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Possible Bicalutamide when disease is not active but testosterone has risen slightly

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User
Posted 15 Oct 2022 at 23:27

Hi all,

I was so pleased to be able to post recently that my Husband's CT scan and Bone Scan showed no spread of his Cancer and after a review we were told that all was well and the treatment should carry on with Zoladex injections and regular monitoring.

The other day we received a telephone call to tell us his testosterone levels had risen slightly and that his reviews would now be taken down from six monthly to three monthly and if in three months after blood tests his testosterone level (1.1mmol/L) has stayed the same or changed again they are considering putting him on a daily tablet of 50mgs daily of Bicalutamide.  His PSA reading was less than 0.05ug/L.

I am concerned as the letter tells us there is no evidence of his disease being active so why put him on more hormone drugs.  I would be grateful if any of you kind people understand why this may be done.

Many thanks

Barbara

 

User
Posted 16 Oct 2022 at 11:54

I agree with microlei. Increasing testosterone in no way suggests any increase in cancer. It does suggest the Zoladex isn't working as well as it should be. I wonder if they accidentally gave him the 28 day dose instead of the 3 month dose? This question arose on the forum before, it took ages to get the batch number from the surgery and it was a wild goose chase in the end. So it is  probably not worth  pursuing this.

During RT and for three months after low testosterone is important. It is far less important by a year post RT. Oncologists are cautious, I was on HT for two years.

If I were in your position I would not be worried about cancer, I would wait until after next zoladex injection and see if testosterone had gone down again. By the time you get to that point the HT is probably adding no extra benefit.

The only slight problem with this approach is that if the cancer returns in ten years time, you will be questioning if you should have been more aggressive with the HT a decade ago. As you can't predict the future and can't change the past, you may as well enjoy living in the present.

Dave

User
Posted 17 Oct 2022 at 04:39

Barbara, as a personal perspective, I'm 75 and Gleason 9, now nearly two years post RT and choosing to end my HT at 21 months rather than the 3 years suggested by my oncologist. As Dave says, you might wonder if you got it wrong if the cancer comes back in 10 years but from many recent discussions here [again with Dave adding much valuable information] it would seem that even if recurrence occurs, it's probably not going to be because your husband was so naughty as to call a halt to his HT at 2 years rather than 3.

It also sounds as though your husband might be suffering from some loss of mental sharpness as a result of being on Zoladex. I admit that I feel this drug has taken the edge of my memory in some ways and I don't know if this is a temporary or permanent change. I have read suggestions that Zoladex can impair cognitive functions in the longer term, though there's no definitive data on this. I guess it would be impossible to test scientifically for a number of reasons.

All up though, I'd say that loss of mental acuity is a vital consideration, so if the idea with the bical. is to keep your husband's psa down up to the 2 year mark, that might be worth pursuing. On the other hand, if they want him to persist to 3 years that might be pushing it too far taking into account QoL issues and current thinking on duration of HT.

 

Jules

Edited by member 17 Oct 2022 at 09:32  | Reason: Not specified

User
Posted 17 Oct 2022 at 23:16

Castrate level doesn't have a universally agreed value, although 1.2nmol/L is a common definition, and the range of values referred to as castrate level varies from 0.7 - 1.7 nmol/L. The GnRH Agonists do often get Testosterone down below castrate level, and usually below 1.0 nmol/L, but at least for the testing of Zoladex, they regarded it as OK providing it didn't exceed 1.2nmol/L. I have heard of a few cases where a GnRH Agonist didn't get it down to 1.2 nmol/L or lower, and switching to one of the others worked (there are 3 of them), although two of these cases were switching from Prostap to Zoladex.

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User
Posted 16 Oct 2022 at 00:07
Evidence is one thing suspicion based on other things could be something else, like Testosterone rising despite still being on Zoladex. It's really a question to ask the Oncologist.
Barry
User
Posted 16 Oct 2022 at 00:25
They are evasive Barry and don't seem to tell us the full picture, we thought things were going so well and now they throw this at us. My Husband throughout this has taken it in his stride I have the anxiety levels. On the one hand they tell us there is no evidence of the disease being active and then tell us he needs more medication and I did ask but not really given a satisfactory answer/

User
Posted 16 Oct 2022 at 03:09

If his psa was rising while he's on Zoladex there'd be some reasons for concern but rising testosterone isn't saying anything direct about cancer but more perhaps about the Zoladex becoming less effective, particularly if your Drs are saying there's no evidence of the disease being active.

Your husband is now nearly a year and a half into his post RT Zoladex treatment and his psa remains low. In theory he's getting close to the 18 month mark at which time many of us go off our HT of one sort or another and see what happens.

Some doctors seem to be overly cautious on this one, thinking perhaps that while someone is either on HT or has low or non-existent testosterone, the chances of cancer cells multiplying are stalled. True, but at some point, whether it be 6 months, 12 months, 18 months .... 3 years, the HT stops. After that there's always a chance that the disease will reappear.

I don't see a reason for adding bicalutamide to the mix now and while I know it can be difficult, you really deserve an explanation for their thinking before taking it on. Given what you've said I'd guess that the answer is something along the lines of the "precautionary principle" but QoL is vitally important too, even if it's often ignored.

User
Posted 16 Oct 2022 at 11:10

Thanks for your reply Microcolei,  I think if they do decide he needs it in three months we need to push even more for the reasons.

User
Posted 16 Oct 2022 at 11:54

I agree with microlei. Increasing testosterone in no way suggests any increase in cancer. It does suggest the Zoladex isn't working as well as it should be. I wonder if they accidentally gave him the 28 day dose instead of the 3 month dose? This question arose on the forum before, it took ages to get the batch number from the surgery and it was a wild goose chase in the end. So it is  probably not worth  pursuing this.

During RT and for three months after low testosterone is important. It is far less important by a year post RT. Oncologists are cautious, I was on HT for two years.

If I were in your position I would not be worried about cancer, I would wait until after next zoladex injection and see if testosterone had gone down again. By the time you get to that point the HT is probably adding no extra benefit.

The only slight problem with this approach is that if the cancer returns in ten years time, you will be questioning if you should have been more aggressive with the HT a decade ago. As you can't predict the future and can't change the past, you may as well enjoy living in the present.

Dave

User
Posted 17 Oct 2022 at 04:39

Barbara, as a personal perspective, I'm 75 and Gleason 9, now nearly two years post RT and choosing to end my HT at 21 months rather than the 3 years suggested by my oncologist. As Dave says, you might wonder if you got it wrong if the cancer comes back in 10 years but from many recent discussions here [again with Dave adding much valuable information] it would seem that even if recurrence occurs, it's probably not going to be because your husband was so naughty as to call a halt to his HT at 2 years rather than 3.

It also sounds as though your husband might be suffering from some loss of mental sharpness as a result of being on Zoladex. I admit that I feel this drug has taken the edge of my memory in some ways and I don't know if this is a temporary or permanent change. I have read suggestions that Zoladex can impair cognitive functions in the longer term, though there's no definitive data on this. I guess it would be impossible to test scientifically for a number of reasons.

All up though, I'd say that loss of mental acuity is a vital consideration, so if the idea with the bical. is to keep your husband's psa down up to the 2 year mark, that might be worth pursuing. On the other hand, if they want him to persist to 3 years that might be pushing it too far taking into account QoL issues and current thinking on duration of HT.

 

Jules

Edited by member 17 Oct 2022 at 09:32  | Reason: Not specified

User
Posted 17 Oct 2022 at 23:16

Castrate level doesn't have a universally agreed value, although 1.2nmol/L is a common definition, and the range of values referred to as castrate level varies from 0.7 - 1.7 nmol/L. The GnRH Agonists do often get Testosterone down below castrate level, and usually below 1.0 nmol/L, but at least for the testing of Zoladex, they regarded it as OK providing it didn't exceed 1.2nmol/L. I have heard of a few cases where a GnRH Agonist didn't get it down to 1.2 nmol/L or lower, and switching to one of the others worked (there are 3 of them), although two of these cases were switching from Prostap to Zoladex.

User
Posted 23 Oct 2022 at 00:53

Hi Jules,

Thank you so much for your reply and kindness.  My worry is that the Zoladex has affected my Husband in many ways his nature has changed and although I know it's the effect of the Zoladex its hurtful at times when he is suddenly so bad tempered with me for no reason. His memory is definitely not the same and his mental agility is also impaired but I am hoping this will improve once he comes off Zoladex.

My worry is if they introduce yet another drug on top of the Zoladex it will affect him even more, he has, bless him, coped with all this by shutting it out and maybe not everyone's way he has coped very well in his way.

On the positive side we have clear scans and no sign of the cancer so hopefully his swift action at seeing the doctor and the ongoing treatment has worked, of course time will tell, and although he gets tired more easily these days maybe that's also a natural progression of age as we are now both 70, although reasonably active and outdoorsy people.

We were told at the very beginning of all this his cancer was aggressive and could come back but feeling positive and hopeful right now.

Barbara

Edited by member 23 Oct 2022 at 00:55  | Reason: Not specified

User
Posted 23 Oct 2022 at 10:25

The side effects are not directly due to Zoladex (or Prostap or Decapeptyl), but are due to the loss of Testosterone, which all these cause, so switching is unlikely to make any difference to side effects.

I doubt if the Bicalutamide will add to those side effects as it works in a different way. It might add breast gland growth and pain/sensitivity, in which case Tamoxifen can be used to stop that, although that's more common when Bicalutamide is used by itself without injections. (Tamoxifen has no impact on breast fat growth/moobs, which is painless.)

Edited by member 23 Oct 2022 at 10:35  | Reason: Not specified

User
Posted 23 Oct 2022 at 21:14

Originally Posted by: Online Community Member
On the positive side we have clear scans and no sign of the cancer so hopefully his swift action at seeing the doctor and the ongoing treatment has worked, of course time will tell, and although he gets tired more easily these days maybe that's also a natural progression of age as we are now both 70, although reasonably active and outdoorsy people.

It's definitely harder for partners than it is for those of us with cancer, in some ways. It sounds as though your husband's prospects are good and both of you have now weathered most of the storm. Again from a personal perspective, I've found that with the end of HT effects in sight life is looking much better. Return of testosterone, if it happens, should be helpful in returning mood to something more normal. Given the changes in your husband's mood it's well worth pressing the oncologist to keep the length of his HT to the minimum necessary length. Opinions vary on this.

Jules

User
Posted 24 Oct 2022 at 01:29
Barbara, I think the person who called you has given you an if, if, if which is not helpful. Don't let it mess with your head - see what happens if the next test shows his testosterone is definitely rising and if the PSA starts to rise and if you are not by then close to his HT finishing anyway. It could be nothing but you have been given all this worry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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