I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

PSA Testing during Hormone Therapy

Email this conversation Print this conversation
User
Posted 12 Aug 2020 at 13:18

Hi,

I had biopsy and MRI 1st July 2020. I was started same day on bicalutamide 150mg for 4 weeks.

Since staged at T3b N0 M0.

Received first Prostap injection 22nd July and finished last 7 bicalutamide.

Will be returning for 3 month Prostap on 19th August which I believe will be a 3 month injection.

I'm a little surprised that I've not had PSA test done since my GP triggered all this back in June. Would that not be expected to check that injections were actually doing their job? or is that just a given for someone that has never previously had prostap injections?

Thanks,

 

 

User
Posted 12 Aug 2020 at 13:52
Hi Dave.

I only have PSA checks prior to my 4 monthly Onco appointment. Also worth adding "testosterone" to your blood request so you can check if this is falling as well.

User
Posted 12 Aug 2020 at 13:53

The bicalutamide and Prostap will pull your PSA down.

They might measure it after you've been on Prostap for 3 or more months, but they don't always. You could ask (I did).

User
Posted 12 Aug 2020 at 18:50
Having started on HT in July and with RT planned for December, I would expect your PSA tests to be three monthly so next one due in October.

You may need to clarify with the oncologist whether the PSA test is to be arranged via the hospital or done by the GP - this determines a) whether you get an appointment through the post or whether you have to arrange your own test and b) who gets your results.

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

User
Posted 12 Aug 2020 at 21:34

I don't know how expensive a psa test is but they don't seem to like giving them out. 

Being trained in science I know that one should always repeat measurements to check for accuracy. My first psa result was 29. I hate that medics hardly ever report the units. Gp referred me to oncology, but I asked for a retest just to check, the reply was "it won't change your treatment plan so, no". I insisted and she did the test as it happened it was 23. None of the gp results got to the onco so he did another test and it was 21.7 .

Anyway next test was at three months and then every six months. I think they just assume HT is working, and if it isn't they haven't got a plan B so there is not much point in doing much testing. 

Edited by member 12 Aug 2020 at 21:35  | Reason: Not specified

Dave

User
Posted 17 Aug 2020 at 11:22
I'm not sure but I do not think you get as detailed an assessment of the variant after a biopsy as you do after an RP pathology. Happy to be corrected.

I would (based on bitter experience) get the hell off of Dr Google.

This forum would be a good place to get elaboration on any questions or for stuff that arises between consultations but your consultant should be the first port of call.

If you have questions going in to a consultation, write them down and write down the answers.

If you are worried you might miss something, bring your partner to act as scribe or ask to record the meeting.

Don't forget you can ring your onco nurse for advice and chats as well (also the PCUK hotline).

Keep on keeping on.

P

User
Posted 17 Aug 2020 at 12:36
Hi Dave,

yes, part of the purpose of the biopsy is to identify which type of prostate cancer it is. You would expect to have been told if you had one of the really rare & difficult ones although we have seen on here that sometimes the urologists have just sort of mentioned it in passing and glossed over the implications.

The best way to find out is to dig out your diagnosis letter - it should say somewhere "adenocarcinoma"

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

Show Most Thanked Posts
User
Posted 12 Aug 2020 at 13:52
Hi Dave.

I only have PSA checks prior to my 4 monthly Onco appointment. Also worth adding "testosterone" to your blood request so you can check if this is falling as well.

User
Posted 12 Aug 2020 at 13:53

The bicalutamide and Prostap will pull your PSA down.

They might measure it after you've been on Prostap for 3 or more months, but they don't always. You could ask (I did).

User
Posted 12 Aug 2020 at 14:10

 

Thanks for that Andy, I did ask the consultant about if I could be sure the hormones were doing the job on preventing spreading, he told me that it would start shrinking things and I should see lessening of symptoms - better flow, etc. 

Some days I think I am seeing that, but other days not so much, so got a bit concerned that I was taking the unwanted effects of Hormone treatment without the main wanted one.

User
Posted 12 Aug 2020 at 15:19

Reminds me when I, slightly jokingly, complained to my oncologist that my balls had shrunk to about 1/3rd their original size, hoping for a bit of sympathy, to which he instantly responded,
    "Oh good, that means the hormone therapy is working."

Edited by member 12 Aug 2020 at 15:20  | Reason: Not specified

User
Posted 12 Aug 2020 at 18:50
Having started on HT in July and with RT planned for December, I would expect your PSA tests to be three monthly so next one due in October.

You may need to clarify with the oncologist whether the PSA test is to be arranged via the hospital or done by the GP - this determines a) whether you get an appointment through the post or whether you have to arrange your own test and b) who gets your results.

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

User
Posted 12 Aug 2020 at 21:34

I don't know how expensive a psa test is but they don't seem to like giving them out. 

Being trained in science I know that one should always repeat measurements to check for accuracy. My first psa result was 29. I hate that medics hardly ever report the units. Gp referred me to oncology, but I asked for a retest just to check, the reply was "it won't change your treatment plan so, no". I insisted and she did the test as it happened it was 23. None of the gp results got to the onco so he did another test and it was 21.7 .

Anyway next test was at three months and then every six months. I think they just assume HT is working, and if it isn't they haven't got a plan B so there is not much point in doing much testing. 

Edited by member 12 Aug 2020 at 21:35  | Reason: Not specified

Dave

User
Posted 17 Aug 2020 at 11:03

Hi Lyn,

I spotted a post from you in a different thread which included that "There are at least 27 types of prostate cancer" which seem to have different characteristics regarding treatment.

Would this be assessed during biopsy? Should I expect to have been told if there was anything weird and wonderful in my particular brand?

I'm noting that the news that comes from my consultants tends to accentuate good news and brush over bad stuff, to the extent that I come away from the meetings feeling positive then use Dr. Google to check out some of the information that got barely a mention at the meeting to quickly knock the positivity out of me.

Sorry if I should be aiming this stuff at my consultant, but you seem better informed than most people I'm getting to ask about things.

Thanks

User
Posted 17 Aug 2020 at 11:22
I'm not sure but I do not think you get as detailed an assessment of the variant after a biopsy as you do after an RP pathology. Happy to be corrected.

I would (based on bitter experience) get the hell off of Dr Google.

This forum would be a good place to get elaboration on any questions or for stuff that arises between consultations but your consultant should be the first port of call.

If you have questions going in to a consultation, write them down and write down the answers.

If you are worried you might miss something, bring your partner to act as scribe or ask to record the meeting.

Don't forget you can ring your onco nurse for advice and chats as well (also the PCUK hotline).

Keep on keeping on.

P

User
Posted 17 Aug 2020 at 12:28

Hi Pete,

Thanks very much for your time responding, very much appreciated.

Taking the other half doesn't seem to be an option in these Covid days. I recorded my first Consultant meeting, but even then the questions only occurred later as I chewed over what I'd heard.

I need to process more quickly I guess, but there's always an awful lot to process. 

 

 

User
Posted 17 Aug 2020 at 12:36
Hi Dave,

yes, part of the purpose of the biopsy is to identify which type of prostate cancer it is. You would expect to have been told if you had one of the really rare & difficult ones although we have seen on here that sometimes the urologists have just sort of mentioned it in passing and glossed over the implications.

The best way to find out is to dig out your diagnosis letter - it should say somewhere "adenocarcinoma"

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

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK