I was wondering, for those of you who have had a recurrence....how did you know? What signs / symptoms did you have? Did you find it - or was it picked up by a scan or a checkup in the office?

I am not worried that I have a recurrence - however, I just want to know what to watch for. My doctor has told me the obvious things, a non-healing sore, any lump or bump that is new, a sore throat that persists etc.... But, i'd like to hear from real people - not a text book, on how they knew.

Amy,

In Sep 2003, I was diagnosed with a right lateral tongue SCC. I had surgery Nov. 3, 2003 where 25% of tongue was removed. Good pathology results. T2N0M0 reported on Dec. 1, 2003. No radiation.

Everything seemed OK until Dec. 23, 2003 (I remember exactly when I first realized I could have a recurrence). I noticed a small "place near the bottom part of front of tongue and my wife noticed my breath was similar to that when I had my first SCC. This was a poor time to have it and I went through a couple of days denial during the Christmas holidays. Called the ENT's office after Christmas but couldn't get in until Jan. 12, 2004. Sure enough, another SCC!

Finally underwent 12 hours of surgery on Feb. 3, 2004. I am still coping with that. So to answer your question, I discovered it myself and it was confirmed. Hope you never have a recurrence but keep a watchful eye on any even minor oddities in your mouth.

Jim
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)

To Amy M from Amy. Don't ignore Anything that is happening with your mouth. John's recurance became obvious to us when he could not eat without pain-after being able to eat[by mouth] for several months after radiation. Don't second guess- go see the Doc. Amy

Thanks for your replies. I don't currently have any symptoms or signs of a recurrence - I just wanted to know what to watch for especially this year and next, since this doesn't seem to be an easy disease to beat.

I thought that a perfectly healthy salivary gland was a recurrence because I had never even really looked in my mouth before the cancer. We all had a good laugh over that. There are also discolorations from crowns, etc, and I tend to bite myself a lot. I have given up and leave it to the H&N surgeon - that's what I pay him for. Other than that - don't let it freak you out. Most of the stuff requires special mirrors anyway so you wouldn't be able to visualize it yourself. The tonsils hide behind the sides of the tongue so they aren't easy to see either. If there was anything involved with pain or a lump or palpable thickness then I would make an immediate appointment.

Both my cancer diagnoses were preceded by a voice change, as in getting lower and hoarse. Took three or 4 months before actual cancer found, both times by me. The first one was a lump in the neck with an unknown primary. The second time round was 4 years to the date when I swallowed a Centrum pill and felt pain. When it happened again the next day, I called the doctor who scoped me and found a tiny tumor. I has just been scoped 3 weeks earlier by my surgeon who congratulated me on my 4 year survival. This tumor was hiding in a fold in the laryx and had to grow just a little more to be visible.

As Gary says, most the time you need to rely on the profressionals, but don't ignore symptoms either. But I can also remember freaking out when I was on vacation in Belgium. I looked in one of the marvelous magnifying shaving mirrors they have to discover I had what looked like a huge growth on the back of my tongue. It was simply just one of those taste buds that go across the back of the tongue. Thank God I decided to ignore the problem until I got home.

Take care,
Eileen

Eileen,

I recently had one of those "taste buds in the magnifying mirror" experiences also! I hadn't looked closely in my mouth for awhile, and I had a slight irritation that caused me to get out a flashlight and a closeup mirror. Fortunately I was able to figure out what it was -- I had a routine visit with my periodontist shortly thereafter, and he confirmed it for me.

Cathy

Hi Amy,

Happy to see that you are just on a fact finding mission. I was worried that you had suspicions about something.

I think that the more you look in your mouth and the more you become familar with what is normal for you, the better you will feel. Of course there are many areas that you can't see and they need to be professionally checked. The papillae that form part of a triangle on the top back of the tongue are commonly a cause of concern for people when they first discover them. So Eileen's and Cathy's reactions were normal.

I always check the visible areas of my tongue, floor of the mouth, palate and cheeks. I also palpate my neck. Other than that, I rely on my surgeon's checks and plan to get a yearly laryngoscope done.

The concern about recurrences is something none of us will ever get over. We just have to live with this hanging over us and enjoy each day.

Jerry

Gary - your comment about the salivary gland is humorous - b/c I did the same thing. Although, I did find out it was the opening to what I believe would be my Parotid gland before I called the doctor. I realized it wasn't cancer - when I found the same little lump / bump type area on the other side - although it just wasn't as visible. It was inside my cheek and the way my mirrors are - the light reflected well to see on one side but not as well to see the other side - and I didn't find the matching one for a day or so.

I had tremendous headaches (Migraine) due to the tumor, behind the clavicle, pressing on facial nerves. It took six months of tests and doctors in denial. After beginning treatment the headaches went away. I have one more infusuon and then another look at the tumor....There is a very good chance for remission...
Darrell