This site has been very helpful. Thanks very much to all. I appear to be dealing with an oligometastatic recurrence post RP( 2011) and post SRT (2014). My current PSA is .54. I am 65 years old and otherwise in good health. A recent PSMA found what is suspected to be a met at C6- " Tiny intensely PSMA avid lesion within left aspect of C6, suspicious for solitary osseous metastasis.". A follow up MRI was inconclusive. A thin slice MRI also inconclusive- small sclerotic focus could be met or ddd. Radiologist recommended further MRI to see if it changes. Further thin slice scheduled for 3 months after first thin slice MRI.
Two questions:
1. Have others experienced this lack of clarity following a PSMA and any suggestions as to how to proceed. Reluctant to start treatment until confirmed.
2. If we assume this is a met, my rad onc seems to think SBRT is of only short term benefit and seems to think I should delay the inception of systemic treatment until my PSA gets higher.
He says that finding a met this early means we have time to wait and that many of the studies have not considered men with a met found this early. Based on what I have read, SBRT has value, albeit with some risks when it is a spine, and I should not delay ADT and the only issue is whether I do intermittent or continuous ADT.
Having said that, given the quality of life issues involved with ADT and the potential for becoming resistant, does it make sense to wait a bit.
Any input is welcomed. Perhaps there are other guys out there who also found recurrent mets very early. Thanks again guys and my best to you all.
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FrankyB4
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Hi Franky, I’m in a similar position of BCR after primary RP and adjuvant RT. My PSA hasn’t been too high yet so I am looking for clarity on similar questions - when to get PSMA PET and what to do if something is identified, and when to think about restarting ADT with any add ons (Zytiga?). I haven’t reached any conclusions yet.
I understand that a recent STAMPEDE study highlighted benefits of early ADT, but I’m not certain how it applies to those who have already completed a round of ADT.
Thanks very much for responding. I have read many of your replies to others and your articles. I value your input. The SUV max was 10.7. Radiologist also added: " No PSMA -avid subcutaneous nodule." Not sure if that is significant. One last question. Assuming it is confirmed to be a met, assuming my doubling time remains in the 16 to 18 month range, is there any consensus as to when to begin ADT. Is a psa number the trigger or the appearance of further mets, or the growth of this met or symptoms or any or all of the above. Thanks again Tall_Allen. Appreciated.
Beginning ADT is a good idea after a met is discovered on a bone scan/CT or if PSADT is rapid (<6 months) or if PSA is high (say, over 4). If detected on a PET/CT-only there is no known benefit of early ADT, as I said above. That doesn't mean it has no benefit, just that there is no info on which to base a decision.
I recently had exact same circumstance on L5. They read the PSMA scan and said “highly suspicious for a met. My Radioligist at ucla (Dr Kishan) showed it to a back specialist at ucla who said he didn’t think it was a normal spot. They then thought it was highly like to be a met and wanted to shoot it with SBRT. My MO suggested an MRI to try and get confirmation. After reviewing the MRI They we’re pretty sure (but not positive ) it was a met. They didn’t the SBRT and it was a piece of cake. I suggest you get a Second opinion on the reading and maybe an MRI. You might also want a consult with Kishan at UCLA. I know Tall Allen thinks the world of him as do I.
Thanks very much. That is helpful. I am going for a second thin slice mri in mid November.
I thought the whole idea of getting a PET scan was to get a jump on the disease and radiate it and take ADT for 18 months or so. Possibly curing it. What am I missing.
That’s exactly what I thought. But I am not sure it can be cured, there is risk with SBRT to the spine, the benefits, according to some, are not yet proven and the systemic treatment may be better used later given it may have a two year benefit. But I have seen lots of references to zapping and 8 months of adt. So I am struggling with how to proceed. Doing nothing is difficult. Thanks for your reply.
I don't know. Maybe you should get an appointment with Kwon and see what he thinks. But I do think the 10 SUVmax is pretty high. PLus a Choline scan would give you a comparision
Please let us know what you find out. Remember to take a picture of the screen where he shows you what the Choline scan shows. Even though they give you the images in your patient portal, they are really hard to scan though. Have your questions ready too because he won't be with you long.
Thanks for the advice and the heads up on being ready. My first visit is by telephone but I have sent my previous psma scan and mri . I expect we will be scheduling a time for me to receive sbrt although further scans may be needed. Thanks again.
Just an update. Dr Kwon had Mayo radiologists read my thin slice MRI and PSMA. No met seen on the MRI. PSMA remained suspicious for met. What was there was atypical for degenerative disease. Then met by phone with Dr. Kwon- he was wonderful. He said he was 80% sure it was a met and felt I had a better than 50% chance of a durable benefit from pursuing SBRT alone. Received a note from a RO at Mayo endorsing the idea it could be a met and the pursuit of SBRT alone now. Armed with that, I convinced my RO in Canada to refer me to the top brain/spine SBRT doctor at my hospital for SBRT. He endorsed the idea in 5 minutes and I had two zaps this week. He said they had very good results with local control two years out.The scans taken In November during the simulation for the SBRT had seen some change in the C6 lesion since August suggesting it was, in fact, a met. PSA in 6 weeks and then PSA, MRI and possibly another PSMA at 3 months. I have to treat the cancer and not the PSA going forward. PSMAs are limited in Canada right now so I may have to go to Rochester. I cannot say enough good things about Dr. Kwon and Dr. Stish of the Mayo. And the Canadian brain/spine specialist is world class. Dr. Stish endorsed him as well. I am humbled by their talent and generosity. I am now pursuing a bone strengthening and protection regimen as suggested by MateoBeach. As Dr Kwon and others have said, you really need to take control of your own medical circumstance. This site and the people on it certainly contribute to that.
Very glad you were able to get that appointment and advice. I really like working within the Mayo system but its like any other, you have to bring things to their attention and hope the right person sees it. So he is recommending just radiation, no ADT? and if no ADT, what is the rationale there, the low PSA? do they suspect it might be a low PSA variant?
Thank you. Yes, both here and at the Mayo, they think SBRT alone is a reasonable way to go initially given my lesion was discovered early ( .54 psa and lesion found described as tiny) by virtue of PSMA. Dr Kwon was more optimistic as to the possible upside but even here they thought there was a good chance of buying time to start ADT. I wouldn't have started ADT yet even if I had not gone for SBRT. But we are going to keep a close eye on things. I am considering a course of early chemo and ADT next, if more lesions appear that can't be radiated, while I am still strong as opposed to later, when I will be less able to cope. Zapped Monday and Tuesday and played golf on Wednesday. Thanks for your help. I am not perfectly comfortable in the area so I benefit from the insight of others.
Is there any possible reason the avidity might be something else? I know it’s unreasonable to cling to hope but that is a very low PSA for a PSMA avid lesion
I looked closely at that. I wanted it to be something else. My PSMA was the F type which is more sensitive than some of the others. Avidity can be caused by some benign conditions. Rib fractures often appear as avid. DDD could possibly. Mayo said it was atypical for DDD. Recent imaging suggested growth which suggests a met. Horse is out of the barn now in that the area has been zapped. Everyone I spoke to thought it was most likely a met, including the tumor board here. I guess if my psa remains at .54 or goes higher in 6 weeks, that might suggest it was not a met and the problem is elsewhere or that the SBRT of the met failed. The SUV max was pretty avid too. Fingers crossed it was there and we got it. Then I watch for other lesions.
I was lit up like a Christmas tree with Mets from tibia to scapula but none as infected as my spine between my shoulder blades. My Canadian oncologist sent my MRI to the surgeon to see if I needed structural repair.
I was finally treated in Bangkok Thailand with 3 rounds of Lute-177 . My PSA went from 998 to 0.09 over 4 months and my last PSMA pet scan a year later showed my spine was completely restored. I'm 74 and I'm playing in the goal again with the our local "Oldtimers hockey team".
If the C6 lesión was found because it is PSMA avid (SUV max above reference threshold) then it is a met. MRI not withstanding. And if you have one bony met then you have many unseen (micro). Sorry. Treating that lesion can probably wait as it sounds like it is not yet a threat to bone integrity or spine. But may be good to use SBRT on it at some point if only for local benefits.
In the meantime you should start a bone protective regimen to prevent future skeletal related events. Future pathological fractures and bone pain as this will progress. It does not matter if you have osteopenia at this time or not IMO. That is not what you are treating, it is MCSPC to bone. ADT will only make this more difficult so better to get out ahead of it. ( Again just my opinion).
As for starting ADT now vs waiting. It is well established now that ADT plus an advanced AR drug, probably abiraterone, is strongly beneficial for survival. You may want to benefit from that and consider intermittent ADT going forward. And yes, waiting a bit before starting is not unreasonable.
You will likely spend most of your time in the first meeting with his PA or nurse to get and review info from you.
I'm guessing you'll have a blood test or tests in the adjacent building hours before your meeting, I have always had them.
He will come in after after discussing your case with the PA. He may bring another doctor or not. My typical meetings actually with him are quick. I would say 15 mins or so. You can bring a person with you or have them on the other end of a phone call during the meeting. If you have tests or scans after seeing him you'll likely have a follow-up with him the day after the scan(s).
But if you have prior scans bring them and have them downloaded by the women at the desk in the urology waiting area or have that done days before for review.
I'm sure Mayo will have requested all your medical info from your provider(s) beforehand.
Parking is easy by the hospital and inexpensive. There are parking garages but I've always found street parking easy a block or two away. The meters use a parking app on your phone and you can easily add time to the meter through the app.
Rochester is a small very comfortable city, easy to be in, and to get around in.
It's about 90 mins driving time from MSP airport. After the first 10 miles or so it mostly rural scenery on the drive down.
It also has it's own airport. I tried it once but the connections and limited flights didn't work well for me.
The Mayo buildings are connected by underground walkways.
Thanks very much. My first visit is a telephone visit. I have sent my scans and medical records in advance and completed health questionnaires. I am hoping to schedule a week for all that is needed including sbrt. Thanks again for your very helpful advice. Dr Kwon has been very responsive.
Hello FrankyB4...... I can't wait till you're FrankyFR, now for the routine...
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Thanks John. I have, in fact, put most of what you are looking for in my profile. Some information, such as treatment centre and doctor has not been included to maintain my and their privacy. I believe I have included all salient info. Thanks again. Take care.
Thank you for your quick response....We surely understand the privacy issue concerning your medical team. It's just that sometimes other members are using that same team and may want to share info privately. Anyway keep strong and fight those little buggers........
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