Doc says this is the best scan to have to see if it’s spread , thoughts anybody ?
Axumin scan : Doc says this is the best... - Advanced Prostate...
Axumin scan
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Rmurchu
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It's approved for recurrences. There are other experimental scans.
Do you think this is a better pet scan than the other one
Which other one?
The nurse said the choice was between a regular pet scan $1500 or this now one which is supposed to be better at detecting prostate cancer spread. $5600.
Axumin is covered by Medicare for recurrence.
Some more history of what is happening with you. Gleason 10 isn't enough. Whats the PSA, have you had other scans and nothing showed? Where are you located? Is this a recurrence as TA asked? ... thanks.
Most recent psa was 13.4 and 15.2 one month before .We are from Toronto Canada, but winter in Florida had 3tp mri at Sperling with in bore mri biospy . Never had any scans yet but because of Gleason 9+10 Gleason 10 he suggested that the axiom pet scan would reveal more that a regular pet scan . We would never get this in Toronto not even sure if it is available or if it was available it would not be done anytime soon . The wait times are very long . Plus you cannot choose who you see ,what treatment you want to have ,what radiologist you would like or ask for a medical oncologist . We got the MRI done here as they refused to give us one in Toronto said it was not there protocol .Trus biopsy first and only confirmed Gleason score can you have an MRI and it’s not on a 3tp mri either much lower like a .’1.5 if your lucky . Much more advanced here and you get get what you want , Canada system does not allow you treatment choice . 65 years of age . 10 samples taken :
4+5 =9 85% of the most involved core
4+5=9 60% of the most involved core
4+5 = 9 65% ...
4+5= 9 45% ...
5+5 = 10 tumor tumor quabtitation : involvement of prostatic tissue 10% grade group 5
Atypical glands present immunoperixidase stains to follow
Benin prostate tissue
Atypical glans present
Last 2 samples showed Benign prostatic tissue
Addendum:
One of The atypical tissue shows basil cell lining 3+3= 6
Total percentage of prosthetic tissue involved by tumor is 20%
Hopes this helps
Axumin is not approved for high risk. There are a few places (like NIH, where it is free) where they are testing PSMA-based PET scans for high risk patients.
You mean not paid for or dangerous for high risk ?
Not FDA-approved, so Medicare and most insurance won't cover it. No danger that I know of.
K thanks
There’s no preauthorization required by Medicare for an Axumin scan so no reason that it wouldn’t be covered for high risk.
Ed
It was only FDA approved for recurrence - not high risk
PSMA-based PET scan at NIH found metastatic prostate cancer in several lymph nodes. Does this mean medicare will not cover future Axumin scans ordered by my doctor? Currently, I am on Casodex and Lupron
You can get Axumin if you are recurrent after treatment.
TA
Why do you say this? I’m high risk and axumin was approved. All that was necessary was bcr.
Bob
You were not high risk.
TA
I was Gleason 9, stage pt3b at pathology and two years prior to the axumin scan I had mets to pelvic lymph nodes which had been radiated. The scan found a femur met.
What’s your definition of high risk?
You were recurrent, not high risk.
I am also from the Toronto area. Went for treatment at Dattoli Cancer Center in Sarasota, FL, after being refused decent scans or treatment at home. G8, oligometastasis. There is a clinical trial for PSMA scanning in Quebec, I think headed by Dr. Cynthia Menard, who was the best RO at Princess Margaret Hospital before she left for PQ.
clinicaltrials.gov/ct2/show...
I don't know if you'd qualify for this study if you're from out of province. BC is doing immunotherapy research and applied treatment, but they have a one year residency requirement.
I'd appreciate hearing from you about your ongoing experiences.
Thanks.
What kind of treatment choice did you choose, was radiation done in Florida what about Lupron shots ? I’ve been reading that a trifecta approach for high Gleason 8 or more is best , to hit hard , we are Gleason 10 .
EBRT + brachytherapy boost and Adt has longuer survival rate . What treatment have u done ? My uro from Toronto refused mri for diagnostic purposes wanted to do a trus biopsy first. ... had 3mp MRI and in bore biospy done here in Florida at Sperling. Pet scan is schedule for Thursday . Seems so much better here . The doc here gave us some casodex he said to be on that for 2 to 3 weeks and then get Lupron shots then after 2 months start radiation. What were u offered ? scares me now to go back to that shitty health care system we have . Doc in Toronto was contacted on sunday got an email from his assistant to say I gave the info to the doctor ....we have heard nothing back . No feedback on Gleason 10, no instructions if it’s ok to take casodex till we see him ,,,it’s terribke the way we are treated there . Third world country in health care ...everything is top class here .
I have so many questions for you ... does the uro refer you to the RO ? Can you pick your RO or does the doc pick one .. my uro is associated with eastern hospital. I wonder if Torobto has a medical oncologist . I don’t know what his treatment plan will be. How are your nets being dealt with ? We spend the winters here in Florida . We need to leave by middle of May at the latest . So could get one Lupron shot before leaving but radiation we won’t have time for that . Hard to ask another doctor then to pick up the treatment in Toronto as they might not like what we are doing so far which is casodex . Doc prescribe metaformin for us as well waiting till scan is done for that .
Sorry if this seems to skip around a bit. Eyes, fingers and age make typing not great.
I'd rate my treatment and experience at Dattoli Cancer Center as first rate. They treat with curative intent, which I had no chance of getting at home. My Dx was G8, PSA 20, and stage 4 oligometastasis (<5 mets). My uro had wanted to do a TRUS biopsy when my PSA went from 4 to 8, then 10. I immediately dove into researching everything I could find. After learning that TRUS is maybe 65% accurate, and that it often misses PCa in the anterior part of the prostate, I asked my GP to refer me to PMH and Sunnybrook in hopes of getting access to one of the very few MRI fusion biopsies in Canada, and usually only within clinical trials. I never heard back from any of them. By this time. I'd hooked up with a guy who'd been treated at Dattoli, and he suggested I contact the fusion biopsy guy at PMH directly. No luck there either, although I finally got hooked up with an RO at PMH, recommended by another guy. I couldn't get anyone to give me a referral to have an MRI done, likely because my rectal exams and prostate ultrasounds were always "unremarkable", so I went to Buffalo and paid for one, which confirmed a large tumour on one side, and a smaller one on the other, of the prostate. Then PMH did their own MRI, and then they agreed to use the MRI data to guide the TRUS biopsy. I had the strong sense that I had no choice on the RO or subsequent PCa professionals I'd be dealing with in Canada. I was scheduled to have a cystoscopy done by the uro dept, but when the biopsy came back with the Dx, I was told the "bad news" with long faces and talk of poor outlooks etc. Enough of why I went south, except to say that in TO, you will not be offered curative treatment, or brachy, or triple blockade. It's possible you might have brachy in a clinical trial, but with G10, I doubt it. It will likely be Casodex pills for around 5 weeks, and Lupron shots every three months, to see how you do. This goes against the STAMPEDE and other clinical trials which have recommended early heavy intervention for PCa. You will likely be offered RT for 37 weeks, including RT for any bone mets you have, but not likely for any tumours in soft tissue. The whole body bone scans are OK, and the CT scans will likely reveal the most obvious mets, but they have been using the same radiotracer (contrast dye) here for 30 years, and it's still not approved by Health Canada. I'd suggest going to Buffalo for MRI or to other centres for PSMA scans. They won't do MRI in Canada unless there is evidence for it, (but now you can pay for one here yourself) and the only PSMA scans in Canada are scheduled for a clinical trial in Quebec. You can't get a PET scan here either, outside of a clinical trial. One doc owns one in London, ON, but I got no response to 5+ phone calls....as a PAYING patient. I kept my status as a patient at PMH because I need follow-up, but I will tell you that PMH for my situation is next to useless. I've had 4 ROs in 2 years there, none of my choosing, and clinic meetings are rushed and perfunctory. I also detect resentment that I went elsewhere for treatment.
** I don't know your employment or financial situation, but I would recommend that you get treatment in the US or elsewhere, if you can afford it. If you decide on Mayo, or Dattoli etc, their programs will usually be similar. You'd have to find accommodation for at least 2 months, as it is likely too much to go home on weekends, and hotels/motels are more expensive than Air BnB etc. There is a lot of waiting and delay here, and you would be expected to sign on to a program at PMH or Sunnybrook, with little or no choices of ROs etc. Even if there is no involvement outside the prostate, with G10, there are almost certainly PCa mets waiting to move around your body, via blood or nerves, if they haven't already begun. At this stage, they are likely too small for nearly any scan to pick up, but almost certainly at home, they will not be found for some time. And most ROs will not try to treat what they can't see. Another option is Theranostics....very expensive, but can I.D. and treat very small mets. Best option may be to find clinical trials, most likely in the US, which would usually be free, but you'd have to commit to travelling and keeping appointments etc. ROs at the various cancer centers in the US would like be able to point you in those directions. Every PCa case is unique, so you need the best DX and treatment you can find. Clinical trials offer cutting edge scans, or RT, or any of a number of resources you might not otherwise be able to have. Timing is not always right for you, though.
At Dattoli, I had 37 RT sessions to pelvic area, mostly on prostate and lymph nodes, and the rest on the suspected metastasis in my femur. Then I had Brachytherapy, which was really quite painless etc. and which is only done my Dr. Dattoli, who has treated at least 10,000 men with PCa. He and Dr. Joe Kaminski, who I was hooked up with, are the 2 ROs at the Center. 3 Months after that, I returned for follow-up lower dose radiation to pelvic lymph nodes. From the start, I was on triple blockade ADT: Trelastar 3 month injections (I was alergic to Lupron. Hives etc) , Casodex and Avodart pills. Also was on a variety of other meds: some to reduce RT effects, others to maximize hostility to PCa spread. I had some temporary urinary issues after RET, but they are expected, and have mostly resolved. My PSA 16 months after my last RO treatment is undetectable. Testosterone is slowly coming back. I realize PCa can always come back, especially for advanced and aggressive disease. The friend who referred me there was treated 10 years ago and remains cancer free, as have 2 of his friends. I highly recommend the Center.
Their costs at Dattoli were $37K US for the complete treatment program, including the Brachy and the follow-up RT, plus another $15K for Sarasota Hospital's charges.
I hope this is of some use to you. Let me know if I can help.
Very grateful for your reply , getting Axumin PET scan on Thursday here in Florida to check for Mets. Results next week, so you simply called the centre for an appointment ? My doctor here in Delray could refer me . I was scheduled for a FLA procedure there but after biopsy results came in he said he would not recommended it. Felt we were being dropped ... so I just call then ? How long before you got seen?
I just called, in response to their offer of a free phone consult. Dr Kaminsksi, who ended up being my RO, spoke with me for about an hour and we had a few other calls after that. There was no requirement for being referred etc, possibly because I was a non-US citizen, and in a self-pay position. I booked an intake, to start the program, with a date 3 months from that phone consult. I'm not sure if that was their wait list time. You could certainly call them, and ask how long the wait would be, or ask for a consult and a fast intake. I suppose you could offer to send any scans and other test results to them. If you do sign up, they will likely require that you have any scans not already done, at Sand Lake Imaging in Orlando, but at a much reduced preferential cost. I also had my pathology results re-evaluated by a lab they recommended. (My results, which had been done at PMH were confirmed by that lab, so that is one aspect of my PMH experience that was OK) I was OK with the 3 month wait because at the time, I was trying to make my way in the system at home, while keeping Dattoli as an option. I made my decision to go south after a Sunnybrook head RO had given a talk on the importance of using the multiple early interventions I mentioned earlier (a la STAMPEDE Trials) to hit PCa hard, with the view to better outcomes, and after I had wangled a second opinion consult with him, he told me they were not going to do that for me......No explanation...just that I was not a candidate. I felt so angry and betrayed, I called and confirmed my Dattoli intake that day, for the next week, made all the arrangements really quickly and drove down.
Dattoli was OK with whatever payment arrangements I wanted to make, as long as my account was clear by the time I finished Phase Two of the treatment (First round of RT and brachy)
Ok , I’ve sent info to them will take a week to get back for phone consult . We’re u prescribed casodex in Toronto or Florida . I started casodex 2 days now and they said I should be on it for 2 to 3 weeks then start Lupron to make the cancer more sensitive to radiation treatment . Did u get shots of Lupron in Canada before your treatment began in Florida ? You said u were allergic to Lupron was it Toronto doctors that switched your meds out , who prescribe that for you Datolli or princess marguerite ? How about if your not feeling well when back in Toronto is anybody’s there willing to help you now that u got treated in the Us .... sorry I am thinking about the logistics of it all .
All good and appropriate questions. I was started on Casodex and Lupron at PMH, as prescribed by my first RO. PMH agreed to switch me to Trelstar after I returned from FL following Phase one and two treatments, and before I returned for the RT follow-up. I think (hope) PMH would have responded to post treatment issues, but found that my GPO was much quicker and less obstructive in supporting me. He's been great, and willing to back up all the recommendations, scrips and protocols from Dattoli. Dattoli also responded quickly to any concerns I had, with appropriate advice and suggestions. PMH response to my sharing of Dattoli protocols were met with either blank or questioning stares, or with subtle dismissal. I think they're obligated to continue to support you after you start with them, and they should continue with protocols from elsewhere unless they conflict with internal policy. You should be able to do workarounds, but you should be prepared to get scans recommended by other centres done elsewhere, especially the high resolution ones. Much depends on identified mets and how they've responded to treatment.
I returned to Dattoli for a 6 month follow-up after the end of treatment. It was a reasonable cost, and I flew down and back for one overnight stay. If my local bloodwork is good, I feel there's no reason to go back there. Depending on if, or how there is recurrence, Dattoli offers treatment for that. You could go there for their Dx and treatment opinion, and if it's something you can do here, with confidence, that's good.
Where and who did your initial Dx etc?
Just got an email from uro in torobto to say stop the casodex immediately ... no explanation
It's maddening that some medical people seem to assume that either you wouldn't understand the reason or rationale for something they told you to do, or stop doing. or that or that sharing such important info is not part of their protocol, or whatever. This is a clear violation of informed consent, regardless of the reason for it. Why not contact the person responsible for your case at home and tactfully insist on an explanation? Is this in the context of an updated Dx or treatment plan? Is there some critical reason for their messaging you? Do they know you are considering treatment in the US? There are power plays for control by individuals and in Canada over medical issues and related income turf. Disgusting, but true. I have friends who have been through this, and they have told me of instances in which they've been fired by specials when they've asked pertinent questions, or have sought second opinions etc.
You could post a question about the Casodex issue here. There are some very knowledgeable members who may be able to offer some insight.
Could not agree more , we did send an email politely asking why ... no response ... pet scan tomorrow . Thanks again for all your feedback , I feel that I am not alone facing this challenging mine field back in Canada . Again thank you ,
Rmurchu,
Just a heads up. Your phone call from Dattoli will likely come in less than that 7 days. We were told 7, but when they got our paperwork right away, they started calling immediately. You get no notice on the day of the phone consultation. You just get a call saying that one of the MDs is ready for a consult. And are you? 
You don’t need a referral. Do your own shopping for RO if you don’t like one recommended by your urologist. Go with the best and most knowledgeable of PCa no matter where they practice but be prepared to live there unless it’s in reasonable commuting distance. Lot of down time which is why Sarasota is nice in winter! And lodging is not expensive unless you want to be on the water(lol)!
Recurrence after prostatectomy is confirmed over 0.2. Recurrence after primary radiation is confirmed nadir+2.
Some interesting scan info (long),
Dr. Kwon (Mayo)
youtube.com/watch?v=Nkqizmv...
Dr. Almedia (Phoenix)
youtube.com/watch?v=W45WA-_...
PSMA PET
John has had three Auximen scans. All were covered by Medicare. No surgery, no radiation. Used to determine burden of cancer.
My father had one, it found Mets that the ct didn’t ,
Thanks Larry hoping for the best ..
I went to Mayo and Eugene Kwon in Rochester MN. They use the C11 Choline PET scan which was developed by Kwon and brought to the FDA for approval by him. He is a fantastic Dr and a leader in prostate cancer research. This scan pinpointed every met in my body, bone and lymph. He then custom tailored a treatment plan for ME. 5 years later zero PSA and inactive spread. He is a miracle worker.
May I ask what Gleason score you had ? Mine is Gleason 10 stage 5
Jackie Gleason 4+5=9
Highly aggressive
Thanks for your reply, my scan is Thursday I need to know if it’s spread as to make plans for treatment . Thanks
according to MD Anderson , Houston and Duke University say it is by far the best. So it appears your man is correct...There are no other PETS that I am aware of that pick up prostate cancer . I had head and neck cancer and had two PETS and was unaware I had PC.
Yes, but PSA has to be significant
I had it to verify no spreading and it found a 1cm lesion on my lung .. no other PC anywhere else ( other then 3 cores in prostate) it probably saved my life. Best scan there is ....
For whatever it is worth...
I had an Axumin scan last Sept that did not show distant mets.
A month later I had a PSMA scan in Europe that did find mets in lymph nodes and bone.
All the best.
Similar situation myself. PSMA scan through a clinical study found the recurrence in my lymph nodes where the Axumin found nothing 10 days earlier. I’m at my RO’s office as I type planning the RT treatment of my LNs. These studies are numerous and relatively easy to get into if you meet the criteria. I’d recommend anyone in a similar situation to look into it.
I wish that there was a place that would specialize in this and do everything in one place with all the specialists in one location with all the latest equipment rather than trying to figure this out on our own which is the best place which is the best machine etc. this is very draining for all of us that are dealing with this I appreciate your reply, and god bless you and your family on this journey
I’ve had two Axumin scans which were both negative. PSA currently 36.1. Scheduled next week to have 18F-DCFPYL PET/CT scan at NIH in Bethesda,Maryland. There is no charge for scan but one qualification for trial is patient must have had no hormonal treatment. Call Yolanda McKinney 240-760-6095.
My MO thought Axumin for me late last year . Talked to a colleague MO at UCSF and they both decided on a trial GA68-PSMA scan for me at UCSF . Multiple lesions (more than 10 ) were found in my lungs. Metastasis to my lungs only.
Axumin is approved for recurrence detection (rise in psa after primary therapy), but apparently medicare covers 'off label' use for of axumin for newly diagnosed high risk patients (Gleason 9 or 10). Axumin and PSMA PET (the '$5,000 scan) are much better than CT scans for detecting lymph node invasion (the invaded nodes light up 'like a christmas tree'), and they can detect bone mets but some people think a separate bone scan might be a good idea. Note that the sensitivity is not 100% - nodes that don't have a lot of cancer cells yet (under ~500,000 cells) might not light up.
There are no studies comparing Axumin and PSMA PET for newly diagnosed high risk patients (as far as I can tell and I've looked pretty hard), but some doctors think that for patients with a PSA over 3 or 4 or so the two scans should be pretty close in results (PSMA works a lot better for lower psa).
(There's a lot of research on PSMA PET, and it should be approved pretty soon. UCSF offered me the two scans (medicare would cover axumin, they said they could get medicare to pay for the PET part of PSMA PET), but then I qualified for a study so I got a PSMA PET scan for free).
Hope this helps. If cost matters, axumin should be good enough. PSMA could be a little more sensitive, but it's not clear how much more given your high psa.
Thanks Rmurchu for this.
Makes me think that, although responding well to ADT and getting my PSA right down, I might not be doing all I can for myself.
Will certainly be following up on this additional diagnostic work and possible treatments
There is a clinical just started which h will be free if you are accepted. Where r u located?
My husband had the Axumin in Dec. of 2017 at PSA 1.0 (BCR). Axumin did not find it. C-11 Acetate at Phoenix one month later did not find it. F-18 DCFPyL (no cost) at Stanford in early December of this year found it, still at PSA 1.0. Dr. Kwon's C-11 Choline also found it at the end of January, still PSA 1.0. Interestingly, although both the F-18 DCFPyL and C-11 Choline found the reoccurrence, they did pinpoint it in different locations, the DCFPyL on the left side of the prostate bed, the C-11 Choline (and Mayo's MRI) on the right side of the prostate bed. Treatment starts at Dattoli on 5/1.
Strongly srecommend GA-68 PSMA-CT as the tracer specifically binds to prostrate cancer cells and provides very good resolution. Following radical prostatectomy PSA was rising and had regular PET-CT and bone scan both showed nothing.
GA-68 PSMA-CT scan in Berlin Germany clearly showed two small lymph node tumors which were then radiated on my return to Canada with follow-up ADT. PSA has gone from high of 12 to currently about .011 and possibly still falling.
Peter
Are you happy with treatments you are receiving in Canada for your type of Gleason score ? May I ask where in Berlin and did you need a doctor there to refer you, thanks
I was at Princess Margarets in Toronto for surgery with Gleason 8 but moved to Juravinski in Hamilton when the Surgeon/Oncologist had predetermined ideas on appropriate therapy as follow-up for rising PSA. The Toronto surgeon told me I would have to go on standard ADT and to get really fit as the drugs would probably kill me with a heart attack and hence my decison to move to the more supportive cancer care facility in Hamilton.
I did however get a referal from the Toronto surgeon to go to Charite in Berlin (details below) where I was very well taken care of and same day as the PSMA scan I had 1 hour consultation with Director of Oncology to review the images and options. I believe it is very important to have an oncology team who are able to make best use of the images in making follow-up therapy decisions based on PSMA information rather than 'standard' procedures and for me that was a challenge.
I now have an excellent Oncologist who agreed to my request for Estrogen patches based on published clinical studies. After two years of patches all seems to be good, no hot flashes and no libido but was told on my last visit that I am probably in remission with PSA of .011
CHS Charité – Healthcare Services GmbH
Charité International Healthcare
T: +49 30 450 578 244
F: +49 30 450 7 578 244
Address
Bundesallee 39-40
10717 Berlin
Hope this is useful
Peter
Thanks for sharing all this information really appreciate it I heard , degarelix (firmagon) is a better alternative to ADT , not yet received treatment.. did u get RP then ? And ebrt or brachytherapy , was that even offered to you ?
Estrogen patches are to help with hot flashes from medication? I have not heard of this , what does the published study says about it for PC. Thanks
Worked great fir me. Locatef mets in lymph that did not show on ct or spec scan. With psa of 1.2
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