Hello: I have oral cancer and I hate it. I was feeling so positive post-treatment however, everything seems to be spiraling down. I finished treatment end of Sept/13 and my Oct appointment went well. However, CT Scan in Dec/13 showed a new spot by voice box and was advised at Jan/14 appointment. Life has become a waiting game between appointments/scans/biopsies. I have had three different biopsies which come back negative, however, the doctors have "clinical concerns". PET Scan came back "inconclusive". They cannot tell me if I have cancer or if I don't. I didn't go through treatment not to know.

I will have another CT Scan in a couple of weeks and have been referred to an out of province cancer center. I have difficulty swallowing and have been advised that feeding tube maybe life long. I try to live in the moment and not worry about tomorrow or a year down the road, it's hard. I thought I was beginning a new chapter in my life - retirement - maybe working part-time, travel, enjoying life, and it seems to have been ripped out of my hands.

I'm hoping that this site will provide me with some answers that the team is not providing and to receive the emotional support that only those that have had this terrible diagnosis can provide. I have come to fully realize the treatment for Oral Cancer just keeps on giving.

Welcome to OCF! Im so sorry you are struggling with being in limbo. It must be so difficult not knowing what is going on with your health.

You have come to the right place for info and support. We are not medical professionals but we have walked the same path so we understand where you are coming from.

After going thru being diagnosed with OC 3 times Ive learned a couple things about how to deal with the stress of an unsure future. Do your very best to not procrastinate. Try your very best to live as if you were healthy. Cancer is like a thief and steals your time away from you. Time spent worrying and thinking "what if..." is time taken away from you that you can never get back. With practice you can help yourself by doing positive things you enjoy. It really does help relieve some of the pressure you are dealing with.

Hang in there!!! Better days are coming.

Portia if you've been referred to an out of provide cancer center may I suggest askng to be refered to dr. Jonathan Irish at princess Margaret hospital in Toronto, hugs and welcome.

Thank you for the welcome and the suggestion, I've asked for a referral to the Cross Cancer Institute in Edmonton, family are close by.

Ahh... okay... Jonathan Irish is the TOP ENT in Canada. He's a surgical oncologist - he did my surgery and is quite amazing. He pioneered a surgical technique that a lot of other institutions are starting to use (he can see the cancer in real time while he is cutting). He really is amazingly talented. Edmonton is a good cancer center too. I've also hear BC is as well. Wherever you go hoping that the outcome what we all hope for.. NED.

Family is important. Try not to get down, this cancer can be flukey, but with the right treatment and care you will get through it. The not knowing personally would drive me around the bend.

hugs...