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...

I have said it here many times before, I am not an advocate of surgical only solutions to these cancers. The rate of recurrence in those patients far exceeds those that have radiation or chemo the first go around with the surgery. Sadly too often these recurrences go unnoticed by people until they are very advanced, and there is little that can be done. Most of the recurrences happen within 24 months from micro mets that were left untreated (and not visible) at the time of the original incomplete treatment. The balance mostly happen in a period under 5 years.

Brian - I know you have said this many times. So why do the top rated places like MD Anderson still not recommend radiation and/or chemo? I know I went there wanting the absolute best treatment - I didn't care about the easiest way to get this done and thank goodness I am lucky not to have to worry too much about the cost of travel there. But they said no radiation even when I questioned them. It makes me nervous all the time, and I know I've had this conversation with others on the site.

On another point r/t MDA - what are we going to do about getting ALL their head and neck surgeons and nurses on the OCF bandwagon. I've emailed you about this before. I am willing to help in any way I can - I will be there in a week 1/2 and unfortunately my visit is turning into a longer one than I planned due to some extra tests I need to have - I am willing to do some unofficial surveys and campaigning during all the wait time I will have! Let me know your ideas - you also have my personal email in one I just recently sent you...

I must have had that email go into my spam filter or something. If you need literature to take to MDACC, send me a PM with you mailing address and I will get stuff to you on Monday.

As to your other question, I cannot believe that a person at MDACC went through a tumor board of all these different kinds of doctors, and came out with a surgical only recommendation unless their lesion was a carcinoma in situ or a VERY early stage one disease. When I state this opinion about surgical only solutions I am generally referring to ENT's that do surgery in the US, that do not routinely work with a multidisciplinary team, and there are plenty of those. That group I specifically want to have their patients go through a tumor board that include radiation and chemo guys, not to mention dental oncology people as well.

Brian,


Would it be fair to say that their are always Micro mets ?

Shar

Not if it is truly in situ, that is local only.

M

Markus is right. in situ lesions are VERY localized and have not really invaded deeply into the tissue even. It is the earliest possible moment of a malignant lesion. Obviusly without invasion there is no metastasis

OK , But I mean in a stage 1 or 2...?? Like I was a one but close to a 2 as far as the size of the tumor..It was barley under if right at 2 cm

Hi Sharlee,

Let's see if this will help you. I had stage 1 in 2004, had 1/4 tongue removed. Had no other treatment at that time. (this was just in-case it came back I would have the option.) It did come back in 2005 so it had already spread, but could not be seen in earlier year. So Then I had Surgery in 2005, Neck dissection, Rad.& Chemo. Here is my point, if I would have had the Radiation the first time, I would not have been able to have it again when it was truly needed. They can not radiate the same area twice.

My caution to you is keep all CT scans every 3 to 4 months. I did not get the scan after the first surgery. (it was a oversight in scheduling) It is important to learn and be your own advocate. I learned that here on OCF.

Hope this was of some help.
Take care,
Diane

When I had surgery in august,, the margins were only 1.5 mm. The Dr said he had it all and the margin was large enough not to worry about. Well 3 months later I knew it was back and now I have to go thru the teeth removal and seed implants. I wonder if this happened because I am in a cancer study? I did post that a local radiologist said I need the rad and if not it would probably come back. The big guys don't know it all..

I know there are NO guarentees..regardless....but I do find myself questioning the NO rad thing...And as my one year anniversary of my diag approaches I find myself questioning more.

I also have a new sore under my tongue,,it has been there like 2 weeks. I saw ent on the 4th ,he says it looks viral. Like I am comfortable with that ...That is what they told me the 1st one was. It has gotten bigger. it is sorta on bottom of tongue sort of on floor of mouth , kinds hard to describe.

Even Joe has said it has increased in size. I called Dr , he still has not alot of concern , but told me to come this week. So I need to find time...I just started a new job and Gabrielle has 2 appts for her surgery next week...ughhhhhhhhhhhh

Then the whole micro mets conversation .......


shar

Shar,

I tend not to respond much if all I have is "warm fuzzies" to give to other posters instead of practical help, but I can't help but to try and send love and hugs your way...you just have had a really hard road these past months. I try to imagine juggling a young family, a job and OC...so hard!

I guess what I want to say is that even those of us who just read and don't respond a lot, care deeply, shed tears, and try to send strength to those that need it the most at that particular time.

My best to you and everyone on this board dealing with almost impossible circumstances. I am listening and I am hoping.....Deb

Sharlee - Please do get yourself to see the doctor this week, soon - make the time. Whatever it is, you'll feel better for having taken the steps. Just wondering and waiting is the pits and you've already had so much to deal with. But all you can do is just one step at a time. I wish I could be there to help and give you hugs.

Shar - I know what you are going through, if you saw my most recent post I am also worried about some symptoms I am having in my neck. Last year right after Christmas I had an ulcer on my tongue and it started bleeding. I was POSITIVE that my cancer had returned. And, I could see by my ENT's face that she wasn't feeling really good about it, and she admitted that. But, the biopsy came back negative, it turned out to be your everyday apthous ulcer, and it went away.

What can I say - except that I think we all live with this fear of recurrence and any symptom at all gets those dark thoughts swirling. But, what Donna (pandora99) said to me was great "Try to not let this thief (cancer and the fear thereof) steal even another second from you. You've done what you can - now put that worry away and try to enjoy this day. If not, cancer - whether here or not - has stolen another day from you! Protect yourself against thieves!!" So let's try to remember this!!!

Brian,
I didn't mean to give the impression that my dr at MD Anderson was totally against cancer forums. I was so nervous I could have gotten a different impression than he intended. The best I recall (and I was upset about abnormalities he was talking about on the ct scan done the day before), I simply said that I got on an oral cancer forum to read what others were going through and he just said I needed to be careful getting advice from people who didn't know my exact situation since everyone is different and their cases are different too. I said I knew that I couldn't get upset about what forum people or any other people tell me I should be doing, as it has to be my own decision, but it sure is good to read what others feel that are going through similar situations.. Because no matter how much people care, they just don't quite know what this is like until it is themselves... As with any sickness or disease I guess. I did see Dr. Jocob (dental oncologist) and was very impressed with her down to earth attitude... With a couple of crowns put on, she felt like if and when the cancer comes back, I could withstand the radiation without having them all pulled.. Time will tell.
Anyway, I do think this forum is well worth getting involved in and appreciate other to talk to

I'm glad my Dr didn't tell me that. I have learned a lot about OC from the people that have it and fight it daily. He is supposed to be one of the best,, but after no rads or chemo.. he must not know it all yet. I guess we learn as we live and experience.

Isn't it funny how some drs and others as well, think they have all the answers until it is you. I guess we never know if radiation is right or not. They tell me here as well as MD Anderson that i should hold off on it. I just hope it never comes back and I never have radiation. I am a realist and I doubt that happens, but I can sure hope and do everything I can to make it happen. Good luck to you.

Dear All,
I too have had a recent recurrence and am in the emotional fallout of it's aftermath. I want to share soemthing: As far as the ulcers; after the first bout of tongue cancer in 2000 when the lesion was way bigger than this second time around, I came down with mouth ulcers almost every month for a year. They were awful! Painful and worrisome. The thing is this. For me, I am vigilant now. Anything that does not start to improve in 5 or 6 days I take to the oral surgeon. I had a clean bill of health from him and my cancer Dr. in May. In July I was operated on. Things can come on quickly with tongue cancer. I am proof of that. The key is vigilance and I check my tongue once a week and was told to be professionally checked every 8 weeks for the rest of my life.
Good Luck!
Gerry