My status(RP 6 years ago), SRT(2 years ago), G 7(3+4), no Mets yet
OPTION 1
find where the Mets are, treat with targeted therapy to delay the start of ADT
OPTION 2
while trying to manage option 1, there will be other Mets that are not shown yet on imaging scans, so why the wait, start ADT immediately to lessen the burden of the disease
I am very torn between the 2 options and am afraid of making the wrong decision
Last 3 psa readings( .36,.34,.44) these numbers were from 8/1 to 12/1 this year 4 months period
Any advice would be appreciated
Thanks
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StayingOptimistic
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I agree with your logic on Option 2 because it enables you to do both targeted therapy to get the mets you CAN see and systemic therapy to get the mets you can't see. The mets you can't see are far more numerous, and reducing their number may be a benefit. Remember that systemic therapies used earlier add far more to survival than if used later. On the other hand, I fully understand wanting to put off ADT as long as possible. The TOAD study (with short f/u) suggests that reducing the metastatic burden may have a greater effect than any addition to the selective pressure. In the TOAD trial there was no eventual difference in quality of life among those who started immediately vs those that delayed.
Thanks, Allen. I appreciate your insights and the links. The problem I am having is that if I start ADT now, I won’t be qualified to get into the clinical trial in Maryland for the pet scan, any thoughts on that ?
Have you applied? I heard NIH has a waiting list of about 3 months and they are no longer accepting applicants with a PSA below 0.5. Johns Hopkins will be starting a new trial of DCFPyL in recurrent men pretty soon. You should be able to get an Axumin scan almost anywhere now.
Yes, I have applied in August. They put me on the waiting list and said they might take me in January or February and you are correct, it started with psa .2 and now they raised it to .5
My MO in MSK ordered a psma scan when I asked for it but it’s not covered. I have good insurance and on Medicare now but I didn’t pursue it further since my psa was .34 so I figured I would wait. Now, it’s .44 and REALLY not sure where to start now. You think I should I start with the axumin scan now? The whole thing is so frustrating. Thanks
Allen, based on your writings, it only has 12.5% of finding anything at my my psa .44. You think it will be just a waste of time and distraction from trying to concentrate on other avenues?
If it were me, that's how I think I would feel, especially since I find the evidence for metastasis-directed therapy underwhelming so far. But you have to do what gives you the most comfort. You are trying to balance competing risks when there is no way of objectively quantifying what those risks are. Decision-making under uncertainty sucks.
I think you are correct about the Mets directed therapy since my MO at MSK feels the same way, he didn’t come out and said it bluntly like you did but he gave me the impression of that :-). He said I should think about starting ADT and as he put it “the cure window had been closed”. I am not even looking for a cure just to delay the adt so the resistance does not set in earlier
Allen, sorry to bother you again with this but what do you think about the immunotherapy vaccines? Clinical trials may be? Tango65 below had very good success with it and it stabilized his psa for 6 years he said
I'm still holding out hope that it may prove effective in a combination with docetaxel or a checkpoint inhibitor, or at an earlier stage. Are you considering the following at MSK when your PSA>0.8?
Thank you, Allen. Yes EXACTLY, the one at MSK at .8 but the thing is can I wait for my psa to reach there and NOT start adt and still be on the safe side untill I get into it? I know you can’t answer the safe side thing but just your thoughts are very valuable
No, my MO didn’t recommend anything except starting ADT. he didn’t even bring up scans or anything Just said I am concerned that your PSADT is 5.5 months( that was 4 months ago, anyways) and you should start ADT. THAT IS IT. And now I am seeing him soon, should I bring the vaccines to him? Should I tell him about the clinical trials or just go with the flow with him and do the ADT and forget about anything else?
Perhaps this article about PSMA identified metastases treated with SBRT or SABR in oligometastastatic hormone sensitive patients will help you to make a decision. Practically all patients had a decrease of the PSA and about 50% mantained the PSA decrease by 90 weeks.(more than 1 and half year) if I understood the graph correctly.
With a PSA of 0.1 the PET with Axumin found three distinct areas of metastasis that helped me and my oncologist determine the next course of action post-chemotherapy. Don't be dissuaded from getting the scans you need because someone says that your PSA is "too low." The question for you and your care team is: "will this scan help determine a game plan for me?" In my case, absolutely!
ahk1 please explain to me i guy has a psa of .2 and he's worried about it reaching .5.does anyone know a normal guy's psa is good or as they say i'st normal if he reaches 4.0 why do so many of these guys worry so much about nothing. also why are doctors even considering treating anyone when its below the normal range of guys who don't have cancer explain to me the reasoning behind this.
With a PSA of 0.4 the only tests that could locate the metastases (if there is any >/= 4 mm) are the Ga 68 PSMA and 18F DCFPyl PET/CT. What is the minimal PSA to enter the trial?
It seems to me that your PSA is changing slowly. IMHO you shoud wait to see if the PET/CT finds any metastases. If there are metastases may be they could be treated with SBRT or you could get Lu 177 PSMA treatment in Europe or Australia. If there were a large number of metastases (no local treatment possible) you could try to get Lu177PSMA treatment and then see what happens with the PSA. Once you start ADT you start the way to castration resistant cancer, besides the negative side effects of ADT.
You could also look into immunotherapy now. The vaccine Prostvac functions in hormone sensitive cancer. I had the vacine when I was in a similar situation and my PSA remained between 0.3-04 for 6 years.
they ought to raise it to 5 or 6.0. some drugs arfe not as available and there alot more men out there that need the treatment now where u guys could wait.
What is your PSADT? You are not going the route of targeted SBRT? I understand you have no Mets and if your PSADT is good then may be you can delay the start of ADT or do vaccines may be?
Mine is exactly the same. So, was it your decision to start adt in January or the MO insisting on it?the doctor didn’t offer you any other options to treat?
I had to wait until my PSA was 0.4. I started the trial in 2007 with a PSA of 0.46 that they rounded to 0.5. The trial was at the Beth Israel Deaconess in Boston. My PSA remained stable for 6 years. The idea is to delay as much as possible the way to castratiom resistant cancer, the letal stage of PC.
The strange thing is my MO is a very well known MO at MSK. He told me 3 months ago when my psa was at .36 that he is concern becuse of PSADT was 5.5 and I should start ADT. he never brought up a clinical trials or pet scans or anything. He only ordered an MRI. now, I am going to see him in a few days and I am sure he is not going to bring any of these approaches up and will say let’s start ADT. so I am not sure what to do, should I bring to him other options like vaccines, clinical trials or just go with the flow with him since he is well respected outthere ?
before treatment on myself they (doc) saw my psa was 5.7. then we did a biopsy, no mets were found so the gave me a lupron shot when my psa went to 8. after that then radiation but still no mets in my body.i lept record for about 10 years no bone scan no pet scan and now they found some mets small in my lymph nodes in groin rib and aorta arch. then they order PROVENGE. since oncologist where i live and this is through a organization i don't feel to confident but we don't have a lot of options in Spokane WA or they just dropped the ball.
I live in Spokane and would recommend Dr. Lance at spokane urology. He has a national reputation. I had radiation and lupron in 2011. Gleason 8. I didn't continue with Lupron after radiation because of a lung problem which is another long story but now resolved. I moved to spokane in 2017 and my psa was 4.26, doubling time about 9 months. I went on eligard in June 2017. They did a 2-Dmri and found a small spot that was positive. Dr. Lance used cryotherapy to treat in October 2017. My PSA dropped to essentially zero in July 2018. I celebrated! In October my PSA was 6.7! Yikes. Had a full body bone scan which was negative. Had another 2-D mri and found a likely positive Lymph node (he can't biopsy because of the location near major arteries and bones). Dr. Lance believes I am castration resistant. I start eligard (again) and zytiga next Monday. The moral of the story is PCA is largely unpredictable. Each patient has little different course. High risk patients should be aggressive in treatment. Medium and low risk patients can afford to take their time
My cancer is becoming castration resistant. My PSA is 0.15 and it is increasing with a testosterone at castration level. My plan approved by an important MO at the Sloan Kettering (I saw him yesterday) is to wait for a PSA around 0.4 and have Ga68 PSMA PET/CT, if there are metastases they will try to treat them with radiation,. If not possible I would try to get Lu 177 treatment in Germany and see what happens with the PSA after the treatments. Meanwhile I would try to get treatment with Provenge.
You should consider to discuss the PET scans, clinical trials, immunotherapy etc. and see what your MO have to say. Perhaps you should look for immunotherapy, and vaccines in clinicaltrials.gov and see ifi you could qualify for a CTrial.
Your are getting confusing information about Prostvac. The vaccine failed in castration resistant prostate cancer but there are data showing that it could be effective in hormone sensitive PC.
When I was diagnosed 15 years ago I was fortunate enough to have a urologist who wasn't afraid of taking a position on treatment. I think it's unfortunate that many urologists and oncologists still offer patients treatment options as if patients have the medical knowledge to objectively determine what's best. Yes, give us options, but don't be afraid of saying, "yes you have two choices, but if I was in your place, here's what I would do..."
I agree 100%. The ONLY reason one is given "options" is that the quacks are scared to take a call and are pushing the ball in your court for you to decide, so that they are off the hook. Sad lot of cowards, most of them.
I think you are making this hard on yourself. Your numbers are far too low for any scan to show much of anything, so don’t waste your money, and it doesn’t sound like your oncologist is asking for a scan. Either trust your oncologist and start the ADT or find one you trust and do what they say. We are not oncologist on this site, but we have first hand experience for advice. End of day its your decision. Almost everyone of this site would have been put on ADT by their onc. It works, it sucks, but it works.
I was in a similar situation a few months ago: start ADT or hunt for the mets. The G68 PSMA PET can find disease at pretty low levels: sciencedirect.com/science/a...
If you are willing to fly to Australia (I did) the test is cheap and the queue is short. See bottom of this thread for PET PSMA sites:
Thank you ALL, I truly appreciate your thoughtful comments. I have been having 2 horrible days and nights thinking about it but when I relaxed a bit, I realized that I have learned from here and from reading (please correct me if I am wrong please) that MOST MO will start ADT in 3 conditions:
1) DT less than 6 months
2) PSA above 5.0
3) Mets
so my feelings are: my DT is about 8 months, psa .44 and have not done the scans yet to find Mets , so doing the scans should be my first priority and I should breath calmly and take it from there. If scan founds Mets then should treat it with radiation and start ADT immediately, if not then I should continue monitoring psa and do frequent scans till one of the 3 conditions exist before jumping on ADT
Radiation (2011), cryotherapy 2017, gleason 8, one positive lymph node, PSA 6.7 I am somewhat same position. Recently had negative bone scan and 2D mri of prostate area (where the positive lymph node turned up). Also CT of pelvic area and abdomen which was negative. I am starting Eligard and Zitiga next week. I feel it is likely there are more positive nodes and even bone mets. But they are too small to show up on scans. I was told by an oncolgist that scans won't pick up mets or positives unless the PSA is at least 5 to 10. I would suggest that you start ADT now and continue until your PSA rises much higher. Theoretically any cancer in your body will be immobilized until the ADT has stopped working. I believe being aggressive is the best approach.
Unfortunately, I don’t agree with your MO. scans can pick up Mets a very low psa values as low as .2. That was the old bone scan approach but nowadays there are very new scans that can pick up cancers early on. Please check it out. this is not my opnions, it’s what the researchers said. I am not a doctor, I am just a pc patient. Read this thread to see what others said
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