Hi, I'm finally starting to swim up and out of the shock cloud of my diagnosis in July 2019. I put background details in my profile, hopefully not too much!
I had 6 mets on diagnosis. My Dana Farber team wants to add SBRT to my Lupron / Apalutamide - but clinical trials found benefit in up to 5 mets so insurance denies coverage. My radiologist says no biological difference between 5 and 6, but insurance won't budge.
Any input from this smart crowd?
THANK YOU!!
"but insurance won't budge"
Well, I certainly have input on THAT, but it can't be printed without censoring.
I am not too concerned about doing SBRT on my own few spinal mets quite yet, because there is no apparent immediate threat of pain or any other symptom, and my inclination is that the systemic treatment will either work well, or will NOT. With hormonal therapy, the mets will stabilize or regress, or they will NOT.
My personal opinion is that either way, the only reason I will absolutely want locally-directed treatment to the mets is because they are actually causing me problems. This is an opinion ONLY, not advice, and not based in any science or study. But frankly, if my mets are not growing, spreading and bothering me, I don't feel a need to confront them individually.
My opinion is that PC is intrinsically metastatic, whether we employ technology that can actually see the mets or not. Treat systemic diseases with systemic treatments. But that does not mean there cannot be a benefit to finding and nuking that which we CAN see. I'm quite sure there CAN be a benefit, just not sure there ALWAYS is one.
Thanks Noah
For an alternate view, and this is anecdotal, my one bone met to the L5 vertebrae was "resolved" after EBRT. Confirmed via Pet/Axumin and CT as recently as February 2020.
I have no doubt that a local treatment can eliminate the expression of cancer at that location, and provide potential benefit... just doubts that local treatment ever really beneficially eliminates the cancer altogether.
There is also no doubt that there can be a psychological advantage to attacking cancer where it is seen and reducing the visible expression of cancer. Does that good feeling mean I will therefore live longer?
So treatment directed at a specific place, whether to the prostate or elsewhere, can be a great help in resolving any symptoms that might occur. But if I zap the mets in my spine right now, before they cause me any problems, it doesn't seem assured that such action is definitely going to slow overall cancer progression and prolong my life. I have my doubts.
You are right to have your doubts. There's nothing curative or life-extending about treating bone mets in this manner. My hope is to slow down the beast.
Actually, they found benefit in only up to 3 metastases on a bone scan/CT:
pcnrv.blogspot.com/2018/09/...
Even if it does not slow progression, there is another benefit to treating the prostate. Down the road, the cancer there may cause urological difficulties that may be avoided with prophylactic radiation. To get insurance approval, you would have to attest that the cancer there is already becoming obstructive - getting up several times a night to pee, stream starting and stopping, occassional blood in urine, etc. Discuss this ploy with your urologist.
Ok I will thank you
Welcome aboard... its a crying shame that you have to debate 5 or 6 mets to qualify for insurance. How in humane. I know the cloud of which you speak . It followed me my first three years with pc . Felt like Lionel in the peanuts cartoon . Not part of the smart crowd. You will climb this peak . Good luck 👍
Thanks whimpy. I’m jumping into the struggle, we’ll see where it goes!
An away we go ... be well !👍
Since you said the insurance co. won't budge, I assume you already went thru a peer to peer review between your doctor and the co. medical staff?
Yes we did. Cigna contracted the review to eviCore. Then we submitted a written appeal but nada. My radOnc is Paul Nguyen. He has been on the speaking / conference circuit touting many benefits including an immune system response.
Thanks for your response Hoping.
Insurance controls our gate, they control the meds and decisions . Luckily I have Medicare with United healthcare and they have been fantastic, no issues yet.
Sounds like the peer review should be named EvilCore. With this disease I try to find humor in most things. Life can be too serious.
We’re here for you. All the best!
Mark
That’sa good one thanks Mark. Humor is so important in our lives. Maybe my next letter to them will have a Freudian “evilCare”
Hi PeakClimber,
As for Peak, were you referring to the Fells Peaks? Just kidding, I'm also a Dana Farber specimen.
I see you're working, so probably have company plan sponsored health insurance. Do you know if the company pays the claims directly?
I've added chemo to my treatment, which was not SOC for my situation, and my company plan sponsored insurance payed the claim.
Like you, I switched hospitals - Lahey Health to Dana Farber. Although, I'm going to have Dr. Matthew R. Smith from MGH to review my current Dana Farber treatment plan...
Hi Dark great to connect with a local! Hard to find peaks in the Fells isn’t it? I went Lahey to MGH to DFCI. I stayed with Lahey too long even though I knew somehow that I was receiving bad advice.
PeakClimber - Well, based on my singular experience, it depends on where your mets are and how creative your radiation oncologist is... he or she could advocate for radiation therapy for pain using SBRT techniques. I'll use a quote here: "There are no clear guidelines on stereotactic body radiotherapy (SBRT) use. However, it may be indicated over external beam radiation therapy (EBRT) in specific instances of bone metastases, specifically vertebral, from certain radio-resistant neoplasms. " I was a good-enough candidate, as my biggest mets (I've got, er, a lot of indications) were in my spine C2 and T4....she was able to get approval for 3...I guess I got the left femur SBRT for free.
It seems like we need to adjust our appeals approach. Thanks for the great input.
Or just how your doc writes up the need for treatment. If asked about pain, just nod. I was confused as heck when the RO kept on prodding me and recommending treatment for pain. Well, I was young and naive then and didn't realize her intent until later. She was clearly concerned that my C2 tumor would kill me/paralyze me and wanted to use SBRT techniques (higher, focused dose) but didn't want the whole SBRT approval path, unlikely because of my tumor load. She trusted her diagnosis and treatment plan and went with the expedient route of suggestion.
Not that you will find that in any of my treatment paperwork. It only says "treatment for bone tumor pain." So I could be completely wrong. 
Greetings PC..... best site to be..... Good info and Great people.... Keep working out.... I would join you but I reached my Peak long long time ago.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/12/2020 9:04 PM DST
Intro- New to Group
PSA rising a concern? Mets to bones, livers, lungs and lymph nodes
New Hip Pain: Muscle or Met?💥 
Welcoming good advice
My cancer has morphed to treatment-emergent small-cell neuroendocrine prostate cancer.
