Looking for referral to MD Anderson (out of state)
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Linda cannot remember if you mentioned Mayo in Rochester but they are just as good as MD in Houston when it comes to CC. Jut in case you can’t get MD.
Linda,
I live in Iowa and first went to the University of Iowa Hospital and Clinics. They have a large cancer center. I asked a doctor there how many bile duct cancer patients they see. To my surprise he told me they see 2-3 a year. I would find out how many cc patients Univ. of Chgo has.
My insurance had already denied going to Mayo as it was out of network/out of state. We had the referral coordinator at our local doctor’s office file an appeal which was based on the fact that Mayo sees a large number of cc patients and UIHC see’s 2-3 a year. The appeal was approved around 5pm the night before my Mayo appointment. The lady at the insurance company told me it would never have been approved if I had not already gone to UIHC.
It makes me angry that your primary doctor will not ask for a referral. If this is insurance from a job, is there a union or an hr office that could offer help or suggestions? I know that unions can often help. Can you change primary doctors?
Your experience with the local oncologist confirms my decision to drive 2 hrs to Mayo for my chemo. I really didn’t want an oncologist who has never had a choloangiocarcinoma patient.
I haven’t checked on other hospitals yet, and I’m sure that there are other hospitals nearby. I’ll explain a little about my choice for MD Anderson….
One of the things that I originally thought may have contributed to my CC was fertility drugs. My sister-in-law (2 years older than I am) was also on fertility drugs for a number of years. We took injections of high dose hormones in the buttocks. She also developed a rare cancer (fortunately not CC, but another I can’t remember the name of right now) and it was in the buttocks. She had a fast growing tumor the size of a softball that was originally thought to have invaded other organs (uterus, colon, bladder). Her Illinois Dr. at Northwestern Hospital said he would send a relative (if they had cancer) to MD Anderson. My sister-in-law had surgery 5 years ago, and upon assembling a large team needed to perform all the reconstructive surgeries they thought she needed, it was found that the tumor was encapsulated and just pushed the other organs out of the way. She did not need any followup chemo or rad. due to it’s encapsulation. All prior tests showed no signs of cancer cells, but after surgery, a biopsy of the tumor showed it was extremely aggressive and was definately a malignant cancer.
While my brother and his wife were at MDA, they were told numerous times by many patients there that they wished they had come there when first diagnosed. That my brother and sister-in-law were lucky they were there for their surgery. My sister-in-law just went for her last scheduled CT scan and has been 5 years cancer free.
I know that MDA has specialists in CC and by many accounts, they have been described as the best. Yes, there are other hospitals in the IL area that probably do have drs. that specialize in CC. I haven’t looked past Univ. of Chgo yet, but intend to. I thought that the Univ. of Chgo was a cancer specialized hospital too, but they do handle many other illnesses too. I just thought that a hospital that specialized solely in cancers, probably handled the most cases of this rare cancer, and may know the best treatment for me.
I don’t know if the fertility drugs contributed to my cancer or not, but it seems more than a coincidence that my sister-in-law also had a rare cancer. I think (and so does my brother and wife) that if the surgery had been done here, by someone not as knowledgeable in handling cancers, it may have been spread. If that tumor had been cut, she would have been looking at follow-up treatment too. It doesn’t do me any good to wonder if this is what contributed to it or not….I just thought MDA might be the best place to seek treatment now, or at least a consult to see what they thought as compared to my current Onc. I will also continue looking for other hospitals that specialize in the area also. Thanks for the Johns Hopkins suggestion!
Linda Z.
Just curious Linda, could there be other hospitals like John Hopkins that would be acceptable to your insurance company.
I’m trying to get my insurance and/or medical group to approve a referral to MD Anderson (or at least Mayo) for a consult and possible treatment. I am in Illinois and have an HMO which requires referrals for everything that is not done by my primary care physician.
I called my ins. co. who said that IF I could get a referral from a doctor, they would pay for it, but my ins. didn’t routinely cover out-of-state treatment. When I questioned my medical group about getting a referral for an “out-of-state cancer hospital”, I was told “we won’t make referrals to Mayo”. Even when I told them that my cancer was rare and wasn’t being treated successfully here, she just said they would not make a referral.
Anyone dealt with ins. not covering something and later had them cover it? Such as if a referral is worded in such a way that it then becomes “coverable”? I’ve e-mailed MD Anderson telling them about my ins. not covering out-of-state treatment, and asked about a consult. They gave me info that they say they’ve used with other ins. companies to have treatment paid. I just got this info. so I haven’t contact my ins. yet.
Trying to check all my options here.
Linda Z.
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