I was diagnosed with scc on the surface of my left lateral tongue after a biopsy back in 2008. Had a partial glossectomy. A couple months later, back for a checkup, the doc found another spot that biopsied positive a little toward the midline: more surgery.

Five years later, this last September, biopsied another spot which turned out positive again. Surgery took a deeper lateral chunk that included a patch of leukoplakia. That was a tough one--out of work for three weeks and my speech was pretty impacted. Finally two weeks ago, back at the clinic for another checkup, they biopsied an area anterior to the last and found more scc. More surgery. I thought this one would go a bit easier since they found the margins relatively quickly, but no. This one's bad, too. Drinking enough, barely. And losing some weight. Who wants to eat?

I was one of those "do it and let me know when you're done" sorts of guys. Not so much now. Though I'm pretty terrified reading the comments here, I'm glad I found you. I don't like to admit it, but I'll need your info, and sadly, your experience, and your sympathy, of course. Maybe I'll be helpful in return.

Ah Paddler
You've been through the wars haven't you.

Sympathy is not my forte but I can help you with info and experience - Alex and I have lots of that. If you ask questions that are within our field of experience, I will share the relevant bits of Alex's story.

My first question to you though is one that needs to be directed to your doctor: Is radiation an option? And if not, why not? As this is now a recurrence, I would also be considering a second opinion and seek out doctors who see lots of other oral cancer patients who work in a centre of excellence. I believe that in the US you have good hospitals for treating cancer and average hospitals for treating cancer.

It also may be time to go against your natural inclination to let the doctors take control, and take a more active role in your own treatment. This forum can help you do that.

My Alex is the "do it and let me know when your done" guy and I am the "but why, and what are the other options?" girl. So naturally I took over the logistics and questions (and sometimes battles) whilst Alex's job was get through treatment. If you prefer not to do the "why and what are the options" job yourself, do you have someone who will partner with you and take some of the load?

Im going to agree with klo, biopsies are great - clear margins are great too but you should have had a ct/pet/or MRI - post biopsy and pathology to determine any possible spread to your nodes. Also this being a third recurrence (though recurrence this close to a previous biopsy is not really a recurrence - it just means they didnt get it all). you should definately be given the option of radiation and chemo. And possibly a proper surgery with neck dissection and possible rebuild of the missing tongue. (I know it likely hurts alot) where are you being treated - you should be seen at a cancer center if your not.

Hugs and welcome.

Welcome to OCF! So sorry to hear you have had recurrences! Its not easy but it can be done! You will find lots of info and support here.

Are you being treated at a major cancer center? It can be very important especially since you are dealing with recurrences.

Hydration and nutrition are going to play a huge role in your recovery. High protein will help you to heal. Without proper nutrition it will be harder for you to recover. If you cant eat, drink ensure or boost. There is Boost Very High Calorie (used to be Carnation VHC) that has 560 calories per can. Its usually not available in stores so you can order it online thru Amazon for about $44 a case. If you use Amazon for this or any other purchases please go thru the green box here on the main forum pages to help OCF. Amazon gives OCF a 6% kickback for all purchases made using the link.

best wishes with everything!!!

Sounds like persistent cancer, and agree with the above. The cancer seems it may return sooner or later, and then to what extent, and where, is unknown. Maybe get a 2nd opinion from a CCC as to what the best course of action to take next is. Good luck.

Paddler, sorry you have to be here, and you are living through my fear. I had my surgery and have decided to hold on the rads based on 3 opinions, but I am worried that it will come back. I have already decided if it makes another appearance, it will be full rad/chemo to kill this bugger off. If you haven't already, check into it, and see a radiation oncologist who can walk you through the process.

Best wishes, and we are all here for support!

Thanks all for responding and making me feel welcome. I'm lucky to have my wife, the questioner, and like you said, Flo, I've dealt with the recovery. I also have great faith in my doctor at the Mayo in Rochester. He was my second opinion after I was first diagnosed. My first doctor from Sanford in Sioux Falls figured I'd need the full meal deal. He scared me, literally, silly. Many here know the message, sadly, too well. I should have heeded some advice I saw elsewhere on the site: deal with the fear; there are drugs for that. Pain from a tough biopsy and no sleep because of terror is no way to live.

The decision to go to the Mayo was pretty easy for reasons probably less about my illness than about avoiding what Sanford said. But this recurrence has my attention. I'm planning to have the doctor address my concerns at our meet in January--what are the characteristics of the scc I have? Is there a range of treatment options? What signs might I want to watch particularly for? If it moves and reappears, where will it more likely move and reappear?

I've been able to handle liquids better this time, getting nutrition from Ensure and ice cream. Last time I was a wakeup from going back to the hospital for hydration. Couldn't drink for two days. Pretty big mistake not to go quicker, something the likes of which I should learn for next time, on this site perhaps, or better no next time, the info lost in the haze of a long and busy life.

Mayo is supposed to be good but sometimes if you don't ask you don't get. So definitely ask everything possible. It's next to impossible to predict spread its such and individual thing. I know lungs is a big and scary one. ( once it hits there it is very hard to treat). But a friend who passed away early this year ended up with it gone from her mouth and neck but they found it in her vertebrae and ribs and then from there it became uncontrollable - another had spread to her groin and then everywhere else. Your lymph nodes service your entire body - the lymphatic system runs parallel to your circulatory system. So if it's not caught with fairly early nodal involvement it can become hard to catch (hence chemo as a rads chaser as it is systemic - and though it doesn't "kill" scc perse it can nuke stray cells that may have traveled outside the radiation field, and it sensitized this that are in the radiation field) - I'm not trying to scare you it's just a heads up. Education is your best weapon. And do wha you can to create and maintain a strong immune system.. Hugs!

Paddler

Doesn't it just suck to finally reach that magical 5 year mark and then find out you have cancer again? Certainly did for me.
This time around my recommendation is that you quiz the doctor long and hard about why you are not getting any radiation or chemo, especially since successive surgeries have not been successful. Ask specifically if radiation or chemo would give you a better chance of not having yet another recurrence, because some doctors make their own judgement of what is better for you without when you personally might make a different one.
Ask why does the doctor think this time surgery by itself will work when it obviously has not worked in the past. What is different about this time? Be nice, be polite, but ask
Charm

I think its time for another second opinion. Try and get to a CCC and have them take a look with "fresh eyes"