jen, i have a very similar story to you, in terms of initial diagnosis and recurrence. i had SCC diagnosed on right lateral tongue in 9/08, then partial glossectomy, right neck dissection, chemo and radiation. mine was T1N1M0. in 3/09, i had noticed a lot of pain on the left side of my jaw but my CT scans continued to come back negative. my left jaw area was swelling and sore, but i just figured i had a blocked submandibular duct because of radiation treatment. it wasn't until 8/09 that a bump showed up in my right neck suture line and after seeing my surgeon and getting biopsied both under my left jaw and right neck suture line, did it come back as recurrence. crazy that our cancers can go from right tongue to left neck. unfortunately, my tumor(s) aren't surgically resectable at this time. i just got back from my first visit to MD Anderson in TX and I'll be receiving some chemo there. i've been on other chemos since august, and while they are holding tumor in check, they're not getting rid of it.

i wish you the best in your surgery and future treatment. stay strong, and remember to smile and laugh as much as possible. we are going to tough this all out!

kristen

Jen, normally I would not be able to talk to you since I went to ASU - lol. But now we are in this together. I had a right neck dissection October 2nd. I start radiation supposedly 11/16 although I haven't even had the mask made or the peg or port put in, let alone the simulation. So it might be another week after when I start. Oh how I hate to read about the great number of recurrences of this cancer. And I am so amazed at the young people on here. I'm 63 and I thought I was healthy until I went to the dentist and he found a tumor under my tongue last May. Nothing but bad news since. I wish you all the best.

Hi Jen- I know what you mean about wanting to have rapport with your Drs. Its lucky that you foudn that with Dr. Kim... however it doesn't mean that you won't be getting the best care if you don't have that personal connection. Many Drs. can be reeeeeally socially awkward-- especially the really really intelligent ones! Those kind of smarts don't always translate into people smarts... Your previous surgeon sounds like a rare bird! This is what I've encountered anyway on my journey and also because my Dad is a Dr. too. MY RO was so rude and inappropraiate and one of the most incompasionate people I"ve ever met BUT she is considered one of the best in her feild so I just had to deal with her weirdness....I'm so sorry that you have to go through treatment again. Its just really hard. I can only imagine. I'm thinking of you and praying for you to have a full and 100% successful recovery from this- Soon you'll be done with it once and for all.

KATE

I think it's time for another update... This morning I am typing on my phone from my hospital bed. I really hope I can go home today. I just hate hospitals and miss my doggies and my husband being around all the time. (He's staying at a hotel, because he just can't sleep in the hospital chair.)

Anyway, despite the pain in my jaw getting quite a bit worse, I held off until 11/16 for surgery. There were many delays and I ended up not getting back to surgery until 4-something. Despite what was supposed to be a simple left neck dissection, it ended up being much worse. After removing the lymphnode area, the doctor saw that the cancer had spread into the base of my tongue and my 12th cranial nerve (hence all the pain in my face lately). They had to sacrifice my nerve and they removed some of the BOT. My speech is pretty bad. Supposedly, it's supposed to get better with time, but without that nerve, I know my speech will never be normal.

It looks like radiation treatment will be coming up in about 4-6 weeks. I'll see my surgeon Monday to remove my stitches and give me the final pathology. I also have an appt. with my rad. oncologist on 12/4.

I guess at this point I'm just looking forward to getting out of the hospital and hopefully getting to keep my plane tix to fly to IL to spend Thanksgiving with relatives.

Thanks for listening!

Well, I suppose I should make a slight correction to my post above. I guess they didn't remove any of the BOT. What had happened was that the cancer in that one node had grown so much that in engulfed my salivary gland and the nerves/muscle controlling my base of tongue movement. They removed all my left neck lymphnodes and my gland/nerve/muscle that was compromised. I got my pathology report back on Monday and they only found one other node with cancer and all margins were clear.

In speaking with the surgeon about his suggestion about radiation, it seems like they would only radiate my left neck and not my oral cavity or right side. That makes me feel a lot better and gives me a better chance of retaining tastebuds & salivary glands, right? The surgeon also suggested I talk to an MO. He said with the cancer's aggressiveness this time, I might consider chemo. He thinks it's almost a toss-up of advantage vs. unnecessary unpleasantness. I'll be seeing my RO on 12/4 and since he's with a CCC, I'll have him suggest a MO to talk to. What do you guys think about chemo knowing my history? I'm sorta on the fence at this point and am looking for some knowledgeable opinions.

All that being said, I'm doing pretty good otherwise. I'm with family today through Friday for the holidays. My tongue still isn't quite working right, so it takes FOREVER to eat anything. At least I won't overeat for Turkey-day.

I also finally started a blog. With radiation coming up, this treatment process is going to be much longer than last time around. If you guys are interested, take a look: http://jensroadtoremission.blogspot.com .

As always, thanks for listening!

-Jen

Hope all goes well for you and your family. Hope you have a Happy Thanksgivivg holiday!! Semper-Fi Bob

Jen, sorry you have to go through this again. this type of cancer really stinks. Hope you get to be with family over thanksgiving so they can take care of you. I would strongly recommend that you see an MO before you start radiation.
How is your swallowing? get hooked up with a speech therapist so you can start therapy and tongue exercises.
take this time to heal and to get your self in good shape physically for the next battle.
hang in there,
nancy

Jen -- sorry about what you are going through, but given the aggressiveness of the cancer, I would definitely throw everything you can at this disease. We only get so many cracks at this thing, and holding back at this point would be risky.

We are all behind you!!!

When I was diagnosed with a recurrance I said - literally "Hit me with your best shot" I would take every treatment that they think would be beneficial. I would double check with them about radiating only the neck. While it would be lovely to retain lots of things in life, LIFE is the point and you can live without a couple of tastebuds if it means you have kicked cancer's butt! I have not seen alot of success stories with people who try to salvage something and "temporize" their treatment plan. Hit it with their best shot - regardless. It is an aggressive cancer and requires an aggressive response.

Keep us posted.

Donna

Another update:

Yesterday I had my appointment with my RO. Despite the fact that I kept putting his name on everything to make sure he was cc:ed, he hadn't gotten any of my pathologies or scans and was completely surprised when I told him I had had a recurrence. I even called his office 2-3 weeks ago and asked if I should move up my 12/4 check-up and be sure to tell him that I had had a recurrence and would be discussing beginning radiation treatments. *sigh*

Despite the initial craziness, I had good appointment. I left feeling almost excited about the next round of treatment. I feel like I am in very very good hands. My RO is a professor at the local university and his primary research is in head and neck cancers in young people. He is also associated with a really amazing CCC, which I got to visit yesterday for the first time. It's the best looking medical facility I've ever been to!

It seems my RO agrees with a lot of you on this sight...I really need to hit this hard. He plans on radiating both sides, avoiding the right cheek area to save at least one major salivary gland. He says in his research with young people/aggressive cancers, adding chemo to the radiation treatment can improve my chance of 5-year survival by 15-20%. So, knowing that, I'm pretty sure I'll be doing that. I'll have to meet with the MO later next week to go over the disadvantages/side effects.

There are a lot more appointments it seems I'm going to have to have before I even begin my simulation, in addition to the MO. I'll have to have a dental evaluation, an MRI, a swallowing test, and a baseline hearing test. I'm trying to squeeze those all in next week, which will be hard, especially considering I have exhausted all my paid time off at work for the year.

The part of my appt. that made me the most excited, though, is that my RO has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG. He said this was going to be like preparing for a marathon, so from now until as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements IN ADDITION to my normal diet. I think that's pretty crazy since my low metabolism usually causes me to put on weight with anything above a 1400 daily caloric intake. I'll listen to him, though, since I REALLY REALLY REALLY want to avoid needing a PEG. For some reason I don't dread the side effects of radiation and chemo nearly as much as the idea of having a feeding tube sticking out my stomach. Maybe I'm weird.

Anyway...sorry for the long update. I learned a lot yesterday and am just excited about the next steps to kick this thing in the butt.

I'll update again once I know more specifics about the radiation treatment. I think he said he'd be using helical tomotherapy, but I'm not entirely sure. The main thing was that I needed to schedule all those other appointments before we got into all the details about the radiation treatments.

So until then.... Thanks for listening! - Jen