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Re-staged and not sure if I should start ADT now or wait!

Jaffa_2001 profile image
7 Replies

Just been re-staged after a spike in my PSA (6.11). Recent bone scan clear but MRI shows a small re-growth of about 1cm in the prostatic bed. My current UK NHS consultant has always looked at starting ADT when PSA reached 10 or doubling time less than 6 months. Current doubling time is 30 months and it has taken just over 10 years since my post radiation nadir to reach this level of PSA. Would I be wise starting some sort of ADT now or could I wait until the magic 10 or perhaps even 15, my original consultant always used that number as a guide to hormonal manipulation. Any thoughts or guys with similar experience would be appreciated. If I do go for ADT and opt to have my chest irradiated does it effect nipple sensitivity? My nipples seem to help so much with getting and keeping an erection.

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Jaffa_2001
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Tall_Allen profile image
Tall_Allen

Last year, an important randomized clinical trial (from Australia) showed that men who started ADT immediately cut their 5-year risk of death in half compared to men who waited. Most men in that study had intermittent ADT, and the type of ADT varied. Because the sample size was lower than expected and survival was very high at 5 years in both groups, we'll have to see if the trend continues at 10 years. I think you should forward this study to your consultant and start a discussion with him about it. Here's the study:

thelancet.com/journals/lano...

I didn't know that anyone was still irradiating chests. There's a better solution. 10 mg daily tamoxifen will prevent breast growth from Casodex. In the following trial among men taking Casodex, gynecomastia occurred in 8% of men taking tamoxifen, 34% of men who had chest radiation, and 70% of men who did nothing. Raloxifene might work too.

thelancet.com/journals/lano...

Jaffa_2001 profile image
Jaffa_2001 in reply toTall_Allen

Thanks, will discuss with my Consultant. Regards Brian.

dougdee123 profile image
dougdee123

Hi,

Sorry to hear that your PSA has started going up again but maybe you are reacting a little too soon. I can certainly recognise the desire to'do something'.

I would personally discuss it with your oncologist and if he believes it appropriate to wait then I would go along with it at least as far as your next PSA. The reason is that I would try to avoid having ADT until it really is necessary. Don't be under the misapprehension that it is a treatment that has deals with the problem with no other effect. You should be aware that the side effects are not fun. If it is a necessary part of treatment then so be it but not otherwise.

I had ADT before my radiotherapy and the long term effect after having it was that the package is very much reduced to the point where penetration is really not possible. Erections came back six months after finishing it but it will never be the same.

re the nipple sensitivity etc. Is it not the case that any ADT for recurrence will be likely to be continuing? If so then the last thing you will be worrying about will be stimulating an erection.

Doug

Jaffa_2001 profile image
Jaffa_2001 in reply todougdee123

Cheers Doug, really appreciate that. Regards Brian.

billd9946 profile image
billd9946 in reply todougdee123

Hi Doug. Your response got my attention and I'm wondering how long you were on ADT. My PSA seemed to be holding at .05 and the radiologist and surgeon felt I should begin ADT and radiation therapy, given my PSA level of .03 plus. There is a study that shows beginning treatment at this point is advantageous. However, I sought the opinion of a medical oncologist at Hopkins and he advised I should wait till PSA reaches .2. I had already received the two shots of Firmagon and about to start radiation therapy when I put the breaks on. I did not start my radiation therapy in October as planned, and still now three months after having the Firmagon shot, I'm still having hot flashes and feeling uninterested in sex. I'm wondering if I'll ever recover!

dougdee123 profile image
dougdee123 in reply tobilld9946

Hi Bill, I had Zoladex . for 7 months in advance of my radiotherapy. The argument was that it would shrink the prostate in order that the focus of the treatment could be more restricted and thereby avoid collateral damage to the surrounding organs particularly the bowel. As far as I know that is what happened. I did indeed have a total lack of interest and like you was wondering if there would ever be any recovery. The recovery was progressive but but it was certainly 6 months after the end of it that any stirring was found. I believe I have heard it said that the recovery time is usually the same length of time that you had the ADT. If the flashes continue then you are not over it yet. Those had definitely gone before there was any progress for me.

The other side effects I noticed apart from the shrinkage were things like the thinning of hair. My body hair all pretty much went away. Ever since I now only have to shave my face every second day and found that the hair on my head is much finer. I have not lost coverage but the individual hairs are very wispy now.

Whilst I was having ADT I found that my memory was less good and my ability to concentrate was reduced. I'm not sure if that has recovered fully.

I was interested to see the numbers that you quote. Are you quite sure that all are correct? In particular I am surprised that your doctors are considering the therapy if you have a PSA of .05. That would be quite low I would have said although I am not a doctor. Mine is 0.3 about 2 years after the radiotherapy and the end of the ADT and my oncologist decided not to see me for a year on the basis that all is pretty well. Also the information that I have is that they prefer to wait until either it rises to 2.0 or if the doubling time reduces to 6 months.

Doug

billd9946 profile image
billd9946 in reply todougdee123

Hey Doug. Your situation is different from mine, in that you didn't have your prostate removed, so I was confused. I'm under the impression that the radiation treatment you received directly to the prostate generally reduces the PSA, but not necessarily to zero. After a prostatectomy, like I had, one would hope the PSA goes to zero. However, I'm really not sure if mine ever did. Hopkins was giving me the basic PSA test, which only detects PSA equal to or greater than .1 and considers anything under that to be "undetectable." It was only when I started getting the ultra-sensitive PSA test that I found out my value was .04. Three months later it was .05, and three months after that it was again .05. Some doctors cited the below article as reason for me to begin Salvage radiation therapy, which involves radiation to the entire prostate bed. That sometimes causes complications, because the radiation is not so targeted and other organsmay be affected. It's different from your radiation treatment which targeted the prostate specifically. I tell ya, this prostate cancer is a quirky thing... it's difficult to figure what's going on if the PSA begins to rise, and what action to take.

Here's the article:

pcnrv.blogspot.com/2016/08/...

I hope this helps clarify. Write any time!

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