Hope is an emotion greatly valued, and I would say even necessary, in the cancer community. But hope is something doctors were, and are, unable to give me. How I found hope on my own is my story.
In 1980, when I was 45, I was diagnosed with Ocular Melanoma. Yes, cancer in the eye (in my case the back part of the eye). I had never even heard of such a thing, which is not surprising since it occurs only in 6 out of 1 million people, and is considered an orphan disease. The diagnosing doctor said the standard treatment is to take out the eye, and asked whether the next Thursday would be a good day to do it.
No options, no hope. Thus began my new career of dealing with cancer. I refused the doctor's offer of an appointment, and instead, my husband and I went to the library. After a great deal of library research, and consultations with other doctors, I discovered that no treatment could promise a "cure" (prevent metastasis), I refused the standard care, and decided to do a treatment that was considered experimental (photocoagulation—a form of laser). All was quiet for a while, then 8 years later, the tumor started growing again, and taking the eye out was once more recommended, this time strongly so. I updated my research only to reaffirm that no treatment guaranteed anything, and so I selected a different experimental treatment (brachytherapy—a form of radiation). Ironically, now that is accepted as one of the standard treatments. The tumor in the eye is either dead, or has remained dormant since 1988. I saved my eye, although my vision in that eye is severely compromised. Nevertheless, it was the realization of a hope to keep my eye, never offered to me by that doctor.
No doctor suggested or advised that I be followed carefully for the rest of my life for metastasis. I, on my own, reasoned that there must be a danger of the cancer spreading. I went to a medical oncologist to ask that this be done; he agreed, and I was scanned annually. Once again I made my own medical decisions, this time on the basis of common sense. Twenty-two years later cancer was discovered in my liver as a result of one of these scans. This event immediately rendered me Stage 4 with a six-month prognosis. That was in 2002. Obviously, I have survived a good deal longer than 6 months.
One year after this I was diagnosed with a Cutaneous Melanoma, another primary, independent of Ocular Melanoma. It was excised, and as far as I know, has not metastasized.
About 50% of Ocular Melanoma primaries eventually metastasize to other places in the body. When that happens the outlook is grim. Not only is there no cure, there is no accepted treatment, certainly no effective treatment. In my search for help, I have several times been turned down by doctors who say, "Yes I can do this procedure [surgery, radiation, etc.] but I won't, because it won't cure you," even though it might prolong my life. A further denial of hope.
Staying alive has been an uphill battle, but I am very much still alive. I feel pretty good; I do whatever I need to do (which, since I am retired, isn't too demanding) and almost anything I want to do; I enjoy my husband, my children, and my grandchildren; I enjoy gardening, movies, books and friends. I am living a life alongside fighting cancer.
Since there is no protocol for treating Ocular Melanoma metastasized, there were, and still are, no "rules" to follow. Seeing that my doctors had no idea what to do, and that some of them thought it wasn't worth doing anything at all, I took matters into my own hands. I started to collect as much information as I could about my disease, joined a listserv of people with OM, searched the medical literature, became familiar with relevant experimental research, perused available clinical trials, and obtained consultations with researchers in this field.
I soon realized that no one physician or researcher is familiar with all the different pioneering efforts going on, but each is an expert in his/her own area of investigation. It became, and still is, incumbent upon me to sort these out while seeking advice from these experts, to assess which is the best treatment for me to seek next, then to find a physician who has the expertise and willingness to treat me. In this way I have taken control of my own medical care in the area most threatening to my life.
I now have tumors in many parts of my body—liver, lungs, peritoneum, abdominal wall, etc. I have had a multitude of treatments--surgery, immuno-embolizations, Cyberknife, vaccine, anti-angiogenics, immune-stimulants, and more--most, but not all, in the context of clinical trials. Usually the treatment slows down the pace of cancer growth, or halts it for a while; sometimes the tumors even shrink a bit, but eventually the cancer starts growing again, and I am off researching my next step.
Since I have been doing this for almost 9 years, I find it is impossible to constantly sustain the level of raw fear for my life that accompanies a cancer diagnosis. Instead, this fear, anxiety, panic emerges only sporadically: when I await scan results, and after I get bad news. In between, the fear lurks at a subterranean level, allowing me to enjoy and treasure the life I have. Thus cancer has become, for me, both a chronic disease, and a job to which I must pay close attention from time to time when choice points arise.
Hope is certainly vital when dealing with cancer. When doctors could not extend hope to me, with the help of others, I have created my own hope.