What happens when PC Metastasize

You want to prevent or postpone metastasis as long as possible. If mets are detected you will be treated with Lupron, Firmagon, or something similar anyway plus probably Xtandi or Zytiga. Plus possibly other drugs and/or spot radiation. Why go there before you have to? It's better to start Lupron while you are still non-metastatic. You should be able to go on intermittent treatment and have some time in-between to recover. I'm on break from Firmagon right now. I know I'll have to start again sometime down the road, but intermittent ADT is way preferable to treatments and effects that will come later when it no longer works.
Jim

SteveO, this is a significant dilemma. The various types of PET scans will answer if the cancer is metastatic or locally recurrent but won't generally light up until the PSA is around 1 or higher. Do you want to wait for that? I didn't but ended up waiting at my recurrence as I was talked into it by one of my doctors. It turned out OK, I guess, in that only one spot was found and that was radiated and hopefully killed. So it's a personal decision as to whether to start treatment early or wait for more information. You need to talk to your RO and or MO.

Regarding Lupron, yeah, everybody hates it. But it nearly always knocks the tumor down and will give you probably years of pretty good life beyond what would happen without treatment. I have a friend who refused it because he was afraid of the side effects. He is still alive but at the end and is miserable. I feel tired and weak and can't sleep and don't want to do anything hardly but I can still do a lot and enjoy my family and I don't have any pain so I am glad I am taking treatment. I myself have a fast growing cancer and I am pretty sure I'd be dead by now without Lupron. Your cancer appears to be much slower growing, at least so far, so you have more options. You could wait longer. My own opinion is early treatment is better because there is less tumor to mutate into something worse. But again, a personal decision.

Steve,
Treatment following failed primary treatments is about as controversial as it gets with prostate cancer - even more controversial than RP vs RT in primary treatment. At least with RP and RT it's known that one works about as well as the other. For an increasing PSA following primary RT or RP/SRT there's no clear agreement. Used to be you did Lupron, then added second line ADT (Zytiga or Xtandi) at Castration resistance, then when that stopped working you did chemo. In recent years things have gotten sorted out a little better. The big studies have shown using Zytiga or Xtandi or chemo with Lupron from the start gives better long term results. A big question now is when to initiate treatment. Different Medical Oncologists have different views. Some start at a low PSA value, some at a PSA in the 20s. PSA doubling time, Gleason grade, visibility of mets on a scan can all figure into the decision.

I recommend you find a good Medical Oncologist experienced in PCa. I recommend against having a Urologist or Radiation Oncologist direct your treatment at this point. Their jobs are done.

Good luck!

Steve,

I was on Lupron/Eligard for one year and found it much more tolerable than the horror stories led me to expect. Hot flashes suck, and I gained some weight (not dramatically), but overall it didn’t seriously impact my QOL. True, some guys find it unbearable, but there’s no reason to go into it expecting the worst. And remember: guys are more likely to post when they’re having a rough time. You’re less likely to hear reports from those who are sailing along without severe SEs.

Now as to your question about metastasis: What happens is the prostate cancer cells travel through the bloodstream or lymphatic system, set up shop in your bones or your lungs or your liver or even your brain and start sawing away at them. That can really cramp your lifestyle and pinch your longevity, even with the wondrous treatment advances of recent years. You kinda don’t want that happening, or at least want to prevent it as long as possible.

I second mattam’s advice to consult a first-class medical oncologist who treats a lot of PCa patients, and bring your concerns and fears to his or her attention.

I have recently finished treatment for a second reoccurrence of PC. First treatment was Lupron followed by DaVinci surgery. Salvage treatment was Lupron and 33 sessions of IMRT to pelvic region with a boost to the prostate bed. PSA was <.05 October 2018 and rose to .94 in June 2019, when my urologist felt it was high enough to show it's location on a PET CT. I was sent to the Mayo Clinic for their C11 Choline scan, which found a 1.2 cm spot of cancer on the ball end of my right shoulder bone. Treatment was 10 sessions of 300 units radiation, no Lupron was included this time because the side effects for me had been a little stronger than most. I was still castrate sensitive when we stopped the second round of Lupron. The waiting for a higher PSA was hard. A PET CT would help locate where the cancer is and then you can form a treatment plan that you and your medical team are comfortable with. Dr. Kwon at Mayo in Rochester MN specializes in reoccurring PC.

Steve, I just want to enforce the advice that was suggested for you to find a great team!!! Getting yourself involved with a great team will also help relieve some of the anxiety also. Wishing the best for you and your family!

Larry

Steve,

What do your doctors say about you hip problems? Many of the side effects of ADT can be minimized by staying active and, obviously, the hip problem won't help with that but even with its side effects Lupron beats the alternatives when your MO says it's time. I'd focus more attention on rehabilitating the hip than on worrying about the ADT.