The new sixth edition of the Rein in Sarcoma Patient Starter Notebook is now printed and ready to distribute or download. If you are a new or recurring patient at the University of Minnesota Hospitals, Mayo Clinic or Children’s Hospitals and Clinics your doctor should have copies of the book in a week or two. Please ask them to give you one. This edition was edited by Elisabeth Will and has been updated by the doctors on our Medical Advisory Board.
If you are currently being treated somewhere else, you can go on the RIS website and download it or you can request that a hard copy be sent to you free of charge. Patients constantly tell us how valuable they find this resource so please ask for yours.
We are very pleased to announce that Connie Dow has accepted the position of Administrative Assistant. Many of you already know Connie as she has been a RIS Volunteer for many years. She has recently retired from the position of Director at Oak Meadows and is now going to help us further our sarcoma mission. You will meet her at some of the committee meetings, at activities and as the first contact for new volunteers and patients. Connie has had a lot of experience and will be of assistance to Rein in Sarcoma in many ways. Connie lives with her partner, sarcoma survivor, Allan Swartz and their new puppy (her other retirement project). Please welcome her when you see her.
Unfortunately gaining Connie means we are losing Laura Gossett who has served us in the position in many ways. Even though she will be spending more time on her family we are so pleased that she is still going to volunteer for us. Her particular interest is in supporting patients and their families and she will remain on the Patient and Family Support Committee. When you see her please thank her for the many hours of work she has done on behalf of all of us.
A few days ago I was sitting in my favorite hospital coffee shop breaking my morning fast (after a test) and heard two people walking by say: “Genes are everything”. Yes, they are, particularly in cancer.
We are all born with about 20,000 genes, and this is our “germ line”. Each gene has its location on the strand of DNA. Genetic testing is used to check this DNA strand for variants which might predispose to cancer as in some kinds of breast cancer. This testing is done with saliva, or a cheek swab or a blood sample. No doubt you’ve seen testing like that on TV.
Genomic testing is done to find the gene changes that have occurred during life due to sun exposure, or tobacco smoke among many factors, some unknown. Most of these changes don’t cause problems, but certainly the two mentioned do. Testing is done the same way.
Genomic profiling tests cancer cells for the DNA changes that have occurred just in the cancer itself. Testing reveals gene abnormalities that cause cancer growth, but it turns out there are many abnormalities in some cancers. This testing is not routinely done for three reasons: 1) It frequently doesn’t give information anyone can act on at this time; 2) It is very expensive (sticker shock is the word); 3) The routine process of testing the cancer in the lab after surgery destroys the DNA in the cancer so this tissue is now not usable for this specialized testing.