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Brand new with self-advocacy question


Lizzie

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Greetings All

I found out last week that I have a spiculated 10MM left lower lobe nodule. There is no family history of lung cancer but I smoked for nearly 30 years, am now 51 years old, I quit 1 year to the day of my chest CT, so likely high risk for cancer. I saw my PCP Nurse Practitioner today and she is hesitant to send me for a PET scan. First she was saying it ( the nodule) would require monitoring, then read the radiologist report which states " By Fleischner criteria , PET scan should be considered for further evaluation of this possible bronchogenic carcinoma." She then made some comments about if my insurance (BCBS PPO) would pay for the PET. We left with I would bring her the actual CT film on CD from the hospital.

I would have liked her to say 'let's schedule the PET', and since she didn't I am wondering the following:

Has anyone else had difficulty getting approval for a PET scan either by their provider or insurance coverage?

Has anyone had experience with a spiculated and/or 10MM nodule and possible treatment course/outcomes?

It isn't a good time for me to change providers as I have multiple medical issues (DM, CAD, HTN, Hyperlipidemia and Mixed Connective Tissue disease) so, I am thinking that self-advocacy for appropriate treatment/testing with my current provider is needed and I need some advice/information on how best to do so.

Thank you in advance for your time and attention to my questions as any information is appreciated.

Lizzie

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Hi Lizzie,

Sorry that things are looking like you have questions for us. Clear scans are always preferred.

I think my insurance was a bcbs when I was going through the early scans & such. I had an x-ray lead to CT which lead to a biopsy handled by a pulmonary doc who's office manager lied to me saying it wasn't done yet at 130pm. I called the hospital (at mngrs recommendation) & girl said it had been faxed at 10am. I asked her to send it to my GP, GP called me within 5 minutes to tell me non small cell squamous cell. GP then asked what I was going to do & I asked him to order a PET scan. When I had that I took everything to a cancer center over 90 minutes drive away under orders of a dear friend who had been through the same thing 9 years before.

They did more tests, Pulmonary function and medistinoscopy.

I did not have a single issue with my insurance company. Everything was paid for exactly as expected. The major difference I see is that my tumor was 5cm. Actually 5x4x3 so that is bigger than the 1 cm you seem to be looking at. I suppose that it could be wait & see at that size.

I will tell you that all of that was from about late January thru late March of 2011. I had chemo & radiation in May & June which gave me a complete pathological response. Surgery to remove the "skeletal remains of the tumor" and all of the bone it had touched - half of 3 vertebrae & 2.5 ribs - was done Aug 15 2011 and it got everything with clean margins. I have remained NED since and this past August I "graduated" to annual CT scans instead of 1 every 6 months. That's what happens when you get to the 5, yes FIVE year mark!!

Sorry if that sounded too happy. When you spend way too much time reading all of the bad stuff, the good stuff feels so happy. I hope you get some happy news too!!

If my insurance wasn't bcbs it was United Healthcare.

Good luck & feel free to ask any & all other questions!!

Take care,
Mary

Sent from my SM-N920V using Tapatalk

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Hi Mary

Thank you so much for replying. Congratulations on achieving 5 years, that truly is good news. Your signature outline of DX and TX, along with your post has been exactly what I needed, a not too clinical outline of what I might expect and in what time frame.

My nurse practitioner called me today and said not to bring her the film and that University of Michigan will be calling to schedule a PET scan! Cool beans. Maybe she has not treated a lung nodule before and was simply unsure of how/when a PET is needed? 

I am so glad to hear that a 3 month wait before starting chemo and/or radiation has a positive outcome. I just started a new job, I am the only wage earner for my family and will not have any paid time off for 3 months, so if this does turn out to be cancer and require sick time I would be SOL. I am relieved and hopeful, thank you.

Sending you purple sprinkles of gratitude (but the PINK ones are MINE!)

Lizzie

 

 

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I'm so glad to hear you are going to a cancer center. I was diagnosed with stage 4 October of 2015. I have had some issues with my insurance but my Oncologist did a peer to peer conference with the Doctor from the insurance company and it was always approved.

I'm of the opinion that everyone needs to advocate for themselves. We have wonderful Doctors who are experts in medicine but only you are  the expert of your body. Only you knows what "normal" feels like for you. Any variation from that is significant. In your initial message it sounded like you had the intuition that the PET was a good idea and you were right. Always believe your intuition and your body!

It sounds like yours is in an early stage.  Even with a stage 4 things are going well, thanks to the marvels of modern medicine. I wish you the very best!

How about gold sprinkles of fairy dust to go with the pink and purple?

Lydia

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  • 4 weeks later...

Lizzy,

Sorry for missing your original post.  My wife and I decided to take advantage of a last minute cruise and our internet connectivity was spotty.  So to your questions: problems getting a PET and possible treatment and outcomes for a 10mm tumor.

Unfortunately to the former, yes I've had problems, especially since achieving Medicare age.  PET scans (actually most are now PET/CT scans) are very expensive.  While employed, my insurance coverage covered as many PETs as my doctor cared to order.  Now retired, I'll likely never have another.  Glad you've received approval for your PET.

A PET will reveal the presence of metastatic disease but it would not reveal what type of lung cancer. Of course, it is negative suggesting the absence of metastatic disease, you are in "tall cotton" covered with purple sprinkles.  If it is not negative, check back with us and we'll give you insight as to the road ahead (possible treatment outcomes and etc.) 

For now, all my positive thoughts are for negative results.

Stay the course.

Tom  

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