I am 29 and was diagnosed with stage 1 tongue cancer. From what I hear I am lucky but I have had four surgeries and we all know how painful they are. I can't look at Ensure anymore. Right now my doctor says all looks ok but I constantly have pain on tongue and I worry all the time. Does anyone have suggestions on how to handle this waiting game?

YIKES! What is up with all of us young'ns! My only suggestion for handling everything is try and get back to normal as much as possible and continue on with life. Don't let cancer take over your life! When were your surgeries and have you had any other treatment as well?

I've had a total of 4 surgeries since March 2007. They say mine can be treated surgically so no other treatment has been recomended. I've had 2 opinions and they both said the same thing. I'm just wondering when they will stop needing to see me every 3 months. I also had a panic attack in Sept over this and that's just another hurdle. The emotional part is harder than the physical. Do you find that also?

Suzanne,

Are you being treated at a Comprehensive Cancer Center? In other words, who is 'they?'

A schedule of three month follow ups is pretty standard. And yes, the emotional is far more difficult than the physical. You might want to seek out a Cancer Survivor's support group in your area. For someone as young as you are, there are so many issues to deal with as you move forward with your life. Either a support group or a therapist who deals specifically with Survivor's issues might be helpful.

Sorry:) "They" are my doctors at a cancer hospital near my house. I just want to not be scared anymore. I actually just started seeing a therapist in Sept. She does not specialize in cancer but I find her to be helpful. I'm also getting married in March. I'm not sure that stress is helping either!!

For me, the only cure for the fear was/is time. I was treated for a Non-Hodgkin's lymphoma when I was 28 and it took years for me to not worry that every little thing that went wrong with me might be a sign that the cancer had come back. Good for you for finding a therapist, and honestly, I can't imagine how hard planning a wedding would be in addition to all of this! Yikes.

I agree with Margaret, only time is going to help - I'm no expert at this though, since my surgery was only a little over 6 months ago. I'm the type of person who doesn't have a care in the world so it takes a lot to get me down - I bounce back quickly. I just look at everything as a phase of my life and try to get the most out of everything and that has helped keep me positive through all this. You have your wedding to look forward to now so enjoy that! I was married two years ago and my husband has been amazing through all of this. Surround yourself with strong, positive people and that will help with the anxiety. I do freak out some whenever something unusual pops up, so I totally understand - remission is the hardest part because of the paranoia! And, at least you get to go to your doctors every three months - I see my ENT every 6 weeks!!! Haha, but that is standard and eventually you should get to every 6 months.

When one gets a second opinion make sure they are independent from the first.

I'm sorry I find your message a little vague, would you be able to elaborate a little more about your process. Although, it sounds like you caught your cancer very very early. I suppose the four surgeries confuses me a bit...and that's easy to do! LOL

You can reduce the stress of a wedding significantly by eloping!

Suzanne:

Welcome to OCF. Here you will find its a wonderful resource for questions. Please give a little more info about your history. It helps to understand where you are coming from better.

What part of Jersey are you from? There are alot of members from NJ and I grew up there.

If you are seeing a therapist, then you have made a very good choice. Cancer can really beat you up and many will require some therapy to get thru it. Alot of times survivors also need some anti anxiety meds. Its very common, nothing to be ashamed of at all. Check with your doc, let them know how you feel.

sorry to hear of your diagnosis. so happy for you with the wedding coming etc. this will give you something to take your mind off the bad you have gone thru and keep you busy with happy times! I hope for you that you enjoy the rest of life without further problems once you get rid of this pain issue. Worry is common but a waste of life so try not to do it anymore than you have to... focus on life and living it with those you love. I wish you the very best in life.

Thank you all for your comments. It seems I should explain a bit more. My 4 surgeries started in March 2007. My first biopsy was done by an oral surgeon and the results were dysplasia. He sent me to an surgical oncologist. I met him in April 2007 and had my second surgery in April 2007. That is when the cancer diagnosis came. Then I had PET scans done every 3 months and they were always clear. I still had some white spots appear on my tongue so my doc wanted to do surgery and biopsy them. That occued in May 2007 and July 2008. Those biopsies were not cancer.I have since changed doctors b/c I had a bad experience with the first doc I went to. I never worried when I was going through the treatment and testing. I still have pain on my tongue but my new doc is not too concerned. I find this time in my life to be the hardest.

I'm hoping with time I will start to feel like the Suzie I used ot be.

Hi Christine,

I live in Burlington County. I just moved here when I got engaged. Where did you live?

Seeing a therapist has been great. She is so helpful. One day I took all my pain meds and smashed them..lol everytime I saw them I went back to that time in my life. Crushing that and getting rid of them was very theraputic!! They have given me meds for my anxiety and honeslty I was not too happy about it. But the more I talk to others I realize I'm not the only one.

I just joined this forum last night and I already feel better:)

I grew up in Leonia in Bergen County.

I had 15 years! (1990-2005) of biopsies without cancer, just a mix of hyperkeratosis, parakeratosis, dysplasia, hyperdysplasia and leukoplakia before an SCC tumor finally sprouted at the site being biopsied.

thanks for explaining - that is why the confusion by some, as to why 4 surgeries ... but you are counting biopsies as surgeries, correct? your surgeries have all been biopsies thus far?

If the test show no cancer, It was well worth it to have them done. I wish a few of mine came back negative. I supposedly have the OC whipped for now. Welcome to our home that has all friendly people in it and all are helpful.Susie, you will be fine . You sound like a fighter.

I am counting the biopsies as surgeries. I know I am lucky as far as oral cancer is concerned, but I'm still pretty scared. I wish there was a way to determine if the irritated tongue is cancer without a knife:)I try to be stong and fight but once in a while it gets very hard.

My doctor has told me to let her know if I have any ear and/or throat pain. Once in a while my ear hurts so I did let her know. When my appointment came around the pain had left. Now it's back. Does anyone know about this? Had anyone had ear pain that turned into something more?

I would also like to know that answer. I have off and on ear aches too. I am attributing it to healing and was not told what to look out for as being odd. Thanks for asking that question. Inquiry minds do want to know.

Im geographically challenged, so I appologize in advance. Is Burlington county towards the shore? South Jersey?

I grew up in Warren county, very close to Hunterdon county a very very small town of about 100 called Finesville. Im now in Lehighton PA which is about 45 min. from NJ. Where I live is considered the southern Pocono's, if you have heard of that. There are several active members who live in NJ.

There are also some events being planned for next year in NY and in PA (not sure about NJ), which you may be interested in attending. Its amazing how much better you feel just be meeting other oral cancer survivors in person. When I met some, I cried out of sheer releif that I wasnt alone in my suffering anymore. I actually now knew in person live people who understood how bad it can be. By the time these events take place, you may be up to going and meeting some OCF members in person.

Im not sure if I understand your post. You said that you had counted your biopsies as surgery? If you have SCC stage 1, how was this treated? Biopsies only confirm it is cancerous. The PET scan will help to stage how far it is advanced. Sorry to sound dumb, just trying to understand how you are being treated.

Glad you are feeling better now that you found OCF. It does take a huge burden off your shoulders just knowing there are so many others out there who have been where you are.

Christine,

As you know the Delaware River separates PA & NJ. Burlington county is below the big bend of the River causing the indent in New Jersey's western coastline. Burlington is just below that bend. Not being from NJ I would consider that to be the Northern end of South Jersey, but I would guess some would call it central Jersey. The closest members to Suzanne are probably Eileeen in Trenton and DonnaRose and me in Yardley.

Suzanne,

It might better to clarify your signature to indicate that you had a biopsy followed by surgery and then 3 follow-up biopsies. Although biopsies are surgical procedures and can be painful for a time after they are done, we generally don't put biopsies in the same category as the glossectomy itself. I think this is why some members, including me, have been confused by the 4 surgeries. Please let me know if there is anything that I can do for you being that we live so close.

I hope this has been helpful to you two.

Jerry

PS I know that Susan Lauria is planning a second walk in the fall for David and the one in NYC in April and the one that Eva is setting up for May, might do doable for you, Suzanne.

In response to Jerry and Christine,

Sorry to be confusing, I see what you are saying. In April of 2007 was a biopsy and the 3 after were each a partial glossectomy. The last being the most invasive.

Christine,
I am only treated surgically now. From what I understand that is usually what is done with T1.

Still a tad confused...what prompted them to do 3 additional surgeries especially after getting the all clear after the 2nd and then after the 3rd?

Suzanne

Ok, now I understand. Sorry.

I was also Stage 1 but the location of mine made me do the radiation and chemo. Then it came back and I ended up having surgery, but it was no where near what it would have been in the beginning.

Consider yourself very lucky to have had only surgery. Much easier on the body to recover from than rad and chemo.

i have been asked that too - any ear pain? been asked both before surgery by the surgeon and then by the radiation oncologist ...

ear pain is a "symptom" of oral cancer activity.
HOWEVER it can also be a side effect of some treatments, including surgery so one wants to report it but not be worried about it unless the doctor is.

someone else may know more reasons why they ask it DURING or POST treatment ... i am not positive the above are the only reasons.

David,

The other surgeries were promted by white lesions on my tongue. I actually have changed doctors since. I felt as if my first doctor loved to do surgery and never let me ask questions. It was always cut...cut...and more cut. The doctor I see now is ok. She has yet to do any surgery. I still feel pain sometimes which worries me but every time I see her she says all looks ok. Does that explain a bit better?

I've noticed nobody mentions where they go for treatment except one person who has it in their signature. Is this something that is not to be discussed? I think I read that when I first signed up.

Suzanne,

We do discuss where we're being treated, its not a secret or verbotten

I was treated at Dana-Farber in Boston, for example.

- Margaret

Thank you for the info Margaret:) I wasn't sure. I go to Fox Chase Cancer Center. Does anyone in the PA area think that is best place to go? I started at University of Penn in Phila and things didn't work out my doc there.

Suzanne,

Fox Chase is a comprehensive cancer center and an excellent facility. I�m from the Allentown, PA area and was treated at Lehigh Valley Hospital, another excellent facility. There are a few of us on the forum that were treated at these hospitals. I went to FCCC for a third opinion and was very confident in the doctors and facility. I went for a second opinion at the U of PA and had issues with the doctor I saw � it could be the same one you saw as he has a reputation for being difficult. You don�t want to mention publicly on the forum anything negative about a particular doctor. I�ll send you a �personal message� with more information

There are other ways to do biopsies that don't involve a knife -- There's punch biopsy where a small, round sharp tool is pushed into the flesh to make a plug, the plug is snipped off and the hole heals without stitches -- There's also FNA, where a fine needle is pushed in to collect a much smaller sample.

The attractive thing to the doctor about the knife biopsy is that whatever it was is usually gone!

I now have ear pain following my free flap and I believe it is from a sensitive spot in BOT or throat -- If I touch it, my ear hurts -- I suspect that some nerves got crossed when the Cutthroats were doing their thing because there is also scarring in that area.

I had ear pain and as the tumor grew the pain increased. When they removed the tumor the ear pain disappeared.

My tongue bothered me for months with spicy foods before the tumor was ever seen.

My symptoms before anyone noticed a tumor was:

earache

burning sensation on tongue (where tumor eventually developed)

my teeth on the left side felt like they were going to fall out

I went to Moffitt in Tampa.

UPA & Fox Chase are up there, another great place is Cancer Centers of America--I was unable to get in that one, but by the time I was trying the cancer was rapidly growing. I was treated at LVH--Morgan Cancer Center, Allentown Pa. I was more then pleased with my RO, MO & ENT. When I was in the Hospital due to dehydration he stopped them from putting a PEG in--He was like whoa, slow down..Let's find the problem, the kid didn't come this far then all of sudden need a PEG. It was the Fentanyl patch that was making me nauseous and unable to keep anything down & he caught that when no one else did. In NY there is Sloan Kettering and you can't get a better ranked tx center. But, Philly has a lot of good places.

Thank you Ray. That is what concerns me. I have on and off ear and tongue pain. Was your constant or did it come and go? I told my doc this a couple weeks ago and she didn't seem too concerned. I go to see her again next Monday so I'll see what she says. What kind of test did they do to determine the tumor? Was it visable to the eye?

I just saw your last post. I like FCCC but I feel like I'm pain to my doc. I worry a lot. I just need to know that the pain I have is normal. Something tells me it is not. During my treatment I have had times with no pain. So now that it's back I'm not a happy camper.

Suzanne,

I had my surgery at FCCC and still, go there for follow-ups. I am on an 8 month recall now and get a chest x-ray once a year. I was treated by Dr. R., who I am sure is the one you see.

If you want to discuss anything about him or FCCC, send me a regular email.

Jerry

Suzanne,

My tongue pain started late November 2007, my regular Doctors were not concerned. They all said it's nothing, I had no sore and my tongue would only hurt in that location when I ate spicy foods. Later, other products would bother that location. Then a sore developed, then an earache that was persistent and eventually it felt like my teeth were going to fall out. The tooth pain would come and go. Long story short, after my surgery and the tumor was removed--earache and tooth pain was gone and I was able to eat spicy food again! Radiation took care of that...

Stay on top of it...I would get another opinion. Others here would have more info but I believe a brush biopsy is another option.

Thomas Jefferson is another good hospital in Philly.

A nurse associated with my hospital but not my ENT said that within the last two or three years she noticed a few people from the Philly region coming in to see him. If you want, PM me and I'll send you his name and office number. Allentown is about 45-60 minutes with no traffic using the turnpike. Not sure how far you are. Looking back, for a second opinion in a timely fashion I would have gone anywhere. My ENT said I should have seen him back in January or February 2008 when I had no sore visible. I found out the hard way that not all doctors even some specialists know what OC is.

Ear pain, tongue pain and dry mouth,pain in the throat, gum pain. I wonder when it will end. Nothing has improved at all as of yet. As for Hospitals, I have been to 2 of them locally, WV University Hospital, Ohio State university James CCC Hospital .But each one did something different for me and this OC. Just love those needles biopsies when they go into the tongue or thru the neck into tha gland just below your ear. We sure do journey thru this OC.LOL

Thank you all so much for the feedback. I really feel like I can ask my questions here. This sure is a journey. Ray, what you are explaining sounds like what I went through also. Back in 2006, 2007 my tongue always hurt. I wore mouth guards and used Kanka to numb it etc and finally went for a biopsy in March 07. I went alone for the results. I never thought it would be anything. I remember being dumb founded. The nice ladies at the desk were making copies of business cards with specialists info and as I tried not to break down. As soon as I stepped outside I burst into tears. It's beena roller coaster ever since. I wish I found this site earlier!!

Suzanne:

I was treated at Lehigh Valley Hospital in Allentown, like Ray and Susan. The doctors and nurses there are wonderful. Im very happy with all the doctors who treated me. Especially my ENT, he is the best in the Allentown area. Others here are patients of his too.

Suzanne,
I was treated at Univ of PA both times and love my doctor there. However, there has been dissatisfaction expressed on this board from time to time about one of the other Drs so maybe you ran into him. You may email me about HUP if you like.

Ear pain is one of the few symptoms of oral cancer so I would not ignore it. Pain is NOT normal so you need to find the cause, be it cancer or not. What have they done to try to find the cause of the ear pain? What type of Doctor are you seeing at FCCC? Is she primarily a surgeon? Have they run any scans? I would ask for a second opinion maybe from an ENT. The two treatment centers you are dealing with are some of the best in the area.

Take care,
Eileen

Hi Eileen,

Thank you for your information. I know HUP is one of the best but the doctor and I didn't get along very well. He was very cold and I need someone with at least a little compassion:)

The doc I see FCCC is a surgeon. I agree with you, the pain in my ear and constant pain on my tongue is not right. She keeps saying it just looks irritated but isn't that the problem? No scans, nothing done to determine the ear pain. The ear pain just started about 3 wks ago. I did see her when I started to feel that and by the time my appointment came around my ear and tongue felt considerably better. I'm sure that is why she was not too concerned. However, the ear pain is back on and off and the tongue pain is on mych more than off.

I'm thinking about asking her to biopsy it so I have some piece of mind. As you may have seen in previous posts, I'm getting married in March and I don't want this hanging over my head.

Does anyone think it is silly to ask for a biopsy? lol

No it isn't silly. Ask them for one. I had one done a few months ago for mt ear. They did the biopsy by doing a needle biopsy right below my right ear in the Gland. It's not the best of feelings , but it relieves your mind.

I agree. Having piece of mind is huge

Explain to them that the pain is persistent, it comes and goes but is persistent and tell them you need to know why..don't ask but insist. You've had confirmed SCC, so it's not silly to ask. My ear and toothaches were directly related to my cancer. I'm not saying yours is cancer related but it hurts for some reason and you need to know why. After a series of tests they determined I had some hearing loss, but nothing abnormal for my age, I also had no infection, so after the process of elimination my ENT said it was most likely cancer related and he was right. I was complaining about on again and off again ear pain for about 2 or 3 months before I was diagnosed for OC.

You said it best..I have to insist. I usually just ask and whatever they I say I say ok. Then I get in my car and kick myself. Thank you for the confidence. I'm ready to go in there and not leave until I have some answers.

Remember, the doc you are seeing is a surgeon. She may not be the best one to diagnose ear pain. Maybe you need an ENT. As for the biopsy, do you have a specific spot that hurts that you can request them to biopsy? If not, I'd request a PET/CT first. Whatever, you are right, you need to get to the bottom of what is causing tis persistent pain. If you current doctor won't do it, see another one.

Take care,
Eileen

Thank you all. I go on Monday so I'll let you know what happens:)

I went in today because my ear pain was getting worse and I could feel a hard spot and a very sensitive spot down inside my pharynx on BOT -- I also wanted a referral for throat dilation -- Doc Haakenslash (ENT and Oral Surgeon) decided that a biopsy was in order to see what was up before other stuf like dilation.

I have to say it was not fun because of where it was located -- Any further down would have meant in-patient surgery, but he was able to numb it some (not fully, fortunately I have some pain tolerance) and had to do some wrestling to get some snips, as he couldn't get a good enough angle for the punch tool.

I am starting to associate that office with pain and realize it's no coincidence that the chair is a lot like the kind one finds in a dental office <grinz>!

We all forgot about pain meds, but I called nurse from ferry when the numb started wearing off and got a script phoned in to the pharmacy. Good stuf, that hydrocodone!! Ten minutes after taking it, the site didn't hurt, the ear didn't hurt and the headache was gone!

Asked about what we will do next if biopsy (due Monday, another fun waiting period) comes back with SCC, expecting to lose a LOT more tongue, but he said we'd do surgery and another graft to fill the void and prevent future problems. I told him I had another forearm, two legs and a lot of shoulder to recycle!

Tune in next week when we find out if there's going to be another PEG in Pete's future!

PS On the good side, I stopped by the pet store and they had my four, male Long-Tailed Norwegian Hamsters ready to take home -- I now have a lot of company named RatHuey, RatDewey, RatLouie and RatPhooey!

They did the biopsy while you were awake?!? I've always been in la la land for any procedure:) I guess I've been lucky.

I will be thinking about you and I hope your biopsy comes back with no SCC. Definitly keep us posted.

In the mean time enjoy your hampsters...I love the names you picked out!!!

Good luck Pete.

I've had a number of biopsies (Hmm, this is #13 -- White spots started 15 years before my first tumor emerged) and they have all been 'awake', but they were all very accessible except this last one.

Thanks, David -- My daughter is coming for a visit over the weekend, so I'm not letting the wait put a damper on things.

Pete,

I'm afraid I require photographic evidence of these alleged "hamsters."



- Margaret

Pete,

I hoping the best...let's hope it's nothing, you are in my thoughts

Hi Pete,
Best of luck with the biopsy result. Good to hear that your daughter is coming for the weekend to take your mind off the wait.
Love the name of the new family additions but as there were only 3 Donald Duck nephews you settled on RatPhooey for the fourth
BTW What did happen to ratatouille?
I am having another operation on the 29th January re join between flap and tongue but a variation on the previous 4.
(You have seen the photo of my problem)
It is freaking me out a little and for the first time I will post a new thread of my own to see if anyone has had the same problem over next couple of days.
Chears
Gabriele

Oh ye of little faith! Wiki sez this about the Quack Pack (Hmm, that could be a backup name for Doctor Haakenslash and the Cutthroats!):

"On a few occasions, there is a fourth nephew that appears, slipping through by a mistake of the artist. He has been named "Phooey Duck" by Disney comic editor Bob Foster. One short Egmont-licensed Disney comic explained Phooey's sporadic appearances as a freak incident of nature."

http://en.wikipedia.org/wiki/Huey,_Dewey,_and_Louie

I will post a pic when I take one -- I don't want to wake them when they are sleeping, but it's going to be hard to herd them into a group when they are awake... I am delighted at how much they are already cheering me up!

The late, great Ratatouille was born in Florida at the Rodent Ranch (No joke; a commercial undertaking raising mice, rats, hamsters, guinea pigs, etc), traveled up the East Coast and out to the Maritimes and Newfoundland (which is pretty far East, by golly), back to Florida, across to California, wintered in Washington and traveled to Alaska in 2001, where he is buried near a lake, having lived about two and a half years which is pretty good for a snake-food tank rodent!

[img:left]http://www.neon-john.com/Files/files/RORT/PeteNRat%20%28Small%29.jpg[/img] [img:right]http://www.neon-john.com/Files/files/RORT/Rat-asks-if-he-can-bring-his-teddy.jpg[/img]

Cute stuf here:

http://www.ratzrealm.com/index.htm

OH MY!!!!!!

You werent kidding about the rat. Love all their names.
Very nice pic

Hope all goes well with your tests. Its a scary time waiting for results. Glad you have some pals to keep yourself busy while waiting.

Oh Pete! Ratatouille was a handsome devil. I am tempted by the ratties, for sure, but I have a three species limit in my house - me, the rabbits and the cats for now.

Thank you for sharing that picture!

There was a lady at work that would adopt and take care of injured rats. All of her rats were handicapped in some way.

My ex and I were at a company Easter picnic and there was going to be an egg hunt (planned by a non-parent) with one specially-marked egg which would win a live white rabbit -- Parents started walking up to the planner and telling her that SHE would have to explain to the winner, if it was their kid, that they couldn't have the bunny after all.

Long story short, we took the bunny home, locked it in the hall bathroom for three days and it picked a corner as it's habitual potty place, where we put newspaper. Had bunny for half a year or so, with dog, but bunny started chewing on all sorts of stuf and decided that since it was up on couch, it could pick new potty...

One Saturday, when as Dave Barry would put it, "There may have been some beer involved in this", I saw a small, unknown to myself or neighbors, child walking down the street pulling little red wagon. I asked the kid if he liked bunnies, then if he wanted one -- Last I saw of the kid or bunny was them turning the corner with bunny in wagon... Bet that kid's mom never let him roam again!