Hello everyone.
I spent a lot of time on this forum last Dec and Jan. I had 1/3 of my tongue removed due to squamous cell carcinoma along with neck dissection for checking lymph nodes. they were ok. It has been quite a deal these last 10 months. I thought I was doing so well. I have had a different "spot" on my tongue for the last few months and the dr cut it out last week and the biopsy came back cancer. Just blew me away, although I was very scared that it was going to be bad news. You just get to where you think you know things are different. Of course, everything in my mouth is different now, so who knows. Anyway, I am just in a holding pattern until I see the surgeon next Friday for stitches to be removed and talk more about my options. They recommended in the beginning that at my age, I would be better to keep a real close check on it every month or two,, and hold off on radiation just in case it ever came back and we could do radiation then. The idea was that if I did radiation now and it came back anyway, I would not have radiation as a possiblity again. Have any of you had similar situations as mine? I really like my dr and trust him, but in the back of my mind is this little nagging voice saying maybe I should go to some special oral cancer place and see if their opinion for treatment is the same. The surgeon will give me a lot more to think about Friday and he will bring my case before the "tumor board" for the opinion of several drs also, but I just wonder what everyone thinks that has been through this stuff. It's all just a lot to try to decide isn't it? Any help you can offer will be appreciated.
Thanks

Hello,
My name is Gerry.I am a 2 time tongue cancer survivor and my heart goes way out to you. I know how you are feeling. I had a recurrence this summer. I do not log on too often as I only have computer at work and actually there are several reasons. But, I believe you asked, so I will say with a lot of force behind me.....PLEASE go to a major cancer center before you do anything. We only get 1 tongue and it is small. I love my Doctor because he is conservative. In 2000, when I first got cancer, I saw 4 different h/n cancer docs. Each had a different plan for me. I did not go to the Dr. I liked best. It isn't about that. And it is HARD to pick the right doctor for you. But I do know that the tongue is not worked on a lot, and the dr. must have experience in what he is cutting and a lot of it in oreder to be successful for you. I am a 49 yr. old female who lives in S. Florida and is struggling with the after math of this horrid disease. It has affected every area of my life. Do not get me wrong. I am grateful as heck to have a tongue and to be able to eat and speak although I am limited. W/out a VERY strong FAITH, I would have buckled under the pressure a long long time ago. My heart goes out to you.
Gerry

...yeah, Twin...what Oscar said...about getting yourself to a cancer center....and, in the meantime, welcome to OCF! There are many others here who will be more than happy to answer specific questions you may have regarding your situation.
All the best to you!..and you, too, Oscar!

Lois & Buzz in NC

Hi Twin, Definitely you should get yourself to a CCC. They may not recommend radiation but they may, since you've already had a recurrence once. This is not a disease to fool around with. It isn't just that "we only get one tongue and it's small" (though I love that line, Gerry) but that this is an agressive form of cancer, especally when it's already come back once,and many people seem to think it's best to hit it hard before it hits you too hard to fight your way back from. Also, it's not enitrely true that you only get to use radiation once. there have been a few people here who have had "re-radiation" or had it suggested.

Nelie

My daughter, 'Jordan',31y/o, has had a heck of a year. Radiation & chemo Jan/Feb. Docs thought they got it, long story short there was residual tumor. went to 2 different surgeons, took the one closest and at a good center. He couldn't resect when found involvement around the Carotid. Went to U. of Chicago and they went after it. Got it all, however when she went in for her reradiation/chemo CT showed new sites, including possible Lung Mets(which turned out to be pneumonia) She and her husband headed back today to begin her re-radiation and chemo. U of Chicago/Dr. Danial Haraf was one of the 'pioneers' for re-radiation I am told. Lots of serious complications possible with it. She had no risk factors and apparently a horrendously aggressive cancer. Best to you, go to a Cancer Center, SOON!

My story is a little similar to yours. I have had two primaries (both SCC) so far - one on my tongue and the other behind my left rear molar. Both were caught early and completely removed with clear margins and no vascular or peri-neural involvement. Like you both my cancers were completely different in appearance - one was a small ulcer (on my tongue) and the other a verrucous type growth. I did not have a neck dissection following either surgery as my scans were ultimately clear (after an initial scare with a CT scan the PET was clear). My ENT also advised against radiation, preferring to keep a very close watch on things. I too was concerned that perhaps we should be fighting this more aggressively, but I was strongly reassured that so long as we continue to catch the cancers early then I will be okay. I like and trust my ENT but still have niggling doubts as to whether this watch and wait approach is the way to go! I think the fact that you will be getting advice from a 'tumour board' is a good thing and they may offer you an alternative course of action in any case. The treatment regimes appear to be different here in Australia, but I too would certainly take heed of the advice that others have given to attend a CCC if you still have doubts after this meeting. Good Luck, and please let us know the outcome!!

Sue

Sorry I have been so long getting back on here. Many of you encouraged me to go to a cancer center and I finally decided I had to for peace of mind. I went to the MD Anderson cancer center in Houston last month. To make a long story short, they backed up everything my dr here had done and told me that I was doing everything I should to help myself which really made me feel good. I have managed to loose 85 pounds and feel so much better for it. They did find 3 suspect lymph nodes which scared me to death, but they done needle biopsies on each one and they weren't cancer which was such a relief... Just was in shock when they told me I needed to stay another day and check them.. Pure hell waiting in the motel that night for the tests the next day.. Thank god, it was ok. So, I am back to just watching close and seeing my dr every month for a while at least. The dr at Houston did tell me that since I didn't smoke, drink or chew, this was just a genetic thing..I have an aunt that has sent me an article about a soaps actress that has had oral cancer and the article says there is a connection with HPV virus ( I think that is what it was called. Has anyone ever heard of this.. It looks like MD Anderson would have known about this. The dr there wasn't very enthused about these kind of forums... I didn't say much other than if it were him who had this awful thing going on, he might feel a need to talk to others in the same boat too. Goes to show you, dr may be intelligent, but still people just don't know how this feels until it is you.. then it is a different story.. Anyway, just wanted to thank everyone for their words of encouragement and hopefully we can all give each other that little bit of encourgement we just have to hear some days.. Hang in there everyone...

Bigtwin,

If it weren't for things like "these kinds of forums" I might have never discovered that most oral cancer patients seem to receive an oral/dental screening prior to beginning their treatments. I would have never known the difference and would have undergone surgery yesterday for Osteoradionecrosis just thinking that it was just one of those things associated with radiation treatment and could not have been prevented.

Bill D.

I'd like to know who the doctor was at MD Anderson. OCF is listed on the MDACC web site as a reliable peer reviewed place for patients to get information and support from. They give out our refferal cards to this forum and OC information sheets. This guy, as far as OCF is concerned, is out of the loop. Jeez - our original science advisory board member is David Callander, who when he joined the OCF team was chief of medicine at MDACC. Their head of radiation oncology Dr. Ang is on our board, as is Dr. Jacob who is in dental oncology and prosthetics. I would say that MDACC is firmly involved and approving of OCF.

As to your doc saying this was genetic... ALL cancer is genetic in nature. The HPV virus is a documented independent cause and if you click on the word HPV in my post it will take you to the main OCF site page about the HPV connection.

The soap star is Colleen Pinter who has partnered with OCF to do TV public service announcements, appear on The Early Show on CBS for us, and more. We will be working with her a lot in the future, and her As the World Turns Character (Barbara Ryan) has just been diagnosed with oral cancer, a story line that will continue in the series for more than a month. She is definitely a survivor who cares about others.

(Posted by an ex-Missouri boy...)

I had tongue cancer twice, first dx in April of '03, partial glossectomy w/clear margins plus 5 wks radiation. Recurrence in '04 at same site...hemiglossectomy, clear margins, no other treatment, they said I would be fine w/regular checkups. I was worried about my tongue, kept regular ENT appts, PET every year, and still ended up w/tumor around carotid in May of '07. No one could feel it...I had symptoms, but thought they were a bad tooth, docs thought it was my heart when I kept passing out...finally my neck felt "thick" and I asked for a CT...there it was...radical neck, 6 weeks radiation which ended in August, still far from recovered. Whatever you do, be vigilent, more than vigilent...