Meet others living with Head & Neck Cancer: Introduce yourself

Hi- I’ve been diagnosed with squamous cell carcinoma of the oral cavity which is impacting my gums and cheeks. Several years ago this was on my tongue but was surgically removed. However a granuloma constantly returned on my tongue and had to be removed multiple times. I was okay for almost 2 years and now it’s back. I’m scheduled to start radiation therapy next week. I’m now overwhelmed with all the likely side effects of radiation.

@pat80 I feel you. Same type cancer. My tumor was in the crease of my nostril. After a 9 1/2 hour surgery (tumor removal,free flap and neck dissection) I'm starting radiation therapy next week.

@charliesilberman
How long have you been dealing with this. It sounds as if you have been dealing with a lot

@pat80 in 2009 I had a kidney transplant. I've been on Immunosuppressant medications since then and will be for life. I tell you this because people on immunosuppressant medications are more at risk for skin cancer. Anyway I've had 25 +or - surface skin cancers for many years.This time the SCC was embedded deep and was wide requiring the surgery. At this time I'm getting ready for radiation therapy. Once that's done I'll have 2-3 plastic surgeries.

@charliesilberman - Oh my goodness! You've had it tough for a very long time and obviously will continue to have a very difficult time. You must be very knowledgeable and have a lot of patience. Have you found it helpful to talk about this with others or have your friends sort of backed away? I ask this because I've found mixed reactions. Some people are very caring and concerned but then others seem to be distancing themselves. I'm assuming that many people just don't know how to respond or what to do.

Communication between others who have been in similar situations is very therapeutic. I've benefited from participating in support groups. People distant themselves from others for a variety of reasons. Whatever those reasons are speaks to their coping skills or lack thereof. Hold on to those people who are there for you. It's like selecting produce. Take with you the produce you like and leave the rest behind

@jchurchill5017 I have had metastatic SCC but skin origin for 13 years. In 2020 I had mets show up in my kidney and surrounding lymph nodes. Libtayo (Cemiplimab) infusions were started and continued for over 2 years. All mets disappeared and are still gone and I have been off the drug for 2.5 years. I know skin origin differs some from mucous membrane origin SCC in its response to treatments. The main side effect I had was tiredness but it wasn't debilitating. The most irritating one was that food started to taste different so my appetite decreased. Weight loss is not helpful when battling cancer. My husband was on Keytruda for several months for bladder cancer and he had the same reaction with food tastes. He also became hypothyroid due to the drug. His tiredness did not prevent him from working.
I hope you are offered an immunotherapy and have good results as it has been easier than chemo in our experience.

@sepdvm thanks for sharing your experience. I have surgery this Thursday and then we'll go from there. Dr has made the comment that immunotherapy is not as effective on cancers in the hypopharynx which is where mine is.

@pat80 Hello and welcome to the Head and Neck cancer group. I wish we all could have avoided radiation yet it seems to be in the plan eventually. Hopefully you can get Proton, which is far more precise. However likely you need a larger coverage area. All I will say is to ensure your radiation oncologist has experience specifically in head and neck cancers. Don't hesitate to ask because this is important for you, the patient.
The side effects are not enjoyable yet most of us recover eventually to a point of a somewhat new normal. Understand that initially it seems rather easy and simple with little side effects. In the last 30% of treatments it becomes a bit difficult to manage. Some people request a nasal feeding tube at this point, which allows you to be nourished whilst being able to swallow fluids such as ice water.
When the radiation cycle is completed, many of us tend to go downhill for a few days to a couple of weeks on until recovery begins. Don't be alarmed by this. That said, this is a bit of a challenge ahead for you. This should also end the reoccurrences you have endured and you can look forward to getting that monkey off your back finally.
Don't hesitate to start your own discussion in this forum specific to anything you are going through as this progresses. Many people here have had similar experience and can help. Your own discussion is easier found by many of us here. In the meantime, courage.

Thank you so very much for such an informative and helpful message. I've read a lot of information about all the possible/probable side effects and although they are very helpful, I'm anxious and nearing exhaustion just thinking about what I need to do. I'm involved with the M.D.Anderson Cancer Center so I know the medical personnel are highly qualified -- I have no concerns about competency. These folks are friendly and knowledgeable and efficient. The anxiety I have so far is related to not knowing the actual process and what side effects I'll have, as well as following all the recommendations I've read. The facial exercises, the swallowing exercises, the fluoride treatments, etc. all seem very overwhelming. I like the idea of starting my own discussion group although I'm not sure how to do that. I appreciate your giving me an idea of the progression of side effects. Even though its overwhelming, it's also helpful so I can become accustomed to what might happen.
Thanks again, Pat