Well, so after 12 years out of treatment for tongue cancer, seems I'm heading back again. Sort of writing this to vent a bit I guess.

A little bit of history, if you check out my profile and posts you'll see some of it, was diagnosed late 2002 with squamous cell carcinoma on left side of my tongue, had that removed along with neck dissection, followed by chemo/rad. Early 2003 PET CT found it had spread to right side neck lymph nodes, another neck dissection, chemo/rad. All done in Hong Kong while I was living in south China.

Since then, a few adventures along the way, but after I got over the side effects of the chemo/rad x2 felt pretty good. Moved around a bit, China, to US, back to China, to Puerto Rico, East TN, Saint Louis, now living in California, about 30 miles north of Santa Barbara for the past year and a half.

Last March, started with a new dentist, and set of doctors, Dentist wanted me to see oral surgeon, just because, so I had a good exam by him, all seemed ok. He referred me to an ENT, just because, full exam by ENT, all seemed ok. Fast forward to a couple months ago, getting extra sensitive to spicy foods, etc. A few small white spots that would come and go causing some pain, but not anything obvious.. Made appt with GP, finally got into him last week, he sees white spots wants me checked by ENT. ENT (same office as before but a different doc)takes a look, not happy with what he sees. Apparently a bit of a mass going on that you really have to look at to see what it is. (hey, after the surgery from last time, plus rad and various episodes of dry mouth my tongue doesn't look normal even when it IS normal)

So ENT isn't happy, with that, does biopsy. And today the news comes, yep is cancer again.

And the wife and I are devastated. Doc is worried that since I've already had surgery I don't have a lot of tongue to spare with this one, he's worried about quality of life issues, referring me to a doc at UCLA. Probably the surgery and free flap reconstruction, then we'll see about any radiation/chemo. I've got to dig out my records from the Hong Kong hospital so they know what's been done. That stack of records is about an inch thick.

Trying to keep a positive attitude about it, the "gonna kick it's a** again" attitude, but this time sort of tough. Doc is in the process of scheduling a PET/CT, followed by an MRI, I guess see where it goes from there.

So, thanks for letting me vent, will keep all posted. Writing about this stuff tends to be good therapy for me.

Doggone it, Bob. I've been thinking of you often. Susan even asks if I ever hear anything from you. This just stinks. I hate that you are having to go through this again.

Dare I say that it is good to hear from you, given these circumstances?

You've been there before and my wish is that you get through this quickły with the best possible outcome.

Im so sorry you are facing a recurrence after so many years!

Wishing you all the very best with everything!

Hi Bob,

Sorry you are back as a patient not a visitor. 14 years is a long time so there are likely newer insights and techniques for treating your cancer. I suspect options like proton therapy were not available back then and you have one quite close. UCLA is the best so that's a big plus.

You know the drill so nothing to add there. Welcome back does not fit but glad you are back. humm... that don't work either.

I struggle when they start to talk about "quality of life issues". Like you haven't had to adjust and do what you had to do for the last 12 years. Get rid of the dang cancer - apply some of the newer treatment options (radiation seeds perhaps?) and let you adjust and move on with your life. I think sometimes doctors do not give patients enough credit for being able to accept altered life situations. I know of someone from the Board who no longer posts - she has gone on to live her life - but she had a full glossectomy, found a way to take food orally and went back to work and her life. Hugs as you go through this - know we are with you.

Donna

I have to admit, it sucks and is totally scary too. I am sorry you are going through this again after such a long time. It's good they found it early - ish. Hopefully there isn't much spread, and as others have said... things are newer this time out hopefully it will be a little easier. hugs.

Thanks for all the support, just heard back about starting the tests. No word on when they'll do the PET/CT, I guess they're still scheduling that one, but the MRI isn't until Dec 9th. Seems a bit of a long time away for me, surgery won't happen until afterward, doc from UCLA want's the MRI to see what soft tissue has been involved.

Last time I did this things went pretty quick, but again, that was in another part of the world. First time for me in the U.S. healthcare system in recent years, not sure if this sort of wait time is normal.

Hello. Yes a recurrence after such a time period is indeed very frightening. I guess this is technically a new cancer rather than a recurrence.
The time period to PET sounds too long. Surely with insurance this can be done tomorrow? I'm sure others in the USA can comment further.
Quality of life issues? What do the docs know about this?
When Kris had his recurrence we were told his only option of life was the Total Glossectomy and Total Laryngectomy. Has it altered life? Of course it has. Would we rather he had died. Hell no.
Despite "QOL" issues , life is still great. Kris enjoys a very good life. We have just had a months holiday in Asia. He has no need of a PEG. He keeps our 3 acre garden looking good and is turning into a not too bad "House Husband".
Hope all turns out just as well for you.
Tammy

Sorry for your cancer diagnosis, none which make things feel any easier, maybe worse sometimes the 2nd or 3rd time around. I've been through 7, if that helps with any positive outlook for outcome. In fact, they say the longer between cancers proves to be more sucessful than one recurring in a short time. The MRI does sound somewhat longer than anticipated. I don't know if it's in the hospital or an outside facility, but maybe one can be scheduled earlier by contacting the radiology department or center directly, unless it's going to interfere with some other testing. After that, it can be hurry up and wait, depending on how busy the hospital is, and popular doctors may be out of town doing presentations, doing surgeries, meeting patients.

Good luck with everything.

This is just so not right! I am so sorry to hear that you have to face this again. They have advanced a bit in 12 years, lets hope and pray that the technology will make this pass without too much suffering. So is it SCC again or adenocarcinoma from the radiation? I'm booking an appt. with my H&N surgeon for an exam.