I believe that one should be vigilant in this disease. With that said I had a follow-up PSMA PET/CT March 13, 2023. It demonstrated a PSMA avid lesion anterior to L3 and behind the Aorta, consensus was that this did not represent an anatomical variant of the celiac ganglion.
My PSA was at the time <0.01 ng/ml by the Mayo Clinic Rochester Lab.
My first response to Dr. Kwon when discussing this lesion was yes you have permission to add me to the case series of individuals with these type of metastasis.
Review of my profile will show that I was a Gleason 9 at my diagnosis and clearly my tumor is devolving or evolving based on your perspective. It now makes little PSA but still retains PSMA markers.
My decision after discussions with Drs. Eugene Kwon, Ryan Phillips (both at Mayo) and Dr. Nat Lenzo (in Australia) is to proceed with fractionated radiation to the area which is near the boarder of my initial radiation field.
The primary decision in my mind was some form of SBRT vs more conventional radiation. In particular my discussions with Dr. Phillips persuaded me to go with more conventional radiation. Dr. Phillips has published on SBRT in prostate cancer and in particular oligometastatic prostate cancer and has been a self described advocate of this approach. However, he pointed out he is now privy to randomized data from a longitudinal study in progress that looks to support better long term results with more conventional fractionated radiation.
From a simplistic view this makes sense since radiation is most effective in late G2 and M phases of the cell cycle. Therefore more rapidly dividing cells more in sync would be most effectively treated by single dose radiation. Prostate cancer being notoriously slow in terms of division rate would have more vulnerable to radiation therapy by fractionating it over time to hopefully catch more of the cells in a vulnerable time of their cell cycle.
Do I think there is an absolute right answer? No. But I think you have to make the best decision you can with the available information you have from your own read of the literature and opinions collected from people you have grown to trust.
A secondary decision is should I follow up with Lu177. Dr. Lenzo is a firm advocate of this and Drs. Phillips and Kwan do not think it is a bad idea. Clearly this would mean taking a vacation overseas to achieve this both because I would not meet insurance criteria here and it would be more affordable. I am still thinking this over.
In the discussion of radioligand therapy I brought up the problem of renal toxicity. This is particularly a problem with Ac225 who's decay products, more than the primary molecule, seem be the source of problems. This issue is being addressed by Dr. S Takagawa at Weil Cornell where he and colleagues are working with Ac J591 which seems to have lower renal and salivary issues. I would suggest you google him and the isotope which will lead you to a talk by him on this subject.
Also since the issue of FDG scans repeatedly comes up on this forum I will pass on what I gleaned from discussions regarding this. Yes it might have a role in searching for neuroendocrine prostate cancer but not surprisingly Gallium-68 Dota-tate scans (also called NETSPOT scans) are probably more reliable in localizing and defining these lesions. This also opens the way for radioligand therapy similar to treatment of other neuroendocrine tumors with Lu177 Dota-tate.
I am sure there are those on this forum who will disagree with my chosen course but again I firmly believe we have to individually try to sort out how we are going to approach this disease.
To date my life quality has been good. And I am glad to say I managed to ski 51 days this season!!! So as long as I can remain enjoying life I will continue to pursue treatment.
Good luck to everyone who is truly struggling with this insidious awful disease.
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There seems to be more enthusiasm for FDG PET/CT on this forum than on an of the physicians I have spoken to. So I guess if I were going to pursue further imaging I would probably do a dotatate scan.
On the road right now. SUV is significant can't look up right now. Have been down this road with cervical mets a couple years ago. Value and size are similar.
Sorry to hihack this temporarily but I have asked for my SUV #s multiple times and not gotten them. I will ask again next week. In your opinion how important are they? Is there a chance of false positives?
It is important since there are false positive findings and the SUV will give you an idea if the lesions will respond to Lu 177 PSMA therapy, If there are lesions with SUVs values below the SUV of the liver the reponse to LU 177 PSMA may be poor.
If the mets have a SUV below the value of the SUV of the liver and close to the SUV of the blood pool they may be false positive, particularly is there are located in the ribs or other flat bones. In these situation a MRI study may help to decide the diagnosis.
I have had many PSMA PET/CT and a lot of false positive in the ribs and in some lymph nodes.
Having PSMA PET/CTs with diagnostic CT scans instead of the low resolution CT scan of the PET/CT may help with the false positives.
Thanks I know you have a lot of technical experience and insight. I would love to find out mine are and will push for the values but frankly am pretty sure they are what they are. There's this thing going on with my bladder and when I asked my MO about uptake values which appear nowhere he said he was sure they were correct due to their specificity. Then my RO pored over the PET and a recent CT (I think it is high res because it is 1500 pictures compared to a previous CT with 440) and determined they aren't all bone and that some 2 of the 5 are LN's. I had moved a lot of furniture and had some bike rides prior after some time off my bike so a bit of achiness in the region and wondered it it could play a role in a false positive and the uptake value would have put that out of my mind. Of course that might mean the issue with my bladder was the real culprit so I have to hope the Dr's are getting it right. My MO said "we will treat the bladder as LAD" which I didn't not ask him to clarify but I will. Anyway, thanks again. I've taken up enough real estates on this posting and will pm if I have any other questions.
I’ve had both FDG and PSMA PET scans and these showed tumour differences. Worth considering. These scans may also be cheaper in Australia, where I live.
PSMA PET was free last time (July 2022) at the Mater Newcastle NSW Oz, just flashed my standard (free - except for our Federal income tax impost for it) Medicare card. Was $600 12 months back before that.
Pb-212 PSMA therapy is now beginning to be used. I have had two cycles of Lu-177. The first being 3 infusions the second 2 infusions. Pb-212 is an alpha emitter with only one daughter cell but still breaks both DNA strands of the tumor.. The daughter cell does not break away like the more energetic 225 which releases 4 daughter cells. This release enhances the side effects. Good luck, Blue Skies, Sky King and Penny (woof).... Scott Tagawa , is a motivated researcher and we need more like him.
Have you considered PB for your radiation? I did SRT at the Roberts Proton Center at UPenn in Philly, and they radiated a met on my sacrum. I expect to return there if and when more mets return and require radiation.
Yes PB therapy was discussed. The RO I have selected to replace my original RO who retired made a persuasive argument against it even though that modality is available.
I’m always curious about the negative reasoning surrounding the choice of using an alternative form of radiation instead of PB. Was PB offered where you would get another form of RT, or would you need to have PB at a competing facility? Can you recall and care to share what your current RO said to convince you that PB would be a less desirable form of radiation therapy for your situation? This information always interests me. Thanks.
Interesting, my original radiation oncologist Ken Russell (now retired) did some early work on proton beam for prostate cancer. He pointed out that it was often hard to get approved from insurance. I think this factors in. He also said (and this conversation was 5 years ago) the better data in his opinion was with disease confined to the prostate. I have read a bit about it and agree it has some advantages in theory to reduce collateral damage.
From my own experience and research getting approval for PBT from one’s insurance provider often depends upon then area within the country where you live. Medicare presents no problem, but other insurers can be reluctant to pay for PBT if the facility charges more for PBT than for other forms of RT. Often it depends upon where the patient is getting their RT. For instance, at UPenn’s radiology department all forms of RT are priced the same whether the patient is getting SMRT, IMRT or PBT. This is not the situation at some other radiology facilities around the country or at all of the forty PBT facilities now functioning in the USA. If a radiologist works at a facility that offers all forms of radiation therapy, I believe that the opinion of which form of RT would be best for a given patient’s treatment has less chance of being bias by the financial rewards for the radiologist than if the radiologist knows that they may lose a patient if the patient selects a form of radiation therapy that is not offered at the facility where the radiologist works. I know that some folks will think this may be unwarranted paranoia, but it is just human nature and the existence of competition among the medical profession for patients who have the ability to pay for their medical care. When given the unbiased choice of which form of RT to use, I would choose PBT whenever possible in order to minimize the side effects from excessive radiation passing through my body and potentially harming nearby internal organs. Î believe that unbiased radiologists know that PBT has less side effects for their patients than do other forms of radiation therapy. I always urge anyone who asks for my opinion to investigate every form of RT that they are offered and be skeptical of the excuse of cost or insurance rejection whenever that tired excuse is mentioned. Always question any medical professional who does not encourage additional opinions and especially if a radiologist uses the cost issue with PBT.
Proton beam radiation has for many insurances, if not all, been removed from the list of approved Prostate cancer Prostate gland RT for some time now. My BCBS insurance stopped paying for it on Dec 15 2016. Others has stopped at various times up to several years earlier.
The insurances stopped paying for it because they said it was not superior in documented results over Photon or RP.
It cost an additional $30,000 over the other costs, which was the real reason.
So that was for initial RT to the gland itself.
I was quoted $100,000 back in 2017 for self pay from the Proton center in Knoxville TN as insurance would not cover it. I have read that many of the Proton Centers that opened up in the recent past have gone bankrupt or are on life support due to lack of patients that can self pay.
Insurance don't care about secondary cancers down the line, they expect you to be someone else's problem by then not theirs. Another great benefit from profit driven insurance companies. God bless America.
Now individual targeted spots of advanced cancer, I cannot speak for. I would expect insurance to fight paying for any expensive therapy as they usually do.
Again God bless America. We're number one, don't forget.
Health insurers are regulated by their state regulators and in the case of Medicare by the CMS and by designated regions. I receive my BCBS Medicare supplement from BCBS-MA. They will pay claims if my Medicare pays as the primary insurer, and I suspect but do not know as fact that this is the case with other BCBS insurers around the country. Each BCBS insurer sets its own policy based upon numerous federal and state regulations.
How individual PB facilities manage their business with their customers including the insurers with whom they do business is a contractual relationship that is arranged between each PB facility and their vendors including the insurers. I know from discussing this with the people at the UPenn Roberts Proton Therapy Center that when UPenn built and set-up its PB facility with $135M gift from the Roberts family, the controlling stockholders and founding family of Comcast that UPenn negotiated with all of its vending insurers prior to beginning development of the PB facility. UPenn charges insurers the same negotiated rates for each form of radiation procedure including PB. Using this logic, a UPenn radiologist can determine exactly what form of radiation should be selected that would be best for a patient without the physician needing to consider the amount that the patient or UPenn will receive as payment from any of the federal and PA state insurance regulators. UPenn did careful financial planning to insurer that future patients would not be denied insurance coverage for PBT because of the institution’s poor financial planning when adding PBT was added to the services that UPenn would be offering its future patients. Not every PB facility in the US or internationally has used the same careful planning. Some PB facilities charge more for their services than other facilities. Some PB facilities have failed and have been forced to file for bankruptcy protection because they were not properly financed or the management over estimated the future demand and under estimated the costs of operating a PB facility. This happens everyday in the competitive capitalistic medical business world. Some PB facilities are poorly managed and some have excellent management and superior business skills. It is up to each consumer of medical services to do their own research and proceed carefully. I have received PBT for SRT following BCR. I received excellent care. I have had no side effects damage that I can identify from the radiation and all of the costs were seamlessly paid to UPenn by Medicare and then BCBS-MA. I investigated two other PB facilities before selecting UPenn. I had the option of going to either FL or ÇA, but rejected both of these excellent facilities because of Covid restrictions. I did not want to get onto an airplane and risk infection. Both the FL and the ÇA carefully reviewed my insurers including Medicare and BCBS-FL and BCBS-MA and determined that full reimbursement coverage would be forthcoming. As with everything involving medical care and paying for it, I recommend doing your homework, double checking and making an informed consumer decision.
Thanks for you reply, yes Medicare pays for things that when you're not old enough for Medicaid and on private insurance does not cover
The private insurance market players look for FDA approval first and for Medicaid to then cover before making their own decisions. That happened much earlier as MDA had their first use of Proton in 2006 and it was for a prostate cancer patient. Insurances covered Proton up until circa 2014 when some insurance began dropping it for cost benefit reasons.
I went to MDA early 2017 ended up having RP. MDA patient recruiter enticed me there saying they might be able to influence BCBS FL decision to not cover Proton RT for primary treatment. Since BCBS FL stopped covering Proton on Dec 15, 2016.
Based on findings, I ended up not having any RT. Only photon was offered not Proton.
I should have mentioned I was writing about coverage prior to Medicare. When you're not on Medicare it wasn't covered by my BCBS FL insurance.
I travel anywhere to get care. Over this journey I've been to MAYO, MDA, MSK, Duke, UCLA, Florida Cancer Specialists, Levine Cancer Institute. My primary doctor is at MAYO Rochester MN.
I've consulted with Proton hospitals and facilities in TN and FL.
Since I live in two states and my primary doctor is in Minnesota I have regular care in three states.
I appreciate your heads up on UPenn Roberts Proton Therapy Center concerning their pricing, depending on the need I may check in with them if Proton looks advisable in future.
Proton has been on my mind as I will be coming up for PSMA scan the summer.
I've gone through denial and appeals with them in the past which took time, stress, effort. They slowed it down and saved paying for a scan so far for two years. Pushing those scans into the next year.
I used to be a six & sixers splitting the year in half from being in MA and FL. I did that for thirty-one years so I know the drill about using BCBS-FL in two states. It worked out fine, and with Medicare it simply improved but you do need to be sure that Medicare covers the caregivers whom you choose.
I’d definitely recommend looking at UPenn’s Roberts PB Center if you need focal RT treatment. Their PB facility is the largest center in the world with five treatment rooms operating five days a week from 7:00 AM to 7:00 PM. One room is totally devoted to PB RT for kids. The place is Star Wars like for its equipment and efficiency. There’s five PB RO docs, and I recommend Dr. Neta Vapiwala for PCa.
I think Mayo has a PB facility in Rochester, MN and also in AZ. The UF PB facility in Jacksonville was one of the earliest PB operations in the country. I considered using them when we lived in FL for half of each year. Covid changed that. We sold our FL place, waved goodbye to the sunshine and Ronny and his conservative politics and headed back to cold winters in blue MA forever.
See my more extensive reply in a PM. Just want to note to you and others considering this: Lu-PSMA-J591 has no significant renal toxicity. The large monoclonal antibody molecule is not filtered nor excreted in the kidney like Pluvicto is. And due to the high binding to PSMA avid cells it circulates much longer so more efficient at delivering radiation to the targeted cells over a period of 1-4 weeks (half-life being about a week).
J591 is excreted into the bile and intestines predominately, whether 177Lu or 225Ac. Toxicity is mostly marrow suppression (temporary) which can be severe enough to require transfusions (RBC or platelets) in some. Very mild drop for about a month for me.
My whole experience and results are documented in my posts since May 2022. SBRT in 5 fractions to celiac para-aortic node followed by 2 infusions Lu-J591. Paul /MB
Congrats on your retirement and 51 days of skiing! This is the year to do it, Mammoth doesn’t close till July. Just fyi, I had what MO/RO’s discussed as “false-positive” PSMA scan at SUV 3.5 on a mesorectal LN, so if your SUV is very low that may be considered. Also, there have been some posts on the forum about tracking Serum LDH, CEA and Chromogranin A to possibly indicate NEPC.
Excellent synopsis about your history and current treatment plans, along with your reasoning for what you intend to do going forward. Good luck. I am envious in the ski days you are getting in. I hope they are mostly on good snow on a good mountain.
Thank you for sharing in such detail. Your point about working out your individual approach with your team is excellent. This insidious disease can be wildly unpredictable, both in it’s presentation and it’s response to treatment, so an individualized care plan with reputable doctors that know your features is critical.
Your rationale is encouraging as we too try to navigate Gleason 9, recurrent metastatic disease. I love that you continue to ski and focus on qol….that’s a great approach.
Thank you. I think you find people you trust, try to educate yourself the best you can, and work with the people who are providing you care to decide on a plan.
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Metastasis with undetectable PSA
Low PSA, high metastasis, ready for chemo+
Low PSA and PSMA scan 
PSMA PET SCAN AND PSA
PSMA Scan with PSA<0.006 
