Hi Kristen,

I sit here ten weeks post TX. I had a selective neck dissection Feb 7th., then chemo/rads 6 weeks ending 4/24. I sought treatment at Johns Hopkins. Interestingly enough, my treatment plan went from chemo rads only at a small local hospital to neck dissection followed by chemo/rads afterwards as opposed to the opposite. I'm convinced had I not gotten the surgery, I would still be facing it regardless.

As it turned out, when they went in to remove the cancerous nodes, the cancer was very aggressive and invasive and the surgery was much more complicated than originally thought. The Team agreed that it was the best move based on the result. I had two large nodes removed along with 24 additional nodes (non cancerous) on the left side.

That being said. The road to recovery from the surgery is a long one, not even withstanding treatment which is brutal. Nerve issues/trauma as well as longer term side effects like lymphedema affect me. I sit here as I write in discomfort. My left shoulder was compromised as the tumors had wrapped themselves around muscles, blood vessels and nerves in my neck. I still have rather difficult issues with my left shoulder and arm. Time will tell if it ever returns to somewhat normal. Numbness, pain, cramping and other maladies are the result of the surgery but they are pretty normal. Take the surgery, a month or so to heal and then radiation and chemo and the cumulative effect is sobering.

I would definitely get a 2nd opinion. The key is to feel comfortable with the team treating you and it really should be a team.... all in agreement and working to make sure you survive with the best chance at the long term. A CCC is the best place to seek a 2nd opinion. They work in a team setting and see the most cases.

Again, I'm sure, had I just gone with just chemo/rads as originally recommended, I would have been facing surgery anyway. I'm also sure, based on what I experienced on the local level, I would have stood less chance at survival. It seemed as if the doctors didn't quite know what the other was doing nor did they care. When I went to Johns Hopkins I had an ENT/Surgeon, a MO, RO, Speech Pathologist, Oncology nurse manager and even the head of the Sidney Kimmel Center in the room with me. They had acquired all the previous test results, had ordered other tests prior and knew my case up to that point in and out. I was poked and prodded in the first 25 minutes more than I had been the entire time prior locally. They were very confident they could eradicate the beast in me. Very soon, I'll know if they did as I'll be scheduled for my first post Tx scans soon.

All that aside, surgery is rough, recovery is challenging and treatment is brutal, but it's a small price to pay for your life.

Positive thoughts and prayers,

"T"