PET scan?

[mibams]

On may 18 I had an orchiechtomy on my left testicle. The pathology indicated a 3x3 cm tumor that was predominatly Embryonal carcinoma and small parts of seminoma and endodermal sinus tumor. The tumor was confinded to the testis but was positive for vascular/lymphatic space invasion and negative for vein invasion.

The subsequent CT scan showed a small 3mm nodular density on my lung and a bit larger 5x9mm Lymph node (pericardial/juxtadiaphragmatic) near my heart above the diaphragm?. Both described as either non specific or too small as to be actively identified on the imaging report.

My AFP and HCG levels are back to normal and my LDH level is 317, the same as before the surgery.

My oncologist feels we should have a PET scan to identify the nature of the two growths. The insurance company denied the request saying the PET scan is expirimental. The oncologist requested I file an appeal which I did. The appeal can take up to 30 days to complete and I could still lose.

I feel like this whole process is taking too long as it is while there is a chance of things going wrong in my body. And I am Soooo ready to get past this.

My question is this...Has anyone here had any experience with the PET scan before chemo? (I am under the impression it will help decide the number of courses I'll need) Is it worth the time and resources to pay out of pocket?
How will any results affect future treatments?

Please share any thoughts you might have...

[ndboondockid]

I went through the same thing a year ago with a PET scan were the doctor had to make a couple of appeals to have a PET done. I was fortunate as the insurance company allowed the scan, we found that there was still active cancer, and I was then treated. After my treatment ended the first part of April my new oncologist requested a PET scan, so I thought here we go again and asked about what kind of paper work that I need to sign this time, and he told me that PET scans are no longer considered experimental for testicular cancer so my insurance company should cover it without question. So my suggestion is to look into the experimental tag that they have put on PET scans and see if there is a way to show them that this is no longer considered experimental.

[rlhawk]

I had two PET scans, which were critical in determining the state of my disease. One was before chemo started and one was after cycle two. My insurance company denied both originally, then agreed to pay for them after I appealed. For the second one, I paid out of pocket ($2000), because it was urgent, then was reimbursed months later when the insurance company finally made their decision.

[Apache]

after initial diagnosis, I had a PET scan which my insurance company (United HC) approved. the oncologist (who did not end up being my treating oncologist) had a reputation for using agressive treatment for TC and highly recommended the PET scan. she cautioned that many of her peers did not acccept it as an TC diagnostic tool but she did......she also said that it took an expert to read the thing. luckily it came out negative, only to have a positive CT a couple months later.

all in all, I'd recommend doing it if you can pull it off. the negative result made me feel better.

[tc2006]

I asked my oncologist whether a PET scan could shed light on the nature of some enlarged, but small (sub-centimeter) lymph nodes to determine whether there is cancer (seminoma) in them, and he said that they would be too small. - Is there a minimum size (e.g. 1+ cm) for a PET scan to be useful, or is it not used with seminoma, does anyone know?