Falling Through the Cracks with Head and Neck Cancer

An ounce of prevention is worth a pound of cure. But a non-invasive “cure” is always still worth a try!
I evaluated a patient this week who has a history of head/neck cancer several years ago and now has difficulty swallowing. He was tossed around from doctor to doctor over the last year or so until someone
finally ordered a swallow study at a small town hospital a couple months ago. However, the swallow study was performed, and the patient was told by the speech pathologist that his swallowing impairment was really severe and there was “nothing that could be done”. After being bounced around a couple more months, he was finally told that he needed an “aggressive swallowing therapist,” and eventually called an otolaryngologist in Tulsa who quickly sent him to me…. And here we are now, finally addressing his swallowing difficulties several years after he has been cancer free.
There are several things about this story that are very upsetting to me as a swallowing clinician, but I will just list here the two most concerning things. 1-The fact that the patient never saw a speech pathologist throughout receiving radiation to the head and neck to educate him about preventative exercises to fight against scar tissue buildup around the swallowing musculature, which is a known side effect of radiation. And 2- The fact that now after several years, the patient FINALLY lo and behold saw a speech pathologist recently and they simply completed the swallow study and sent him out the door. No recommendations of compensatory strategies. No diet texture recommendations. And STILL NO PHARYNGEAL EXERCISES.

When I evaluated this patient this week, I asked when his head and neck cancer was and when his radiation ended, and I could almost say it in unison with him as he stated that it was about 10 years ago. We have seen this so many times in the clinic that we can almost profile these types of patients by reading their charts prior to their evaluation because it is so cliché. We get referrals often for people who are literally at right about the 10 year mark and have developed such severe swallowing problems by this point that have gotten progressively worse over the years due to scar tissue buildup post radiation. After several years, they progress from having a mild difficulty swallowing to the point of calling and scheduling an ENT appointment because it has gotten so bad, and at this point, they finally end up at our office… And while this is not ideal (ideal would have been to complete preventative exercises all along), we are still SO glad that they’re here now. Because, let me tell you, there ARE things we can do.
Why does radiation cause damage to swallowing muscles?
Simply put, the primary issue post radiation to the head/neck area is fibrosis, or scar tissue buildup. This prevents the tiny pharyngeal muscles that are responsible for swallowing from moving appropriately. And the longer that the muscles are not moving properly, they begin to weaken and become accustomed to not moving fully, which is then only compounded by the fact that scar tissue continues to form and worsen over time. This is a vicious cycle that is best tackled aggressively and as early as possible with preventative exercises beginning even prior to radiation.
What if there was no preventative exercise program? Is there any hope now?
Even if it is 10 years after radiation and the swallowing issues have just now become apparent, there definitely is still hope in completing treatment. We’ve had roughly 10-15 patients in the past 2 years at SNR who have been right at around the 10 year mark post radiation, and we’ve seen them make great improvements!
Patient Case Study
We had one gentleman last year who had a swallow study and was found to be aspirating everything (meaning every texture he swallowed during the radiology test- food, thin liquid, thicker liquid, etc.- was going down the wrong way into his trachea which leads to his lungs instead of down his esophagus which leads to his stomach). The physician present during the study recommended that the patient get a feeding tube because there was no texture assessed (not thickened liquids, pureed food… nothing!) that was safe for this patient to eat orally without aspirating it. This particular patient was extremely motivated and came to therapy with me for several weeks, completing neuromuscular electrical stimulation with me in the office and completing a daily rigorous exercise program at home as we trained and instructed him to do. When we repeated his swallow study 2 months later, he was safely swallowing regular textured liquids and soft solids without an aspiration risk- a HUGE improvement from his starting point a couple months prior to that. We still recommended that he follow some compensatory strategies for maximum safety because obviously his post-radiation variation of a “normal” swallow will look different than his pre-radiation “normal”. But the bottom line is that he did make tremendous improvements even several years post radiation with no prior intervention up until that point.
Now, I will point out an obvious caveat here; his results are not always the case, and every individual situation is very different. Treatment approaches and results obtained depend entirely on where the infarct was, what was removed surgically, and how much radiation was received /where and for how long, how motivated the patient is and how regular they are with exercise completion, etc. etc., etc. However, in all 10-15 of these patients we’ve seen who fit this exact stereotype, ALL of them have made functional improvements of some degree. For some this meant resuming a regular diet, and for others it meant consuming an altered diet of some sort (softer foods, thickened liquids, etc.), but even an altered diet is a huge quality of life improvement over a feeding tube. Individual response to therapy so many years post radiation will vary dramatically from patient to patient with individual circumstances, but the bottom line is: you don’t know until you try it. And you have literally nothing to lose.
Team Approach- Referring to Colleagues in Other Disciplines
Another treatment technique we like to recommend to our patients several years post radiation is manual therapy by physical and occupational therapists. We have some PT/OT colleagues we work closely with who can perform Astym, a scar tissue removal treatment, that can also work wonders for breaking up scar tissue that has formed over time.
With our new patient who I assessed this week, we are going to be doing neuromuscular electrical stimulationin our office, giving him a regular aggressive daily home exercise program, AND referring him for Astym therapy with our PT colleagues to attack the problem from every angle with the team approach. He is very motivated to drive to see us multiple times a week from over an hour away and to complete his exercises on his own each day as prescribed. Either he will make functional improvements (which again, he aspirated every single texture assessed, so any safe textures on his repeated study would be an improvement), or he will not, but he will know either way he tried everything he could. And either way, he has a new hope now that he did not have when he was previously evaluated and prematurely told there was nothing that could be done without even a trial of exercise, neuromuscular electrical stimulation, manual therapy to dislodge scar tissue, or any treatment approaches at all.
Take Home Point- Remember this Info and Pass it On
Each time I hear these stories and see these patients who have fallen through the cracks over several years, I am motivated to put in even more effort to raise awareness of their situation in hopes that the next person will make i
t to rehab sooner and have even a better fighting chance.
We are blessed to work with some amazing otolaryngologists in Tulsa who are experts in head and neck cancer, took part in our preventative exercise campaign last year, and currently refer these folks to us as soon as they are diagnosed with head/neck cancer- BEFORE swallowing symptoms begin. Even just one office visit with a speech pathologist prior to cancer treatment to educate and teach about scar tissue buildup and to provide information about preventative exercises can be game-changing for that person.
However, we want everyone to know that even for those who DID fall through the cracks and are just now seeking help several years after the fact, there IS still hope. If you are a healthcare professional reading this, please keep this info in the back of your mind so you can do your part and refer your patients in this situation to someone who can give them hope and at least make sure every avenue has been explored and tried. If this post reaches even one person who needs it, I am happy I spent the time writing it.
Please feel free to reach out to us for more information about any of the treatment techniques I mentioned or if we can assist in pointing you toward current research or current evidence based treatment techniques. As always, we are happy to answer any questions and to help in any way that we can.
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