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Sally
I was diagnosed in October, 1996. I live in New Jersey. My oncologists are Dr. Reiter, Dr. Schriebman, and Dr. Adler. They have added a few (3, I think) oncologists, and a nurse-practitioner, Denise, who worked under the oncologist who did my stem cell transplant, Dr. Andrew Pecora, of Hackensack (NJ) Medical University Hospital. Dr Pecora is the head (at age 45+) of the Cancer Center in Hackensack, and participates in trials, etc.
I have been very happy with both sets of oncologists, and couldn't ask for better care. I know there are other good hospitals in New Jersey (Robert Wood Johnson), but can't remember their names. I have also heard, from other IBC list participants, there are good ones in the Atlanta area.
If you have time after diagnosis (which I did not), you can research a hospital, and interview a doctor, and maybe even have time for a second opinion. Use the time if it's available. I wasn't that lucky. I was tentatively diagnosed on October 4, 1996, had a biopsy the following week, and sent to the Drs. Schriebman, Adler, and Reiter (SAR for short).
Because there was a holdup of approval for coverage, my treatment didn't start until October 30, 1996. During that time, I had my biopsy, had to deal with about 1-2 inches of water in my basement (thank the Lord for friends like my buddy, George); as well as fight the insurance company for authorization. My doctors' staff was doing a pretty good job, but sometimes having the patient call the insurance group speeds things along.
I think this country has many great hospitals that can help with bc and/or ibc. You may have to hunt and trust the recommendations given to you. What's good for one isn't always good for another.
Dr. Pecora now has associates, and I am not sure if he's taking new patients, but he is still following me. I am just learning that my doctors didn't really expect to see me around now (this is their thoughts from 1996), but I am alive and kicking.
I get chemo 1/week, and have to give myself neupogen shots the 3 days (1/day) following the chemo. But after each chemo, which I usually have on Friday, if I can schedule it early enough, (not later than 10:30-11:00 a.m., since everything takes a couple of hours) I hop in my car and drive about 7 hours (375 miles) up to New England and visit my Mom.
Other than my mom thinking I'm too skinny (I have gained weight on some weeks), every one thinks I look great. (Moms always think their children need to eat more).
Another good hospital area I just thought of is Boston. Dana Farber Institute is there, and Harvard, etc. Just be persistent. You are your own best advocate!! Speak up for yourself, and ask questions, if you don't understand something.
Sorry this is so long, and I got on my soapbox, but I'm just proud of myself (that's hard to say sometimes) for my tenacious spirit in battling this disease.
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