[quote=Mamacita]
T, bless you for your honesty. I mean truly I thank you. I'm more afraid of hearing half-truths than I am of hearing the worst. And for some reason your words, "You got this" are stuck in my head and my mantra when fear starts closing in. Our cancers sound so similar. Did yours engage just one side? How did your docs know it was very aggressive?[/quote]


Hi Lynn,

I had an unknown primary. My team feels my body eradicated the original tumor but not before it spread it's joy to my lymph nodes. The PET scan showed the cancer on the left side only. By the time I went to Johns Hopkins for the 2nd opinion, the tumors had grown in size. At Dx (Nov. 30, 2012), they were about 3cm and by the time I went for surgery (Feb 7 2013) they were closer to 5cm. When they went in to remove the tumors they found them to be larger and more invasive than they thought. They had wrapped around the nerves, muscles and blood vessels in my neck thus the trauma to the nerves and subsequent issues with my left shoulder/arm. They came out and let my partner/caregiver know what was going on after three hours as she was expecting me out of surgery. She's been a Godsend through all of this.

The surgery was supposed to be about 3 hours but it took closer to 6 hours due to the intricacy of removing the tumors. They were extracapsular so chemo was necessary. It was TORS to remove my lingual tonsils and biopsies as well as the selective neck dissection.

The end result was positive and my ENT/Surgeon feels he got the cancer. The chemo/rads were essentially a "mop up" operation. I'm going on 10 weeks post Tx and despite some side effect setbacks, I'm doing Ok. Time and patience are key to recovery. It will be frustrating at times but know it will get better. You'll measure your progress in weeks as opposed to days.

Your hurricane analogy is an accurate one as you'll face the front end of the storm during treatment and the back end of the storm during recovery. Make sure you have plenty of water, food and meds. You may lose a few shingles and some siding but you'll make it through.

Remember... "YOU GOT THIS!"

Positive thoughts and prayers

"T"