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recent visit with urologist

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User
Posted 10 Sep 2015 at 07:06

Hi to everyone,

We saw our urologist nurse yesterday and was hoping that my OH PSA would have gone down as it consistently has since he was diagnosed a year ago but unfortunately during the past four months it had risen from 100 to 140.   He has been prescribed Bicalutamide 50mg daily to be used alongside the three monthly Prostap injections which he has been having for a year.

We were disappointed and saw it as a setback although we were told not to place too much importance to the numbers as it is mainly a matter of how he feels generally and apart from the usual tiredness and a couple of 'bleeds' in his urine he doesn't seem to have other problems just now.   The nurse described the reason for the rise as probably due to some stray cancer cells and hopes the new meds will put this back on track.   

He will now be worrying that things aren't going as well and I wondered if anyone else on the forum has had similar problems which they could share with us.

Thank you.

Polly

User
Posted 10 Sep 2015 at 16:46

Hello Polly.

Sorry the other half is having further problems.

I'm sure somebody who has been where you are now will be along to reassure you so keep checking back

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2015 at 07:27

The fact that his PSA is up in the hundreds suggests that the hormone treatment is not starving the cancer so they have added bicalutamide as a two pronged approach. His existing hormone should stop him producing testosterone and bicalutamide tricks the cancer into not seeing whatever testosterone is still hanging around. Sometimes the cancer learns to live without testosterone and then you have to move on to new treatments.

Did the nurse say anything about OH's testosterone or T score? They should be monitoring that in his blood tests to check that it is around or below 0.69

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

User
Posted 11 Sep 2015 at 10:23

Hi Poly,

I think I must be the community's resident 'Mrs Angry' so here I go again ! I was really concerned that you seem to have had so little support in terms of treatment. I dont know your OH's circumstances but you can see by reading these forums, that even for advanced disease, there are often many options available, all of which, surely need to be discussed with you. Might be useful reading the NICE guidelines about treatnent for advanced PCa. Have you read the PCa UK Toolkit and the leaflets on advanced disease which also lay out lots of options. You shouldnt have to be worrying it is you who has to do all the running around though as someone who did just that sometimes it has to be done to get someone to listen to you. I kept track of all Neil's test results, not everyone wants to do that but it meant I felt I had some control over the situation and could ask for treatments or demand them !! Does your OH have other pre-existing health conditions which rule out PCa treatments other than HT ? We often say on the forum how standards of treatment do vary greatly. I very much identify with your experiences though and my choice was to be as assertive as possible with all the medics as much as I resented this !

Fiona.

User
Posted 12 Sep 2015 at 09:10

have you asked re swapping to zoladex instead of prostap, I had to change due to issues with prostap

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Sep 2015 at 09:13

I have also been to see my GP and he is referring me to another hospital  for a 2nd opinion due to my onco messing me about,

have a chat with your GP to see if they are willing to do this

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Sep 2015 at 13:33

Cavalier, the N2 is not a staging, it means that the cancer is in his lymph nodes. At T4 and G10, I don't think it is dreadful that your OH sees only the nurse specialist while-ever the hormone treatment is controlling the situation. Once the hormones stop working, as they seem to be in your case, the medics need to work out why. There are 2 possibilities
A) the hormone treatment has not castrated him (he is still making some testosterone) and so the cancer is still being fed, or
B) he is making no testosterone but the cancer has learned to feed off something else (also referred to as castrate-resistant or hormone-refractory)

Adding the bicalutamide is the nurse specialist's obvious next step. If he is still making testosterone the bicalutamide will disguise this so the cancer cells can't find it and starve. For some men, adding the extra tablet can make a huge difference and they stay well for a long time. If adding bicalutamide stops working and the cancer remains active, withdrawing the bicalutamide can also have a very strong effect in knocking the cancer down. It is normally only when the hormone treatment stops working that men like your husband need to go back under the onco's care and try some of the other newer drugs.

It is good that you are now getting a second opinion but the advice may be to carry on as you are for as long as possible. Radiotherapy will not be much use in your case as it is generally used only to reduce bone pain in T4 cases and fortunately your OH doesn't have bone mets.

Edited by member 12 Sep 2015 at 13:34  | Reason: Not specified

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

User
Posted 12 Sep 2015 at 13:38

Originally Posted by: Online Community Member

We were relieved the bone scan revealed no cancer found and we thought he would be offered treatment to help stop the cancer spreading further.

Polly, that's exactly what the hormones are for - they are the treatment!

 

Edited by member 12 Sep 2015 at 16:53  | Reason: Not specified

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

User
Posted 14 Sep 2015 at 22:19

You are reading the numbers correctly.

Men that have had their prostate removed with surgery should see their PSA go down to less than 0.1 as the gland that makes almost all the PSA has gone.

Men that have had radical radiotherapy should see their PSA remain at less than 2 unless they are on hormones as well in which case it often goes right down to 0.1 or below

Men diagnosed at a very advanced stage can be up in the thousands like Trevor Boothe - and sometimes the PSA rises and rises as they get towards the end stage. Bizarrely, there are also times when the PSA drops by itself with no treatment at the end stage.

Some men on hormone treatment will get as low as a PSA of 1 or 2 or 0.something if the hormones are working well and the man is being effectively castrated. It is a bit worrying that your OH's PSA is high and rising which is why they have added the extra tablets.

In your shoes, I think i would be giving the nurse a call to ask whether his testosterone is being measured and if so, what the last score was. Then it will be easier for you to understand why his PSA is up.

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

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User
Posted 10 Sep 2015 at 16:46

Hello Polly.

Sorry the other half is having further problems.

I'm sure somebody who has been where you are now will be along to reassure you so keep checking back

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2015 at 07:13
Hello Sandra and thank you for your post. It is still relatively new to us and each visit with the urology nurse leaves us with more questions than answers.

polly.

User
Posted 11 Sep 2015 at 07:27

The fact that his PSA is up in the hundreds suggests that the hormone treatment is not starving the cancer so they have added bicalutamide as a two pronged approach. His existing hormone should stop him producing testosterone and bicalutamide tricks the cancer into not seeing whatever testosterone is still hanging around. Sometimes the cancer learns to live without testosterone and then you have to move on to new treatments.

Did the nurse say anything about OH's testosterone or T score? They should be monitoring that in his blood tests to check that it is around or below 0.69

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

User
Posted 11 Sep 2015 at 07:51
His psa level has not reduced dramatically since starting the prostat injections and we were not told the blood test results. Actually we are never given any information other than if he feels ok there is no problem. We see only the urologist nurse and do not have access to an oncologist doctor. I am getting very concerned at the lack of help we are getting. Our visit lasts just five minutes every four months and I constantly worry that I should be doing more for him.

We saw an oncologist after the biopsy was done who said the cancer was advanced and no treatment was available other than the hormone injections. He said he thought perhaps my husband would prefer not to know how long he has left. It was absolutely brutal and horrific for us and we seem to be limping along blindly. I dont know where to go from here and wonder if this happens to others with advanced cancer.

thank you sandra for your enlightening post.

polly

User
Posted 11 Sep 2015 at 08:01
Apologies Lyn for calling you Sandra but thank you so much for your post. I will ask our GP if he can access the blood test results.
User
Posted 11 Sep 2015 at 10:23

Hi Poly,

I think I must be the community's resident 'Mrs Angry' so here I go again ! I was really concerned that you seem to have had so little support in terms of treatment. I dont know your OH's circumstances but you can see by reading these forums, that even for advanced disease, there are often many options available, all of which, surely need to be discussed with you. Might be useful reading the NICE guidelines about treatnent for advanced PCa. Have you read the PCa UK Toolkit and the leaflets on advanced disease which also lay out lots of options. You shouldnt have to be worrying it is you who has to do all the running around though as someone who did just that sometimes it has to be done to get someone to listen to you. I kept track of all Neil's test results, not everyone wants to do that but it meant I felt I had some control over the situation and could ask for treatments or demand them !! Does your OH have other pre-existing health conditions which rule out PCa treatments other than HT ? We often say on the forum how standards of treatment do vary greatly. I very much identify with your experiences though and my choice was to be as assertive as possible with all the medics as much as I resented this !

Fiona.

User
Posted 12 Sep 2015 at 08:19

Hello Fiona and thank you for your very informative reply.

Yes I do keep records of all results, hospital/GP visits, test results where we are given them (though it's like pulling teeth getting them) and every conversation we have with clinicians.  We visited an oncologist doctor only once where we were told no other treatment was available except hormone injections.  We asked him about radiotherapy as the urologist nurse had told us that this would probably be offered by the doctor but he said not.  No further appointments have been made with him for us. We see only the urologist nurse every 4 months.  My OH doesn't have any other medical problems, he was very fit and healthy at 74yrs prior to the symptoms which resulted in the prostate cancer diagnosis last year.

I have read the PC tool kit and understand a little of the options.  I will also read up on the NICE guidelines, thank you. 

I have updated his profile as realise it helps people who respond to my posts.  (This is such a learning curve for us)   My OH is still in denial which makes it even more difficult.

His gleason score at diagnosis was 10.  T stage = T4, N stage N2, M stage M0.

We were relieved the bone scan revealed no cancer found and we thought  he would be offered treatment to help stop the cancer spreading further.

I would greatly appreciate any advice from people in similar circumstances to us.

Thank you so much

Polly

 

User
Posted 12 Sep 2015 at 09:10

have you asked re swapping to zoladex instead of prostap, I had to change due to issues with prostap

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Sep 2015 at 09:13

I have also been to see my GP and he is referring me to another hospital  for a 2nd opinion due to my onco messing me about,

have a chat with your GP to see if they are willing to do this

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Sep 2015 at 13:33

Cavalier, the N2 is not a staging, it means that the cancer is in his lymph nodes. At T4 and G10, I don't think it is dreadful that your OH sees only the nurse specialist while-ever the hormone treatment is controlling the situation. Once the hormones stop working, as they seem to be in your case, the medics need to work out why. There are 2 possibilities
A) the hormone treatment has not castrated him (he is still making some testosterone) and so the cancer is still being fed, or
B) he is making no testosterone but the cancer has learned to feed off something else (also referred to as castrate-resistant or hormone-refractory)

Adding the bicalutamide is the nurse specialist's obvious next step. If he is still making testosterone the bicalutamide will disguise this so the cancer cells can't find it and starve. For some men, adding the extra tablet can make a huge difference and they stay well for a long time. If adding bicalutamide stops working and the cancer remains active, withdrawing the bicalutamide can also have a very strong effect in knocking the cancer down. It is normally only when the hormone treatment stops working that men like your husband need to go back under the onco's care and try some of the other newer drugs.

It is good that you are now getting a second opinion but the advice may be to carry on as you are for as long as possible. Radiotherapy will not be much use in your case as it is generally used only to reduce bone pain in T4 cases and fortunately your OH doesn't have bone mets.

Edited by member 12 Sep 2015 at 13:34  | Reason: Not specified

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

User
Posted 12 Sep 2015 at 13:38

Originally Posted by: Online Community Member

We were relieved the bone scan revealed no cancer found and we thought he would be offered treatment to help stop the cancer spreading further.

Polly, that's exactly what the hormones are for - they are the treatment!

 

Edited by member 12 Sep 2015 at 16:53  | Reason: Not specified

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

User
Posted 14 Sep 2015 at 21:30

Hi Lyn

Thank you very much for your help.   It has given me a boost to have some reassurance that we seem to be going on the right track regarding the treatment.   We were quite deflated when the PSA level had increased and I think I got into a panic.   My OH has started on the bicalutamide

tablets and though he isn't feeling great - ( probably a bit worried himself) we are hoping it has been a blip.   Each time I post and read other people's posts, it seems that little bit at a time I am learning more.  Sorry, I did understand the N was not a stage, I was writing it down parrot fashion and get confused with the stuff.

I think we need to carry on with the same and see what happens at our next visit with the urologist nurse - hoping it improves. 

Just to add a point, I really don't understand the large variations in the psa levels as some seem to be in the late hundreds and other people mention 0.something - am I reading them incorrectly or do they actually reduce to below 1 when people are being cured of the cancer.

 

Thankyou too Bladerunner, next time my OH visits his GP I will go along too.

 

Polly xx

User
Posted 14 Sep 2015 at 22:19

You are reading the numbers correctly.

Men that have had their prostate removed with surgery should see their PSA go down to less than 0.1 as the gland that makes almost all the PSA has gone.

Men that have had radical radiotherapy should see their PSA remain at less than 2 unless they are on hormones as well in which case it often goes right down to 0.1 or below

Men diagnosed at a very advanced stage can be up in the thousands like Trevor Boothe - and sometimes the PSA rises and rises as they get towards the end stage. Bizarrely, there are also times when the PSA drops by itself with no treatment at the end stage.

Some men on hormone treatment will get as low as a PSA of 1 or 2 or 0.something if the hormones are working well and the man is being effectively castrated. It is a bit worrying that your OH's PSA is high and rising which is why they have added the extra tablets.

In your shoes, I think i would be giving the nurse a call to ask whether his testosterone is being measured and if so, what the last score was. Then it will be easier for you to understand why his PSA is up.

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

User
Posted 15 Sep 2015 at 13:45

Hi Lyn

We are waiting for an appointment being made for my OH to see the urologist in about 5 weeks, to check his situation with the new meds and I have made a note to check if his testosterone level is being measured.

Thank you so much for your help and advice.

kind regards

Polly

 
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