I met with my oncologists yesterday to plan for the next few months. I'm looking for opinions to help make a decision. I'm 55 years old. Gleason 9. Initial PSA 103. About 10 to 12 lesions in lymph nodes, spine, and ribs. I have been on ADT injections for 6 months. I did six rounds of chemo which finished a month ago.
Recent scans show that the lesions and prostate have shrunk although it looks like there is one new lesion in the lower spine. PSA has hovered around 0.3. Doctors think it may have hit its nadir.
I have to decide whether to undergo external beam radiation. There have been two recent studies published that divided patients into two groups: men with more than 4 lesions and men with less. Both studies concluded that radiation does extend life for men with less but makes no difference for men with more. The "more than 4" group was not subdivided. I have to decide whether to undergo radiation given the risk of collateral damage.
I'm healthy, feeling good, and handled the chemo well. I have no pain. I get up 4 or 5 times nightly to pee and I wear a pad when I'm away from home for ocassional leaks. It doesn't bother me too much but radiation may help with that.
I don't have to do radiation right away but the radiation oncologist said it is likely to have a greater impact if it is done while I remain castrate sensitive. Neither the radiation nor medical oncologist has a strong opinion one way or the other. Any thoughts?
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MarkBC
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Part of me is thinking that the number of metastases is on a continuum. Am I closer to the low load group or high load group? If it is the former, perhaps I will benefit. Are there potential quality of life improvements that outweigh the risks of radiation? Radiation may not extend overall life but will it extend the time that I am pain free?
Thanks for clarifying that. 12 lesions puts you squarely within the high load group. What the studies showed was that at some point, metastases are no longer spread primarily from the prostate, so prostate treatment is ineffective. I agree that the delineation was arbitrary when it was first used for CHAARTED - any visceral mets or at least 4 with one outside the pelvic area. But it is the only info we have on which to make judgments.
As for QOL- if you already have some leakage, you are at high risk for incontinence and retention with prostate radiation. Count on radiation to make existing problems worse, not better. The fact that chemo and ADT work so well for you may mean that your prostate is shrinking from those therapies and is apt to give you less problems in the future. Pain is usually from bone mets. You can have SBRT to bone mets if you feel pain.
Hi Tall_Allen. One more question for you. I've been on ADT for 7 months and will continue indefinitely. Chemo finished a month ago. PSA stable at 0.3. Is it likely that the prostate and mets will continue to shrink over the next few months or just stay the same?
Hi Mark, I was Gleason 9 bone and lymph Mets. Are your ADT injections Lupron? What chemo did you do? Taxotere didn’t work for me. Jevtana was better and when Caroplatin was added it had amazing results. I had spine and ribs Mets. They zapped them with cryoablasion, Mayo Dr Morris, and then started Xtandi.
2 years later nothing lighting up on C-11 choline scan and undetectable PSA.
Dr Kwon told me to save radiation as a last resort because you can only do it once.
Im 57 and in the middle of surgery recovery. My biopsy showed Gleason 9 , 4+5 in 6 samples and 4+4 in the other 5. One didn't survive testing.
I had to make a difficult decision on surgery vs radiation for the initial treatment. I was leaning toward radiation and not the RP. A 3T MRI that cost thousands showed no cancer! So much for some of these test. Then I had a standard whole body bone scan which showed clear and a lower CT that showed 1 questionable lymph node. I was told that if I chose radiation I will most likely become inoperable because the radiation melts and makes the prostate very sticky and becomes almost impossible to remove. And that radiation alone would not work and I would have to do Lupron injections too. If I had a reoccurrence in the prostate it can only be radiated to a certain point and I would be stuck with it inside of me on fire. I thought through all of it and decided on the RP. My urologist put me in touch with the director of robotic surgery at Mount Sinai Miami beach. He said I have a very aggressive type of prostate cancer. He told me my prostate was also attached to my large intestine and that I may need gastrointestinal surgery as well. He was able to remove the prostate with with minimal damage and I didn't need any gastrointestinal surgery, thank God. I had the RP on October 5th 2018 and I'm healing very well. My continence is back and I make it through the night without getting up to pee. I do have positive margins and the fight is long from over, just getting started. Overall I know removing it was the right decision. The post OP pathology report wasn'tvery good. Positive margins on both ends of the prostate to the cut line, 4 lymph nodes with cancer. My prostate was 95 % tumor. That was not detected in any of the test. It was an instinctual decision that I made to have it cut it out of me. I talked to 2 radiation oncologist, the first just wanted to start nuking me at 6 week post OP and the other who is now my doctor said I may not benefit from radiation in the long term due to the aggressiveness of this cancer and stacking drug treatments maybe a better option. He said the cancer will become resistant to the drugs eventually and stacking them with new drug treatments my offset the resistance and recurrences. He's has an awesome background, Harvard medical. He said if I chose radiation on the known areas and hitting the pelvic area he would do the work up or work with anyone I ask him to. I'm going to MD Anderson at the end of the month for a complete evaluation and comprehensive treatment plan. I want MD to do the mapping of the margins and pelvic area. My oncologist here said he would work with MD Anderson and follow their treatment plan if I chose to go that way. At the end of the day I'm glad i did the RP. I hope this helps you some. Write me any time.
Thank you for your story. My doctors have said surgery is not worth it. After lots of reading and reflecting, I'm leaning towards not doing radiation at this time.
As Tall Allen says, why consider RT because there are so many mets?
Ah, but there is now targeted RT with Lu177, aka theranostic treatment which uses a tiny amount of radioactive rare earth element Lutetium that is delivered to all sites where Pca exists. The half life is only days, and its Beta radiation that travels only 2mm so surrounding healthy tissues are not affected. The Germans invented the idea, and I'd be trying it, and there's a lot about it online.
I am having Lu177 now, had 2nd infusion on 4 Jan this year, low side effects, maybe best thing I could do after many years of ADT that only suppresses, but does not kill Pca. Then chemo failed, so Lu177 was only thing left, and I am getting it in Sydney Australia, from Theranostics Australia which you can Google. My Psa was only 25 before starting Lu177. But mets were beginning to cause pains.
I was Gleason 9 at 62yo in 2009, inoperable, Pca well outside capsule, probably many mets at diagnosis but no scans at that time could see any, and mets showed only after 2016 with PsMa gallium68 scan. Between 2010 and 2018, Psa bounced up and down between 0.08 and 8.0 and apart from complete extermination of my sexual function, life was good.
QOL is continuing at 71, and I am still able to take steps to stop Pca killing me so soon.
Hi Mark, have you considered RP for debulking? Also are you planning on doing any gene mapping ? It might help in your decision. I have similar staging and elected to do RP with lymph removal due to fact I have a DNA repair gene defect germline.
I have a friend who had negligible response to RP, RT, ADT and 10 chemos.
He had DNA sampled, and docs recommended PARP and maybe chemo used for Bca or Oa but his Psa went from 40 to 450 in very short time proving docs were completely wrong. A met grew in hip so fast, and crippled him, So he had IMRT that seems to have worked, and had 2 weeks in hospital to deal with bowel blockage caused by a met, numerous other mets have popped up and now he should be getting Lu177 soon in a trial of it and some other chemical in Sydney St Vincents. He's up that bad creek in a barbwire canoe, with broken paddle, yet it is possible he gets through this because his mets are most likely very PsMa avid, so Lu177 should work fast. He's not yet 60, has two good kids, lovely wife, and he's a the sort a bloke who just does not deserve to be taken, so he is fighting on, docs can only do their best, so we'll see what happens. There was a delay period time to get the analysis done, his bio samples were flown to somewhere in Europe and that delay allowed a lot of shit to happen. So all these fancy ideas can be good ideas but the Pca can march on during delays so fast its terrifying. I thought of going that path too, but my original tumour is maybe 14 years old, and the number of mutations would be high now, and I have no idea how many varieties of Psa I now have. So I just opted for Lu177 without a month of delay, and I hope much Pca is going to perish to give me a reprieve from the Pca progress. Pca is usually a slow grower at first, but some of it at least learns to grow much faster.
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