Answers Can't Come Soon Enough


I had a tumor removed from the base of my tongue and partial neck disection in August of 2016. Followed by 30 radiation treatments.  I am nearing my 2 year anniversary. I began experiencing tenderness in my throat and tongue about a month ago. My tongue feels bloated abd I have some difficulties swallowing. During a routine visit with my ENT, I shared my concerns. The ENT looked at the back of my tongue as well as my larynix. He did not see anything out of the ordinary. He suggested we do a PET scan to see if there is anything going on. I had the PET scan on Monday July, 2nd. On Thursday I received a call from the nurse at the ENT office. She told me that there was activity in two locations in my body, one being on my vocal cords the other in the bladder area. She went on to say the the doctor is not concerned. This was the only information I received. Major bummer! She did move my routine appointment from October to August. I think the doctor should have conveyed the information to me personally. It sure would have eased my concerns. I was told to consult my primary physician for the other area of activity.

I sent an email to the nurse of the surgeon that removed the tumor. That also was last Thursday. I have not received any information form them. Fortunately I have a routine appointment with my radiation oncologist tomorrow. I hope there will be some answers. Not knowing is really got me down. Where do I go from here. Deja vu. The hardest thing to have to go through was telling my wife and children. Cancer sucks!


  • OKCnative
    OKCnative Member Posts: 326 Member
    First thing I'd say - which I

    First thing I'd say - which I bet many here would echo - don't let a 'hot' PET scan scare you until the severity has been confirmed. Many of us hear have been told there was "activity" on our PET scan only later to realize it was no big deal. In fact, my oncologist wanted me to do another (my 3rd) Pet scan, "just to be sure this one neck node isn't hot" and I told her "no thank you, I'll stick to CT Scans every few months.

    I'm surprised your doc told you to go to your primary for "the other area." When my heart and lungs lit up my head and neck doc called and made and appointment for me to see a thoracic specialist. Going back to the primary simply adds another step and more cost - but that's just my opinion.

    I've found that my standards of communications have never been met throughout my cancer journey. I have to call, call again, and insist on information.

    Good luck to you!