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Surgery/ART Are Failures - Micrometastatic

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Posted 5/28/2015 8:25 AM (GMT 0)
PSA never went down after adjuvant radiation. Past three readings over nine months were .03, .05 and now .17. Rad Onc convinced it metastasized possibly even before surgery but is Micrometastatic. Seeing med onc on Monday.
Need advice:
What to ask about hormone therapy
What scans should be done (and does that even change course of treatment)
Med Onc names for second/third opinions
Hubby's stats: PT3B, EXE, SVI, 4+3 with tertiary 5, LVI, initial PSA 3.7, post-surgery .02/.03, post-radiation .03, .05, .17.
Is there hope? Will there be a decent quality of life for him? I've never been so scared or heartbroken. Help me help him.
Posted 5/28/2015 11:59 AM (GMT 0)
Don't give up hope! After surgery and radiation didn't work, my husband has responded well to intermittent HT. This has not be a picnic, but he has good quality of life even with the hot flashes and other SE. We're two years into this, but you will find many on HW who have been managing the disease for a long time as well as those who have been cured.

Like your husband, mine has micrometastasis which haven't been located. Scans haven't located the mets yet. He is enrolled in a NIH study of PET scans this summer that we hope will be sucessful. We try to think of this as a chronic disease instead of a terminal one. Some days that is hard, but it has been a positive shift in attitude. Help him by reading all you can and being his best advocate.
Posted 5/28/2015 1:14 PM (GMT 0)
Mboc,
Hormone Therapy has its own challenges and everyone responds differently to treatment. Some have mild side effects, others are more severe. Regardless of the side effects, hormone therapy can be an effective tool at slowing down the progression and add years to life so in my opinion when radiation and surgery have failed, hormone therapy will help.

As for scans, your husband's PSA is likely not high enough for scans to pick anything up so I am not sure what the benefit would be. There may be a more sensitive test that you can look into as DYank pointed out.
Posted 5/28/2015 1:26 PM (GMT 0)
You are not alone. Mine has climbed too after SRT. The question is where is the cancer. Did your RO miss it? Met with my Uro who only offered Lupron in the future. I talked about the latest scans C-11 and 68ga. His response was it could help you or it could hurt you. I got the impression that they don't have the equipment so they don't support it. I looked at compassionate oncology's websitehttp://www.compassionateoncology.org/ and the use of leukine as an immune booster to and get your immune system to fight the cancer but its expensive. Lots of guys on a statin with metformin and adovert. here is dr almeida you tube of c11 well worth watching and gives me some hope.http://youtu.be/rUbY1aTNZKQ
Posted 5/28/2015 9:20 PM (GMT 0)
My money is on the new radioimmunotherapies like Lu-177 or Ac-225/Bi-213 -anti-PSMA that have the ability to attach to and kill micrometastatic PC. Hormone therapy is likely to work for a very long time, so the new therapies will be available then.

- Allen
Posted 5/28/2015 11:31 PM (GMT 0)
Can't thank you all enough for the replies and guidance. It helps us to look at this as "living with" and not "dying from" cancer. My hubby said from the beginning at initial diagnosis that science is going to save his behind, and Allen just confirmed that.
Posted 5/29/2015 1:23 AM (GMT 0)
Standard treatment is usually to go on Lupron or one of its clones like Eligard, Trelstar or Firmagon..They all work the same and come with the side-effects you would expect from chemical castration...This "therapy" usually delivers a full remission with PSA dropping back into the undetectable range. This condition usually lasts from 2 to 5 years..Then a drug that compliments the Lupron is added, Casodex (bicalutamide) which if you are lucky will maintain the remission for several more years. When that begins to fail, there are several effective new treatments in use and in the pipeline....

But for sure, both you and your husbands life will change as the side-effects from the ADT take their toll...

Best of luck to you both....
Posted 5/29/2015 10:45 AM (GMT 0)
Fairwind - would you be willing to share more details on what you've experienced while on ht? I've been continuously researching and trying to get as much info as possible. We know this is all a game changer since we thought surgery/ART would be curative. But John (hubby) has such an incredible positive attitude and he knows he's literally in the fight for his life.
Posted 5/29/2015 11:34 AM (GMT 0)
My father was on Lupron for three years. Honestly I don't think he found it that bad. I think the tiredness he experienced for a long time after his main treatment (IMRT) was from the radiation.
But the whole time on Lupron, he lived a very normal life, continued to work, played lots of golf, traveled with my mom. He's been off it for about two years now, but his natural testosterone never really came back, and he and his doc are fine with that, don't want to take any chances of re-awakening anything now that he is essentially in remission....psa still zero and doing very well.
Oh, and his gleason scores were a mix of 9 and 10, and his tumor was stage 2. So even with that high gleason score, this stuff can be beat.

Cheers
Posted 5/29/2015 11:37 AM (GMT 0)
Gibson00 - you made my husband and me tear up - in a good way. Bravo to you as a daughter and your father as a fighter.
Posted 5/30/2015 1:03 AM (GMT 0)
Actually, I'm his son.... :)
Anyhoo...your husbands PSA is nice and low. I'd say he has many many good years ahead of him. Do whatever you need to do for treatment to stay on top of it, and keep living life and doing the things you enjoy.
Posted 5/30/2015 8:15 AM (GMT 0)
Oops - was texting with my daughter at the same time as reading your post. Had daughter on the brain. Sorry.
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