Hi Folks,
(I SENT THIS OFF AS A PRIVATE E-MAIL SEVERAL DAYS AGO, BUT AM UNCERTAIN WHETHER IT WAS TRANSMITTED OR RECEIVED. THUS, I AM TRYING A GENERAL INTRODUCTION, THE PROVISO BEING I WOULD LOVE TO COMMUNICATE WITH TOTAL OR NEAR TOTAL GLOSSECTOMY SURVIVORS)

Although this coming Thanksgiving will be 3 years since I was diagnosed, (my major treatment occurred between Jan & Mar. 2010), I've just come across this web site. I've attended various support groups here in S FL, encountered several head & neck cancer survivors but never anyone that has had a total glossectomy. So when I read in your kind response to new member Heather about your background I felt compelled to contact you. Similar to other folks, whose stories I have skimmed, before cancer, I was a healthy, non-smoker, very committed to cross-training, yoga and and a classic Mediterranean diet. I had no family history nor other risk factors. No matter,as this " before cancer history" is irrelevant. On 01/06/10 I spent 11 hours on the table that included: a "near total" glossectomy. Neither the docs nor the operation report ever clarified this characterization, but I've been told that between 80-85% of my tongue was removed. In addition, a partial pharyngectomy, partial palatectomy, and partial maxillectomy with a flap transplanted from my abdomen. During a radical bilateral neck dissection 74 lymph nodes were removed, but only 1 had evidence of metastasis and it was encapsulated, but with a minute 0.1 mm margin. After a month of recovery I underwent a regime of 36 IMRT radiation treatments, along with 6 weekly doses of cysplatin chemotherapy.

My pet scans have indicated "no evidence of disease" and I'm thankful to be here. I am also speech disabled, but coherent. I am feeding tube dependent, unable to chew and eat food,(I use a glossectomy spoon and do have taste) and do manage to swallow small quantities of liquid. I still struggle daily on many levels-physically, emotionally and psychologically. However,gradually, I am coming to terms with my life situation. I am blessed with a loving wife of 27 years and 2 fantastic kids-now in their 20's. Obviously, your journey has been arduous. If you are so inclined it might be mutually beneficial for us to share some experiences and coping strategies. Who knows perhaps this will enhance our life perspectives. If this is not your cup of tea of course I understand. Perhaps you could then refer me to other glossectomy survivors. Wishing you health and happiness.

Sincerely,

Ben

Hi there... the post just above yours could probably use a reply from you... the woman's sister is facing a similar surgery to yours though somewhat less involved in someways... I think your information would be invaluable. You should also meet Misskate (her ears mus be burning) she has also had a complete glossectomy.

WELCOME... and congrats on survival so glad to have you join. I know there are others here who've had similar surgeries... I was like you healthwise... (see below), but my tumor was confined to my tongue and only moved once biopsied. As such I had a partial glossectomy, 40 nodes removed from one side, one involved, with a bit of ECE. I had 33 rads, (bilaterally) and chemo... I am blessed that I can still swallow, and taste quite well. Hugs and welcome again!

Hi Dov, Kris has had a total glossectomy among other things. I have sent you a pm. Tammy

Welcome Ben! One advantage of posting on the forum is you will get more attention and replies than if you send members personal emails. Another plus is that your words will live on to help many others in the same situation.

There are other members who have been thru similar things as you. Not all members frequent the forum daily, some only stop by every couple weeks. It could be some time before you get several responses only from those like yourself with a total glossectomy. They are out there so just be patient and they will reply. Many members will still post a welcome even if their situation is not the same as yours.

I removed your personal information for your own security. If anyone wants to contact you privately they can thru a PM (private message). By posting your email address and other info you are opening yourself up to any spider that is searching the internet trying to pick up addresses to spam or do harm to. Same goes for your phone number, address, etc.

Here is a link to help you get started with posting and a signature. When making a post about yourself its always best to have your own thread. Adding onto another members post is further explained in the link below.

Forum Etiquette

Ben, I'm devastated to read what you've gone through but so glad to hear that you're alive and coping so well. You are now officially a member of my personal pantheon of heroes - along with Christine, Cheryl, EZJim, Charm, Kris, Eric, Misskate and many others whose names elude my foggy brain right now. And certainly above all our fearless leader Brian Hill, without whose pioneering work we would all be homeless (well, online anyway).

I'm also a Miami native so I especially identify, although I currently live in California.

I'm sure you'll continue to hear from others who been down your particular arduous road.

All my best.

Hi Ben,

So glad you found OCF as I did. It really has helped through the tough times lately. I'm a fairly new member and only the caregiver, but I am my husband's advocate so I want to absorb any and all info. My husband goes next week for what we hope will be a partial glossectomy, partial pharyngectomy with right neck disection and a free flap reconstruction from his thigh. Am scared of the unknown, but not our first time at the rodeo.

Post often please.

Thanks, Bette

Welcome, Ben!

Thank you for sharing your story. This disease is brutal and unfair and we have so much more to understand about it. But, you sharing just a little bit about how you have handled your situation with grace and remaining gratitude makes me feel hopeful.

I am recovering from a second primary tumor in my tonsil and I am struggling emotionally and physically. I honestly don't know where you get the strength to do all that you have done with other support groups and such, but I am so glad you found us! Please make yourself comfortable and keep coming back!

Love,
Kerri