i suddenly moved to the 1% club

[basketballer]

just when i was home free after removing my large dermoid cyst...i had a 'routine' followup with my dr. about a month after my laparatomy where he in fact told me the pathology report showed a carcinoid tumor within my cyst. the frozen section test they had performed in surgery did not show anything suspicious, nor did he see anything out of the ordinary while in surgery. he thinks i am 'cured' now that the cyst is out but he sent me to an oncologist--he said he has never seen a case like mine since these tumors appear in the appendix normally. i went to the oncologist--he also has not seen a case like mine and is doing research (professor at ivy league school). the way they both explained it, i am not in the 1% but in fact, in something like 0,001%. the oncologist thinks i should remove the ovary to make sure nothing is left in there that can spread. i asked if there are tests that can be done now that can show if there is cancer anywhere else and he said a PET scan would, but that it's really expensive and insurance companies do not cover it for ovarian cancer! so, i may luck out and get it approved because my case is extremely rare but otherwise, no test. it's quite unreal. oh, and the oncologist does not take my insurance (he is the director of his dept. at major hospital center) so may not even be able to continue to go to him. gets you thinking, doesn't it? both dr's want to publish my case.

anyway, i doubt anyone has had a similar case, but if so, please post. also, is there anything else i should be asking for? different test? thanks for your input, as always.

[basketballer]

hi girls, thanks so much for all the helpful info. i will definitely get the test(s) done, one way or the other. the carcinoid syndrome wording might be the way to go. if that doesn't work, i can indeed take it up with my company and the benefits reps. that was a great suggestion as well.

i will keep you posted on what happens. thanks again.

[Gatsby]

Alright, The Battalion is armed and ready!  I agree with Mickie's tactic - baffle the insurance co!!  Also, I personally feel that if the dr.s are publishing this case and getting the notoriety, that you indeed should get some sort of kickback - in the form of free medical help, etc.  This is not over yet and we can keep fighting for you.  You are in my thoughts and prayers.  Godspeed
~Tascha

[xrayu2]

I agree with Micki, carcinoid tumors are different from ovarian cancer.  PET is a useful tool and can specs of potentially cancerous areas that would not even be picked for months down the road.  If you will appeal this or have them resubmit the request with "carcinoid tumor for staging"  I would bet that it goes thru instantly.  Technically, it should go thru if it stated "ovarian cancer for staging".  All staging PET are generally allowed by insurance, its the every 3-6 month deals that they have a rough time paying for.  With the PET, you should have CT if you have not already. The radiologists relates these to each other and it aids in a more complete reading. Good luck and try submitting as a staging.

[fungirl]

Who mdo these insruance companies think they are?  I have to go round and round with insurance all of the time because my daughter is autistic with a severe seizure disorder.  Insurance does not want to pay for anythig!!JERKS!!!  I also agree that the doctors should be doing this for free!  It's not like they are not going to be able to write it off anyway.  It's research for the love of Pete!!!  I will pray that the person in charge of your insurance company has a heart and that you will be able to get the test needed to help you out.  You will be in my prayers!!

[MickeyVicki]

Will your insurance company pay for the PET if the scan is done for "carcinoid syndrome" instead of asking for a PET for ovca?  I am sure that the doctor's insurance assistants in the office can be somewhat creative in the filing process and find a way to have the scan covered for you.

[gah_70]

You might also try talking to the insurance company yourself.  Has your doc talked to the insurance company himself, or does he just assume your insurance won't pay it?  Do you have insurance through your job, and if so, is there a person in your company who is a laison between the insurance company and employees?  If so, that's the first place I'd go!  

Good luck to you, and I'm praying for a successful recovery!

Gail :)

[dian07]

You tell those two doctors if they want to publish your case there will be ABSOLUTELY NO FURTHER CHARGES .....if your insurance doesn't cover the charges they will absorb it themselves...
One of my ex-husbands was a doctor....we had a family practice in northwest Iowa....I needed some medical attention at Mayo in Rochester, Mn......after days and days of tests and consults there were no charges......medical courtesy.....Bullshit...they can absorb your cost!!
Don't be nice about it either!  These guys are thrilled to get something out of the ordinary....they should pay you for letting them treat you! Just go kick the pedestals out from under those guys..remind them you and they are equals.....we all need eachother and they are not gods!  Jerks!
This kind of stuff really torques me!  THINK I'LL GO KICK SOME TIRES!
Peace to you and your family.
dian