HealingWell
Search Close Search
☰

Scans

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/30/2021 3:40 AM (GMT 0)
Anyone have advice on how to get insurance to pay for Axumin or at least PET scan? I don’t understand why this is not standard protocol withadvanced prostate cancer. My husband had radical prostatectomy in April. They found in soft tissue, lymph nodes etc. Surgeon told us he probably did not get it all. We now are looking at salvage radiation but they would only allow pelvic ct. Pelvic ct found a spot on bone, lymph nodes and a spot on his kidney. We pushed again for Axumin since kidney is probably a second type of cancer. They denied again.
Posted 7/30/2021 10:28 AM (GMT 0)
You can appeal the denial, but you must be on strong ground based on your coverage. Who is your third party payor? Read the coverage to determine the circumstances that coverage is afforded. Then, if the denial is not justified you can file an appeal.

I have had to do this a number of times. Some successful and some not. But in each case I had a well organized appeal based on the exact coverage that applied. I also obtained a technical report from the doctors.

You know that he is metastatic and are aware of several locations. Will knowing more change the treatment direction? How is he being treated now? You know he needs SRT. Has he started ADT? If not, why not, knowing the cancer is systemic?
Posted 7/30/2021 10:33 AM (GMT 0)
They are telling us that it is not metastatic which I don’t understand. They said that he has no distant sprread, it is still regional… but how do we know that without the scan is my question! They are saying that the kidney is unrelated to the prostate cancer. He takes his 2nd injection of ADT today. He was supposed to start radiation this week but it has been pushed back until kidney is taken care of.
Posted 7/30/2021 12:34 PM (GMT 0)
All the definitions of metastatic cancer is that it has spread to other body parts from the original source. Treatment nuance is often stated as to whether the spread is local, regional or distant. But any spread is by definition metastatic. That somewhat regulates when certain scans are eligible for reimbursement by the third party payor.

The use of scans is also dependent on PSA. What is the PSA trend since treatment? Also please fill us in on the situation. What was his PSS history, why was he biopsied, what were the findings regarding positive cores and Gleason grades and score, location, treatment provider, age and insurance. With this information we can be more helpful.
Posted 7/30/2021 12:51 PM (GMT 0)
Wow, how do they know the kidney is unrelated. Prostate can become metastatic to both liver and kidneys , and I'm sure many other places, like bones and brain.
Appeal, appeal, appeal.
Posted 7/30/2021 1:03 PM (GMT 0)
There are PSA thresholds that need to be met before these scans can be useful. And then they will only find tumors larger than 2-3 mm. When you start ADT it will usually result in shrinking any tumors and reducing the PSA below the thresholds of the scan. Thus the Catch-22 of scans. If his PSA is less than 0.2 the scan is usually not precise enough to detect anything, so why do it at those levels? That is why the third party payors establish eligibility requirements in order to qualify for reimbursement. These scans are not cheap, average around $3-4 thousand. If your third party payor won’t pay and you want to self pay then call a provider offering the scan and see if it is worthwhile for him.
Posted 7/30/2021 5:01 PM (GMT 0)
How do you put all of that at the bottom of your post?
We are both teachers with Health advantage (bcbs)
Psa 11.8
Biopsy February 2021, 12 of 12 cores 70%, Gleason 5+4 9, T3b
April 27, 2021, Radical Prostatectomy, regional spread to lymph nodes, soft tissue, seminal vesicles
Asked for Axumin scan, insurance denied. Started ADT Firmagon, 6-17-21, psa .77
7-13-21 pelvic ct scan, Supposed to start 8 wk radiation, pushed due to ct scan findings: 5.7 cm tumor on kidney,
small spot on pelvic bone, several lymph nodes. Pushed again for Axumin and insurance denied. Radiologist Oncologist said it is still not considered metastatic and psa has to be higher than 1.0
I am in Arkansas.
Posted 7/30/2021 5:44 PM (GMT 0)
Thanks. Well very high risk diagnosis. With this you will need to be aggressive in treatment. I suggest you also look for an excellent medical oncologist that does a lot of advanced PCa work.

With cancer outside the surgical area it may render salvage radiation less effective so that should be considered. Particularly with the possibility of distant Mets. Often high risk men with spread use taxotere early in treatment. But that is the domain of the medical oncologist not the urologist. Engaging an oncologist also may provide more ammunition for your insurance for the scan.

How are they approaching the kidney? Will it be biopsied? If he does SRT with the lymph node situation I would make sure the pelvic nodes are radiated.
Posted 7/30/2021 6:37 PM (GMT 0)
Also, when insurance denies a claim you should receive the exact reason based on the specific coverage and condition. Have you received both denials in writing? Until you have the specifics you won’t know what or how to appeal. I suggest you contact the insurance company and request the specific denial information and the method to appeal.
Posted 7/30/2021 9:07 PM (GMT 0)
From what I have read, it is very rare for Prostate Cancer to met in kidney. I guess that is why they are assuming it is not related. We are waiting to hear from Urologist to see how they want to proceed with Kidney. They will either take out kidney or part of kidney. I guess radiation is put on hold until he heals from kidney surgery. There is a urology oncologist at CARTI in Little Rock. I really want him to switch to him, but he is not convinced yet. He really likes his urologist. Thanks for all your advice. I will call insurance and ask those questions. Thanks for taking the time to reply.
Posted 7/30/2021 9:17 PM (GMT 0)
What do you mean by third party payor??
Posted 7/30/2021 9:18 PM (GMT 0)
“How do you put all of that at the bottom of your post? ”

Go to the forum menu and select My Profile. Under Edit Profile, there is a box at the bottom to enter signature information where you can concisely add a description that is shown at the bottom of posts.
Posted 7/30/2021 9:25 PM (GMT 0)
He doesn’t have to switch doctors. He can consult with a medical oncologist to get an assessment from that perspective. Your husband is the leader of his team and he can have multiple doctors advise him based on their individual specialty and then make his own treatment decisions. He has a urologist. He has a radiation oncologist. I am suggesting he also consult a medical oncologist. That is what I did in my own high risk situation. In my case the MO confirmed that my treatment direction was sound and explained the types of circumstances that would indicate when he should become involved. My RO directed my radiation and then continued to se me for five years for follow up. Long term I have retained my urologist as my primary and seen him on a quarterly basis, but I have never had a recurrence.

Most often PCa Mets are bone and lymph nodes. They can go to the lungs and brain and other organs, but that incidence is far less than to the bones and lymph nodes. I don’t remember anyone of the forum that had Mets on a kidney. If he had a 5cc prostate cancer tumor somewhere else I would expect a greater expression of PSA based on the volume.
Posted 7/30/2021 9:29 PM (GMT 0)
Tad, third party payor in your case is your BCBS insurance company. For some it might be the VA or Medicare, or a labor union. The three parties are the patient, the medical provider and the organization paying most of the bill. Thus the term third party payor.
Posted 7/30/2021 10:47 PM (GMT 0)
That is awesome and encouraging that you haven't had a recurrence. I haven't thought about just adding the other doctor instead of replacing. That is a great idea. Thanks again for all the info.
Posted 8/1/2021 6:51 PM (GMT 0)

Hello, "Team TadD" ----

Mindful of you both, I am a teacher, as well --- and have taught for over 30 years.

My grandfather, father, uncle, and I have all been diagnosed with prostate cancer --- representing three generations of my family.

I was diagnosed, out of the blue, at the beginning of a new school year. I was just in my 40s ...

By the time all the initial diagnostics, biopsy, and subsequent scans were completed, my PSA was skyrocketing quickly --- to over 100. By that time, both my lungs had become infiltrated with renegade prostate cancer nodules --- scattered throughout both my lungs.

I started out with my urologist. A HUGE pivotal moment occurred when I added an oncologist to my team. He opened new doors, beyond belief, in terms of proactive and aggressive treatments.

I was his first patient to embark on what was called "the early chemotherapy plan" --- when clinical trials showed a benefit for that approach.

After that, I was his first patient to get started on ZYTIGA --- which was a new breakthrough medication a few years ago. I remain on this medication today.

In time, I also pursued a 9-week series of radiation treatments.

Along the way, I also added Dr. Kwon to my team --- and I drive up to Mayo Clinic in Rochester, Minnesota ----a couple of times a year ---to consult with him and update my scans. Dr. Kwon is a noted researcher and a urology oncologist at Mayo Clinic.

My family, friends, teaching colleagues, and students have been tremendously supportive. I was diagnosed in 2013, and have continued to teach, volunteer in the community, and stay active.

My lesson learned? Seek out a great medical team --- don't settle for anything less --- and get top-notch experts on your team. You're the coach --- and you want THE best players on your team.

Take things one day at a time ---- stay determined --- remain resilient --- & focus on the positives along the way.

It isn't always easy --- but HOPE is a powerful thing. I hope you find hope in my story today!

Rally your support team ----- get your silver sword & shield ready --- draw inner strength from within ---- and forge ahead onto that battlefield with everything you've got.

Stay focused on tomorrow --- and keep setting new goals.

I saw an athletic t-shirt the other day, on one of my trail walks, that was emblazoned with this message, that I now share with you both today:

# BELIEVE IN THE FIGHT

That rallying message really resonated with me!

Stay in touch with us here --- let us know how you're faring.

We're all here to rally around you, going forward! No one here fights alone!

With all my very best, from the great MIDWEST ~~~

CYCLONE ---- # Iowa State University
Posted 8/1/2021 9:07 PM (GMT 0)
Wow, what a great story. Thank you so much for sharing. I am so glad that you both shared about adding the medical oncologist. I am definitely going to call tomorrow and get an appointment. My husband is not completely on board with it yet, but I brought it up last night and I am going to have him read your posts today. I think these posts will encourage him.
So, they treated the lungs with chemo, and radiation on pelvic area? How does the cancer travel...?? through the lymph nodes?
Posted 8/1/2021 9:55 PM (GMT 0)

Yes, "Team TadD" ----

Embrace the idea of a medical TEAM --- you can continue to see your trusted urologist, but they can't oversee things like chemotherapy, etcetera, if that is needed.

Here's my team ... my original urologist, my oncologist (oversaw chemotherapy treatments), radiologist (oversaw radiation treatments) --- and then Dr. Kwon at Mayo Clinic ---- who weighs in with his expertise.

My "team" evolved, over time, as my treatments continued ... it wasn't an overnight process.

I wish I had added my oncologist even earlier --- he has been a GODSEND to me. You have everything to gain, by adding an oncologist to your team.

Yes --- to answer your question ---- the ADT shots began shrinking the lung nodules, then I did six full-strength chemotherapy infusions, given every three weeks, over a total of eighteen weeks.

Some time later ---- 9 weeks of radiation, aimed at the pelvis, was another proactive step.

When I eventually met Dr. Kwon he said, "I am thankful to see your doctors adopted an aggressive treatment approach, from the beginning. I know it wasn't easy --- but it was exactly the right step."

It's all a steep learning curve ---- but you learn so much in the first few weeks and months, and then those trusted bonds emerge with your doctors, and they will lead you FORWARD!

I can tell you are becoming quite educated, already! You are rallying ---- and getting a battle plan in place!

You have ALL of my encouragement, best wishes, and SUPPORT!

We're all here to walk alongside BOTH of you, "Team TadD" !

CYCLONE ---- # Iowa State University
Posted 9/3/2021 1:46 PM (GMT 0)

Hello, Team TadD ----

September is here, and fall is around the corner ...

Just circling back to you both, wondering how you are doing ---- and how things are going?

I know you were looking at the possibility of additional scans --- but also some proactive treatments, in the months ahead.

We've got a TEAM right here --- and we're here to encourage you, support you, and share first-hand experiences with you, as needed.

Hope you are doing your best --- no one HERE fights alone!

# Believe In The Fight!

With my best to you, Team TadD ----

CYCLONE - # Iowa State University
Posted 9/3/2021 9:45 PM (GMT 0)

TadD said...
Wow, what a great story. Thank you so much for sharing. I am so glad that you both shared about adding the medical oncologist. I am definitely going to call tomorrow and get an appointment. My husband is not completely on board with it yet, but I brought it up last night and I am going to have him read your posts today. I think these posts will encourage him.
So, they treated the lungs with chemo, and radiation on pelvic area? How does the cancer travel...?? through the lymph nodes?

I had Chemo and Radiation to my hip, with Lupron. It has come back to my hip and I did do ration again, so far so good. My lungs have been clean since 2017, all this under the care of a Medical Oncologist.
Good Luck!
Posted 9/5/2021 1:12 AM (GMT 0)
Good to hear from you. We switched doctors. We found a Urologic Oncologist at CARTI. He removed the kidney and he is healing well. We are 10 days out. We have an appt. Tuesday for Pathology. He also referred us to a medical oncologist but we have not had an appt. yet. The pet scan was denied again by insurance. We plan on continuing the ADT and starting radiation as soon as he has recovered from Nephrectomy. His new doctor told us that radiation really needs to be done 3-4 months post prostatectomy. We are past that now, so hoping he recovers quickly. I look back at your story and it gives me hope. I'm glad I have it to refer back to when discouraged. I do feel like we have a new plan and we love the new doctor. Thanks for checking on us.
Posted 9/6/2021 11:10 AM (GMT 0)

Hello, TEAM TadD -----

Appreciative of your update ---- hope you are resting and recovering after the kidney surgery. Hope each day finds you a little better! Recovery thoughts and prayers sent your way ...

Sounds like you are assembling a great medical TEAM ... including a urologic oncologist. They bring a specialized insight --- and that's important.

It sounds like you have new assessments & consultations soon. We're here to support you and encourage you along the way.

Ask questions along the way --- we have many members who can share insight and treatment experiences. It's amazing what we can learn from each other.

Above all else, it's helpful to know that no one here fights alone. We all walk alongside each other ...

My favorite quote from your update:

"I do feel we have a NEW PLAN and we LOVE THE NEW DOCTOR."

I was so thankful for you when I read that! Getting that great medical TEAM in place is invaluable --- it doesn't happen overnight --- it's a step-by-step process --- but your TEAM is already there for you now! Sounds like you've got a referral in place, too, for a medical oncologist. Great to hear all this!

Let us know how your next consultations go ---and how you are faring!

My best to TEAM TadD ----
CYCLONE --- # Iowa State University
✚ New Topic ✚ Reply