A quick study on how NET cancer can be managed by a commitment to organizing your life and communicating with your NET community
The Yellow Corvette
A woman walked into the local Chevrolet dealer with $60,000 cash in her purse. She is strolling around the lot when a salesman walks up to her and asks her what she is interested in buying. She says all her life she's wanted a yellow Corvette and she has the cash with her and is ready to buy this very moment. The salesman says he will sell her a blue, black, silver, green or gold one but he will not sell her a yellow Corvette - BECAUSE HE DOESN"T HAVE ONE IN STOCK and won't order anyone a yellow Corvette - EVEN IF THEY HAVE THE MONEY.
What should she do? SHE SHOULD GO TO ANOTHER CHEVY DEALER!
The moral of the story :
If you are being treated by a doctor who is not knowledgeable about carcinoid and other neuroendocrine tumors, doesn't want to become educated about the disease, or will not work with you and an expert to get you the best care available ... you need a different doctor!
If you have found a doctor who will work with you, do share him with others in the community.
Thanks to Dr. Eugene Woltering, Neuroendocrine Tumor Clinic, Louisiana State University, Ochsner Medical Center, Kenner LA.
Taking an active part; Many NET cancer patients have been sick or "not quite right" for years. If you're a woman, you've been told by more than a few doctors that it is emotional or hormonal and perhaps a visit to a "shrink" is in order and sometimes you give in to fatigue and disillusionment. Don't throw in the towel. The community will support you for as long as you need the help.
If you are lucky, your diagnosis will come sooner rather than later. Your knowledgeable participation is necessary. Don't sit in the back seat of your car!
Finding a specialist is tantamount to managing the disease.
Coordinate your team for specialized care for your circumstances.
We're as different as the stripes on a zebra's hide are from others in their herd.
Keep accurate records of your symptoms, scans, bloodwork, vital signs, and make certain you know when your doctor visits and follow up tests are due.
Medication compliance is a must.
Read authentic information on clinical trials, discoveries, and what's happening in the NET community.
Attend conferences when at all possible. If not, listen and watch them when they've been uploaded to the Internet - at least twice.
Join a support group, online or locally-based.
Keep in touch with others in the NET community.
Reach out to "newbies".
In Memory of our Friends - Deb Kilmartin, Co-founder, PhillyNETs
Melva Conquest, Natalie Tuttle, A.J. Catone, Shirley Jelinik, Bliss (Candy) Warner, Lynn Cohen and David Keithley
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