With rare cancers, information and support can be hard to find

Most any diagnosis of cancer is filled with worry and bad thoughts, but when the cancer diagnosis comes with the words that it's a rare cancer, the words are more than devastating, they're horrifying and nerve-racking.How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying? At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer." Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong. For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers. The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you." The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers. It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups. I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.Chemotherapy has never been and was not an option with ACC because the cancer is so relentless. It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there). What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect. Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.Les Mahler is a journalist, copy editor, song writer, children's story writer, photographer, and an adenoid cystic cancer survivor since 2007. He's on his third fight against ACC.