I was diagnosed with squamous cell carcinoma in Aug of 2016 (never smoked and not HPV related) and had a partial glossectomy and reconstruction surgery last September--I was curious if having a tracheostomy is standard with this surgery as I suffered the worst while in the hospital from not being able to communicate and the suctioning of the trach every 1.5 hour or so plus, it took several weeks to heal after leaving the hospital. My stage was determined after surgery to be stage 4 as there was some lymph node involvement, however, I refused radiation & chemo in spite of strong pressure from MDs--and am extremely glad I did refuse.
Post surgery, I'm being monitored quarterly via quarterly MRIs. and my last MRI results in March were clear, happily.

In spite of my minimal post surgery issues (mainly upper neck numbness & pulling from the dissection), I find I have had a hard time finding an OC support group in the Boston area. I have no family or support network and as a result, I've been experiencing a lot of loneliness and depression. I do go to SPOHNC meetings but they only meet every 2 months and it's a presentation by a speaker, not a support group per se. It's been rather frustrating but I do the best I can and just learned about Cancercare.org a NY based organization that offers free counseling and online and/or telephone support groups run by oncological social workers...

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