Hello, my name is Sarah and I am a 32 female who was diagnosed with tongue cancer (Well differentiated, TIN1MX one month ago today (May 1, 2006). I have never smoked and I have only an occasional glass of wine with dinner. Additionally, I am a brand new mom (daughter Julia was born on March 17, 2006).

Since my diagnosis, I have had surgery on my tongue (3 weeks ago) and a partial neck disection where they removed all the nodes in levels 1-3. They removed the tumor on my tongue with 4mm of clear margins. Out of the 34 nodes removed in my neck, 1 node (4mm in size) was positive, so the tumor board has recommended that I go through radiation.

I meet with the radiation doctor tomorrow to disscuss the treatments. I live in the Washington DC area, so there are several places where I can get the latest and greatest in radiation thankfully.

My only question is about the neck. My surgeon mentioned at our last appointment that they would probably only radiate one side of my neck, but I have seen on many of these boards where both sides were recommended. Does anyone know why one side might be recommended over two sides in my case. It might not matter, since the radiation Dr. probably has a better idea of where to go from here, but I was just curious.

Thanks for any information,
Sarah

Hi Sarah,

I want to welcome you to OCF and wish you good luck with your treatment. You will find a wealth of information here and I suggest that you use the search engine at the top of this page and the one on the home page. You might hold the record for having treatment so close to the diagnosis being made. One week, that's amazing. Mine was 3 weeks and I thought that was quick.

Since I didn't have radiation, I can't answer your questions, but be assured you will soon find many here that will share their experiences and knowledge with you. Just bear in mind that it is impossible to find one set protocol for cancer treatments and seeking multiple opinions will give you multiple answers. This can be very confusing and it will come down to going with the treatment plan that you are most comfortable with. Once you've made your decision, don't second guess yourself, as this can be self destructive.

Although tobacco use and alcohol consumption are the major contributing factors for most oral cancers, they are by no means the only causes. HPV (human papilloma virus) has been linked to oral cancer and many times no causative factors can be found. Such is my case.

Congratulations on becoming a mom. Julia is a beautiful name and one that she shares with my 3rd granddaughter, who will be 2 this month.

Jerry

Sarah,

I'm glad you found this site, but I'm sorry you needed to find it -- especially as a new mom at 32. You ARE fortunate to be in an area where there should be extensive cancer treatment resources. Please be sure that your team is made up of doctors who treat many oral cancer cases.

I know there has been discussion elsewhere on this forum within the past few months about the rationale for radiating one side or both -- you may be able to find that using the Search function, or you may hear specifically from people who have had to address that recently. Don't hesitate to ask plenty of questions of your doctors as you prepare for radiation, and if you can take a family member or friend to your appointments (to help take notes and be an extra set of ears), it's a good idea.

Feel free also to post your questions and concerns here -- you'll find lots of support and answers.

Cathy

Sarah,
Most of the dicussion about radiating "both sides" have been mainly tonsil cancer patients. They sometimes irradiate the neck to inlude the nodes as well. A lot has to do with the type of radiation also, whether it is IMRT or XRT.

"Well differeniated" is good as it means that the cancer was confined to one tissue type. Conversely, "
poorly differentiated" means that the tumor has gotten into soft tissue, muscle and even bone.

Congatulations on your new motherhood.

Sarah, my tumor was in the area of a wisdom tooth, and the radiation was to both sides, probably because it was a stage 4, and I was also told that this cancer tends to jump sides. Whatever, it worked and I am here four years later. I wish you strength and the best doctors to get you through this as easily as possible.

Joanna

Sarah,

I am 29 and also non-smoker /non-drinker. I was diagnosed in January and had both sides of my neck dissected and a partial glossectomy. My tumor was a borderline stage I/II. They couldn't accurately measure it due to the way it sectioned in pathology - but regardless, all my nodes were removed and they were negative. Unlike you, I didn't have radiation - but I am sure you will be fine afterwards. My doctor says that he can't believe how fast I've healed as young people just tend to heal quicker in general. I'm back to 100% speech (well that is what everyone else says - I think more like 97% as I have one or two letters that I can still tell a difference) and can eat almost anything (crackers are hard for me to get down b/c my saliva is less now - since they removed 2 salivary glands.) I did consult with a top Rad Onc in this field in Ohio, and he stated they would radiate both sides of my neck if we had done radiation. That was b/c the tongue is considered midline -and sometimes will spread to one or both of the sides of the neck - so I'd guess they will either go full power on both or give you a weaker dose of radiation on the opposite side of the neck. They didn't do radiation for me b/c of my tumor characteristics. Unfortunately, mine was multi-centric - meaning it had several centers of foci and that was one problem in getting an accurate size. But, that also means it might "pop up" again in my mouth close to or far away from the original site and he wanted to be able to use radiation if that should occur (as if we did it now "just in case" we might radiate the wrong area and not be able to use it again should it occur on the other side). And, one of my margins was under 3mm (as close as 1mm - as the tissue broke during sectioning and they also didnt' get a good measurement here)- so a recurrence for me is highly likely - unfortunately. Sounds like you may never experience a recurrence if you go ahead with your treatment. I hope that is the case. I wish you all the luck and if you ever want to talk to someone very close to your situation in age and risk factors and prognosis - please feel free to send me a message.

Since my diagnosis, I am back to normal - almost. I still think about it everyday and have good and bad days of course - but I've even managed to get a start a new job during all of this - which people advised against - but I can share with you my feelings if you are thinking about that. Good luck!!

Amy

Hi Aimee,

I feel I'm not doing my "job" on here if I don't ask why, if your doctor feels you will have a recurrence, you are not doing radiation now? Why wait for it to come back? This cancer is known to come back with a vengence when it is left to it's own devices...........why not get rid of it now? How does your doctor explain his theory that you may have "new" tumors come up? Maybe I'm misunderstanding you, if I am, I apologize. If I'm understanding properly, you and your doctor are expecting a recurrence and are saving the radiation for that? Help me out here!
Minnie

There are many reasons for my recommendation not to have radiation of which, I am not going to go into detail on here. let's just say - that yes - I've seen a top doctor for a second opinion (and Yes - at a large CCC) - a rad onc who recommended AGAINST radiation at this time (and he ONLY treats Head and Neck and Lung Cancer) so, I think his recommendation is one to trust. My two head and neck surgeons both say no and so does everyone else they consulted (including rad oncologists) to make the initial decision. If they had recommended to have the treatment - you can be sure I'd have been to every single treatment. Since they are the ones who went to medical school and had the specialized cancer care education and experience - not myself, I am trusting the decisions and recommendations of which they make.

Yes - I know that it can recur- but that is the case whether or not you have radiation / chemo. There is always a chance of that. I have accepted that risk and am very aware of all the issues.

To answer your other question: we are not "expecting" a recurrence - however, just very aware that one might happen, as could anyone's. So, I have very regular checkups etc...

And - not really "saving" radiation - more like just avoiding an unneccessary treatment at this time - for my particular case. Every case is different - every case requires different treatment - and unfortunately, no one can predict what will or won't happen in life.

As far as we know - the surgeons were able to get all of mine. Although the margins were close - they were not positive. All lymph nodes were negative and I've had a clean PET/CT scan since the surgery. There is no indication that any cancer remains. I am hoping that will remain the same through the rest of my (hopefully long) life.

This answer was longer than I wanted, but I hope I answered the confusion my previous post may have caused.

Amy,
Thanks for explaining all of that. I don't want to make you feel unsure of your treatment, you need to do what you trust in and what your doctors suggest. I also hope that you have MANY more years in your LONG life!! Odds are on your side for it, so smile.

Sarah -

Not sure I can add more than others on your question of why radiate only one side of your neck but did want to introduce myself as our situations are somewhat similar. I am 32 and have an 11 month old and a 2.5 year old an am currently undergoing radiation treatment. Have had 10 treatments so far out of a total of 30. I had a tumor on my tongue 4.5 years ago and only surgery and had a recurrence a few months ago. Because I had no nodal involvement ey are only radiating my tongue and not my neck and thaconclusion came after alot of challenging. I learned that thye really ty to avoid radiating any more tha they need to. Feel free to send me a message given the similarities of our current situation.

Thank you everyone for your messages and for sharing your experiences. I met with the radiation oncologist on Friday and he was comfortable with radiating both sides (he said the Tumor Board was on the fence about that one as well). Additionally, I will be meeting with the medical oncologist on Friday as I believe that I am going to opt for both radiation and chemo. Like many others before me, I want to zap this clean the first time so I can enjoy a nice long life with my family:)

I'm glad you're getting both sides radiated. I had stage II cancer (no nodes, clean margins but some aggressive features to the tumor) and had radiation and there was debate about radiating one vs. both sides of my neck-- I got a second opinion at Dana Farber (I was being treated by Roswell Park, also a CCC) and they said to radiate both sides. originally Roswell Park said only one side but then changed their mind after I said I realy wanted to be safe and have both sides radiated.

The reason for both sides were what's already been said--the tongue is a midline structure and the cancer can spread to the opposite side--if you're going to go through radaition, you don't want to miss the spot where it has spread!

Nelie

Is your oncologist also talking about Erbitux? Our oncologist said that with my husbands age that is was a no-brainer to use the Erbitux along with the Carboplat. Erik is 32 and they wanted to do above and beyond treatment, so that they could get rid of it, and lower any chance of re-occurance.
I was just wondering?
Jennie