MO presented my case (details in profile) to the clinical panel (medical oncologists, urologists, radiation oncologists) in order to recommend the next course of action. He expected "debulking" recommendation would prevail. Surprisingly, the surgery option didn't receive much support. All of them agreed that at my stage and considering young age the possible side-effects and quality of life consequences outweigh unclear benefits RP may bring. The similar notion was around radiation therapy although they agreed that I may benefit more and should consider it. Again, this suggestion was not a strong one, so I have to meet with RO, discuss options and decide for myself.
Another option is include Zytiga early and see how it goes. Again, no RCT showing benefit of close sequencing docetaxel and Zytiga yet.
As of now, I'm thinking to get a 2nd opinion on other possible options but most likely will receive similar with a slight nudge depending on what type of doctor and school I will talk to.
I thought of my options (a risky one) is to continue on Lupron for 3-6 more months and see how it goes. If everything is good, then try to stop ADT and wait until PSA rases over 2.0. Then perform PSMA C11 or other sensitive PET scan to find where the cancer is hiding. And only then go after it with precision therapy, be it surgery or radiation. If ADT works long enough, I can extend it and wait until new treatments pop up on the horizon. In any case I'd like to extend hormone-sensitive phase as long as possible.
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Did they discuss HIFU? My situation is similar and I've been wondering if HIFU might be beneficial on top of the radiation (primary treatment) I did. I've been thinking about doing another psma/PET once I'm on a Lupron break. My doubling time is 3 weeks so I would probably do my scans when my psa was around 10 or so, so it is visible. When I did psma/pet before I started Lupron, they thought they might have identified two hot spots when my psa was at 38 but those were inconclusive hot spots.
I don't think HIFU was on the table. Honestly, I don't know much on it either, need to study up. Still very new to all this stuff.
Agree, it makes sense to let PSA go a bit more above the threshold to get fixes on all spots. It's a risky approach, sort of like reconnaissance in force.
You seem to have a very good MO. While your lytic bone mets were suspicious, he biopsied it and found them to be acinar PC (which is preferable), and your subsequent good response to hormone therapy and chemo confirmed it.
The recent trial of debulking with radiation showed a benefit only in men who were oligometastatic. Based on RTOG 0534, I think the benefit would have been greater had they extended the field to include all the pelvic LNs up through the common iliacs. A boost dose to the prostate may have helped as well.
You are right that the sequence of docetaxel followed by Zytiga has an unknown benefit in men who are still hormone sensitive, but I think we can surmise that since there is a clear benefit to Zytiga after docetaxel in castration-resistant men, and Zytiga works better when used earlier, that it is a good bet. Why wouldn't you try it if you can get insurance to approve it?
I agree with you that it is VERY risky to stop hormone therapy just to find some of the bigger metastases. It is a self-fulfilling prophecy: you will find them BECAUSE you have allowed your micrometastases to grow. You have to treat what you can't see. The data is very weak that metastasis-directed treatment has any benefit for prostate cancer anyway.
Yeah, that's the thing. Looks like they don't find me in the category of men who would benefit greatly. Plus QoL consideration gets in the way.
I tend to think Zytiga is the best option for me now, next to simple ADT only. I'm not sure which one is going to buy more time. If I start Zytiga, can it be stopped after? Another concern if early use of Zytiga would accelerate castrate resistance onset.
Your summary is excellent, by the way. Thank you very much for the effort to put it together in a concise and structured way.
There is no evidence that Zytiga accelerates castration resistance -- in fact, the opposite seems to be true. In STAMPEDE, men randomized to Zytiga + ADT had significantly longer failure-free survival than men who took ADT alone.
I would also like to chime in on the QOL considerations before you make your final decision. The overall QOL impact of something like potential urinary incontinence that may (or may not) be with you EACH AND EVERY DAY AND NIGHT for the indefinite future is often greatly underestimated. It's easy to just talk around it, .... actually living with it can be a whole different story.
I agree with Tall Allen 100%. I did the chemo and now on lupron and Zytega for a little over a year. The trials have shown early use of Zytega with ADT reduce deaths over 40%. That’s a Game changer. Do weight training hard 3 days a week and you should do great. I actually feel pretty darn good and I attribute it to the weight training. But get a trainer to set you up on a program.
Interesting..... I agree with Allen 95% of the time. My disagreement centers around only about the typical standard of care which tells the world that metastatic prostate cancer can not be cured. I as live and breathe, my experience through a chemotherapy and hormone inj3ct trial, shows otherwise as long as the treatment is immediate after the discovery of Stage 4; before the bastard has a chance to destroy and weaken the body. After 14 years, the last eight without any treatment, I stand to say that there is hope.
And we all want to be where you are, at least at 95% )). The task is to find experienced MO who'd be bold enough to push boundaries wisely.
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which hormone therapy?
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3 mo injections of either Lupron or Eligard. After the six months chemo added Casodex 50 mg daily. Casodex last nine months and then stopped and continued with either Lupron or Eligard. I was fortunate in that the sudden withdrawal of Casodex caused my 1.5 PSA to drop to less than 1. Happens in about 20% of cases. I hav3 been undetectable ever since and able to stop the hormone injections after six years. Good luck.
GD
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so you did not debulk in the sense of operation or radiation?
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No primary treatment in April and June of 2003 was Brachytherapy with 25 sessions of IMRT. My PSA never really fell. Ranged from 3 - 6. By February - April, PSA exploded to 32.4 and I had two mets to my spine. As my two Radiation Oncologists and Medical Oncologist explained to me, what ever primary treatment I had, it was too late. I had micro-metastatic cells traveling in my vascular and lymphatic systems at original diagnosis. Told I could remain on hormone therapy and bide my time with “silver bullets” being discovered. After a series of questions, I opt for a very aggressive six month clinical trial of chemotherapy and hormone therapy.
GD
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So maybe you would have the same result without radiation. Or do you think it contributed to the astonishing excellent results?
I just had a second opinion from MD Anderson and they think RP is not a good option for me but SBRT may. They also haven't found any circulated tumor cells and concluded that my disease under stable control. It sounded like they are talking about it in a curative manner. I guess, everything I've been doing so far yields good results.
I struggled with same decision about 4 years ago before doing enough research and talking to enough doctors when I decided to go through with it, for me it was IMRT of prostate and several nodes. So far so good. If I had to do it again I’d do it in a heartbeat, no regrets. You can check my bio to see what I’ve done since dx. Good luck.
As far as a proven theory it continues to be an area of constant debate. I can tell you it worked in my case and my personal opinion if it was offered more, more men would benefit. As far as waiting on proven it could take years. Finding a doctor that will practice unconventional therapy and push the boundaries will only help in putting the odds in your favor.
As far as radiation vs RP again a constant debate. I can tell you I spoke with a radiation oncologist from MD Anderson who is very well versed in the prostate field. I was diagnosed at 46 and she said she would not rule out surgery especially at my age. She stated radiation side effects don't normally show up immediately and being young saving another option could be useful should a re occurrence happen. Keep your age in mind. Radiation is a one and done treatment and will make any surgery afterwards very difficult. She also stated getting your PSA at the lowest level possible before any treatment will make the treatment more effective.
I listened to her and found a very skilled surgeon at The Mayo in MN who offered me an open debulking surgery with an extended lymph node dissection. His goal was to add 10 years to my life. I had extensive node disease in pelvis and abdomen and it was discovered early chemo had wiped out all of it except one node and the prostate. I am also an advocate of early chemo because it will get to places other treatments simply cannot. In my case it worked. The surgery over all came out better than anyone could've imagined and I have carried a <0.01 PSA since with clean scans. I started with Gleason 9 and PSA of 286. All treatments done within 10 months. Hit it hard while cancer is weak and your healthy enough to handle it.
The key to a successful surgery is having a seasoned surgeon do it. I have no side effects other than ED. Unfortunately most treatment options cannot save you from that with this disease. Your 48 not 68 so keep that in mind as far as treatment and your first shot at this needs to be your best one. Feel free to read my profile to see my treatment history.
My husband's diagnosis was very similar to yours- and he was 49. He had ADT plus Docetaxel and now is doing ADT, prednisone, Zytiga. (Diagnised 8/2017) His PSA started around 700 and has gotten only as low as 10.7 so far. On Zytiga since April 2018. Our Oncology team is not recommending debunking as of yet. We will get first scans since Zytiga early 2019.
Will be interested in seeing what a 2nd opinion may say if you get one.
Thanks so much, folks! A lot of experience and good food for thought here. I'm going to sleep on it. Then probably get a 2nd opinion and come back to think again. Maybe go back to Seattle Cancer Care, talk to Heather Chung or someone else there. I'd like to find MOs perhaps with less orthodox approach to get a new perspective. Don't know where yet, will see. Meanwhile I just got my next 6 mos Lupron shot as was overdue.
Just had a talk with my Urologist, (oncology surgeon) and he thinks that my next best option is RP before any RT. He was the only on the panel voting for this option and he is very convinced it's would be the best move. He says even though it may not extend survival, it can eliminate a potential problem should the tumor starts to grow back in prostate. And then surgery will be more problematic and with more side effects. No surprise here. Next meeting is with some young bright RO (wanna bet what he'll recommend? ;))
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