Should I stop Hormone treatment?

I get 10 to 12 steamy hot flashes every day, plus two or three a night that wake me up. Hot flashes that make my shirt feel damp, beads of sweat on my forehead. Fatigue is some issue too, as well as...shrinkage... Sigh.

I've decided these are ok, even though I tire of them. They're ongoing confirmation that the Lupron and Casodex are still controlling my testosterone. That's of primary importance, so it's ok just by declaring it so.

Todd doesn't recommend playing Russian Roulette, but I do. As a SV positive Gleason 9, Russian Roulette odds (five out of six -- about 83 percent) are the best you are going to get. That's if you follow you doctors plan exactly. You can't get out of that game. But if you drop out of the ADT this early you will be loading a couple more cylinders.

Of course, the odds are that you will live for years and years even if your cancer recurs. There are lots of treatments. That's the good news. ... But, since you don't like the hormones it is also the bad news. Most of those treatments involve androgen deprivation. Your best shot at having as many years as possible with a normal testosterone level is to put up with the hormones now, for at least another year. At 18 months you can argue with your doctors about those last six months, if you want to. There will be some science on your side unless another study comes out to contradict the last one I read.

Fairwind,

He discussed his post-op path report here [uirl]https://www.healingwell.com/community/default.aspx?f=35&m=2716158&g=2718579#m2718579. He is a Gleason 9(4+5) with a positive seminal vesicle. He mentions above that his PSA has been "undetectable" since surgery.

Thanks Peter..

Okay Tom, G-9 with a positive vesicle...This is serious, high-risk business..I would man-up and sweat out the HT for at least a year before I dared to suspend it and see how things go as your testosterone level returns to normal....In any case, follow your doctors recommendations on this..Best of luck to you..

Thomas,

I know it's hard. Two years is a long time. But your wife and kids are why you are doing this. They are going to need to have you around.

Here's a link to one of my postings from when I was six months into HT and struggling.

www.healingwell.com/community/default.aspx?f=35&m=2605959

Key points (to save you from having to read the whole thing) are exercise and talking to my doctor about my depression. Both help but two years remains a long, long time...

ThomasT,
I normally stay out of discussions that involve ADT, because I have no personal experience with it other than 3 months on Casodex during SRT. But I'm surprised that a Uro might think an undetectable PSA for someone with your current treatment might indicate you could discontinue your ADT. It might well be that if you discontinued the ADT your PSA might remain undetectable. But while you are on ADT the ADT itself would push your PSA down, and undetectable is exactly what you and your doctors should expect to see right now.

Others here with more ADT experience than me, please correct my understanding if I am wrong.

Jim

My husband has been on HT (both Casodex and Elgard shots) now for almost two years.  We went to his Quarterback doctor (Dr. Sartor) in NOLA in September.  He said .. if it is working (which it is - PSA undetectable right now) - don't screw with it.  Yes, the side effects are a challenge to put up with - but since it is keeping the cancer in check ... put up with them.

ThomasT said...
I met my Oncologist last night and guess what, he also said I am ok to stop ADT and do the watchfull waiting. He said the suggestion he asked me before was taking ADT along with Radiation so the chance to kill the cancer cells are higher and I did it as his prefer so he said even at that time my PSA did not rise anything and he did all that just to be caution because my age is young and it might be recur. So I am confused now, last night I even ask him to continue for another 6 months but he said no need to.
I am totally lost again now.

I'm confused as well, but unfortunately you don't have much of a choice in the matter. I'm not sure if your URO and ONCO are confusing their recommendations or you are misunderstanding them. In my case, my URO recommended 2-3 years of HT and my ONCO only recommended 12 months.

ThomasT said...

Hi everyone, I need your advice. I am42 years old now and having Robotic Radical Surgery on Dec 21 2012. And follow the Radiation treatment on May 21 2013. At the same time I am taking 6 months ADT to make sure cancer won't be back. But I am so tired of the side affect and still getting hot flashes about twice per day. Since after my operation my PSA always shows "undetectable" I am thinking should I stop this treatment or make it to 1 year instead of 2 years. So if you have any case familiar with me or so please share with me.
Thank you.

Thomas,

What I usually do when I run across a study that conflicts with my doctor, is I email it to my doctor and ask for a reaction. There may be a very good reason his advice is different. Perhaps the positive margin was small and low grade, perhaps the invasion into the seminal vesicle was only into the muscle wall and not into the mucosa, etc.

Also, this is a shared decision making process. If you tell your doctor that what is most important to you is quality of life, and that the side effects are intolerable, he will weigh that against the benefits of continuing. If, on the other hand, you tell him that you want recurrence-free survival at all costs, he will probably recommend you continue on ADT and manage the symptoms. He can only react to what you tell him about your values.

- Allen

Allen, I told my ONCO last night I used to complained about the Radiation after 6 months of the Surgery to removed the Prostate Glance and then I have done it so I do complain about the side effect of the HT but still do so if I need to do to keep my life longer. Then he said I think the most important thing he wanted me to do is combine the Radiation and HT at the same time and I did it so he think I should relax and do the watch full waiting now. I might still go back to my family doctor to ask for the PSA test every three months to make sure everything is ok. I don't feel comfortable to wait for 6 months and worry all the way from now to then.