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Hormone therapy limited stock? Bad treatment?

User
Posted 15 May 2019 at 18:31

I'm a little concerned about my fathers treatment, he was diagnosed with,  I believe, a Gleesson Score of 7 (3+4) so borderline aggressive but so far localised and put on hormone therapy for the last 5-6 months , awaiting radiotherapy. He has been having regular hormone injections but the last one he was told, the hormone supressent  was limited in stock and was given a smaller dose, (told to come back in a month for another). 

My question is, is this shoddy treatment? He hasn't had a followup PSA test since starting his treatment 5 months ago. He couldn't get in touch with his oncologist (Never rang back). Part of me thinks hes low priority because it's more or less watchful waiting with hormone treatment but there has been no followups besides needles and the last one was not even the right doseage.

He has a followup with an actual doctor in a month but I do wonder whether not having the right hormone treatment will not do him any favours for the next month. He has also noticed an increase in bladder irritation which could indicate inflammation.

Advice? Thanks.

 

User
Posted 15 May 2019 at 20:45
Gleason 3+4=7 is not classed as ‘agressive’, and I have a friend who has been on active surveillance (i.e. do nothing, really) for five years with that condition.

I have found the NHS to be brilliant in my own case, but not without substantial pro-active input on my part! I suggest you get his consultant’s secretary on speed-dial, and bother her with all the questions above.

Best of luck to you both.

Cheers, John.

User
Posted 15 May 2019 at 20:53

You aren't on watchful waiting (there would be no hormone therapy, nor radio therapy planned). You are on an active treatment plan, which starts with 3-6 months hormone therapy, before doing radio therapy - a very common course of treatment.

What hormone therapy drug is he on?

I got a 3-month (10.8mg) Zoladex implant a couple of weeks ago without any problem, that was injected yesterday.

Having the 1-month one shouldn't matter, providing you have it again in another month. Normally the 1-month is just used as the first injection in case you can't handle it for any reason, before they switch to 3-monthly.

It's not clear to me if the "doctor" you are referring to is your consultant, or your GP.

It's time you had another PSA test, and they aren't expensive for the NHS. Given your upcoming doctors appointment, I would suggest you try to get a PSA test done a week before, so they have the result to hand. You might be able to arrange this by contacting a nurse beforehand to get a blood test form, either at the hospital (a Macmillan nurse if you have one assigned, or oncology nurse otherwise), or at your GP. If you have it done at the GP, make sure you go and get the result, because your consultant might not be able to access the GP's records (mine can't).

By the way, avoid cycling, horse riding, and sex/ejaculating for a few days before the PSA test, or you will get a misleadingly high result. Also, if he has a urinary infection, that will also raise the result. GP/nurse can test for that with a dip test. (Might be testable in a pharmacy like Boots too - don't know for sure.)

Edited by member 15 May 2019 at 20:57  | Reason: Not specified

User
Posted 15 May 2019 at 21:02

By the way, it helps us to answer your questions if you create a profile which has dates with symptoms, test results (PSA, etc), and treatments (including drugs).

User
Posted 15 May 2019 at 21:10

Your dad’s treatment is not “watchful waiting”. He’s on the standard treatment path for radiotherapy, which is typically six months of hormone therapy prior to the actual RT. I’m on the same treatment path myself (I too had Gleason 3+4, started HT last August, RT six months later in Feb this year).

 

 

Edited by member 15 May 2019 at 21:12  | Reason: Not specified

User
Posted 15 May 2019 at 22:20
Nothing shoddy about the treatment so far - the 3 month hormone injection is just more convenient for most men than having to attend for an injection monthly. There are also oncologists and patients who prefer the precision of a monthly dose.

I assume he is on Prostap rather than Zoladex, because Zoladex must be given every 4 or 12 weeks rather than monthly / 3 monthly.

It is also not unusual to have no pSA test in the initial stages of HT / RT treatment - the hormone needs time to bring the PSA down so a test at 3 months wouldn't really tell the onco anything useful. Did they tell your dad how long they wanted him to have the hormones before the radiotherapy starts? 6 months is common but some research indicates that the longer he takes the hormones beforehand, the more likely the treatment will be successful.

No need for your dad to avoid sex or horse riding in advance of his next PSA test - that is relevant only to men being closely monitored for minute rises and does not apply to first tests on HT.

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

 
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