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If radiotherapy failed, what is next ?

User
Posted 19 Jan 2015 at 10:18
I am posting on behalf of my dad , he was diagnosed in September 2013 with t3b Gleason 9 prostate cancer with a psa of 61 . Bone scans etc we're clear .

He immediately started on hormone therapy and in january 2014 his psa was down to 0.8 . In July 2014 he started 4 weeks of radiotherapy followed by Bracchytherapy.

Last week , January 2015 , he went back to see his urologist and found out his latest psa result is 43 . The consultant seemed mystified and has ordered another test . He will see his radiographer in 3 weeks and find out the test result then .

Has anybody ever heard of this happening , if the result is genuine does it mean the radiotherapy has failed ? He is feeling very confused / upset and very uncertain about what might happen bbext so any help would be really appreciated .

Wishing you all the best ,

User
Posted 19 Jan 2015 at 17:25

Hi Sm,
I am sorry to see the situation you have found yourself in and if the PSA result is correct then the treatment is probably not going to plan. I would be less concerned about whether the brachytherapy has failed and more concerned to find out whether the hormone treatment is doing its job. Do you know whether the urologist also asked for his testosterone to be tested?

If his testosterone is nice and low then it suggests the prostate cancer has learned to feed off something else. If the testosterone is around or above 1.0 then the hormone might need to be changed to another one that works in a slightly different way.

It must be very worrying and disappointing, particularly as your dad presumably chose this treatment plan in the hope that he would get rid of the cancer, although I am sure they will have explained to him that T3b and G9 meant a cure was by no means certain. In fact, with his initial PSA and his G9/T3, some hospitals wouldn't even have agreed to him having brachy!

If you can find the paperwork from his original diagnosis, just have a look and see whether it says what kind of prostate cancer he was diagnosed with - adenocarcinoma is the most common.

Edited by member 19 Jan 2015 at 17:26  | Reason: Not specified

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

User
Posted 19 Jan 2015 at 17:46

Hi SM,

 

Could you confirm that your Dad is still on hormone treatment & it wasn't stopped to judge the effectiveness of the radiotherapy ?

If still on it - is it tablets or injections ?

 

User
Posted 19 Jan 2015 at 17:50
Thank you for the reply it is very helpful , I have checked the original paperwork and adino carcinoma is what is listed . I believe they are also testing his testosterone level , but I don't know what is is currently .

They apparently suggested Bracchytherapy because he had initially responded so well to the hormone therapy . The hospital has suggested that flu/ infection could account for the high psa - but it seems unlikely to me based on the little information I have read .

He is 62 so hopefully the next appointment may give us some answers .

Thanks again.

User
Posted 19 Jan 2015 at 17:54
Hi Rob ,

Hormone therapy has continued throughout , zoladex injection and tasmalousin Tablets .

User
Posted 19 Jan 2015 at 18:28

Hi

Has he had other PSA tests in between. It seems strange to have yearly tests at this point.

Bri

User
Posted 19 Jan 2015 at 18:41
He did have a Psa test prior to his Bracchytherapy , I'll look through his paperwork and see what it says (July 2014). He had not had a psa test following radiotherapy until January 2015 .

My Mother in law has recently had ovarian cancer and been treated by bupa , don't mean to criticise the nhs I know they do deliver an exceptional service but I'm worried my dad is not getting the regular tests etc that he needs .

No testosterone test has been done and my dad just wants to know as little as possible about his condition - so I feel like I need to get on top of it and speak to the consultant , but I'm just not sure how at the moment .

User
Posted 19 Jan 2015 at 19:40

O.K. Looks like we really need that testosterone level figure then. And of course the next psa result.

And not just " normal ". Need the exact figures from hospital or via GP.

 

User
Posted 20 Jan 2015 at 16:56
Sent my dad off to the go today to request a testosterone test , he was told you only have a testosterone test when you are on a different drug ( sorry he doesn't recall the name) .

Dr also said that the increased psa is due to zoladex no longer working and was relaxed about it .

Dad has an appt with consultant at mount vernon on third feb , so I will go along armed with questions !

What should I be asking ?

User
Posted 20 Jan 2015 at 17:25

For a testosterone test :-( The GP has misunderstood, I think.

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

User
Posted 20 Jan 2015 at 18:00

Hmmm. I've never had a problem with GP ( or Oncologist ) fulfilling my request to check the testosterone level whilst on Zoladex. They know I wouldn't ask for no good reason.

Main purpose being to check that the Zoladex is in fact working. It has been known to be miss-administered and ( in my case ) proved insufficient to lower the level to castrate 0.69 nmol/l. Even heard of the capsule popping out later in the day & needing another implant.

Sooooo. Unless you know the testosterone level you don't know a) Did last injection(s) work . b) Have you reached around 0.69nmol/l or are you much higher. There's different paths for different results.

 

Obviously this isn't needed every time there's a psa test. But very helpful if psa rises. Particularly an unexpected rise !

 

" Dr also said that the increased psa is due to zoladex no longer working and was relaxed about it "

Dr. appears innocent of much knowledge of P.Ca. Zoladex doesn't stop working assuming administered correctly. It shuts down testosterone production from the testes and patients stay on Zoladex or alternative, ( unless testes are later removed) whilst on hormone treatment approaches. Usually, even through other treatments, Zoladex is still used.

With a G9, and a possible jump in psa like  this figure , it is not a time to be in a relaxing mode . I hope the consultant shows a more active approach and having a recent testosterone level would be useful to him. Or it bleedin' well should be !

Luckily, your appointment is not long now. So it may be wise to talk this through with consultant rather than battle GP.

 

Suggest consultant would find another psa test useful. Also testosterone level. He may well organise scans to see what is happening.

 

Next step may be addition of Casodex tablet to see how psa reacts.

 

Final thought. It has been known for wrong figures to be given for psa results. e.g. reading wrong line of results or wrong patient !

User
Posted 20 Jan 2015 at 18:51
Thanks both for very helpful replies , I shall do myhomework before seeing the consultant.

My Dad seems reassured my the gp, but it worries me more that the information he's been given may not be correct .

User
Posted 20 Jan 2015 at 19:32

Fantastic advice by Rob. GP'S are general practitioners remember and not specialists.

It's a perfectly reasonable request to see if a drug that is used to suppress testosterone production is actually suppressing the testosterone.

Personally (but you're not me) I would be back down at the GP'S demanding the test and explaining to them why

Good luck with all this

Bri

User
Posted 20 Jan 2015 at 20:30

If GP still refuses a testosterone test, if your Dad contacted your Consultant's secretary and asked if this and recent PSA figures would be helpful at his next appointment, assuming the Consultant agreed (and I can't think why he wouldn't), he could then get back to the GP confirming both these tests were wanted by his consultant.

Good luck

Barry
User
Posted 20 Jan 2015 at 20:53

Thanks Bri & Barry plan to phone consultants secretary tomorrow - the oncologists. Starting to think the only option will be to offer to pay privately to see the consultant sooner or for the tests, it's keeping me up at night worrying that Dad's not getting the right treatment / monitoring . I may be overreacting though !

Edited by member 20 Jan 2015 at 20:57  | Reason: Not specified

User
Posted 20 Jan 2015 at 21:29

Rare for me to say this but no, I don't think you are overreacting in being concerned but at this point, thoughts of paying for things are not the answer. It could take longer to get the private consultation & then order the tests than it will take to speak to consultant's secretary and /or get the GP to change stance. If this was my dad, I would be sitting next to him and dialling the GP's number to ask the receptionist to check that last result .... is it definitely 43 or could someone have missed a decimal point and it is actually 4.3? I would also ask the receptionist to check letters from the hospital to see who dad is actually seeing in 3 weeks' time ... It is unlikely to be a radiographer so dad may have misheard this bit - is it the oncologist?

Assuming yes, I would then sit next to my dad while he phoned the onco's secretary to ask whether getting a testosterone level test was included in the bloods request the urologist arranged the other day.

Hope that helps!

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

User
Posted 21 Jan 2015 at 08:14
Thank you , the appointment on the 3rd is with the consultant oncologist ( checked the paperwork ) . I shall do exactly as you suggested today and see what the outcome is .
User
Posted 21 Jan 2015 at 10:43

I refrained from posting earlier on as my remarks may not have gone well at the time and I guess might not now – but such is life..

GP: I’m not saying the comments were correct, but I think we do need to have some consideration here. GP’s are under pressure and converse with a patient in a language they feel will be understood in a limited time frame

Zoladex isn’t working:: Ok technically most us of know it could well be doing its job in lowering T but from a GP to patient perspective Zoladex was given to control the cancer now if the PSA number is correct (not 4.5 or even 0.45) then in the sense of controlling the cancer “Zoladex isn’t working”.

Relaxed:: so would it be better if the GP had said “Start panicking”

Testosterone test: So you want the GP to effectively say to the consultant I’m doing your job for you and be faced with how do you know I haven’t requested one and just who is the consultant here.

Before the sparks fly – all I’m saying is have some consideration.

Ray

User
Posted 22 Jan 2015 at 22:28
Ray , thank your for your reply . I am grateful to receive advice from all members, particularly as you all have more knowledge on this subject than I .

I joined this forum to understand more about my Dads condition and to try and help him if at all possible . Whilst I appreciate the pressures placed upon GP's and the NHS in general , selfishly my Dad remains my priority .

I am very disappointed by your post and I suspect you knew that would be the outcome , but you posted it anyway. Your comments are not helpful or informative and have only served to make what is already an upsetting situation even worse .

User
Posted 22 Jan 2015 at 22:36
Results confirmed that the initial psa is genuine , the oncologist is out of the country until a couple of Days before Dad's next appointment - so will have to wait till then for some answers .

Spoke to one of the prostate Cancer nurses , who was absolutely brilliant and went out of his way to find answers on our behalf .

Thank you all for your advice & suggestions .

User
Posted 22 Jan 2015 at 23:06

Hi SM117,

I have just spotted your last post and see that you have spoken to one of the pca nurses, your Dad should have specific numbers to speak to them and they can arrange for the GP to do the Testosterone test. We had a similar problem and phoned the Urology Nurse she sent us forms for the GP , it is red tape I'm afraid, frustrating I know. 

I hope that you get some answers on the 3rd, If you are able to go along with your Dad it would help there is a lot to take in and it's always confusing getting second hand information. 

Stay as strong as you can.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2015 at 01:26

sm117,
I am sad that you have taken Ray's response that way - he is the kindest and most considered of people and has told you what you probably need to know but others may be worried about saying. One of the things we all learn on here eventually is that facts equip us much better than denial or misunderstanding.

What did the consultant's secretary say about whether a T test had already been ordered? Also, when you say you have spoken to the PCa nurses, do you mean the ones at PCUK? I think Julie's comment about the nurses arranging for GP to do the test was about your dad's specialist nurse at the hospital NOT the PCUK ones.

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

User
Posted 23 Jan 2015 at 07:55
Thank you Julie , much appreciated.

I spoke to the specialist nurse , who then spoke to the urologist and tried to arrange an earlier oncologist appointment . Testosterone test has not been ordered , will just try and be patient until the 3rd.

Edited by member 23 Jan 2015 at 10:15  | Reason: Not specified

 
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