So I had an appointment with my primary care Dr. in regards to the spinal scan and bone scan as well as CT scan not showing any Mets to bones( already have mets to lymphnods and lungs) I told him that I had posted the question on here about the possibility that scans did not show any mets and possible false scans.Many of you responded and stated that it was the case for you and suggested that I ask for a PET scan to rule it out all together. His statement to me was "google doctoring is not the way to go" I promptly stopped him and told him that there are a lot of intelligent men and women on this site that have been dealing with this god awful disease for quite awhile and that I felt he just insulted myself and the members of this site. After that our conversation went chilly to the next statement from him that was" Insurance is not going to pay for a PET scan when the other scans don't show any mets. So now I'm a little P.O.'d why does it always have to come down to the $$$. I will be addressing this with my oncologist at our next meeting .How do I approach him with the request for a PET scan with out getting the "google Doctoring" ? Thanks in advance ya'll
Primary Care Dr stated "google Doctor... - Advanced Prostate...
Primary Care Dr stated "google Doctoring on web sites"
its unfortunate that there are such financial constraints on medical care..
Dont you think your primary care doctor is out of his or her league opining
on metastatic prostate ca.?
Good luck.. stick with your oncologist..
Insurance will cover an Axumin PET for recurrence after RP (0,2) or RT (nadir+2). C-11 Choline is Medicare approved in some areas. C-11 Acetate is not Medicare approved. Sometimes Medicare will cover a NaF PET (for bone mets only) if the facility has a registry. FDG PETs aren't useful except in late stage PC. All other PET scans (e.g., PSMA-based) are experimental, and you can only get them on clinical trials, and even then, there is usually a charge (except at NIH).
I agree with your doctor that it's only worth getting if it can potentially make a difference in your treatment plan. They are expensive just to get because it would be nice to know. If they aren't large enough to show up on a bone scan, they won't affect any upcoming travel plans. Various reasons to get them are discussed here:
pcnrv.blogspot.com/2016/12/...
Thanks Allen !!!
You are a treasure !
Another "google doctor" to the rescue!
to redbank:
One of my relatives is a surgical technician who's been an assistant in approximately 600 operations a year (200 days X 3 per day) for 11 years for a total of 6,600. He has worked with many doctors/surgeons and when I ask his opinion about these doctors his reply is always the same, "that 99% of them are only out for the money".
btw Is that Redbank N.J.? If so, I spent a week there one day.
Good Luck and Good Health.
j-o-h-n Saturday 08/25/2018 1:52 AM EDT
hey john ,no it's actually the name of my old neighborhood here in Maine.
OH yes I remember that Neighborhood... It was a prize vacation on a TV quiz show... first prize one week in Redbank (Maine) second prize two weeks in Redbrank (Maine).
😃 😃 😃
Good Luck and Good Health.
j-o-h-n Saturday 08/25/2018 8:54 PM EDT
My oncologist doesn’t mind me doing research, my dad had a ct and bone scan at a little hospital showing no cancer, they did find a shadow in his pelvic area, the urologist ordered a pet scan with Auxium, new scan , it found cancer in his pelvic bones and lymph node, The quality of the test is the issue here. The ct scan was supposed to have been with contrast but they didn’t have him do The barium, So question all. Your body, your life. Fight the good Fight
I had the same experience regarding getting a PET scan. Based on my research I knew I needed it, but the insurance company initially said no. I also knew that these scans can cost upwards of $10K.
I became familiar with the term "self-pay option" where there is typically a lower cost if you don't have insurance coverage. I found a local diagnostic center not too far from where I live here in central NJ (pcmipetscan.com). They have the latest most powerful GE digital scanner they obtained several months earlier. One of only four in the country. I told them about not being covered. They gave me a much lower price then I expected, and I initially paid $200 out of pocket as a down payment. I am glad I did.
The center sent in the claim anyway. BCBS did surprisingly pay around $1600 out of what was billed, and I had no more to pay out of pocket. The Radiologist sat down with me at his desk, and showed me how detailed the results were. He did confirm several bone mets in the pelvis, as well as a hairline fracture from a fall on my butt I had in March 2018 while on vacation.
This scan and my MRI fusion guided biopsy resulted in my diagnosis of Stage IV PCa in June 2018. My journey has now begun. Now on hormone therapy. PSA dropped from 20 to 0.5 in 2 months. Will also be having robotic prostatectomy Nov 14 as part of clinical trial at CINJ.
I am so glad I found this forum. It has provided me with so much helpful information that has made me very knowledgeable when I meet with my doctors. Knowledge is power! We are each our own best advocate. Best of luck.
Could you share more about the trial? Thanks. Wishing you the best.
The trial I am participating in is being conducted at the Cancer Institute of NJ, as well as other locations globally. It is for recently diagnosed metastatic PC patients. Here is the link - cinj.org/clinical-trials/in...
Feel lucky with my doctor. He is very knowleable, but is always willing to listen. He doesn't pretend he knows everything. He appreciates that I've learned as much as I have, even complimented me on it. It makes his job easier. He doesn't have to explain basic things like "What does 'Castrate Resistant' mean?" I get more out of the appointment and it frees up time to ask questions that are not so easily answered.
At one appointment, I complained that my hot flashes were really bad and I was considering taking something for them. He asked "What have you read about that?" I told him that it looked to me like the solutions were worse than the problem. He said he agreed. Another time, I mentioned a study that he wasn't familiar with so he went on line right in the middle of the appointment and quickly read up on it! And guess where he looked. GOOGLE! Then he gave his opinion.
To everyone out there, don't ever let a doctor insult you for learning as much as you can. If your knowledge threatens them, that's their problem. To me that's a sign you might need a different doctor.
Redbank...this is your life we're talking about. You must be an advocate for your own health. Find a really good med oncologist that knows how to procure the treatment...tests...etc that you need. What your pcp said to you just pisses me off. Such arrogance in the face of a situation that is clearly traumatizing. Where are you? I see someone at Sloan in NYC.
I'm in Maine ,they do have a great program up here but I'm beginning to wonder if I am truly seeing it or just a little bamboozeled by the cancer.
Dana Farber in Boston
thanks Lombardi, got a meeting with oncologist in two weeks if I'm not impressed Boston isn't far from here at all.
Dr. Mark Pomerantz. Genitourinary oncology.
CT scan saw nothing for me and I had multiple mets. I dont know why they run CT scans. Waste of time and waste of a contrast injection tracer which is not good for the kidneys. It took the PET, MRI of Pelvis, and a bone scan to find out exactly where all my mets were located.
UCLA did my PET. Medicare rules of coverage are strict. Hospital doing the scan must be linked to the PET registry. Must have a good doctor to do the pre-scan papers, complete the scan before the deadline after filing the pre-scan papers, and file a doctor signed post scan report before the deadline which must state the doctors decision about changes to treatment as a result of the scan.
Doctors that give you wrong advice should be fired from your care team. When my Lupron failed, I talked to a horrible Oncologist at Kaiser. He said Dr Charles Meyers is a voodoo doctor. The KP oncologist offered me nothing, other than waiting until it runs amuck with pain symptoms and then staring Chemo. He said not to worry because "Kaiser covers hospice". What horrible advice. The worst. If I would have done what he said, I would have died 8 years ago in hospice.
This KP oncologist would not prescribe any more Bisphopinates for osteoporosis because he said there were no studies about side effects if used more than 4 years. I had already used Fosamax for 4 years. He said absolutely nothing about Zometa or other available bone drugs. I dont know where he went to school, but wherever it was, he didnt learn anything about prostate cancer or osteoporosis.
Kept looking for a good doctor. It took interviews with 10 different KP doctors before I found a good one. Although he had little or no experience with the drugs recommend, that doctor went along with the Dr Meyers drug recommendations based on the fact that the drugs were very safe and would do no harm. The fact that some of the drugs prescribed were off-label treatments for Prostate Cancer was not an issue for him. Even with the approved prescriptions, I still had to fight with an inexperienced pharmacist upon pickup of the estradiol patches because that inexperienced pharmacist said it was a drug only prescribed for menopausal women. I told him I work for Kaiser and I know Dr Steven Gray and supervise some of his projects. Dr Gray is president and on the top of Pharmacy operations for the Kaiser central drug warehouse. Stating that fact made this young inexperienced pharmacist tremble in his boots, because every Kaiser pharmacist knows Dr Gray is the most powerful person in the Kaiser Pharmacy world. This young pharmacist and his supervisor read and filed my drug recommendations report, and they finally handed over my 30 boxes of patches. These are some of the things I had to do to save my own life.
By the way, I got OUT of Kaiser, got a Medicare PPO "supplimental plan" and have COMPETENT care at Stanford and UC Davis. I can go anywhere I want under my PPO, such as UCLA for that PET.
I have a radiologist who not only read a scholarly article I brought into him, he faxed it to the rest of the practice! I've "fired" a number of oncologists for nor allowing me to be a part of the treatment plan.
I am on medicare with a supplemental plan. When my PSA started rising after primary treatment I asked my MO for an Axumin PET/CT scan. He said that I first had to have a CT and BS and both have to show negative for mets. I had both scans and both came back neg. One month later I had the Axumin PET/CT scan. No problems with coverage.
mcp1941 I just had a CT and BS, both came back negative. Do you mind sharing if the Axumin detected anything?
Axumin did NOT pick up any mets. MO started me Erleada
I had a Primary Care Physician ask me about 10 years ago, ask me, “Just who is managing your healthcare?” This on the heels of briefing him about things medically related which he did not know about, but should. I actually hurt his feelings when I replied that my Cardiologist manages my healthcare...... And, all things cancer related, my Medical Oncologist. He did not like me bypassing him..... I don’t think he liked me getting flu shots, pneumonia shots, antibiotics, weight advice, and referrals from my heart guy. Too bad. I go to the guy who I trust.
I finally, told him, “Doc, you are a Family Care specialist, and I appreciate that, but are you really read up on all specialities?” End of story. He retired a year later..... got me a new and much younger Doc, who does not have his feelings hurt when I go straight to the pros for what I need. He does not mind when he is not in say a scan decision making process.
Keep kicking the bastard,
Gourd Dancer
I was diagnosed with Gleason 9 PC while having a PSA score of 2.5 in early November. We thought it was early and they thought I had a good chance of dealing with it very effectively. I had a radical prostatectomy in December 2017. PSA was .58 at 90 days and 1.14 at 120 days. Starting seeing every Dr. Urologist, Radiologist, Oncologist, etc. Radiologist ordered an MRI which came back clean. I was talking on the phone with the Dr to review the results and brought up the fluciclovine PET which I had read about. Long story short, she agreed it was a good idea and ordered it. Had to fight with the Insurance company but they went to bat for me. Found 3 lesions--2 in the pelvis, and 1 in T11. We saved a considerable amount of time and did not treat the wrong area as I have no Lymph node involvement and did not need further treatment to the prostate bed. We zapped the 3 lesions and I am now waiting to see if (probably when) we need to add more treatments soon. I suggest you keep pushing for individual treatment and analysis and not accept generic answers for treating your body and emotions. In my case, the radiologist went to bat when the oncologist wouldn't. I am looking for a new MO while the radiologist is in control of my case. I want a team for me, not someone who is treating me for the insurance company or the convenience of themself. Each individual is different and, anecdotally, it seems I rarely hear about 2 people with the same circumstances and progression. Therefore it is very important to treat the individual. Evaluate the probabilities and help us get things done that will help or might help. Another observation of mine is that doctors are reactive by training and rarely proactive. I don't understand it. Why not work on preventing things from happening, rather than waiting?
Another PSMA scan Question...
Targeting Mets w SBRT- what’s your experience?
Why the need for an FDG scan in addition to a PSMA scan?
Tripple therapy - ADT+Lynparza+Xtandi
PSMA PET Showing No PSMA Avid Metastases Again 
