Post treatment issues

I am very interested in knowing what kind of symptoms you have experienced over the last 14 years as a result of this tonsil cancer.  I am always wondering if what I am experiencing at times are part of the disease/treatments received. 

It really helps me deal better when I know this is somewhat expected.

 Thanks for looking at it from a different perspective!!!

 God Bless!

You're very early in the recovery process and technically will not be out of the woods until you meet two critical points; those being the 2 and 5 year survival points.

The type of twice daily fractionated radiation I received for 6 weeks is no longer being done from what I heard so hopefully you will not incur the outcome I have.

To answer your question: On average I would experience one sided ear pain that would, in days, begin to also develop into lateral and posterior one sided pain in the tongue. When these episodes occurred it was difficult to tallk because it hurt to move the tongue. These events would last on average about two weeks then resolve. It took a few years to begin to understand what was really going on in my case. These episodes were a type of neuropathy associated with eventual irreversible nerve death and subsequent loss of motor function to muscles innervated by the nerves involved. I think the big hint came to me when I began to notice fasiculations in the tongue. These are rapid involuntary movements in the motor muscles of the tongue and imply nerve death and eventual atrophy or loss of muscle mass. Speech becomes difficult as does swallowing. Those areas most damage were the tongue and swallowing mechanism plus vocal cords. I was initally self treating with an antibiotic under the mistaken impression I had either an infection in the throat or ear. Pain in the posterior pharynx or mouth is commonly referred to the ear making one believe the problem is ear related. Although their are seveeral meds on the market that I never tried, in retrospect I would use now if I was still having the problem. Neurontin, Depakote, Lyrica and either Rlavil or Desyrel have been used for neuropathic pain. One may also use a varieity of pain meds.

As the years went by and the nerve damage was well set these episodes stopped and I haven't incurred any in 2 years.

If you havean experienced ENT surgeon who has real world experience with post radiation patients, consider yourself lucky. My experience has been that few ENT docs have much exposure in this area unless your in an area with a major ENT teaching residency program or you go to a major medical center like MD Anderson in Houston, TX.

Can you tell me more about your case? How old are you, did you ever smoke, alcohol consumption, travel in the far east, presenting symptoms before diagnosis, type of surgery you had and type of radiation treatment you completed?

Thank you

This is an interesting phenomenon that I personally did not incur. As I read your message, it reminded me of patients I have seen who had lost a limb and were experiencing the so called phantom limb phenomenon. With time this phenomenon does improve in those in my experience.

Funny you mention the dentist as I just returned from having a filling done. I still have more work to be done in the dental chair which given the damage I have from the type of radiation is a challenge. I virtually have no remaining tongue motion, swallowing is difficult and my vocal cords were damage.

I think your loss of perception of heat/cold will slowly improve over many months as tissue damage continues to heal. I vaguely recall experiencing this but not beyond the first 2 years.

As to the dentist: The bottom line is to make your teeth a priority and, if you have a good dentist, follow through on repairing all early damage. For years I use to use topical flouride gel but stopped as I was never really convinced it did much for me. As you know, a dry mouth predisposes to increased dental decay. I have abstained from using  the artifical saliva agents and even a tablet called Sialogen once prescribed to me and just sip fluid when needed. If your dentist wants to do a root canal or crown ever time you see him/her and you are questioning the need, it is time to find a new dentist or get a second opinion. Both my wife and I have been down this road with a past dentist.

I would be interested in learning more about your problem. How old are you, have you or do you smoke or consumme alcohol, lived or traveled in the far east, & type of surgery and radiation you underwent?

I really, really hope you beat your disease. I feel your anger, pain and disappointment having encountered a callous specialist after traveling from TX to CAfor a mere 15 monute encounter. There is no excuse or place in medicine for this callous, uncaring attitude. As a practicing physician, I have to admit that one learns one is as mortal as the next after you personally experience a life altering event to your health. I know my disease has significantly altered my interaction with patients and people in general. Sure, physicians are busy and have the ususal life stressors everyone else has but having a flawed personality issues is never an excuse for lack of good bedside manners. If I were you, I would write this physican a letter and describe how it felt to be treated as being immaterial and the trouble/effort you went through just ot have 15 minutes of his/her time. If nothing else, you'll feel a little better and maybe this health care provider will stop and think about the patient more then their own problems during the time they are priviledged to have a patient. I would be surprised if he/she doesn't write back. They probably have no idea how you feel or what happened.

Best of luck,

Dr. Elfrink

With all the medical legal suits today, I was just lettting folks know I am responding as a patient with a disease and not as a medical provider. Sad and unfortunate as it may be, there are people who would choice to misinterpret shared experiences with receiving medical advice/care from a health care person on line.

Now to a more exciting line of discussion.

Yes, yes and yes to your question concerning the impact of incurring a life altering disease and surviving. While in the military, as a physician, I was of the mind that I was immortal so to speak and could accomplish anything I set my mind to. I know for a fact there were times this attitude got in the way of common sense and common courtesy. While providing pretty good care, I really never allowed myself to feel the patients pain or look at a situation from their perspective. I was emotionally distant.

This has all changed. I no longer am aloof from the patients perceptions and emotions. I listen a lot more carefully then I ever did previously. I let the patient stop talking first before I open my mouth to speak which is no easy task.  I try and understand their concerns from their perspective and I've learned to better accept myself for not having all the answers as I use to think I was expected to. I have heard over and over the comment, " you're the first doctor who has taken the time to actually listen and talk with me about my issues", which is always a challenge given the highly stressful work environment for the average primary care physician where 15 minutes is the standard appointment. When you look at getting the patient into a room, getting vitals checked, listening and examining the patient, deriving a plan, printing prescritions/instructions/ initiating referrals, typing a clinical note into an electronic medical record etc it doesn't take long before you are getting further and further behind and more and more frustrated. The list of potential frustrations is lengthy and usually out of one's control. Never the less, I still truly believe in the importance of taking time to really listen to my patients.

Personally speaking I think every medical student and every medical resident in training should be requuired to spend at least three days in a hospital setting as a patient.

First congratualtions on hitting the first major milestone at 2 years. When you get to the 5 year mark, you will another cause to celebrate because the probability of recurrent disease markedly drops off.

Dry mouth/throat: Common; a nuisance; no cure but tolerable (as if we have any other choice). I would be hopeful that tast comes back but slowly-years. For the first 6- years I was highly intolerant of any spicy foods but now love them. The oral sensitivity/discomfort abates but really, really slowly. Stick to a diet that is healthy but not irritating to the mouth. Even if not hungry, you have to force in nutrition every day; this will improve and smell/tast will comeback.

I recall my ENT provider prescribed Sialagen tabs to stimulate saliva; I tried it but was never impressed for me; their are a number of artifical saliva agents out there to try but I found just sipping fluids was all I needed. At night it's tough as you will have a dry mouth no matter what. Keeping a bottle or cup of water on your nightstand may help along with kleenex for the mucous production from intense mucositis.

Mucous production; primary from the posterior nasal area above your soft palate; constant; does decrease over the years but never completely abates. Definently exacerbated by certain foods. I supplement my diet with powdered protein from a local health food store and buy soy milk at Sams. Unfortunately, a common off shoot is increased thick mucous production and interference with the airway at the level of the vocal cords as I have vocal cord paralysis and difficulty swallowing. I have often wished I had invested in a bedside suction maching to help with the initial horrendous production of mucous.

Pain; common; may be transient, episodic or continuous. First have your ENT or Oral sugeon exam you and get xrays as needed. It's okay to use analgesic or pain meds when needed. I responded earlier today to a patient experiencing probable radiation induced neuropathic pain often presenting in the ear as a referred pain from the oral pharynx and lateral tongue as a sign of impending permanent nerve death albeit slow. If you have an ENT physician who actually has real world experience with post radiation treated patients then you are fortunate as many have none or limited experience. If you live near a major teaching hospital with an ENT residency, they usually have faculty who are experienced in this area. If you can afford it, a trip to MD Anderson to their ENT physicians involved in head andneck squamous carcinomas may be  worth considering if you feel your issues are not being addressed locally.

Future eating issues: Assuming they did not do surgery on your tongue, any future swallowing issues will be a result of radiation induced permanent nerve damage. Mine did not functionally begin to show up until I was 5-6 years out although I later realized I was experiencing episodic bouts of neuropathic pain in the ear/tongue that would last about 2 weeks and made speaking difficult from pain in those first 5 years Since then the nerve damage to my tongue, swallowing muscles and vocal cord paralysis has progresively worsened month after month. It is relentlesss and there is no known effective treatment or preventitive intervention that I have found. The type and extent of radiation has a lot to do with this. It is my understanding the type Ireceived isno longer being done. You develop a munmber of tricks as time evolves to continue to speak (somewhat understandably), swallow and breath. If your an athelete, there are a number of other issues you learn to deal with.

Can you share moreabout your problem? How old are you, did you ever smoke, did or do you consumme alcohol, travel or live in the far east, have numerous strep throat infections as a child or were exposed to potential environmental threats?

Feel free to write with questions and I will try and provide advice based upon my personal experience.

Thank you so much for your reply. I am 42 years old female, non-smoker, social drinker, health nut. I have never travelled to the Far East.  In 2005, I presented with an enlarged painless left tonsil, and fatigue. In 2006 had a CAT scan which reported a cryptic tonsil and No Evidence of Malignancy. After which the tonsil doubled in size, and it was decided to remove it. In March 2007 I had the tonsillectomy, the right tonsil was infected but the left tonsil contained a 2cm tumor. A PET scan showed no metastases. T2N0M0. My local oncology center recommended one-sided radiation.

I went for a second opinion at Dana Farber in Boston. Their pathology indicated that they did not have clean margins on the tumor, and that it was caused by the HPV virus. I would need 7 weeks bilateral radiation, 3 rounds of cisplatin, and a feeding tube.

I completed treatment June 6 2007. I was able to continue eating throughout radiation, and did not require narcotic pain relief. No mouth sores or swallowing problems. I went rock climbing the day before my last rad and chemo!

I felt pretty good after treatment, but now I feel not as good. The ear pain is really bugging me, and joining the working world again has left me a bit fatigued; but you are saying it could be some type of nueropathy from the radiation?

I continue to recieve follow-up care at Dana-Farber, and my local ENT is seeing me between the Dana appointments if I feel the need.

Thank you so much for taking the time as a long-term survivor, and physician, to share your experiences with us!

Rick has a very solid suggestion here.  I would be excited to discover such a website.  I very productive idea.  It also removes the liability issues associated for all. 

Thank you for your generous nature and desire to help others.