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Meet others living with Head & Neck Cancer: Introduce yourself
Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.
As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
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@pat80 feel good for you that you seem to be taking 'all' in strides -
best wishes & take care!!
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1 ReactionHi my name is Caroline I have oral cancer of the tongue and have had a partial glossectomy and neck dissection it came back one year later and I have had my salivary gland removed and biopsy to my throat. I also deal with severe lymphedema
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4 Reactions@pat80 I appreciate your anxiety but as an individual that went thru 35 radiation treatments and I believe 5 chemo treatments, I would encourage you to limit your focus on all the “possible” side effects. My treatments were over17 years ago now and I can tell you that everyone reacts differently. I’m happily still cancer free and outside of limited taste buds, and my children advising that my singing career is probably on hold (not sure it ever really started except for signing nursery jingles to them), life is pretty good now. Not every negative side effect will happen to you and you’ll work your way thru the ones that do. I still go back to my Cancer Center and talk with individuals that are going thru similar treatments that I had. Take advantage of any support groups you can find…. It really helps the mental side of all this. I wish you well!
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2 Reactions@cc89 Hello Caroline and welcome to Mayo Connect Head and Neck cancer. It sounds like you have some experiences to share with this group. So sorry about your lymphedema, that is something I have no experience with, thankfully, despite select neck dissection. How soon did that begin for you after surgery? What sort of treatments do you use to help this condition? Do you have severe dry mouth and if so how do you deal with that? Only half of one salivary gland was removed in my original surgery but dry mouth is a problem at night. I use Zylimelt tablets at night to help, and a cool mist humidifier by the bed. Are you currently free of cancer or undergoing more treatment now?
@craigbauer thank you for your comments and reminding me that it’s not a given that u will have a side effects! I tend to think the worst so I can be prepared but that’s probably making me more anxious. I need to focus more on the day to day and the positives that I have a great care team at M D Anderson - Mays cancer Center.
CT Scan Report Paraganglioma on Right Neck
Anyone going to MD Anderson for Paraganglioma diagnosis or treatment? First initial appointment with Endocrinology or Head & Neck Surgery? Previous breast and skin surgeries, so maybe NeuroEndocrine or MEN Clinics at MDA or Baylor, as live close to Houston, and Mayo will be frozen in shortly.
@cc89
Warm Welcome!
I had oral cancer of the tongue stage 4b, full glossectomy, double neck dissection, 80 lymph nodes removal, 33 radiation rounds. Salivary glands may never be the same. Keeping mouth clean as much as possible is key. Lymphedema can be treated by manual lymphatic massage.
I wish you well in your journey!
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1 Reaction@texashummingbird
I had a paraganglioma on the right side of my neck at the bifurcation of the carotid arteries. It was surgically removed in July by a surgical team at Mayo Rochester. Something to think about: Dr Moore & Dr Link had me have a femoral vein catheter embolization to install a coil to divert the blood supply away from the tumor, ye still insure sufficient blood supply to the brain. I was AWAKE for that surgery, the day before tumor removal. They call it gentle conscious sedation. .. absolutely nothing gentle about it. BUT it was done to minimize any chances of damages to facial nerves, and I came thru w no facial drooping, no speech issues, etc. My recommendation is to ask the question.
Hello @gangcarotid1
Thank you kindly for the good information, and send blessings for great health your way!
How many follow up visits did you have and how often so far after the tumor removal surgery?
Just looking at the logistics of travel from south Texas to Rochester and back during the winter months. But, would not be my first trip to Mayo during the cold weather. Been going with family members and for my own breast surgery since 1992. I sincerely appreciate your guidance and experience with something that is pretty scary to me at this time.