But, as we all know, I'm now fighting on a different battle field. For the last 14 months I've returned to Cancer World, circa 2000, when I was first diagnosed with a rare head and neck cancer that appeared in a gland in my breast (Adenoid Cystic Carcinoma of the Breast or ACCB). My latest battles began in June 2012 with more tumors in my lungs, kidney and a rib, with treatments ranging from surgery, radiofrequency ablation (RFA), cryoablation and radiation. Then, in July, I had an about-face and a CT scan revealed that several lung tumors were shrinking or just going away. I'm trying not to obsess on the results of the next PET/CT on September 13th, but I'm sure you can guess how that's going.
In the meantime, I've been continuing my quest for answers. The Human Genome Project began 10 years ago, and the research to predict a person's predisposition for illnesses based on genetics has exploded.
The last decade has revealed the transformative power of using genomic information for the diagnosis and treatment of cancer.... Determining the presence of specific genomic variants also avoids the implementation of ineffective treatments.In 2009, just before I was diagnosed with leukemia, a Swedish study found that a fusion of the MYB and the NFIB genes cause ACC (regardless of whether is occurs in the head/neck or the breast). Since then, targeted therapies have been developed and several more are in the pipeline. Targeted therapies are not chemotherapy. They are agents that attach to receptors on cancer cells and turn off the growth, some even kill the cells. A few clinical trials have emerged for these drugs to treat metastatic ACC, but participation can mean significant travel expenses and harsh side effects, making travel even harder. It's a huge commitment to receive treatment with a study drug that is so new (no trials for ACC are more than two years old) and unproven.
Enter: Tumor Profiling. Because of the advances of the Human Genome Project, the price of genetic testing has been driven down. Cancer patients can now submit slides of their tumors (made during surgery when the pathologist determines a diagnosis) to an outside company to be tested for genetic abnormalities. The results not only tell people what cancers they are predisposed to, but what clinical trials are available for those particular cancers. A person can then decide which trial is likely to work, rather than just hoping that they choose the trial with the right drug that might save them.
As a friend recently told me, "Forget everything we knew about cancer treatment and research prior to ten years ago. Everything will now be based on a person's specific genetics. This is the future of medical science." He's right. The research I did on private companies identified by the Adenoid Cystic Carcinoma Research Foundation (ACCRF) does not pertain just to ACC patients, but to ALL cancer patients:
Foundation One -- They test for 236 known cancer genes. The cost is $5,800.
Personal Genome Diagnostics: They have two tests. One tests for 120 cancer genes. This test is $4,800. The other test is for 20,766 cancer genes and is $12,500. They are associated with Johns Hopkins in Baltimore.
Oncopath: They test for 159 genes. They wanted me to tell them which genes to test for, after which they would give me a quote.
Since research on genetics is happening so fast, I decided to wait to have my tumors profiled so that the test I choose will capture as many cancer genes as possible. It only takes a few weeks to get the results from these companies. All three have very nice staff and offer assistance with insurance coverage. For many cancers, genetic testing is covered. But the latest research on ACC and the need for genetic testing is so new, my best outcome would be to try and have this expense covered with out of network benefits.
Another newly discovered resource in my world is an online support group associated with the Adenoid Cystic Carcinoma Organization International, ACCOI. This all volunteer organization is incredibly helpful for ACC patients. Over 1,400 people have joined the patient website, sharing their experiences, support and suggestions. ACC is horrific because it is so rare and misunderstood. It doesn't behave like most head/neck cancers and for me, it's not classic breast cancer either. It's its own beast and because no known chemotherapy works, it's incredibly hard to find doctors who understand what it is, especially in remote parts of the world. This group is to me what Facebook is to so many others. I've "met" people from around the world and learned a wealth of information. I even learned of four other people who have metastatic ACCB. (You may not think that's a lot, but it is.) I also learned of some very interesting connections between ACC and the Acute Myeloid Leukemia I had. I'll save that for another post. I have yet to find anyone on the site who has had a stem cell transplant. As far as I know, I still hold the world record on that one.
As I face this next set of tests, I'm somehow comforted with all this new and overwhelming information. I feel like I have more tools, more weapons and more soldiers who are fighting at my side. I think that the old paradigm of taking decades to bring drugs to market has changed. This is hopeful for all patients with serious illnesses who are running out of time.
Genetic testing is no longer limited to familial connections. It goes way beyond baldness and eye color. No matter how much it looks like science fiction, genetics is providing a road map for survival, a road map for cures. It's all in the genes.
CANcer + HEALth = CAN HEAL