Hey there, my name's Fran, I'm 32 and I'm from Italy. Last July, after suffering for six months because - I thought - of some dental surgery (my dentist was shown the scar on my tongue and said "it was nothing to worry about") I have unfortunately been diagnosed a stage 2 small tongue cancer. Being a young patient, the surgery was quite aggressive, part of my tongue has been reconstructed (they wanted to leave 2 cms wide margins) ad all lymph nodes in the area removed (and luckily negative). Everything went well, I've been told the hospital I went to is the best in Italy for these matters, and I am quickly recovering. Now, the docs sent me to some radiotherapists to evaluate the possibility of some supportive radiotherapy, considering my young age and the type of cancer. I have seen a couple of them, so far, and both said radiotherapy is not a reasonable option in my case, as there are a lot of contraindications (teeth, saliva etc...) comparing to the uncertain benefits I could gain (having had the whole cancer removed). Still, the guys who had my surgery done insist on radiotherapy as a praxis. I feel very confused. When everything started the doctors said the quality of my life would not substantially change, now it seems that, if I choose radiotherapy, I will have to face a very difficult change in my life. I feel betrayed. I think I'll hear just one more doctor and then decide, or else I'll get mad. It's already very hard for a weak person like me to face this, and I think I've been brave and rational so far... but I'm sure that if I stopped getting better, and eating, and if I lost ny teeth at the age of 30, well, depression would come as fast as hell. All I want from the doctors is to be very honest, to tell me the pros and cons so that I can make my mind up in full cognition.
Thanks.

Francesca,

Look at how far you've come. The next step is just gathering the right information to make an educated decision. A friend of mine has a similar cancer (tongue-no lymph nodes-good margins), was treated at Sloan in NY, did not have chemo and radiation, and had a reoccurance. I can put you in contact with him via e-mail to share his experience. He since has had another surgery, chemo and radiation, is doing great two years later, and is expected to have a full recovery.

Regards,
Rob J.

Francesca

I had 25% of my tongue removed and neck disection all nodes clear and clear margins and I had no rad and chemo. so far so good ..Do I wonder if It was right decision ..sure somtimes I do. I went to Dana Farber in Boston Mass. as well as mY local Drs here. so I dunno . Rob I would love to talk to your friend.


Shar

Dear Fran,
I think no matter what type of treatment you decide upon, once you have cancer, it seems your life will change. You are young, you have a full life ahead of you. My mom has gone through 31 treatments of IMRT, 8 cycles of Erbitux and just this past week brachytherapy surgery. I can tell you that her saliva is still pretty good. There are many products on the market that are beneficial in aiding saliva, Biotene for one, my mom still prefers the sodium chloride she gets from her doctor. As for the dental end of it, you could get your teeth taken care of before hand, any damage or teeth that need to be replaced could be dealt with after. We have two dentists here at OCF, Jerry Wilck and Dr. Mike, who can shed a lot of light in this area.
Fran, I can't imagine wondering what if I didn't try this if some of the doctors are feeling so strongly about you following through this way. My mom was originally supposed to have similar surgery to yours but because of a heart condition which she was unaware of she had to go in a different direction. All along the doctors felt she would benefit from the radiation after surgery had she been able to go that route.
Read here and ask questions. So many dear people have helped so many, you just might find the answer you are searching for. Good luck to you, try to calm down, and I hope you find peace in whatever your decision is.
Donna

thanks guys, I'm still thinking about it, amd looking at my papers I just "found out" my cancer was at stage 1 and not 2 (the number 2 is referred to what we call "grade", the type of cancer), which is already a good thing, of course.
I'll see another doctor today, but I don't think seeing too many would be a good idea, and I also should stop reading studies and stories on the internetbecause I'm really getting obsessed here. Before this amlethic radiation thing I was doing quite well, eating and working from home and feeling "normal".

Francesca, I had 37 radiation treaments, as well as chemo, and I have all the saliva I need, seriously. I would guess about 95% of pre-treatment amount. I just want you to know that with IMRT, saliva can often be preserved.

The only lasting effect from radiation for me is that drinking any wine at all is like putting a lit match in my mouth as my tongue just cannot tolerate any alcohol. This is probably a good thing, but was a disappointment for me.

I just want you to know that if you do decide to have radiation, you will not be changed so much that you cannot live a normal life.

My thought was that knowing how persistent this cancer is, I wanted to hit it with everything available. That was more than 5 years ago and I feel absolutely fine and am very active and social.

Whatever decision you make, I wish you good health.

I'm glad to hear what you say, Joanna, and I think you have been very lucky (did you have radiation of the tongue? what kind of problem did you have), but I also read about very different reactions to radiation. I think it's very individual, and of course if you take the risk to undergo this treatment, it's only in the end that you find out about your individual reaction.
Even the therapists told me about losing teeth and saliva...
Also, according to some studies I read, once you've had radiation you cannot have it again, you've used your last weapon.

If I had a stage one cancer, I would seriously consider not having the radiation. I have a woman here in my town that had stage one on her tongue and that was 11 years ago, she never had any other issues other than part of her tongue was numb and she bites it sometimes.
Also, be aware that it's not true anymore that you can only have radiation once. Re-radiation is getting more and more attention.

Good luck making a decision.
Minnie

Thank you Minnie, I will consider the re-radiation thing.

I agree with Minnie. If my cancer had been Stage 1 instead of stage 2 and did not have the risk factors it had, I would definitely not have had radiation. I am someone who had a very hard reaction to the radiation and there's no question it has affected my quality of life (though there is still plenty in life that I enjoy).

Francesca, are your doctors wh want you to have radiation giving you a reason for why they think it's important, even though your cancer was only Stage I?

Nelie

hey there, Nelie! I will definitely ask my doctors their reasons. According to what they told me so far, the reason is that "they have had recurrence in such cases and do not want to risk". Another reason, they say, is the type of cancer (but I read here it is well/moderately differentiated so that sounds strange) and my age.
The protocols say I should not do it, but sometimes you don't know whether to agree with protocols or with humans... I think the docs are simply concerned about not making me take the risk of recurrence, and I certainly can understand that. On the other hand, I ask myself, what kind of risk is that, and does it really disappear with radiation?

Francesca -- While not as young as you, and with a more advanced cancer, I took the mindset that I wanted the most aggressive treatment possible to maximize the chance of a long term cure.

With a clinically negative neck and clear margins, I can understand your reticence. Radiation is not fun, but it was better (for me) than I expected, and I am not limited in my activities in any material sense. Yes, my taste is not what it was, but it is improving, and I need to drink lots of water when I eat certain foods, but other than that, my experience has been very positive, and I am presently cancer free.

Studies I have seen show that radiation treatment after surgery and neck dissection does significantly reduce the recurrence rate. Of course, nobody can say for sure whether you would have a recurrence in any event.

It is a highly personal decision, and balancing the side effects with the benefits is difficult, particularly for someone as young as you are and with an early stage cancer. Best of luck, whatever you decide.

Francesca - don't you wish there was a magic formula that said "this is exactly how you should be treated"? Unfortunately, there isn't.

I had exactly the same diagnosis as you, and was treated at MD Anderson, one of the top-notch head and neck cancer centers. They told me that given my clean margins, etc, that no radiation was necessary, so I did not have any. Do I sometimes wonder if that was the right choice? Yes... but yet I am also thankful I did not have to go through the radiation... and so far, I am doing well...

I know it's overwhelming as you look at all the information, but it is better to be well informed and also to sometimes question your physicians - they are not God and don't have all the answers, either...

Thank you all guys, this is really helping me. I know that the docs cannot be sure about the results, but I also know that they can inform me about the possible reactions, the pros and the cons. In the end it's me, I'm the one to decide, me alone... I know that, and I'm glad that, at least, I can still decide.

Francesca,
especially with IMRT it is difficult to compare radiation effects because the extent of the irraduated tissue volume and location can vary greatly. This also means that the side effects are quite variable and depend on location/volume that is zapped. Depending on your particular case the volume may not be that big, on the other hand just because it is possible now you do not want to be too skimpy and miss stuff.
Perhaps this is a point to discuss with your docs: the extent of tissue they would need irradiate?

Markus

To: Me2 (Ginny)
Hi, Ginny; my name is Luanne; I'm Hank's wife. He recently completed radiation for SCC of left tonsil, and base of tongue. This forum is SO helpful; wish I had found it sooner! I was interested in the clinical trial you are enrolled in---can you share some information, please? Thank you. Luanne

I have been called 2 times by a radiologist and gotten 2 letters, one of them registered. He thinks I need radiation and I do respect his opinion. I sent one of the letters to my Dr at James Cancer Center at Ohio State. He called me and said I don't need radiation and gave me reasons why not. He got all the cancer when he removed part of my tongue and the 8 nodes he took out of my throat are negative. But I do wonder. The Radiologist thinks radiation would ensure the Big C wouldn't come back. I lean toward my Dr at the cancer center. Any thoughts anyone?

I forgot to mention I have 1.5mm wide margins. I am also in a cancer study at Ohio State.

Is the radiologist who is writing you also from Ohio State, or is he affiliated with the hospital where you were considering having your surgery initially?

I'd think a place like the James Cancer Center would have discussed your case at a tumor board, with many specialities represented (surgeon, radiologist, medical oncologist, etc.) and with the treatment plan you were offered being the consensus of their opinions.

-- Leslie

Francesca,

One more person here who had tongue surgery, neck dissection and no radiation. Similarly to Ginny, I too wonder if I did enough, but this of course lessens as time goes on. I did see a radiation oncologist, who did not advise radiation after the results of my surgery showed clear margins and clear nodes.

What it comes down to is: if I get a recurrence, then I probably did the wrong thing, if I don't then I definitely did the right thing.

Jerry

I feel the same as Jerry. I had 3 days of radiation and had to quit because of throat swelling. It was only insurance against future cancers because I was or am cancer free. I had clear margins and nothing in nodes.
Now, I have dental problems and am glad I did not have it. I think God was watching over me in that respect. No one can say for sure, but If you get it, you should have had it and if you don't you did the right thing. We must jsut have
peace with our decisions.
Good luck to you

Robin was staged at T1 N2 M0 great diagnosis we were told.He had 62 nodes removed and 60 of them were clear.The ones that weren't were round his tumour site and removed at surgery to his neck.His upper body scan was clear for mets and he had 35 radiation treatments.

Get the picture Fran? There is no right or wrong with this disease every decision you make will only seem right or wrong in hindsight,thats what makes it so bloody difficult.

In England we dont get these choices to make ,just a treatment plan given at the onset by a multidisciplinary team after lengthy conferences between themselves.I cant say which i think is best,but with the benefit of 20/20 hindsight i wish they had thrown the kitchen sink at Robin despite his early staging.

Liz

Me too Liz, love you.

It's too bad there isn't also some magic way to determine who will or will not have a recurrence. (and how to prevent them for sure!) To Jerry's comments - I agree, if I don't have a recurrence then I know I did the right thing about not having radiation. However, if I do have a recurrence, who knows if it would have happened anyway even WITH R/T? Unfortunately we've seen our own members who have had recurrences after R/T.

Luanee - I have posted before about the clinical trial I am involved in - here's a link to a good explanation of the trial and what it involves.
http://www.clinicaltrials.gov/ct/show/NCT00402779?order=2

Please let me know if you have other questions on it once you read the description - and, as you can see, it's no guarantee that I will not have a recurrence, but I believe the research involved will at least help move this forward.

Me2, I found some info about Tarceva; in Italy it is only being experimented for lung cancer, at the moment. The trial you mention sounds interesting, I'll try and find something similar here.

Hi Francesca,

I had a stage one tongue cancer two years ago, which was removed via surgery (along with lymph nodes). I was also told they had found a "speck" of malignant cells in one of my lymph nodes, although that particular slide of where those malignant cells were seen somehow got "lost" in the laboratory (long story). In any case, after talking to 8 doctors at two Comprehensive Cancer Centers (Inclusing MD Anderson, in Houston), I was told that radiation was not warranted in my case. Like I said, it has been two years and so far so good; in fact, I feel better than ever. So, if you're dealing with a stage one, I would definitely recommend NOT getting radiation.

Saluti,
Luigi

Thanks Luigi, this is encouraging. I'll see another doctor tomorrow and then decide.
Ciao.

That worked for you luigi but as i have pointed out Robin was staged at 1 in january and died in july so how do you justify a statemnt like "definately not".Like i said before in hindsight that is great advice but no two cases are the same.

Luigi,
Respectfully, I have to agree with Cookey on this one.
Always, Never, and Definately Not are terms that should not be used in medicine and in the treatment of H&N and OC cancer. What works for one patient does not guarntee success in another.
Patients need to get all the opinions and weigh their options and then choose the treatment they feel is best for them.
I am aware of cases of T1, N0 cancer that have been successfully treated with surgery only, others with radiation only others with the terrible threesome (slash, burn and poison) surgery, radiation and chemo. I am also aware of patients that have not been so lucky in all of the above categories.

Luigi congratulations on your success, don't let my post take anything away from your choices and success. Afterall you made the right choices for you.

Just my 2 cents.

Cheers,

Mike

Leslie B ; My surgeon is affilated with about 11 other Drs at James Cancer Center. They all work together in making the decisions about their patients. I have a lot of confidnece in them and I sure hope they are right. I like Me2 am in a cancer study to research the reoccurence of oral cancer. I see this team at the Cancer Center the same day I see my Dr. Thanks for the interest.

Leslie B, I posted a reply but have no idea where it ended up.LOL. My Surgeon is 1 of about 12 that work and consult on cases. I do have a lot of faith in them after I was saved from being made an almost vegetable at WVU in Morgantown , Wva. My cancer was a 2 so I think about it from time to time.Also I got scoped for Barretts esophagus I've had surgery for a few years ago on the 17th of this month. I saw the Dr for the report today. He told me my Barretts looks really great for some unknown reason and now it isn't a scope every 6 mo. but once a year.I'm thinking the guy upstairs is looking out for me as he has for years. I've been thru the "Mill" LOL aortic anneursym surgery and all. Thanks for the interest all.

Hi Francesca,

Like so many others here, I wish there was a magic formula that could insure your cancer would be treated with a just enough/not too much magic bullet. My son, age 22, had a similar cancer, scc of tongue, T2NOMO, with partial glossectomy and removal of lymph nodes (clear). His margins are "mostly" good, except for one spot that is 3mm, that the doctors wish was 5mm.

His surgeon is positive she got all the cancer out. She recommended against radiation. She feels his age and the fact that he is a non-smoker, non-drinker could mean that his body is somehow "sensitive" to carcinogens. She says there is an increased chance (30X) that he could develop a radiation-induced cancer in the future. Also that it might be a good idea to keep radiation as a reserve weapon in case it's needed. Plus, she's concerned with quality of life issues in such a young person.

As sure as she was about this, she made certain my son saw a radiation oncologist to present his side.

He believes my son should have radiation. He says: out of 100 people who had my son's tumor and my son's surgery, 15 of them will have recurrence. But, to him, that's not the scary part. The scary part is that treating a recurrence is more difficult than treating the original disease. Only half of the 15 will survive. With radiation, only 5 of the original 100 will have recurrence.

It is a huge decision, one that even some of the best doctors in the world can't agree on.

My son opted for no radiation, but close follow up. That means driving 3 hours each way once a month to visit his surgeon. It means CT scans every 3 months. It means having a lot of faith in your doctors -- that they can spot or feel anything unusual -- in a tongue that already looks/feels abnormal. It means worrying. A lot.

Best of luck. I hope you make the right choice for you.

-darcy (Matt's mom)

Darcy, thank you very much, I wish you and Matt all the best!
I saw a third doctor just today and he confirmed that in my case radiation is not a routine option. Still, just to be sure that everything is ok at the moment, he decided for me to have a couple of post-surgery exams next week. I'm a little bit scared but I'm ok with this. Also, he confirmed the absolute need for a very close follow-up, just like you mentioned. He said: more treatments, less close follow-up - less treatments, closer follow-up. I know what that means, I know it's gonna be hard but I have no choice.

Leslie B.. No the radiologist is not from James Cancer center. He is a local but I do respect his opinion. I'l wait until I see the Oncologist at Ohio State the 15th of Oct. I have a lot of faith in this guy and he is on a team of about 12. Thanks for taking an interest. Jim

Yes, the "definitely not" part was perhaps too definitive. I do apologize. Francesca, I wish you all the best.

Luigi

Liz, was Rob staged at a stage 1 with two lymphnodes involved? That suprises me?? The new tumor I have would barely be a stage 2 but for the one lymphnode involved, which my doc said bumps it to a stage 3. I know some people will have a T1 but then have lymphnodes, which makes them actually a stage IV at times. I am just making sure I understand his staging.

Take care,
Minnie

Maybe its me that didnt understand Minnie .I got his T1N2cMO from his notes but i think i worked out his staging from this site but i also read it in a letter to our gp.His secondary tumour in the neck was 6CM but his primary in his toungue was only a few MM .I know they said they were confident of a full recovery,and that he had a 98% chance of no further problems,if he followed their regime.
I am happy to hear your thoughts about the staging

love and hugs liz

Thanks Liz, I don't know what to make of it, maybe they do it differently "over there". Would make sense wouldn't it? How are you doing? I think of you often and wonder if you're lonely. Email me personally if you wish.
Love,
Minnie