After my last appt in Feb, my PSA had risen from .05 to 0.1. My urologist suggested that we wait before proceeding to the next decision point until we get a second consecutive rise in PSA. That appointment is scheduled in May.
Today I got a call from the scheduler at my urologist's office to check on my availability for an "advanced PET scan" in two weeks. I sent an email off to my doctor to ask more about it but based on what the scheduler told me, I suspect it's the new Axumin PET scan. Has anyone had this yet? I know it's pretty new but from the info I could find on the Net, it seems to provide information on where the cancer might recur far earlier than most other scans.
As always, I'm freaking out a bit, but I'm sure it's better to find out as soon as possible to allow for the most treatment options. This test was only recently approved by the FDA and Medicare is the only insurance that currently covers it. So I need to get approval in advance from my insurance company. I guess this test also helps with IMRT radiation treatments if the cancer has spread to abdominal lymph nodes. So there is that...I found the most helpful info here: verywell.com/axumin-pet-sca.... I haven't been to this site before, I found some interesting stuff here.
Thanks,
Chuck
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cfrees1
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The "verywell" link in your posting has a period at the end of the sentence that seems to be causing the link to break. I haven't seen that happen before, but you can try editing it to remove the period.
The article says: "The beauty of the Axumin PET scan is that it offers the possibility of detecting small metastatic lesions in the lymph nodes with PSA levels in the 1 to 10 range."
It sounds like PSA values below 1.0 may not show any hot spots on the scan. I suggest that you call the company to find out whether there is a minimum PSA below which the scan will be useless.
In general, I think this kind of scanning is a good thing. I suspect that many (most?) people won't benefit from it because their metastases are too diffuse. But for people who do have just one or a few tumors, these new PET scans might lead to the possibility of a definitive cure.
This is the third radioactive isotope I've read about for this kind of scanning. The first was C11 choline (choline molecules with a carbon-11 atom, i.e, carbon with one nucleon (proton or neutron - neutron in this case) shy of the usual 12. I think the other one was a fluorine isotope. The article didn't say what isotope the axumin PET scans use.
Yes, I was taken by surprise when my uro's scheduler called me to schedule a "new, advanced" PET scan. I don't even know for sure which it is. I am waiting on a response to my email inquiry. In February, my PSA was only 0.1. But I do trust my uro, he's the director of the Institute for Prostate and Urological Cancers and the Urology Dept Chair at the University of Minnesota Medical School, an NCI-accredited practice. He is very tapped into the latest and greatest stuff, so I'm pretty confident he wouldn't be requesting a scan for me unless he has some new toy which offers him something to help in making treatment decisions for me. But you are right, I thought I needed to have a much higher PSA before a PET scan, even the choline ones, would be able to pick anything up. I'll keep you posted in what I learn.
The F18 Fluoride scan is the latest scan I've had. It showed mets that were just maybe's prior. I had it around this time last year.
For it, I get an Xgeva shot every 28 days, and have a full blood work up done also. When Lupron failed about 9 months ago, my Onc put me on Zytiga. It took my Psa from 29 down to 1. Then it hovered around 1 to 1.4. I called today to get my last PSA and it was 1.7 on 2/28. This tells me that the Zytiga is beginning to fail. I am not at all worried about it.
I've come to terms with my own mortality. I'll be 58 in May, and my only concern is to see my grandson grow up to realize why his pop-pop died. He's four.
I don't expect to die very soon (though one never knows when a heart attack will strike), but one thing I hope to do before I die is write down as much as I can remember about the history of my family and about my childhood to give to my children and grandchildren. I plan to make digital copies of the documents and some photos. I'll get them together and make them as easy as I can to preserve.
I know hardly anything about my own grandparents. When I was about 8 years old in my grandfather's house I came across a diary that he made when he was young. It could have been some time around 1910, but for all I know it could have been 1900 or 1920. I remember reading in it how much he admired Abraham Lincoln.
I'd give a lot to have that diary today, but he died in 1971 and I have no idea what happened to his papers. They're long gone. My children never met the man, just as I never met my grandmother or my other grandfather on the other side of the family. They both died before me. But I do still have some memories of the ones I knew and I want keep that tiny bit alive for their posterity.
You know what I found when I was about ten? Not a diary, but antique/old porno mags. My G-dad died just before I was born, and I assume he never thought about them. I wish I had those today. Not for the porn, but for the history. Nah!
In my particular situation, my PSA has gone up to 7.8, a few months after the completion of my Proton radiation (it had bottomed out to 0.5). I had different whole body scans available in my area including PET choline. None of the scans detected where the mets were. I finally had an MRI scan of my pelvis area with colorectal coil. My left iliac lymph node was swollen and suspected of adenocarcinoma given the color. Subsequent biopsy confirmed prostate met.
So from my experience, it's hard to tell your met can be detected by any of the available scans today. Did you have RP as a primary treatment? And many oncs consider lymph node mets to be systemic since it can spread using the lymph system. The main treatment at this point is usually systemic like ADT, etc. Complementary treatments like focused radiation, etc. are usually not so effective anymore at this stage.
I haven't had a scan since June 2015 and my onc is basically managing the numbers. Aside from the side effect of the treatments, I'm able to function pretty much like the next guy but with lesser expectation of myself.
I look forward to the day when prostate met detection using liquid biopsy can tell us that what remains in our body is of the type that won't be a factor for the rest of our expected lives so we don't have to undergo treatments anymore. Side effects are what affect our QoL and promote other diseases such as diabetes and heart disease even when PCa is no longer a factor.
Yes, i had RP 12/15, then adjuvant radiation for 39 treatments 8/16. I'm on Lupron and have been for 14 months. My PSA is now rising. My uro isn't one to just go off on wild goose chases, so this request was curious. If my insurance covers it, I'm willing to give it a go. I would like to get inside Dr. K's brain though just to see what's going on in there. He knows that I want to be as aggressive as possible. Outside data provided to me last night indicates that, while we normally don't have access to the Axumin PET scan here in Minneapolis, there is a special opportunity over the next fews weeks to get scanned. I guess I'm one of the candidates in the area who might benefit from it, even though it's a bit of a long shot in my opinion. Let's roll the dice and see what happens! I'll bet that part of this exercise is to give the team here at the UofM some experience with this type of scan as well.
"I look forward to the day when prostate met detection using liquid biopsy can tell us that what remains in our body is of the type that won't be a factor for the rest of our expected lives so we don't have to undergo treatments anymore."
Right. I'm hoping it will be even better in 20 or 50 years. Your grandson wil go to a doc for an annual checkup. She'll do a blood test and say "Hmph, you have prostate cancer and cancer of the left toenail. Take these two pills and you'll be all better. They might make you tired, so take it easy for a couple of days."
My scans came back clean, "no evidence of metatstatic prostate carcinoma in the chest, abdomen or pelvis." I figured that I was getting scanned a little early, but I was right that this was kind of a training exercise for the staff at U of M. Despite the results coming back as I expected, it's still a relief.
I has the PET scan with Axumin about 3 weeks ago. It revealed exactly where the PC has metastasized. 3 places in my case. Unfortunately I’ve already had the lifetime dose of radiation to my abdomen so tackling the lymph nodes and area where the prostate used to be with radiation isn’t an option for me. The scan may give your options that are targeted to certain areas. Good luck. The scan is valuable. Knowledge is a good thing.
Oh, BTW I had to pay the full $4100 ahead of time to reserve my spot in line in case insurance wouldn’t pay. Then I was reimbursed when my insurance paid.
This is a general reply to thread. I realize its an older thread and might not be tracked anymore.
Re the topic of axumin, I was told that for FDA approval axumin was approved for soft tissue, not about bones, and no studies have been done by them
related to bones, even though some anecdotal evidence might mention bones.
I did not know this when had the axumin scan, and I assumed the comment there about no spread to bones was based on axumin scan results, rather
than just saying nothing was seen in bones, but now that I know axumin
not for bones, I realize I have no data - should have gotten a Na F scan
then also ! Dr and myself been operating like no spread to bones happened.
Now the sodium flouride bone scan is no longer covered by medicare, just the older tecnitium one (can't travel to places that do choline/acetate or psma
and those are not covered by traditional medicare anyway.
Now that psa is lower due to ADT, will need to wait anyway to even do the older bone scan though I realize even the newer ones need psa to be of some detectable value to give better results.
let me know if this post is better done by a new thread since this one is a year old ?
Well, all I can say is that the Axumin scan clearly revealed that I have mets in the L5 vertebrae as well as my lymph nodes and the area where my prostate used to be. Interestingly, all three areas are those that have seen surgery since initial diagnosis in 2010.
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