Hello all, I am trying to keep my friend on the right track to the best outcome. He was recently diagnosed with Stage 2 tongue cancer. I encouraged him to get a second opinion from a top specialist at Mayo, and he eventually agreed. He had surgery locally, with biopsies during surgery to verify removal of problem. He has had a one week follow up, and his surgeon said all is well, and that he should just go on living his life and after a 3 mo follow up he should be good to go.
I have been battling leukemia, and have made it my business to keep on top of my treatment by using forums and making sure that my doctors at minimum follow the NCCN guidelines for follow up.
I gave him the link to the guidelines, and told him to insist on the minimum guidelines, but to try for a more rigorous follow up. His guidelines call for follow ups the first year every 1 to 3 mo (he is getting the 3 mo currently). It also calls for another scan at the 6 mo mark.
His dr has not informed him of this protocol.
I would appreciate any info or experience that you could share with me (and him) on this subject.
My leukemia forum has helped me immensely, and I thank you for your help on this. Parenthetically, I have tried searching first before posting.
I wish you all the best in your battles, and to those of you in OK, my thoughts are with you. Jackk

Welcome Jack!

the best advice I can give you is to make sure your friend is being treated at a comprehensive cancer center. It does make a difference! At the very least go there for a second opinion. At a CCC a whole team of specialists will discuss each individual case at a meeting to all decide what the best treatment plan would be. Everyone is on the same page which is very beneficial to the patient.

CCC list

Hi good advice, and unfortunately this cancer can hide in the nodes even in the early stages. This is a mistake a lot of drs make. They tell the patient we got it all only to have a recurrence shortly after. Mayo is a great hospital but I was stage 2 - two scans and a MRI confirmed no nodal involvement... My dr. Told me straight up - I'm removing a portion of your tongue and 40 nodes. In the 6 weeks between dx and surgery I had a node blow up. It was cancerous and had leaked out of the capsule - this cancer can be aggressive and sneaky. He needs to check his neck regularly get to know it and high tail it back to the dr, if anything changes or his operational site doesn't heal. Your a good friend.

Jack, I'm in Canada, but we have the same protocol, every 3 months for the first year, with full work up, including chest xray, etc. at the one year mark, then repeat except every 6 months to the 2 year mark, then annually. My surgeon of course also has advised to let him know if I feel anything "off", and then I will have an immediate appointment.

Thank you so much for your responses and support. Christine, I assimilated your link of CCC's to share with folks and their supporters who are battling cancers like us. He did go to a second opinion from Dr. Olson at Mayo, who I found in my research, to be a highly respected expert on his cancer. I checked with my oncologist for referrals, US News Top Docs peer reviews (he was in the top 1%), hospital ranking for treatment of head cancers (Mayo was 6th, the best by far in MN), board members of national cancer think tanks for relavent cancer, and, as you recommended, I also looked for CCC status, of which Mayo was an early model.
Cheryl, thank you for sharing your experience, I will print it out and share it with my friend. (Sorry about the Leafs--our Wild was booted early from the Stanley Cup playoffs as well).
Tina, thank you for reassuring me of the proper follow-up protocol. You have helped me a lot, a wish you well in your battles, and will introduce my friend to your site (where I am sure that he will correct any misinterpretations of his experience). Thanks again, Jack

You are a very good friend, Jack! Hope to see your friend join our group soon.