How long should I continue with bical... - Prostate Cancer N...

Prostate Cancer Network

4,946 members3,081 posts

How long should I continue with bicalutamide after radiotherapy?

Smarks42 profile image
12 Replies

I just completed 40 external beam IMRT treatments two weeks ago. I was Gleason 3 +4, negative bone and CT scans, and although my Decipher score was a disappointing 68, it forecast that with radiotherapy I have a 9% chance of metastasis in 10 years and a 12% chance of mortality in 15 years. Now age 81 with no serious comorbidities, I like these odds. My RO put me on 50 mg of bicalutamide before radiotherapy began. Now that I'm done, he had wanted me to stay on the drug for another 6 months, but in my last visit I told him that I wanted to get off it sooner because I feel it is delaying my return to strength, creating mood swings, hindering my faltering libido, and giving me some breast swelling and pain, for which he prescribed 10 mg of tamoxifen daily. He suggested that I stay on the two drugs for another 6 weeks (4 more to go), then do labs for PSA and for testosterone. If PSA is low (as it should be), he's comfortable with me getting off the drugs. But I'm also noticing some shortness of breath, which apparently can be side effects of either or both of the 2 drugs, and the other side effects are continuing. In general, I'm a drug-sensitive guy, and I'd like to get off of these two without waiting any longer. At my age, the tradeoff between retrieving my quality of life and compromising it with these side effects is not worth continuing. Any thoughts from your end would be much appreciated.

Written by
Smarks42 profile image
Smarks42
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Justfor_ profile image
Justfor_

Doctors are prone to prescribing Maximum Permissible Dosages. I am on a Minimum Effective one, in my case 1/8 of the former, 20 months now and doing great. Monthly updates can be found in my "Bicalutamide Maneuvers" thread.

Tall_Allen profile image
Tall_Allen

Why take a risk for 4 weeks?

Smarks42 profile image
Smarks42 in reply to Tall_Allen

I guess I don’t understand what the risk is. What I see online is that ADT drugs typically continue after radiotherapy when there is already evidence of metastatic disease. And if my PSA started rising now that RT is done with, they would put me on a stronger ADT anyway. Do you know any studies that look at bicalutamide use after RT? I don’t see any.

Tall_Allen profile image
Tall_Allen in reply to Smarks42

Adjuvant ADT is used to help radiation get rid of the localized PCa, as in this clinical trial for men with intermediate risk PCa and a high Decipher score:

clinicaltrials.gov/study/NC...

Your high Decipher score is grounds for hormone intensification (ADT+Nubeqa) instead of just 50mg/day Casodex (which is substandard) or ADT (Lupron or 150 mg/day Casodex - which is standard).

"And if my PSA started rising now that RT is done with, they would put me on a stronger ADT anyway." Think of ADT like antibiotics - if you stop taking an antibiotic before you killed off a bacterial infection, you select for the most resistant strain and it comes back with a much worse disease than you would have had if you stayed the course. Similarly, if you haven't yet killed off all the cancer cells in your prostate, stopping ADT too soon risks selecting for more resistant strains.

I'm finding that every doctor in the prostate cancer field is consistently concerned with ridding us of prostate cancer as much as possible and do not care about quality of life. I'll be starting radiation, 4 months after rp, towards the end of July. ADT was recommended. I refuse. Its that simple. Thats my choice. I, too, am drug sensitive. I am not taking any drugs for anything right now, though with naturally low testosterone, I suppose I might need to start taking medications, or start taking testosterone replacement. Doctors do not want me to take testosterone. But I'm not letting doctors make medical decisions for me. It should be that way for everyone. Not "I'll do whatever my doctor tells me to do."

Justfor_ profile image
Justfor_ in reply to

4 months after RP is TOO early. Six months is the bare minimum, although I have met a RO that wouldn't irradiate before 9 months.

in reply to Justfor_

everything i've read says it should be 3 to 6 months after rp.

Justfor_ profile image
Justfor_ in reply to

You are reading wrong texts. Every text that I have read places continence as the first rule, like sRT will freeze any improvement in this domain if not take a step backwards. Second rule for those that have achieved continence early is tissue healing especially at the anastomosis. Some bodies grow tissue at the anastomosis joint faster than others. For this to become permenant/final 6 months min to one year max. Irradiation stops healing everywhere, there as well, resulting to time deterioration of achieved continence. Ask a couple of doctors about it. I have asked 3 of them, two of whom were ok with 6 months the third adamant regarding 9 months.

ok. well you read whats best for you and i'll read whats best for me. ok? i absolutely hate being told i'm wrong. maybe go help someone else who doesn't mind your tone.

j-o-h-n profile image
j-o-h-n in reply to

come on now........ Tone in a written document? I don't thing you're wrong.... you're just not correct........ A grain of salt would do you good.........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/09/2023 5:32 PM DST

in reply to j-o-h-n

2 oncologists at sloan kettering and 1 oncologist at susb says do it now and don't wait. so, i guess you're just not correct or listening to the wrong doctors. so, maybe you can listen to your doctors and i'll listen to my doctors. how about just saying what you did or your experience rather than telling someone they arent correct or they are somehow wrong. frankly, i'm sick of this group. good luck.

j-o-h-n profile image
j-o-h-n in reply to

Sick of me? Well I've been a paYtient of MSK for 22 years with one of the best Dr. Michael Morris as my oncologist.... Of course listen to your docs, but take the advice here with a grain of salt.... and do what you gotta do....... Stay with us....... And keep fighting the beasts........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/09/2023 6:05 PM DST

You may also like...

Is Bicalutamide needed after Orchiectomy

it for two more years. Is this normal given that my dad had Orchiectomy in June 2022 and his PSA...

Trying to decide if I will continue ADT after 9 months.

1st. Really don’t want to continue side effects. If I stopped ADT and PSA was to start to increase...

How long should PSA go down after SBRT

3+4 gleason, PSA 2.7 on Avodart. 9 months after ViewRay SBRT treatment, no ADT, PSA are the...

What next after radiotherapy?

just finished 60Gy in 20 Fractions. The current side effects are minimal - loose stools about 5...

Next steps after radiotherapy

additional tests to determine if the radiotherapy had it's intended effects and if additional...