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

Hi, Darrell. Hope you are faring well through this. I've been thinking about you. Amy

James,

"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."

I too had noticed a very distinguishable and quite nasty breath smell before my husband was diagnosed and for a few weeks into treatment. The smell is now gone. I was wondering if that smell was related to the cancer myself.

Darrell,

Glad to hear you are doing well! Praying for continued miracles to drop in your path.

Ed

I also fear re-occurrance. I had small white patches that I FOUND MYSELF all during 2005. I went thru 3 surgeries at the Local Oral Surgeon's office for biopsies. Each time they came back calling it Leukoplakia, blah, blah..that could turn in to cancer. That alone was bad enough.

Finally the 4th time I saw a small white patch, I insisted on someone with more expertise. So I chose Sloan Kettering in Feb 2006. I had surgery, I recoverd (more or less) and went thru 2 checkups.

Now it is August, and I found some white patches a couple weeks ago, watched them, went to the dentist, and then made an appointment. Someone here said don't wait..let them diagnose. I agree, so I made the appointment (Thank you to whomever for that advice)

These lousy spots, they seem to come and go.

Am I crazy?? I look in my mouth, with fear, all the time.. praying no new thing will pop up. Meanwhile, I have an appt. 9/1/06 for Sloan Doctors to look at it. I had 2 good checkups..this will be #3..and it scares me, but this morning I look in, and its almost gone? I think I lost it?? Maybe it jumped out on to my toothbrush. I wish!!

Life is so busy, I have elder relatives I take care of, I don't have time to be sick.. I hate it and I hate the paranoia .

Thank God for this website. I feel so much better, I learn from each of you, and I pray for you all. I may be at the beginning of a battle, but I refuse to lose the war.

Nanci,

Keep following up with the white patches. Being dilligent will only keep you on the right side of progression. Try hard to relax between visits and they probably recommend follow up every 1-3 months depending on who you see. Stay with the experts (i.e. Sloan-Kettering) and remember it aint cancer till they can prove it. Have them educate you on Leukoplakia and which types are more aggressive and warrant watching closely.

Ed

Nanci --

My husband is in a similar situation -- his dentist noticed a small leukoplakia on his tongue in early May. The report for the initial biopsy, by an oral surgeon, indicated moderate dysplasia but warned of a possible "skip effect" and strongly urged a more thorough examination; a subsequent excisional biopsy by a local ENT showed SCC in situ and a bit superficially invasive. A followup PET scan had no areas of concern.

At that point, he began being seen by a Johns Hopkins CCC ENT and had his excisional biopsy slides re-read by the Hopkins CCC pathologists. So far he has not required additional treatment (knock on wood).

He has had two "everything's fine" checks at Hopkins and is being seen there every four to six weeks for the first six months. During the second six months, that will stretch out to every eight to 10 weeks, assuming everything stays good (another knock on wood).

The doctor noticed a small white dot during the first check, but he was not concerned and it was gone at the second visit. Both my husband and I know that oral cancer is pretty much all that these physicians see, so they recognize what could be a problem and what likely isn't. My husband is also checking his mouth himself to be on top of anything that might crop up.

As Brian wrote back when I first asked on the boards about leukoplakia (before we knew it was SCC): "Keep an eye on this from now until forever."

I wish you the best.

-- Leslie

Uptown, Leslie,

Thank you for your input. My checkup at Sloan is Friday, this week. I had my local dentist look at the new white spot, we waited 14 days, ( he waitted, I watched intently for 14 days) it was still there, so I pulled my Oct. appt. into September.

Someone here suggested Green Tea swishing. So now I brew a cup of tea, add a small portion of Splenda, and keep it in the refrigerator. When I go past, I open up, take a swig, swish and swallow this lovely brew.

Ever since, Guess what!!! ...the white spot has been getting smaller. I think, when I get to Sloan on Friday, it may be gone. So, maybe the anti-oxidents in the TEA are helping???

Well, what a surprise!!!! I know lots about Leukoplakia, God Bless the internet, and WEBMD and the Merck manual, and I guess you are right, WE WATCH FOREVER.

Thank you all.. for your support.

I would like to add that my hubby's recurrence was found on the first annual PET scan. No one has been able to determine "conclusively" that it is cancer...but highly suspicious. I wish they had done a PET scan right after he finished surgery and treatment so they could see the "new" landscape in his neck. I do not feel confident that the recurrence in his neck is not a false positive. A biopsy has not proven conclusive. He feels fine and looks fine. ?*&%$

TomM,

From everything I've seen on this site, I think it's quite typical NOT to have a PET scan soon after treatment -- there can be so much scarring (and other irregularities) in the treated area that doctors can't get a meaningful read and can too often get false positives, which is why they will wait awhile to do followup scans.

Cathy

My first post treatment PET/CT was at three months, with followups every 6 months. My ENT will do a visual/palpate exam tomorrow.

I found my recurrance myself when I felt and saw a white sore appear at the site of the orignal resected area of my tongue. I had another major surgery and I have had two small ones to remove oral granulation tissue. Fortunatley they have been clear

Does anyone out there have new info on timeframe when the first post-treatment-(chemo) PET scan should be done. My husband just finished a clinical trial of gemcitabine and paclitaxol the end of February. He had a PET exactly one month later Mar 27 which shows cancer still lights up in same areas. Is it possible the chemo is still working and hasn't had time to kill the cancer. I know this is probably a stretch.

I think that one month later the area is still in repair, and as such would have a higher SUV. There have been tons of threads here about early PET's after treatment that were hot and there was no disease in the area. Remember that PERT's are not diagnositic of cancer. Lots of things from healing to infection, to damaged joints will light up a PET. By the by, a PET right after his surgery would have shown that area hot from the healing....this is not a baseline that would have helped anything.

Tom, it took Jack 3 PET scans until he got one that was clear. That was 5 months post treatment. What is the MO saying that it means? It's possible that the area is still irritated from treatments and lighting up from that.

I can understand why this would be upsetting for you, hang in there.

Regards JoAnne

Brian and JoAnne...thank you for responding. The MO says the March 2007 PET scan shows no change from the June 2006 PET scan. The Jun 2006 PET showed a 1.3cm node in the right lung and a 1cm node in the left neck that were hot for metastasis. By Nov 2006 the neck node had increased in size to 3cm and the lung node to 1.6cm. The chemo regime Tom began in Nov and completed in February reduced the neck to 2cm and the lung to 1.3cm according to the CT scans. The PET says - still hot.