so my husband had CT scan and Bone scan at UCSF November & December. All clear. First Lupron injection Jan 11, and started Abiraterone Mar 9th. Plan is for Brachytherapy at UCSF then 25 External beam. Had a PSMA scan Monday with a PSA 0.8
Radiation Oncologist had this to say:
I am out on vacation but I have looked at the report. It appears that there are a few lymph nodes involved with the cancer in the upper pelvis that we did not see before on the CT scans (this is the benefit of the PET you received). There is also one area on the bone that is suspicious. I still want to review the scan with the radiologist to see what is the level of suspicion in that area.
Overall, we probably will still do radiation to the prostate. But the decision on whether the bone area is cancer or not is very important going forward in the treatment plan.
I have forwarded the results to Dr Ghiam and will discuss with Dr Borno and will let you know the decision by next week.
End of quote... so I am not sure why they would even consider not doing radiation...sounds like oligometastatic to me. any thoughts? my mind is racing. I'm trying to stay steady and not worry my husband. And it seems like thousands of men are being treated successfully without the PSMA scan. And if the other scans aren't accurate, aren't they useless and give false hope? We thought his advanced cancer was confined to the pelvic region after the "insurance approved" scans were clear. Insurance companies are killing people if the CT & Bone scans aren't accurate and they deny PSMA scans as they initially did with my husband until Medicare became primary this year. so frustrating and scared
Thank you
Written by
JWPMP
To view profiles and participate in discussions please or .
PSMA PET/CTs are a game-changer, no doubt. But they were probably planning on hitting the entire pelvic LN area with external beam anyway. They can probably zap the single bone met at the same time if it is safe to do so. But if there is a bone met, you may want to consider whole-pelvic SBRT instead (with Alexander Gottschalk) of brachy boost to cut down on the risk of urinary retention.
Tall_Allen, I am facing SBRT as well at UCLA. Do you think I should press for ViewRay's MRIdian guided approach when getting SBRT. There are three rad oncs who use It, I understand. Thanks for whatever thoughts you have.
Use Amar Kishan. He is running a randomized clinical trial of MRIdian vs VMAT. He doesn't know if one is better than the other and would like to find out. The main advantage so far is that there is no procedure to insert fiducials, but fiducial placement was really no big deal for me.
We traveled last November so my husband could receive MRIdian radiation in NY. He was pleased with the minimal number of treatments, no fiduciaries. They did Spaceoar there too. Mri guided radiation had logical appeal to him, as a former health physicist.
Thank you Tall Allen, appreciate your insight. The original plan was 45 External beam treatments. But Jim has a metal hip implant and a metal plate and screws in his pelvis due to a horse accident 16 years ago. So they said that Jim's RT was going to be complicated, and decided to go with the seeds and 25 External beam.
The suspicious bone spot is adjacent to the hardware in Jim's hip so I don't know if that is an issue. I just know I don't want them to give up and go straight to chemo for such a small amount of metastases. He also has seminal Vesicle Invasion. And it was abutting his rectal wall. So trying to stay calm until we talk next week. If you have any thoughts on this type of case I'd be grateful to hear more.
It may be an imaging artifact or it may be a bone met - that will have to look at it closely. If it is a metastasis, it is not curable with known medical science. No one is giving up - just the therapies used may be different. The goal shifts from curing to long-term management. If there is a bone met, it may no longer make sense to risk long-term urinary injury with brachy boost therapy. SBRT may be sufficient and have fewer side effects (and may, in fact, be just as good - we just don't have the data yet).
Wow, that's interesting, thank you. I had no idea about any of that.
I did read that oligometastatic prostate cancer "may" still be curable, but maybe that doesn't include a bone met. We're so very new to this and overwhelmed by the constantly shifting target, which we are starting learn seems to be the nature of this disease. Appreciate your input. I've heard you mentioned on another forum and you are held in high esteem.
I don't think there are many oncologists who think a man with bone mets is curable with metastasis-directed therapy (MDT). The controversy is whether it delays progression at all. No one really knows. There is just no data either way yet. In a couple of years we will have the first data. Meanwhile, why not zap them if it is safe to do so?
A recent study at Mayo suggested there was no benefit in men with bone metastases , but it wasn't a randomized clinical trial:
Spoke with our RO at UCSF today and his thoughts are exactly in line of what you posted! The only caveat again, is if the SBRT is workable with all the metal in Jim's pelvic region. And they are still considering radiation to the prostate itself. He is presenting to the board so we'll know more next week.Thank you again!
While it brought seemingly bad news better scan=more appropriate and informed treatment. There are many, past and present, who would love to have the information you now possess.
What you have experienced -- that the newer, more refined scans can show evidence of cancer that is not picked up or well-deliniated by a basic bone scan -- is why some docs have long suggested systemic treatment should be the default approach.
So in some sense, PSMA simply confirms what these docs already know: PC tends to seed itself in the bone very early in the course of the disease, and just because the disease is too microscopic to detect in the bone does not mean it isn't there.
Yes, it is scary to have it confirmed. But your husband is already receiving the appropriate hormonal therapy, which is systemic in nature. Try not to let the scan results convince you that his outlook has suddenly become grim, because it hasn't. PC is an intrinsically metastatic disease and many men can and do survive decades, literally, while having bone mets.
The more refined scans are just a tool that will help docs give more refined treatments, as needed going forward... they are not a reason to be any less optimistic that those treatments will be successful!
Wow! It's like you read my mind, thank you. We suddenly felt like we took a giant step backwards. Really appreciate the information and encouragement.
...and for whats its worth (I am not a dr, nor do I even pretend to know how they make decisions) but I think the treatment plan would have started the same if you had this info earlier. adt, some sort of radiation, etc..... but now that you have this information, they will direct the beam further afield and they may change the duration of the hormone treatments. If you did not have this information they would have missed an opportunity to zap the critters.
thank you...its very good to have things in perspective. I struggle mightily with that.
Had a similar experience with mayo’s choline 11 in Minnesota. Indeterminant spot on scapula. Low uptake in some pelvic nodes. RO in FL said he just didn’t think the scapula hit was accurate. “ would be bizarre “ he said. Doing the 44 rounds of pelvic and prostate. Your Dr. Jumped the gun i think. He’s being honest but could have toned it down somewhat . I might add five months earlier had a psma with no spot
Thank you for sharing that experience!I like our RO but he does tend to "panic" so to speak. In February he scared us to death with his worry over all the metal in Jim's pelvic area...we understand it's a serious complication but it has to be manageable. Thankfully Dr Mack Roach was on the board that discussed Jim's case and had input into the RT plan. But we were thinking Jim wasn't going to be able to have RT. The local RO that will do External beam is also a little bit that way. He told Jim that Jim is so healthy he will eventually die of the cancer as some people die of heart disease and diabetes.
Although probably true, don't know why you would tell someone that upfront instead of a little farther down the road. Dr Hala Borno MO told that Jim he had a 65% chance of cure (prior to PSMA scan) and they were doing curative treatment, but it could end up being a chronic condition (that is totally understandable).
Anyway, thank you for letting me vent and for your input
I appreciate your sadness and frustration. Insurance companies MAY be killing us, but it is not accurate to say that the scans are not accurate. They are limited, yes, but there is no perfect/one-size-fits-all test. He is the beneficiary of PSMA scanning, a test that was not even available five years ago. Yes, the challenges we face in the USA are uniquely tough because we do not have universal, one-payer care. Blame the Congress, not the insurers.
You are so right, that was an overreaction to call those other scans useless and I do apologize. It seems that the insurance dictates to the doctors how they practice medicine but for now at least we have it.Thank you 😌
no need to apologize for your advocacy for your beloved. As a physician I share that frustration that in so many ways reveals why we do not have the best health care in the world. We could have.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PSMA Pet Scan results 
PSMA scan shows lung nodules 
Why the need for an FDG scan in addition to a PSMA scan?
PSMA PET Scan: insurance denial 
