Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

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?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

lyndal | @lyndal | Jun 27 1:04am

I had oral cancer in gums and bone. Had surgery May 23. Transplant skin and bone from leg into mouth.

Sue, Volunteer Mentor | @sepdvm | Jun 27 9:04am

In reply to @lyndal "I had oral cancer in gums and bone. Had surgery May 23. Transplant skin and bone..." + (show)

Welcome to Connect @lyndal. My father had that same surgery back in the early 90s when it was considered a new procedure. He recovered well from it, but it was a tough time. Others on this link have also had that surgery if you check through the list. Do you have a stomach tube for nutrition or are you able to take liquids and soft diet orally? I don't remember how long my dad had his stomach tube after surgery. Will you have any followup radiation or chemo?
I have metastatic squamous cell carcinoma but from ear canal origin, not oral. For 12 years I have had treatment at Mayo Clinic Rochester MN and feel blessed to be alive today. My last met was treated with a newer immunotherapy drug infusions for two years and has been controlled for 3 years now. There are new treatments now that were not available 30 years ago for my dad.
How is your recovery going?

lyndal | @lyndal | Jun 27 8:16pm

In reply to @sepdvm "Welcome to Connect @lyndal. My father had that same surgery back in the early 90s when..." + (show)

Hi Sue, my surgery was May 23. Had a trach and tube feed in nose. Was in the hospital for 10 days and they removed both before I went home. No feed tube now. I am able to drink liquids and soft diet, but the skin flap on left side of mouth is huge and not comfortable. They removed my teeth on lower jaw and put in a titanium plate. That isn't comfortable either. Pluse no sensation as they cut into nerve, but some is slowly coming back. Will be starting 5 weeks of radiation on July 2. Had a follow up appointment today and doctor said the flap should go down a lot after radiation. In the meantime it's uncomfortable and annoying, but I guess I have to be patient. And am truly grateful for a new chance at life. I am 69. Thank you for your welcome to group. I live in Canada.

Colleen Young, Connect Director | @colleenyoung | Jun 29 3:16pm

In reply to @ewilde "Hi Barry, I am in Florida also. I had both tonsils removed, a portion of my..." + (show)

Welcome, @ewilde. How are your eating issues now?

lilypilly | @lilypilly | Jun 29 5:28pm

Hi Allison is my name. I was diagnosed with basenif tongue and lymph node cancer. I just celebrated my 60th birthday and recently retired. So this is a real curve ball on my future. I would appreciate any support this group can offer. Thank you

William Olsen, Volunteer Mentor | @hrhwilliam | Jun 30 6:39pm

In reply to @lilypilly "Hi Allison is my name. I was diagnosed with basenif tongue and lymph node cancer. I..." + (show)

Hi @lilypilly Allison and welcome to the head and neck group. I’m sure at 60 there are many more enjoyable groups to join than us but here we are.
Many patients on this site with vast experience in these cancers. This is beatable but not easy. It will take courage. Ask away at whatever comes up that you may not understand. Do you have a treatment plan yet?

ewilde | @ewilde | Jul 1 2:12pm

In reply to @colleenyoung "Welcome, @ewilde. How are your eating issues now?" + (show)

Thanks, @colleenyoung for the welcome! Yes, I still have eating issues.

Sue, Volunteer Mentor | @sepdvm | Jul 2 8:54pm

In reply to @lilypilly "Hi Allison is my name. I was diagnosed with basenif tongue and lymph node cancer. I..." + (show)

Hello Allison. Cancer has a way of taking control of your life and temporarily changing your plans. Surgery, chemo, and radiation for head and neck cancer is tough, but you get through it and back to your new normal to get on with your life. There are new medications and immunotherapies being approved that are improving our treatment successes. My most valuable advice is to educate yourself so that you can be a strong advocate for your own health care. If your doctors’ plan doesn’t sit well with you, pursue a second opinion, preferably at a large cancer facility.
You can get through this and will likely find you are stronger than you thought.

Colleen Young, Connect Director | @colleenyoung | Jul 3 11:43am

In reply to @kcaldaba "Tonsil cancer. TORs and neck dissection scheduled for tomorrow. Thanks to everyone that’s contributed to this..." + (show)

@kcaldaba, I hope recovery is going as well as can be hoped. How are you doing?

kcaldaba | @kcaldaba | Jul 3 12:09pm

Pretty good overall, I think. At Mayo now about to do swallow function exam. Thank goodness for the pain meds; otherwise, this could get pretty uncomfortable. One week out from surgery, have post-op meeting in another week where I’ll find out staging. Have a great support system, so I’m very lucky.