Inoperable "huge" wrapped around heart, trachea...

[Hebbie]

Cat,

I have to comment that you seem to have the sh*ttiest, most uncaring, unkind, brash and heartless doctors I have ever heard of.

I am so, so sorry that you are having to edure this. This disease is difficult enough without feeling like your medical team has given up on you.

PLEASE try to seek an alternate group of doctors at another facility if you can. I don't understand the whole HMO issue since I have not had to encounter it, but it sounds like trying to save yourself from drowning with one hand tied behind your back.

Is there any way you can do some phone consults with some of the surgeons that have been mentioned above and use your fax machine to send them scan results or have your hospital send them over? MAYBE the challenge of your surgery would appeal to one of those aggressive surgeons -- What if your operation was one for the record books -- maybe they would take you on for free? It's worth a shot!!

[Guest bean_si (Not Active)]

Last Wednesday, my primary agreed to get me a referral to another oncologist. I went in Friday morning to speak to the "referal girl". At that time she had not even bothered getting my referal to the surgeon as she couldn't find him in her book - which was ages old. I said I found him on the insurance web site. She got the referral and told me she would get the other asap. That was last Friday. Primary's office closes at noon on Friday. I've spent all morning trying to get in contact with her. Only answering machine. I called the main line, told them it was important. They said they would have her call me. At 11 a.m., I began calling that line again. Busy. Busy. Busy. Maybe they took the phone off the hook.

I am trying and trying and trying.

IMHO, if you're ill and live in Florida you either better be lucky or live near one of the good centers in Miami, Jacksonville, Tampa and Orlando.

Cat

Almost time to go pick up brother.

[MayFrog]

Cat.....i'm feeling pretty good this week, so I'm sending you all my excess energy to help fight these o'mathoins (spelling? I can pronounce it but my Gaelic spelling skills are non-existent!).

Bless you, Cat.....I can't begin to understand your frustration and anger.

Keep posting...venting those demon thoughts can only be a good thing!

Mary

[Fay A.]

Cat,

Get their FAX number and Fax the request for the referral, detailing all of the preceding calls, trips to the office, etc. documenting all of your efforts to obtain the referral.

[BeckyCW]

Cat,

I hope you're having a good time with your brother visiting. I just thought I'd tell you this story... Although I know it's very different from yours -- I only hope it will give you more hope. Here goes:

Several years ago I met a mom whose son had cancer (diagnosed about age 3) and they had been told by a very reputable medical institution that it was inoperable and he would die. The mom said, "But what if you tried to take it out anyway? If you don't, he'll die -- So why can't you try? If he dies during surgery, at least we tried." They still said no way, that no one would operate on this. (The little boy had neuroblastoma, a childhood cancer, with an enormous tumor in his abdomen. I saw a picture of him during that time, and it was so big it was almost impossible to believe.)

Anyway, the mom didn't give up. Several expert doctors later, everyone was still telling her it was inoperable. Finally someone on the internet told her to contact a certain doctor in New York, who might consider the case. She called, and the doctor had just left for a vacation, his assistant said. The mom faxed a photograph of her son to the office. The assistant called the doctor at home, he saw the photograph, and he called the mom that night. He talked to her and said that the surgery would be extremely risky, but he would try. She asked how soon, and he said "yesterday - just get up here." They were on a flight the next day, I believe, and the surgery happened very soon.

This story had all happened about 3 years prior to when I met the woman at an even in Washington, DC in 2000. That day, her son -- then about 6 -- was playing with a bunch of other kids, and looked as though he'd never been sick a day in his life. All because the mom never gave up, in spite of experts (and they truly were) telling her she should.

So again... I know every story does not end up this way, by any means. And I know that you are tired and have such an uphill battle before you in many ways. But I did want you to know that miracles do happen, and that I hope you are one of them. I truly do.

Praying for us all,

Becky

P.S. I just realized this boy must be must be at least 10 by now, and I know he's fine because I would have heard from multiple people if he had relapsed. Here's to everyone defeating the odds.