. My Dad has done amazing so far, better than they expected I think. But he won’t ask many questions. Thank you for any help. 

User
Posted 28 Dec 2019 at 19:33
Worth making the point that it is the dad who will have to request copies, etc - LT2001 will not be able to get copies without his/her dad's consent. And since the dad doesn't like asking questions, that might be a bit of a problem.

Norm, not all hospitals copy all consultant letters to the patient. In some areas, it would have to be requested by the patient.

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

User
Posted 28 Dec 2019 at 19:38
Thank you so much for all of your responses.
User
Posted 28 Dec 2019 at 19:39
Okay. The abiraterone should bring the OSA back down for a while, maybe years but sometimes only for months. Have they mentioned chemo at all? If the abi fails quickly, they may suggest chemo every 3 weeks for a few months (unless he has other medical conditions that would make it difficult). You would know whether the abi is failing because the PSA would start rising again. After abi, there may be trial drugs he can try or he may be advised to just stay on the hormones and concentrate on quality of life / pain control rather than treating the cancer.

Have you all been advised about the signs of spinal cord compression? If dad has spinal mets and starts to show any symptoms of SCC you must call an ambulance immediately.

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

User
Posted 28 Dec 2019 at 19:56

Thank you, this helps. It seems there are lots more options for him. They have never mentioned chemo for him.

User
Posted 28 Dec 2019 at 21:19
Chemo doesn't cure prostate cancer but it can make the HT work better for longer so is sometimes given quite quickly after diagnosis, if the man is otherwise fit and healthy. Alternatively, it can be held back until near the end as a way of reducing pain and improving quality of life a bit.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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