Hello to you all. As a fairly new member I came to this forum regarding our 18 year old son who has been diagnosed with buccal mucosa invasive squamos cell carcinoma. The staging impression given by the radiation oncologist is T1 - tumor 2 cm or less in greatest dimension, NO - no regional lymph node metastasis and MO - no distant metastasis. Due to the close resection margins, he has recommended radiation therapy that will entail at least 6000 cGy over a full 7 weeks' time. It is moderately differentiated, and this is what he said about the necks - no suspicious adenopathy; however, a few tiny jugular chain lymph nodes were noted bilaterally. There were also bilateral tiny sublingual lymph nodes. I am not sure what all this lymph node speak is about. Our otolaryngologist initially said lymph nodes were not involved, but the radiation oncologist says they are but will be irradiated and surgery isn't necessary. Perhaps some of you can help with clarification on this. Also, I am hoping that some of you can help with probable side effects for my son specifically as he undergoes and finishes the radiation. I have read everything there is to read about possible side effects. I am looking for realistic, personal input and some advice on providing for his nutritional and emotional needs. We are still working on getting him out of his court-ordered group home and into our care for his treatment. He wants to be with his family and close friends, and with his church family. I think this is of URGENT IMPORTANCE in fighting this effectively, as well as the nutritional aspects involved. What do you think? We are very discouraged, as time is of the essence and we seem to be locked in battle with the "powers at be" in the system. Thank you for your help!
Cindee

Hi Cindee, My guess is that the tiny nodes were showing up on one of his scans. Generally the lymph system is the first pathway that these cancer cells will travel. Two pieces of good news: The node chains will be a part of his radiation "map" and the cancer cells do not usually move very fast through the lymph system. Many of us had lumps (nodes) that were present for months. (at least 6 months for me)

The trend lately is to not surgically remove these nodes but instead go with radiation or radiation with chemo. The results are as good with less side effects.

As for radiation, IMRT is probably better if he can get it, Ask his doctors. He IS in for a fight The course of radiation you mention is a maximum dose so his RO is serious about beating this. I don't remember if you have said where he is being treated but take the time to verify that it is a Comprehensive Cancer Center, or at least the best hospital you can find.

I cannot agree more that he will need you and the support of his family. If you need help in lobbying with any agency to explain what he is up against I (and probably every regular poster here) will gladly assist. Radiation to the head and neck is a hell of a process. The good news is it is very effective.

Take care

Hi, Cindee. If you haven't already, petition your son's Doctors to write or call or give you letters to take to the "powers that be" about how vital it is to have him at home with 24 hr. caregivers. Radiation will probably make him feel really lousy and he will need help tracking his fluid intake and nutrition during rad. tx. This will be a major undertaking for your family unless he sails through radiation[most folks don't] He needs to be eating alot of good food now and getting adequate rest before this starts. I wish the best for you all. Amy

The one thing we were not told about the effects of radiation therapy was that there was to be copious amounts of phelgm. My husband coughed up/spit up phelgm throughout his treatment and afterwards for several weeks. This was probably one of the most frightening parts since we did not know the extent of the problem until it came about. The phelgm was very difficult to get out--would hang in long streams from his mouth and we'd have to pull w/ tissue to remove it. Not trying to scare you but you to know to be prepared.

There's both phlegm (from the severe throat irritation and chest congestion) and thick mucosal saliva from the sublingual glands. The latter tends to increase during radiation, at least proportionately (as the thin watery saliva from the large parotid glands is reduced or even eliminated by the radiation). This is the ropy sticky stuff that clogs the mouth. Salt and soda rinses (or soda water) really help and should be repeated often as they also help with mouth sores. the phlegm can be helped by use of guafenesin -- either as the syrup (dilute with water as it may burn if full-strength) just make sure to take full dose -- or with the timed-release tablet Mucinex, but the latter is a large pill and difficult to get down when you have a sore mouth and throat!

My husband Barry was also helped by use of a humidifer at night, which is the worse time.

Severe phlegm can also be a symptom of a low-grade infection -- Barry had a sudden massive increase in clogging phlegm one day, going through a box of tissues every few hours, along with a low-grade fever and general malaise. He had to go in for a traetment that day and his doctors got on it immediately, blood tests, chest xrays etc. and they found he had a penicillin-resistant staph blood infection, very dangerous if they had not caught it when they did. He was admitted to the hospital and 24 hours on the vancomycin IV and the excess phlegm stopped! I should note that this sputum was "colored" -- that is, it had a trace of pus like when you are recovering from a bad chest cold.

Barry had a similar set of symtroms a few weeks later which they first worried was a recurrence of the bacterial infection but which turned out to be a low-grade pneumonia. Again, a couple of days' antibiotics and the excess phlegm went away. However the pneumonia took 2-3 months to completely resolve (per chest xays).

So any sudden increase in phlegm, especially if it appears tinged with pus or blood, and most especially if there is any fever -- call the doctor. Also, low-grade pneumonia can linger for months, and be essentially symptomless, and I think this is the cause of some folks' persistent phlegm and congestion, when otherwise they are starting to heal well from treatment.

Gail

18 years old.....very young to be dealing with this. At such a young age, I would also be concerned of how he deels with this, as the treatment will really turn around his social life.

My husband was just diagnosed and we've been examining all of our options. The one thing that is becoming more common is not to perform surgery as the first option. Let the XRT and chemo do its work first. This is what we are proceeding with after prayer, long discussions and research.

Keep us posted.