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Father got PSA of 80

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User

Posted 28 Mar 2018 at 15:53

My father's symptoms for prostate were not going down. He had a normal PSA which was done yearly. Last PSA was in 2016. Which was normal. This year when symptoms got worse I told my father to request a PSA. His PSA was up at 80 at end of december of 2017.

It was a terrible thing to hear for me so I can only just guess how hard would it be for my mum and dad. I had to stop my job in the middle and go to my home town to help with the biopsy and the other things. It was a scary time when you don't know what is happening. It is even more difficult when you have a different health care system as compared to UK NHS.

It was a tough time trying to find out what to do. We only had the option for one cancer hospital which is the major one operating in our country. Rest are just common private hospitals. Charges usually you have to pay as well. Got his biopsy done. The result came to a Gleason score of 8. The cancer is a locally invasive one and has invaded the rectum as per the MRI.

Got my father's treatment started with an oncologist, while I wait documentation to be completed for the largest cancer hospital in the country. As per the standardized treatment. He is started on Androgen deprivation therapy (ADT) along-with the regular medications. He is currently taking a zoladex injection monthly and regular tablets of casodex 50mg.

The good thing is that after 2 months of ADT there is slight reduction in the symptoms. Especially the rectal symptoms. It is a big thing to hear this. As someone related to who has prostate cancer, every night you are stressed that whether they might not have any urinary retention etc , you might have to just wake up and take them to a hospital .

I guess the journey is not easy, but we need to be there for those who have it and help them fight it out. There is nothing else one can do. I think this is a good forum.

Edited by member 07 Aug 2018 at 20:35 | Reason: Not specified

User

Posted 28 Mar 2018 at 19:47

It seems that your dad is on more or less the same treatment he would have been offered if he was living in England, except perhaps he would also have been offered early chemo. This is quite a new approach, and trials suggest that the hormone treatment is more effective if chemo is also given. That might not be possible in Pakistan, or your dad might not be robust enough for what can be a very tough treatment regime. You don't say how old he is?

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

User

Posted 07 Aug 2018 at 14:38

In England, the bicalutimide (Casodex) would only have been given for the first 4 weeks and then it would stop but it seems that your dad has continued to take both? It may be that the cancer is feeding on the bicalutimide so stopping it should lead to the drop you hope for.

Degarelix is not the 1st choice for many oncologists in the UK; Prostap and Zoladex are the most commonly prescribed. Immunotherapy is only available privately or as part of a trial and HIFU has had some good results as a salvage treatment but not so good as a first line treatment so is also hard to get in the UK unless a man a) can get on a trial b) can afford to travel overseas and/or c) has plenty of money.

Edited by member 07 Aug 2018 at 14:45 | Reason: Not specified

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

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User

Posted 28 Mar 2018 at 19:10

Hello Irfan and welcome to the site.

Discovering a loved one has cancer can be very stressful as you have discovered.

I cannot comment on your dad's treatment as ours was different but I'm sure you'll get help and advice from somebody who knows what they are talking about

Best Wishes

Sandra

Edited by member 28 Mar 2018 at 21:36 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 28 Mar 2018 at 19:47

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

User

Posted 07 Aug 2018 at 14:17

I am sorry for being disconnected from the forum and somehow I didn't receive any notifications of any replies. It is now August 2018 and my father was receiving an injection of zoladex every 28 days so a total of 8 injections have been given to him .

On the 6th month now when the PSA was done, the PSA has increased to 10.

Initially on the 3rd month the PSA was about 0.28.

In between I decided to check myself the PSA which came to 4. I also noticed that on the 3rd month when testosterone readings were taken they were normal as in non castration. Which meant that maybe the combined therapy wasn't reducing the testosterone levels.

I redid them for him on the 5th month and they were then zero i.e. castrate levels. Don't know why in between the testosterone readings were normal . The oncologist also didnt answer this query for me.

What happened in between was that initially there was a reduction in almost all the symptoms but now after 3rd month the urinary frequency has increased a bit. This was noticed by my father who expressed it. He also seems to have muscles aches and pains on an off. I guess it might be related to the injections.

The next appointment with the oncologist is to be on the 29th of August, but as I saw the PSA of 10 I want to go to the Oncologist and discuss what is next in line for the treatment for my dad.

As far as I have read about Prostate cancer treatment, if combination treatment with zoladex and once daily of casodex 50mg tablets is given, then if there is a rise in PSA the doctors tend to stop the once daily tablets and then a drop in PSA would be noticed. I don't know if that would be the case here but the oncologist would be the judge of what treatment is next in line.

Similarly the Oncologist had expressed that he might go for Radiotherapy if the PSA drops to below 1. Which hasn't happened. So I dont know if radiotherapy might be considered or not.

Docetaxel is available but it was not started. My father is 70 years of age.

LynEyre thank you so much for the reply. I guess you are right about that. Though when I am reading there are multitude of various new treatments like immunotherapy and HIFU (High intensity focused ultrasound) which are currently being done in some hospitals in the UK.

Similarly Firmagon is being offered as the first line instead of Zoladex injections in UK. It is not available here. Mainly the mainstay treatments here are zoladex and casodex.

User

Posted 07 Aug 2018 at 14:38

Edited by member 07 Aug 2018 at 14:45 | Reason: Not specified

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

User

Posted 07 Aug 2018 at 15:06

I agree with you on that. I was expecting it to be given for only a few weeks, but instead he was put on combined therapy till now. I think stopping bicalutamide (casodex) might help get the drop we are expecting. But ofcourse this is the decision of the oncologist, I am waiting to discuss this with the oncologist and see what he has to say.

There is a question , is it necessary for your PSA to be down to below 1 before radiotherapy can be started? Or radiotherapy can be started on any PSA level?

User

Posted 07 Aug 2018 at 16:22

It isn’t the PSA in its own right that is important; the PSA is an indicator of how active the cancer is. If the PSA goes low and stays there, this suggests that the cancer has been weakened and may be susceptible to RT. If the PSA stays up, that suggests that the HT is not working as well as it might have been hoped and so RT may be pointless.

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

User

Posted 07 Aug 2018 at 20:34

To be honest I am at the stage where I get anxious by this rise in PSA. Even now I am thinking whether I should run off and meet the doctor or wait for the appointment at the end of the month. I haven't met anyone with this problem so at this moment this forum is somewhere where I can have an idea from people who themselves or their family members are going through this. Some have a better understanding of what is going on and some are more stressed reading tons of things online.

The anxiousness of what awaits and what treatments would be available play a havoc on my mind. I think it is hard for everyone who has friends or relatives with this disease.

Edited by member 07 Aug 2018 at 20:37 | Reason: wanted to add some more ..

User

Posted 09 Sep 2018 at 14:00

Recently last month the psa has risen to 10.

The oncologist on visit September start has seen the rise in PSA and increased the dose of Bicalutamide from 50mg once daily to 100 mg divided in two doses. He has said to use this for one month and then he will observe next month. Also he was given ciprofloxacin 500mg twice a day for 5 days.

There has been hesitation during passing of urine and testicular pain on and off has been there since the last two months. Though because of increase in bicalutamide he is feeling exhausted.

The oncologist also wrote some tests like Urine routine examination and renal function tests.

Anyone have experience with raise in dose of bicalutamide while already on bicalutamide and goserelin injections?

User

Posted 10 Feb 2019 at 09:42

The update as of now is that the PSA started doubling very 3 months and as of recent it was at 23.

The Oncologist increased the dose of Bicalutamide to three times a day 50mg. Rather than stopping it.

Prednisolone was added in a dosage of three times daily (15mg total per day)

For pain they added Gabapentin at a dose of 100mg two times a day.

He is already taking Paracetamol + Orphenadrine citrate

and Paracetamol + Tramadol for pain.

We had to get him admitted as there was acute urinary retention, which presented as barely being able to empty properly. Once catheterization was done then 2 litres of urine came out within the first 10 minutes.

There was a hospital admission recently as pain was not resolving, they gave him IV ketolorac and that helped the pain. Also antibiotics were started as createnine was raised and the urologists suspected CAUTI (catheter associated urinary tract infection).

On the recent CT scan without contrast done this week, it was noted that the boundary from urinary bladder is no longer clearly visible. Secondly the prostate has increased to about 120ml capacity which was same as was initially.

The pain which he used to have initially , as in rectal pain has also started.

Now we have a bone scan coming up tomorrow.

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