Cost of c-11 choline pet/ct

As usual, it makes no sense from a "cure" perspective for the insurance companies to deny your request for a C-11 PET Scan if one considers that it is, by far, the most accurate predictor and locator of where your recurrent prostate cancer is located.

However, from a strictly "cost" perspective, the insurance companies are denying your request for one main reason--they don't want you to be treated.

A typical treatment for your recurrent prostate cancer will run about $60,000 at the Mayo Clinic, and up to around $140,000 if there are complications. By denying your request for a C-11 Choline PET Scan (which now costs $8,495 at Mayo in Rochester, MN) and thus they are saving the company at least that much (and possibly thousands of dollars more) presuming you don't go ahead and pay for the test yourself. Of course, if you do have recurrent prostate cancer that could be treated (and even possibly cured) if you have a PSA of 4.5 or below at this time, they are also signing your death certificate. Typical systemic treatment for a cancer of this type will consist of chemical castration (hormone therapy), followed by treatment for castration resistant prostate cancer, followed by chemotherapy. Average life span would be about 8 years with this treatment and 4 years with no treatment, versus possible total cure of the cancer if you go through with the C-11 PET Scan. Comparing the two different choices, the $8,495 is a small price to pay. Go watch the youtube video of Eugene Kwon where he discusses the two differences in treatment types and the success of the C-11 scan--it is a real eye-opener.

One last thing. Almost all insurance company policies require mediation of your case, versus being able to sue, but you can sue if your mediation is denied and it turns out that your cancer was detected by the scan--and they will lose. But, of course, they don't want you to know that--or to challenge their ruling. They may want to cure you, but not if it means that another 20,000 get wise to the fact that there is a cure--and that they then have to pay. They are playing hardball with your health and your life. I say get the scan, and then mediate, and then, if necessary, sue--even if only in small claims court where cases are often limited to $5,000. Even if you lose, you are out $8,495, but you may just save your life--or extend your lifespan by an extra 20-25 years.

My situation is that I had prostate enlargement symptoms starting in March 2007 (PSA 3.72) and was started on Avodart at that time.

In August 2011, my PSA jumped to 9.65 and my urologist suggested that I have a second test, which put my PSA at 7.94, a third test was done the following month (PSA 7.78) and it was suggested that I have a biopsy. I had the biopsy and it confirmed that I had prostate cancer and was at Gleason level 4 (2+2). Suggested course of treatment was "watchful waiting". I found this odd since I have a family history of prostate cancer (father had it, grandfather died of it, three cousins died of it), but I decided to follow the urologist's suggestion. (Gigantic mistake).

My next PSA test was scheduled for a year later (why it wasn't 3 to 6 months I don't know). Anyway, in October 2012, my PSA was 5.90. Was then scheduled for a PSA test 6 months later. PSA in April 2013 was 7.01 and I had a second biopsy which indicated my prostate cancer was much worse--gleason score 7 (4+3). Met with radiologist who indicated radiation was not an option as my prostate was too large for radiation to be effective. Had Di-Vinci robotic prostatectomy in early July 2013. Examination of removed prostate indicated gleason score of 8 (4+4) and positive margins (means PC leaked out into other areas of body). At same time, 5 pelvic lymph nodes were also removed, but indicating no malignancy in them.

Had PSA test following surgery in September 2013 (PSA .224) meaning PC was less but not gone. Had external beam radiation in November-December 2013 (35 treatments--7 weeks @5 treatments/week). New PSA in February 2014 indicated PSA at .226 (essentially no change). PSA in June 2014 was .496, and in October was .901, and in February 2015 was 1.77 (obviously cancer was doubling every 4 months). At this time, my urologist recommended I start hormone therapy (casodex followed 5 days later by lupron shot). Said I had 4 years life expectancy without the treatments and 8 years with this hormone treatment.

I decided that rather than continue to follow my urologist's recommendation (which had not been very helpful) I needed to start doing my own analysis. Discovered the C-11 Choline scan at Mayo Clinic in Rochester, MN, and got my urologist to refer me and apply for pre-approval through my insurance company. Was able to get this approved only 15 minutes before scan performed. Because somebody else had just cancelled their appointment, and because I was a "perfect" candidate for their scan, flew their later the same week (in March 2015) and the scan (which was confirmed by a MRI test using rectal coil) found that I had cancer in my left and right illiac lymph nodes (2 in right, 0 in left, but potential 1 more in right side and 1 more in left side). They said they could remove these surgically and that I could be completely cured. Went back home (to northern California) and tried to see if anyone at either my hospital or at UCSF could do surgery based upon Mayo's scan. All basically refused, claiming they couldn't do without more testing or hospital administration pre-approval.

Scheduled surgery at Mayo Clinic. They couldn't do it until around late June 2015. Surgery was to remove all 30 iliac lymph nodes using Di-Vinci. Examination of removed nodes indicated 4 with prostate cancer--3 on right, 1 on left. Following first surgery, passed out when got up to walk. Nurse present and called for backup and had 12 (!) people there within 2 minutes (this was at 12:30 AM in the morning on a Sunday. Situation was stabilized, and I was moved to intensive care ward. Mayo determined that I had massive internal bleeding and follow-on surgery was scheduled for 14 hours later and was successful.

After 2 months took two PSA tests, one in California (PSA <0.015 (lowest reading possible using their scale) and PSA in Minnesota now listed as <0.1--their lowest score and categorized as "cancer insignificant".

Was scheduled to have a second C-11 scan tomorrow in Minnesota (to confirm that cancer is actually gone as PSA scores are not 100% reliable but imaging is). Insurance company (Cigna) turned down this scan--and is now turning down all requests for C-11 Choline scans claiming that the scans are "experimental and unproven". I have appealed this decision, but have decided to delay my follow-on C-11 scan until receiving a reply to my grievance filing. If I had not already had my successful surgery, I would never delay having the scan even if it was denied for payment. It is not at all "experimental" but effective for everyone I have talked to or met--both at the Mayo Clinic and also online. It is the only thing that saved my life.

Gary,

First of all, I want to congratulate you on all your work towards getting cured - You are evidently a highly empowered patient, and I'm glad it worked out so well.

My only question is why bother with imaging now? C-11 Choline or Acetate PETs shows tumors that are metabolically active, which yours, even if any still exist, are not. As long as your PSA is undetectable, it is highly unlikely that any PET scan will show anything anyway. BTW - there are some very good experimental ones that are now available at UCSF and Stanford.

The kind of salvage extended pelvic lymph node dissection (salvage ePLND) you had is not often done in the US (more often in Europe). I think the difficulty is finding them all, and some are now using fluorescent dyes for that purpose. It carries a risk of lymphocele and lymphedema, which is why some prefer radiation for that purpose.

My insurance company also says the C11 PET is experimental for PCa and won't cover a cent of it. I hope their motivation isn't as unsavory as you're suggesting. However, as in most things, follow the Benjamins!

Time101-

Yes, 18F-DCFBC is a PSMA PET - that's the one they're giving for free at NIH

GaryLK-

Maybe in the info in the following link will be useful to you. It explains what the legitimate purposes are for the scans, and which ones are best, so far.

[url]https://pcnrv.blogspot.com/2016/12/pet-scans-for-prostate-cancer.html[url]

Although the C-11 Choline and fluciclovine scans are FDA approved, that doesn't mean insurance will cover them. If you have Medicare, it might. They probably won't cover any of the unapproved scans that are in clinical trials. UCLA is charging $2750 for the Ga-68-PSMA scan.

I don't really understand what you hope to gain by having more scans. Have you started on ADT yet? The TOAD study this year proved that delaying ADT doubled the 5-year mortality risk.

One other thing I failed to point out--the doctors at Mayo do not prescribe only scans and surgery. In many cases, they prescribe that ADT be started or that radiation be pursued as alternatives. I just trust their judgment over the local doctors here in northern California where I live, as the local doctors have little knowledge of this disease, and even less of new improving therapies to combat its spread.

GaryLK-

I wish you luck with this strategy. I know Kwon is doing this as part clinical trial. I hope he is able to prove that local removal of individual mets increases survival - there is currently no proof of that. Local control (which certainly reduces PSA for a time) is not the same as extending survival (which is the goal). I have nothing against removing detectable mets as long as it is safe and doesn't preclude known effective therapies, but I do believe that one has to treat what one can't see as well as what one can see. But maybe Kwon will prove the medical community wrong - that's what clinical trials are for.

ADT is standard of care when mets have been detected, or when PSA is high or when PSADT is rapid (which connotes mets). I am not making up the fact that delaying ADT increases mortality. That was shown in a large RCT this year called the TOAD trial. Believe me when I say that it was not the outcome I wanted to see, but it is the outcome we have to use in our decision making.

If you are in Northern CA, UCSF will be testing the DCFPyL scan, which so far is the best. I too am impressed by the rate of advancements we are making in treatments. Hopefully, the new spending bill will bring treatments into clinical trials more quickly.

Compiler,

I had 26-30 lymph nodes removed in my iliac region during my surgery in June 2015. 4 were cancerous (3 on right side, 1 on left side)

Since the PSA is back up, I don't know where the cancer is, just that I still have it--thus the reason for the new C-11 Choline scan. I am guessing it has moved to another region--but if it is still in the iliac region, but now in organs or bones instead of in lymph nodes, then obviously I should have started ADT sooner. I am making a bet that it is somewhere else and is in the lymph nodes in that "somewhere else" region, and therefore will be a candidate for surgical removal.

Tall Allen,

Thanks for your best wishes. Obviously, I am not a doctor, so I am relying on the doctors I have trust in to treat my condition. Whether this is the best strategy is certainly up for debate, but I do understand the risks on both sides, and have made my decision accordingly. Look, nobody lives forever, and I am accepting my fate whatever the outcome. I would just rather give this option a go rather than go immediately to hormone therapy (which also means lack of sexual function and from which the standard therapy outcome is a given--that is, death in 5-6 years). I am aware of the TOAD trial, but I also know that none of the people in that trial have employed the same strategy I am using. As you point out, this is part clinical trial for Kwon--so at least someone will benefit no matter the eventual outcome. Hopefully it will be something that helps others make the proper decisions for their own medical situation in the very near future.

Gary said...
Typical systemic treatment for a cancer of this type will consist of chemical castration (hormone therapy), followed by treatment for castration resistant prostate cancer, followed by chemotherapy. Average life span would be about 8 years with this treatment...

Each time I undergo surgery my PSA count is essentially setback to zero--this "buys" me an additional 21 months of life

I also try to buy additional months, maybe years, of life and add these to the 8 years of systemic treatment. However, instead of surgery I prefer SBRT/CyberKnife. As long as the PSA is almost undetectable I think there is no need for ADT. Applying WW for the micromets.

George

One final note: I am still extremely happy with the prescribed course of action I took.

My chemo, using cold cap therapy (penguin caps, though dignicap or paradox or artic caps were also considered) has been a piece of cake as icing hands and head and feet during the process is grueling, but my in-between side effects are non-existent--and I believe this to be because I have no large tumors, just small ones. Plus, as you can tell by the numbers, the results are outstanding so far. All of my doctors are top-notch now and are giving me an estimate of another 8 to 10 years of life despite my 7 week PSADT and early return of cancer after LRP and despite the fact that my LRP was more than 4 years ago.

My suggestion is that men realize than you can live a long relatively pain-free and side-effect-free life with advanced recurrent prostate cancer as long as you get sound medical advice and act on that advice.

Well, Tall Allen, as I said, both Dr. Eugene Kwon at the Mayo and Dr. Lam at Prostate Oncology Specialists agreed with your assessment, and both suggested ADT and the UCLA scan--which resulted in the additional chemo treatment regimen. Thanks to this, my results are excellent and I couldn't be happier with how this (and life in general) is going for me.

Thanks again for your sound advice.