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Confused by treatment - prostate, cancer, treatment

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User
Posted 12 Jun 2014 at 12:42

 

 

Can any of you wise and well-travelled people give us some advice/guidance or tell us/ me not to worry as much as I am doing at the moment!!!

My husband, Pete, was diagnosed last July (2013), with advanced prostate cancer. Asymptomatic except for a bladder which wouldn't let go of the urine!

He was referred to a urologist, who prescribed a 3-monthly injection of Prostap, which seemed to be working fine. Still asymptomatic except for small amounts of lower back and pelvic pain. The cancer had spread into those bones. He was then referred to a trial at the Freeman Hospital in Newcastle, and was put on the control arm, which was Prostap only 

At the beginning of May his PSA had gone from 7 to 37, and he was prescribed with Casodex, which he is currently still taking. He also was referred for  bone scan, which he had four weeks ago.

At an appointment yesterday, the oncologist told him his cancer had not progressed further since last July, and suggested he start taking Zometa and Radium 223 after we get back from holiday in 4 weeks.

He didn't have his normal blood test by his specialist nurse, as she was on holiday. Pete insisted that he had one; another nurse sorted one out for him, and the oncologist said that he would ring Pete today with PSA results.

At 8.30 this morning, he rang to tell Pete that his PSA had risen, but he wouldn't tell him how high!!?? 

He wants Pete to start on abiraterone when he gets back from holiday, but he didn't say whether he wanted him to take the Zometa and Radium 223 as well

Men don't ask questions of doctors, or at least some men don't!!

Has anyone got any suggestions as to what our/my next questions should be about the sequencing, or apparent lack of it! I have spoken to the specialist nurses, and Ali was incredibly informative and helpful, but couldn't really suggest ways forward, except to ask you guys and gals for advice. She did say that Radium 223 wasn't prescribed very often tound Newcastle 

User
Posted 13 Jun 2014 at 00:24

Hi Jenny,

The problems I find with appointments is that often I have hurried through traffic, worried about finding a parking space, got to the hospital with minutes to spare, only to spend half an hour often longer in the waiting room.

Then I get some doctor who doesn't always seem aware of how we left the conversation last time, I am wrong footed, presented with facts I hadn't anticipated, and left wallowing in uncertainty.

So what I do after appointments like that, is write a carefully worded and polite letters to my Consultant, calmly setting out the facts as I understand them, and querying the various treatment options.

This approach works, last December I was dismissed at appointments as someone who would be left to quietly die, Gleason 9 offered no hope or so I was told, six months on after a bit of research on the Internet and a couple of polite letters, I have been referred to a better equipped, more specialist hospital where I am to have treatment which while it may not 'save' my life, will certainly extend it.

The trick is to learn as much as you can, research the options, and write polite letters which identify your concerns and forces the makes the Consultants to justify their decisions.

:)

Dave

  

 

  

 

User
Posted 12 Jun 2014 at 20:34

If I read you correctly Casodex was started in May. So only been on it for  six weeks ?

That's a bit soon to really know if of benefit - I was told to give it a couple of months before testing & judging.

Casodex helps some but not others; & maybe your Onco has decided it may not be.

 

Abiraterone is a more powerful med & its use will help determine if HT is still viable as the main treatment. So that would be a logical next step.

Addition of Rad 223 might be added soon but Onco may want to judge reaction to Abiraterone. Here in U.K., they tend to try one med before adding another to determine each result individually.

Zometa can be added at any time  & some feel it is a good addition.

 

One thing I would have wanted to know would have been the testosterone blood level throughout Prostap use. Just to see if the T. level is above or below 0.69 nmol/l.

User
Posted 13 Jun 2014 at 02:11
Jenny, I think you already know that you are not worrying unnecessarily. Your husband's PSA rise at the last test indicated that the HT was not working as it should so they added casodex and ordered a bone scan, presumably to check whether he had new mets. At the appointment, the onco had been reassured by looking at the scan that there were new bone mets but it sounds like he was already of the opinion that the HT isn't working (Radium 223 is usually given to men who have become hormone resistant). The new PSA level may have confirmed this and caused him to re-think or maybe he suspects now that there may be new spread to soft tissue rather then bone. Conversely, it might be that he now thinks the HT could still be working and abby-tabby will give it a boost.

On the other hand, it could simply be that one aspect of this trial is looking at the benefits of giving treatments such as radium 223 / abby-tabby sooner rather than later in which case you will have worried unnecessarily but as a trial centre they are supposed to explain these things to patients!!!

I think Rob is spot on. Ask the trials nurse to check for you whether your husband's testosterone has been monitored as part of the trial and if so, whether he ever actually achieved castrate level (the level you need to get to to starve the cancer). If you ask about the latest PSA test, the nurse should be able to give you this and they will also send the result to your GP so you could ask him/her. You could also ask whether there is any intention of doing a new scan to check lungs, lymph, liver, etc.

Worry, but then channel that negative energy into getting some clarification from the trial team. It might be that this is actually good news and once you know that, you can relax and enjoy the summer.

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

User
Posted 13 Jun 2014 at 11:05

Hi Jenny,

 

PCa is such a complex disease, no wonder you are confused. Doesnt help that the medics themselves dont seem very sure either. A lot of treatments seem to go down the route of try it and see, rather than the personalised care we are supposed to look forward to in the future. With advanced cancer, you are wise to err on the side of being concerned. Good your onco seems willing to look at some of the newer treatment options. If I was back a year ago with Neil just being diagnosed I would want a much more assertive approach to his treatment and certainly more monitoring via scans not relying on PSA and any aches and pains investigated with high grade disease. Sounds OTT and of course this isnt right for every patient but looking back it may have made some difference in our case.

 

Best wishes, Fiona.

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User
Posted 12 Jun 2014 at 20:34

If I read you correctly Casodex was started in May. So only been on it for  six weeks ?

That's a bit soon to really know if of benefit - I was told to give it a couple of months before testing & judging.

Casodex helps some but not others; & maybe your Onco has decided it may not be.

 

Abiraterone is a more powerful med & its use will help determine if HT is still viable as the main treatment. So that would be a logical next step.

Addition of Rad 223 might be added soon but Onco may want to judge reaction to Abiraterone. Here in U.K., they tend to try one med before adding another to determine each result individually.

Zometa can be added at any time  & some feel it is a good addition.

 

One thing I would have wanted to know would have been the testosterone blood level throughout Prostap use. Just to see if the T. level is above or below 0.69 nmol/l.

User
Posted 13 Jun 2014 at 00:24

Hi Jenny,

The problems I find with appointments is that often I have hurried through traffic, worried about finding a parking space, got to the hospital with minutes to spare, only to spend half an hour often longer in the waiting room.

Then I get some doctor who doesn't always seem aware of how we left the conversation last time, I am wrong footed, presented with facts I hadn't anticipated, and left wallowing in uncertainty.

So what I do after appointments like that, is write a carefully worded and polite letters to my Consultant, calmly setting out the facts as I understand them, and querying the various treatment options.

This approach works, last December I was dismissed at appointments as someone who would be left to quietly die, Gleason 9 offered no hope or so I was told, six months on after a bit of research on the Internet and a couple of polite letters, I have been referred to a better equipped, more specialist hospital where I am to have treatment which while it may not 'save' my life, will certainly extend it.

The trick is to learn as much as you can, research the options, and write polite letters which identify your concerns and forces the makes the Consultants to justify their decisions.

:)

Dave

  

 

  

 

User
Posted 13 Jun 2014 at 02:11
Jenny, I think you already know that you are not worrying unnecessarily. Your husband's PSA rise at the last test indicated that the HT was not working as it should so they added casodex and ordered a bone scan, presumably to check whether he had new mets. At the appointment, the onco had been reassured by looking at the scan that there were new bone mets but it sounds like he was already of the opinion that the HT isn't working (Radium 223 is usually given to men who have become hormone resistant). The new PSA level may have confirmed this and caused him to re-think or maybe he suspects now that there may be new spread to soft tissue rather then bone. Conversely, it might be that he now thinks the HT could still be working and abby-tabby will give it a boost.

On the other hand, it could simply be that one aspect of this trial is looking at the benefits of giving treatments such as radium 223 / abby-tabby sooner rather than later in which case you will have worried unnecessarily but as a trial centre they are supposed to explain these things to patients!!!

I think Rob is spot on. Ask the trials nurse to check for you whether your husband's testosterone has been monitored as part of the trial and if so, whether he ever actually achieved castrate level (the level you need to get to to starve the cancer). If you ask about the latest PSA test, the nurse should be able to give you this and they will also send the result to your GP so you could ask him/her. You could also ask whether there is any intention of doing a new scan to check lungs, lymph, liver, etc.

Worry, but then channel that negative energy into getting some clarification from the trial team. It might be that this is actually good news and once you know that, you can relax and enjoy the summer.

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

User
Posted 13 Jun 2014 at 11:05

Hi Jenny,

 

PCa is such a complex disease, no wonder you are confused. Doesnt help that the medics themselves dont seem very sure either. A lot of treatments seem to go down the route of try it and see, rather than the personalised care we are supposed to look forward to in the future. With advanced cancer, you are wise to err on the side of being concerned. Good your onco seems willing to look at some of the newer treatment options. If I was back a year ago with Neil just being diagnosed I would want a much more assertive approach to his treatment and certainly more monitoring via scans not relying on PSA and any aches and pains investigated with high grade disease. Sounds OTT and of course this isnt right for every patient but looking back it may have made some difference in our case.

 

Best wishes, Fiona.

 
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