Seriously? I didn't think that my first battle would be just to get an appointment with someone who can help me. It's been a lot of phone call after phone call and waiting on offices to do their part. I've had to send my records to the oncological gyn's office, but had to request, receive, sign and email back a med release form to have my records faxed to their office...wait, wait, wait, call, call to make sure the fax was sent (took like a week).
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Then the little gal at the gyn's office told me on the phone, "This is just your maternity record information. That isn't helpful." Actually, that is the only provider I've seen for the last 7 years and yes, it would probably be helpful, since it talks about all my girl parts and how well they work, and my PAP tests results are in there, and my blood tests, and mention of my BRCA2 and breast exams... it's useful information. It seems that they'd tell you everything that you need faxed over from your provider all at once...but after several times back and forth, then they tell you that they need a referral faxed over too. Another phone call, two or three phone calls (with provider and follow up to ask why it hasn't been faxed yet after 2 days). I do love my midwives and I know they have a lot to do. It's just been slow goin' and I wasn't expecting that it would take me so long just to get an appointment with the onc gyn.
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I have called my insurance company so many times too...about which providers are in-network, about what procedures are covered, about meeting my deductible and what my out-of-pocket max is, about what expenses are able to be used toward meeting my deductible. The biggest disappointment has been that I really wanted a particular plastic and general surgeon at Huntsman Cancer Institute. Weird enough is that the plastic surgeon is in-network, but he only operates at Huntsman and that facility is out-of-network. I would end up paying $4,000 more out of pocket if I go out-of-network.
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After so much back and forth over several days on the phone with the surgeon offices, and the insurance, I broke down on the phone with the plastic surgeon receptionist. My insurance had "false hope" suggested that I ask the plastic surgeon's office to write a letter stating that they would be able to provide the best care and for this reason they should be able to be treated as in-network for me. I thought it might be a long-shot, but called the plastic surgeon's office to explain my last-effort at being able to go to this surgeon who came highly recommended. The office receptionist told me that they had tried that sort of thing before and it never works and they really weren't interested in pursuing that avenue. It seemed far-fetched enough that I didn't push it, but sobbed to her a bit. So frustrating.... for the past few years, I just figured that Dr. Neumayer would be covered by my insurance. HOW CAN THE HUNTSMAN CANCER INSTITUTE NOT BE AN IN-NETWORK FACILITY???????????
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I do have an appointment now with an oncological gynecologist on Feb.9th. I'm compiling a list of questions to be answered and will bring Dan along so he can hear all the details and about my risk from the physician. He needs to hear it from the physician. I think it will help him understand how important this prophylactic oophrectomy is. The genetic counselor who told me I was BRCA2 positive recommended Dr. Soisson. She said he has expertise in the genetic mutation area. I realize there are a lot of physicians who can perform an oophrectomy, but it's somehow comforting that Dr. Soisson knows more about patients like me and my risks.
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Since I am still breast feeding, I'm not exactly sure when I will have the surgery. That's the biggest question in my mind. I didn't get James used to a bottle or binki early on and he doesn't take one, he just chews on them, so bottle feeding would be a bit difficult if I had to stop breast feeding early. I do want to get the surgery this year. Today I tried Lani's sippie cup with James. He gnawed on that too, but it seemed a little easier for his little 5 mo old mouth to hold onto. I'll keep trying, just in case that's his only way of getting nourishment besides his solid foods.
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Somehow too, I think there would be someone at the Huntsman Cancer Institute who was a "High Risk Care Manager" and could walk you through what you needed to do and who you needed to see and would take care of all of your insurance issues and would be able to work with you to give you a time line of when the surgeries would be and when the fills would be and how long this whole process would take. I am my own "care manager", so I am reading as much as I can and talking with as many people as I can. That's all I know how to get the best results for me.
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