Kelly please try not to think negatively until you have all the answers drs. Have been wrong many times before. Get your second opinion for sure. And wait for your biopsy results! Prayers and hugs to you!

Hi Kelly, We have two letters sent certified mail to us by his RO saying that my ex-husband's PET scan showed bilateral mets to his neck from an unknown primary and that he needed to be in radiation therapy or he would die. Well, had they biopsied the areas, they would have found out it was a residual problem from his throat infection. His latest scan was clear. PETs light up lots of stuff--a friend had ribs that had been broken years earlier and they were still lighting up on his PET. Thankfully, his doctor asked a few questions before he diagnosed them as distant lung mets.

I know of two survivors whose caregivers are regular posters here who were sent home with only the hope of palliative care. They now have no evidence of disease--one of them for over two years.

Get a second opinion, or however many you need to feel like you have done everything you can do.

It is hard sometimes not to, but, please do not lose hope.

I'll be keeping you in my thoughts and prayers for you to be cancer-free.

Well Ron was told he had signs of mets to the lungs a spot was showing up as well as his spots on his jaw area that he had to have his second operation, but he never went to see the thoracic surgeon yet, he wanted to of course concentrate on the big surgery he had coming up. So we will see what happens when he gets his next PET scan. I'm also hoping it hasn't changed cuz he did have double pneumonia back in 2005 or before or after can't remember he's been thru so much crap. So prayers yours is not cancer!

Kelly,

I am so sorry that you are facing this scary turn. Clark has been followed by a lung specialist because his PETs lit up as well. His lungs light up from infection and inflammation due to aspiration. I send you peace and comfort and big hugs. My best to you-

Anita

Biopsy on node in neck is positive for SCC. Trying to getbiopsy on lungs ASAP. May be Tuesday if all goes well. After that heading to MD Anderson for second opinion.

Glad you are going to md Anderson. We are treating metastasis to bone and get a pet scan at the end of September. Hoping we have slowed it, shrunk it, or made it disappear. Not giving up this fight easily. Hopefully, md Anderson will give you ammunition to keep on fighting!
Prayers for you,
Robinleigh

Sent you a PM please let me know if you need my help with what I proposed.

Hi Kelly, I'm so sorry for what you are going through. I'm writing today to hopefully offer you some inspiration. My husband was diagnosed over 2 years ago with Stage IV oral cancer. It was in his tongue, anchoring his tongue to the floor of his mouth, a couple of lymph nodes and also his jaw bone. We got 2 opinions and both hospitals gave the same prognosis "no surgery, too extensive. Only hope is to prolong his life, not cure, but we are looking at 6-12 months". But my husband Steve faught the biggest battle of his life. He was diagnosed a couple of weeks before his 43rd birthday. I'm happy to say he is now 2 years NED. He passed the 2 year anniversary of his tx completion last month.

What I'm trying to say is never give up hope. The doctor's will always tell you the statistics, as we were told. But you and my husband Steve aren't statistics. It is possible to prove them wrong. All the best to you Kelly. My thoughts are with you. You can get through this.

Wendy

Wendy, perhaps you have given a biggest example and motivation to Kelly by citing this personal example.

Thanks Wendy,

I am scheduling meetings with MD Anderson in Houston and The University of Michigan. Spending most of today making sure all the relevant records get there ASAP.

I have heard one to many stories from those who have been told to go home and die (REFUSED THAT IDEA)and are alive today, to give up now.

You and Steve will serve as an additional inspiration to me as all of my family here do on a daily basis.