Bookmark and Share

Thursday, June 22, 2017

Adenoid cystic carcinoma: latest scan dancing

Scan dancing. Definition: the periods of time that a chronic cancer wearer undergoes scans and tests
to see if a)cancer has returned, or b)is there a new cancer lurking, or c)neither a nor b, just the new normal.
I had experienced increased pain in my left jaw this spring. Saying 'increased' is relative - pain in its various levels has been my companion since the 2006 radiation treatment. It is an acceptable trade-off and one that I knew about might happen when I agreed to radiation treatment to begin with. One morning in May, though, it was a whole different kind of pain, with the added fun of additional paralysis to my mouth. I had been told way back in 2006 to watch for increased pain and paralysis, as it might be a sign of osteoradionecrosis (ORN), meaning the jaw was dying due to the radiation it received way back then. I hustled in to the Head & Neck oncologist, who looked me over and sent me to a dental oncologist (did not know that was a specialty) for a look-see. The dental oncologist looked me over, said that ORN was not taking place, and agreed that I was not going to be their new project. I was nervous at the thought that I might be losing my jaw despite all the work I continue to do to keep it healthy (mainly keeping my teeth healthy so nothing needs worked on or pulled out). [Please note below what my plans would have been if I did have to have my jaw removed. Hope it brings a smile. -th] I returned to my head/neck oncologist, who ordered an MRI (already due for one in August, just made it a couple of months early). MRI didn't locate any critters, looked about the same as the one I had back in 2015. So the increased pain level is pretty much my new normal. Luckily, the paralysis has subsided, only a little residual drooping compared to what I was experiencing before). I try to not take too many NSAIDs by sidetracking my focus: look at pretty pictures, watch comedy, visit with my loved ones by phone and in person... lots of ways to get my mind off the pain. Work is really great now, with the library kicking into high gear to support the medical center's mission. I am grateful to have a job where I can add value to others' lives, even if it is small in the wide scheme of things. 

Visited my great dentist and her team today, and had more reassurance that all my choppers are doing fine. All of my healthcare team and I have agreed that I can watch the pain for another couple of months, and if it is still as big a deal as it is now, additional exploration can be considered then. For now, I am cruising and very glad I am not an oncologist's current project. 

Note: If I ever do have to have my jaw removed: the usual treatment is to take out the jaw bone and replace it with another bone, maybe a section of rib or one of the unimportant leg bones. That is way too ordinary for me. I would like to have a 3d printed jaw that I would wear on the outside of my skin like a member of the Borg. I want it to be studded with rhinestones and flashy as all get-out. Ideally, I would have one printed up for each holiday and season, and change them out like jewelry. 

Monday, February 27, 2017

Rare Disease Day 2017 - and this rare disease wearer is very grateful to NORD

The National Organization of Rare Disorders (NORD) is holding its annual Rare Disease Day tomorrow, Feb. 28. According to their definition of "rare disease", it is "any disease, disorder, illness, or condition affecting fewer than 200,000 in the United States..." NORD keeps track of and shares information on over 7000 diseases and disorders, and is working to increase awareness about rare disorders, particularly how those of us handle life while wearing a rare disease (before and after diagnosis and treatment). This year's theme is Research, a topic near and dear to my heart, since I am only casting a shadow today because I was diagnosed & treated (and still experience annual checkups) by my research-focused heroes at Nebraska Medicine and University of Nebraska Medical Center.

I checked to see if I could locate statistics on the incidence of Adenoid Cystic Carcinoma.

  • I found this 2012 article that just might include my own 2016 diagnosis statistic: Adenoid Cystic Carcinoma of the Head and Neck: incidence and survival trends based on 1973-2007 surveillance, epidemiology, and end results data. (Note - table figures were corrected in this Erratum, published later in 2012-please check this out for correct figures.) Yep, ACC fits the rare disorder category - they picked out 3026 patients diagnosed with ACC in the head/neck in that 34 year span. The article has been cited 18 times by articles in PubMed Central, and around 97 times as recorded by Google Scholar - take a look if you want to check out more recent research on ACC. Remember - always discuss with your healthcare provider if you find anything in research articles that might apply to your own condition.
  • I found figures on a site maintained by the American Society of Clinical Oncology - Cancer.Net: 1200 people per year diagnosed. Sources for facts are listed as: Oral Cancer Foundation, and the Adenoid Cystic Carcinoma Research Foundation. 
  • According to Adenoid Cystic Carcinoma Organization International (ACCOI), who based their statistics on SEER data, ACC is diagnosed in 1224 of all people diagnosed with cancer in the US each year. They also show Australian figures for 2006-2010, showing an average of 81 ACC cases reported per year. (I am not a biostatistician, so I may have misinterpreted that table.)

If you have been diagnosed with Adenoid Cystic Carcinoma, there are communities on the Internet that exist to help you lessen your isolation. I have linked to some on the right side of my blog, and you can message me to ask me about other sources. You can also find a local library that offers consumer health information services, and get immediate access to quality, evaluated information that you can take to your healthcare provider for interpretation.

Cheering for all of us rare disorder-wearers, and thankful for NORD to keep the awareness level up. Especially cheering all ACC wearers, no matter where it was first diagnosed. I am heading for the 11 year marker since initial diagnosis, and planning to celebrate many more survival anniversaries.

Who links to my website?