Angels For Sue: Surviving Advanced Kidney Cancer

December 3, 2006:

Suggested Reading: There is a book entitled Incidental Finding, which can be obtained free of charge from the Kidney Cancer Association. It is a compilation of essays by physicians, persons affected with the disease, and other health care professionals that explains kidney cancer, how it presents, how it is treated and what new research is on the horizon to provide those diagnosed with better options.

I am attaching an essay from that book entitled, "My Politically Incorrect Cancer," by Sally Lalone. She dares to write what many think, but are afraid to say. It is 15 pages of her powerful experience of getting diagnosed, the impact to her life and family, as well her search for competent medical professionals who understood the disease. Sally is an excellent writer and as you read the essay I can guarantee that you will laugh and cry. I've since met Sally in cyberspace on the kidney cancer on-line support group and we've become friends. Her experience is quite similar to ours, but I do not write in as entertaining a way as Sally. Enjoy reading her colorful style as you gain significant awareness about renal cell carcinoma. Then, as a testament to Sally, my mom and all these fighters, please spread the word.

Download sallys_story2.pdf

Directions - click on the link above and print. These are pages from a book, two pages per 8X11 sheet of paper. The scanner started from back to front, so you'll have to reorder them to read it. Start with page 47 and ends on 72.

December 2, 2006:

The organization below is a part of a grassroots effort to raise awareness and funding for kidney cancer. It is not for profit and headed by individuals who have a very clear understanding of how clinical research for this disease gets funded through the government and privately.

www.ackc.org

Information Search: Many, like my former boss, Jody, and my friend, Stephanie, have begun an intense information search. Jody, who works at a medical school, has begun the search of the medical literature looking for the lastest information regarding treatment of advanced renal cancer and then validating what she finds with her colleagues. Stephanie is a distributor of nutritional supplements and she has worked with her network gathering information from the nutritional, alternative and complementary angle of things. Others have sent information that they have gathered, as well.

We have a binder full of all this information - articles from medical literature, contact information for experts. When we get this much information, the advantage is that we are able to identify patterns with names and therapies that keep showing up through the independent research. This gives us an indication that we know we are on the right track.

Talk to people, everyone you know, about advanced kidney (renal) cancer. Right now we are open to anything and everything. In time, we'll read it, analyze it and it will help us in our decision-making as we go to the next step.

Awareness: This disease should not happen to someone else. It is often a silent disease and when it does present, 30% of cases present in an advanced stage like our mom's did. If you have risk factors, such as family history of renal cancer, high blood pressure or smoking - talk to your doctor about appropriate screening. If you have unexplained back or abdominal pain or blood in your urine, see a doctor right away. When talking with your doctor about screening, if you have an x-ray that is in any way abnormal - even slightly - insist on a CT scan to confirm that everything is okay, for the most part x-rays are old technology and miss important changes inside your body.