While the forum discussions have been up to now primarily devoted to helping those who are newly diagnosed or currently in treatment, we have been monitoring and are aware that an emerging group of people need to share ideas and support; those lucky enough to get through their cancer experience with successful treatments, and who now, many years out from treatment, are having complications related to that treatment.
To provide some ideas for the discussions in this forum, I will put a few posts up over the next week that look at my own experiences as an example. We all know that the treatments that we endure have consequences, and that still being on this side of the grass 5 years, 10 years, or more out is a blessing... but be assured these treatments have consequences of their own. And our treatment facilities and our oncology professionals are not so concerned about us years down the road. We can talk about why this is as well.
My personal list of complications at 15 years out from the completion of treatment are; acute xerostomia, dysphasia, carotid artery stenosis from radiation induced scar tissue, esophageal stenosis, loss of ability to control the right side of my face and mouth, bario-reflex disfunction, sleep apnea from mucous secretions, and more. Some of these are seriously life altering, some are aggravations, some are simple coping adjustment things to deal with.
Before I start on some of these let me relate a quick anecdote about a conversation I had with my radiation oncologist Dr. Kian Ang who we recently lost to cancer. We were at an oncology conference where we were both speaking, and having his ear for a while, I decided to rail on him about a litany of complications that his treatment had left me with more than a decade out, and which had nothing to do with my cancer. Patient ever with my long windedness, Kian listened quietly as I went through the quality of life issues, and serious medical issues that I faced as a result of our original time together. 20 minutes into the conversation I had the main topics out and was ready to detail things further. Kian stopped me. He said "Before you continue, I just want to ask one question Brian, is it completely lost on you that you have to be ALIVE to have these complications?" Well, that clearly put things in perspective for me. It could have so easily turned out very differently, with me on the other side of the grass all those years ago. I am so very thankful to be here today, and to have bought with those difficult treatments a decade and a half which I feel I have put to good and meaningful use. So as you hear about my issues, please do not think that I am lacking in appreciation of how lucky I am, nor my taking any of it for granted.
I will start talking about the one that is little understood, and often difficult to diagnose, bario-reflex disfunction. It essentially means that my body's ability to control my blood pressure and my heart rate, has almost completely become non functional. This has consequences which can be life threatening. It is a result of of radiation to a small group of micro nerve fibers that are located near the carotid artery notch, and who are tasked with sensing your blood pressure and telling your body to compensate up or down as they do. Sitting still, my blood pressure can go from a dangerous 160 over 115. to 90 over forty all in a matter of minutes. This is real fun and the long-term consequences of it are scary. This started about year 13. More later.