New Tongue Cancer Diagnosis

Hello all, In early December 2021 I was diagnosed with  INVASIVE SQUAMOUS CELL CARCINOMA, MODERATELY DIFFERENTIATED.

So began the journey. PET/CT, then MRI, met with Surgeon and other Oncology teams later in December 2021. Became part of a new Immunotherapy Study at Johns Hopkins in Baltimore in January 2021. I have had 2 treatments. The growth on my tongue has become less painful and shrunk some. I have met with Speech and the the Reconstructive Surgeon also. I have another PET/CT and MRI on Feb 17th so they can compare with the original before surgery.

So far, they believe it is centrally located in my mouth and doesn't show expansion to my neck lymph nodes. But they will be doing a neck dissection to take lymph nodes for testing.

I have surgery on Feb 21st 2022. So many unknowns right now, and that's tough for someone that tends to plan ahead so I can figure out what my options are. I won't know if or what level of reconstructive surgery will need to be done until I am in my recovery room. We won't know if I will need Radiation until all the pathology is back 7-10 days. Then I will know the next phase.

Some questions to the community: I know every case is different and as they say, results vary. It helps to have information to assess my progress with. Every person has different support systems, different physical conditions so recovery and impacts are different, information from those that have experienced this is helpful to make sure my "MIND" is right.

Neck Dissection

1. For those that have had the Neck Dissection, how long and hard was that part of the recovery?
2. Did you need to sleep in a more upright position for 1 week, 2 weeks, etc.

Tongue

1. At this time we think that the growth is mostly on the left side of the tongue, but they won't know just how far into the tongue it goes until they are in.
2. For those that had reconstructive surgery with a Cheek Flap, any insight on the recovery?
3. For those that had the Flap with a transplant from your arm, any insight on the recovery, to include time to get full re-use of the arm?
4. How long before you were able to talk effectively?
5. How long before you were able to eat through your mouth?

Thank you for reading and taking the time..