When I became ill with symptoms that resembled a chest cold that would not go away, I saw my primary care doctor. Since I am not a smoker, my doctor assumed pneumonia. To confirm his diagnosis, he ordered an old-fashioned chest x-ray. The radiologist advised him that the films revealed abnormalities, and that he should order a CT scan.
I got the CT scan the next morning and promptly received a call from my primary care doctor requesting a next-day appointment. Suspecting serious trouble, I asked Eddy to join me for this appointment.
My doctor didn’t mince words when he said, “It’s never good news when your doctor calls you for a next-day appointment. It’s my job to give you some bad news. Your CT scans show that you have cancer, probably broncio-genic lung cancer, meaning that it began in the bronchial tube. You have tumors in your lungs and in the lymph nodes in your central chest cavity. The number, size, and location of these tumors is inoperable. I have spoken with an oncologist, whose work I respect. He thinks that it is possible that he may be able to help you. I recommend that we refer your case to him.”
You do not hear these words from your primary care doctor — It was hard. I said silently to myself: “So this is what it sounds like when you learn you have a terminal disease and will die soon.”
My second thought was: “I wonder if this could be related to the melanoma that I had 30 years ago?” When asked, my doctor didn’t think so, but admitted there was a chance it could be melanoma once again. He concluded by saying, “It would be better for you if it this is melanoma, since there are new treatments that may be helpful with melanoma.”
While I don’t know a lot about cancer, I know that different types of cancer have different courses, different treatments, and different probable outcomes.
We made an appointment with the recommended oncologist and decided to follow him, at least temporarily. Most important, he oriented all efforts toward identifying the specific type of cancer we were up against. More tests, more specialists, and nearly a month elapsed before we were sure the cancer was metastatic melanoma with the BRAF mutation. My oncologist proposed a first-line treatment with high-dose Interleukin-2 and referred me to his associate, who has more experience with melanoma treatment. I appreciated this referral, but was not yet willing to accept it.
Here’s the thing: advanced cancer is deadly, and different forms of cancer require different treatments and different knowledge. I wanted an oncologist with years of experience in treating metastatic melanoma, and a hospital staffed with people experienced in reliably providing the recommended treatment.
Fortune smiled. A person from my Quaker network, who had successfully received the same recommended high-dose Interleukin-2 treatment approached me and recommended a local oncologist that she follows. I felt bad about rejecting the referral from my oncologist, but my friend’s oncologist has been doing research and practice in melanoma treatment since the 1980s. When I cross-checked his credentials on the Internet, he seemed to have just the combination of experience and wisdom that I was seeking.
The initial visit with Dr. Curti confirmed my impressions. He is a melanoma and renal cancer specialist, deeply experienced in the high-dose Interleukin-2 treatment, certain of the treatment protocol, and backed by a trained team at Providence Cancer Center. His interpersonal skills and communication style are impeccable. I decided to follow him at that meeting in late January, 2014.
After successful completion of the difficult treatment regimen, involving six weeks of hospitalization and a very tricky protocol, I have the highest respect for Dr. Curti and the Providence Cancer Center team.
Stories of cancer treatment failure abound. Advanced cancer is always life-threatening and I recommend that you make your best effort to locate the most experienced, specialized oncologist that you can access. If you live in a rural area, plan on traveling to an oncologist at a major regional treatment center. Look for a deeply experienced team that has treated hundreds of patients with the identical diagnosis to yours. If it’s not possible to access the best oncologist for your type of cancer, perhaps you can at least visit one for a second opinion.
In researching her book Radical Remissions, author Dr. Kelly Turner, PhD., found that taking charge of treatment planning and choosing the medical team is one of nine things that distinguish cancer patients in remission from those who did not survive. Dr. Kelly recommends: Be actively involved in decisions related to your health care. Learn how to do your own research. Be willing to make healthy life changes, and stand strong when you get push-back from others around you.