Hi,

Apologies in advance for the length of this post. It is such a relief to finally find a site such as this, with people who can actually identify first hand with what I am going through. I can't believe that I'm actually sitting here with tears streaming down my face as I write! In many ways though, I feel almost like an imposter here, as my problems seem dwarfed by those of so many of you here.

In May, I went to an ENT specialist regarding a lump under my chin. I had had it for about a year, treated initially with antibiotics, to no avail. The reason I went back was that I thought it was beginning to grow.

He thought it might have been a thyroglossal duct cyst. FNA came back suspecting a neoplasm, which surprised him. He did a Sistrunk procedure in June, removing the mass along with adjacent lymph glands.

The mass (3.5 cm)was diagnosed as an undifferentiated carcinoma. The capsule apparently ruptured during removal at it's point of adherence. The adjacent lymph nodes were fine.

I did some research on the net and found only one case in recorded literature of an undifferentiated carcinoma of the thyroglossal duct cyst. Prognosis for this type of carcinoma was not good (6 months). Needless to say I was pretty devastated.

Spoke further with my doctor and he was pretty good at calming me down. Said he thought that the most likely scenario was a metastatic carcinoma from occult primary.

He suggested a PET scan to try to find the primary (the MRI came back negative). Spoke also with my GP who suggested defering the PET scan and seeking a second opinion in Toronto (I live in Barbados but most of my family live in Canada).

In August I saw a great cancer specialist in Toronto who was pretty sure that the mass was a lymph node carcinoma from an unknown primary. He did a very thorough examination of the oral cavity and found nothing. His pathology department reviewed the slides etc and diagnosed it to be a left submandibular lymph node with a poorly differentiated non-keratinising squamous cell carcinoma.

The specialist in Toronto (as well as my ENT in Barbados) has suggested radiation. I have had a CT scan (though not a PET) and am scheduled for a panendoscopy in a week. After that I guess the radiation therapy will start.

Barbados has facilities to do the radiation, but I am sure they would not be as up to date as Toronto. I guess I need some advice on where I should choose to have it done, as some of my friends (with no direct first hand knowlege of exactly what is entailed) have suggested I have it done in Toronto if I am able.

With all the side effects from the radiation, could it really make a difference where I have it done?

Thanks in advance for any insights you can offer.

hi Tower,

i live on Maryland's Eastrn Shore and faced the choice of radiation here or at leading hospital that is 120 miles from my home. That hospital is well known for head and neck cancer treatment. I was to recieve rad&chemo. I think chemo can be done anywhere. So my question to the rad doc was 'Why should i be treated here away from home.'

his response was that basically anyone with the proper training can do general radiation. however many docs refered difficult cases to him.
head and neck cancers are a low percentage of cancers and most places just don't treat very many folks. on the other hand, he has over 20 yrs treating only head and neck folks.

my decision was easy.... i had one shot at getting this done right.... i went with the specialist. i'm still here after 3 yrs ... with a case that could very easily have killed me.

make the decision that is right for you.

cu,
larryb

Thanks larryb

When you put it that way, it makes total sense to go with the best.

I am seeing my ENT in a couple of days and we will have a serious talk. It is now 9 weeks since my operation and I hope this delay in starting the rad treatment will not have negative consequences.

Best,
tower

Hello, Tower.
I can identify with your feelings about 'being an imposter' - but let me tell you, everyone here is wonderful and they will do all they can to help you through this.
My husband had the option of working with local doctors - all very well established and respected - but, as Larry says, it is a good idea to go with those that treat head & neck cancers specifically. It means a 1 1/2 hour drive each way for us, but we think it will be worth the inconvenience in the long run. It seems pretty obvious we only have one chance of doing this 'right.'
I think you'll be glad you found this site!
Nicki

I'm already more glad than I can express Nicki, thank you.

Best,
tower

I would ignore the advice of the GP who is not very qualified to guide you in the decision making process. Many of us had had bad experiences, missed or delayed diagnosis from trusting a gp. Some of them couldn't Dx a throat cancer if it jumped out and smacked 'em. My tumor was so large I could see it myself and my gp couldn't figure out what it was.

You may only get one shot at this - take your best shot. Find the most qualified oncologist, radiation oncologist and head & neck surgeon you can, preferably in a multidisciplanary setting where your treatment is coordinated. Maybe you can get state of the art treatment in Barbados but you need to research this very carefully and quickly.

I drove 60 miles each day for radiation from a top comprehensive cancer center. Many have traveled even farther.

Hi Tower,
I live in rural Vermont and had the option of local treatment in Burlington, VT or travelling to Boston. I chose Boston for the same reasons that others have mentioned. Since oral cancer is less common than some other types, you want to be treated by a facility which sees and radiates a lot of cases.
In particular, you might want to ask what type of radiation you would be receiving in both places. If Toronto offers IMRT (intensity modulated radiation therapy) and your local treatment center does not, the decision might be easier than it now appears.
Regardless, best of luck with your treatments. Best, Sheldon

Hello Tower,

Take Gary's advice and go to the best facility you can go to. I stayed at a local cancer center but I found out later they don't see many Head & Neck cancers. I have a reoccurance after 9 months and am now taking pallative chemo. It all happened so fast and you have to make decisions that fit you. I trusted the local ENT and Rad guy, It was a HUGE mistake on my part.


Best of luck with your decision. Hoping and praying all goes well for you.

Danny Boy

Hello Tower

Welcome to the board. I agree with others, go to the very best and most up-to-date facility you can find. For the future it is important to retain as much of the salivary system as possible. Family help is beneficial during the six weeks or so of treatment.

I'm sure you will find this OCF family supportive and constructive during the weeks ahead. I send best wishes for your treatment, whatever your decision, and will follow your progress with interest.

From Helen, with love

Sorry you had to look for us, but so glad you found us! None of us are doctors as far as I know, but collectively, our experiences will help you ask more questions & more informed questions that will help you make better decisions. Get with the biggest cancer center you can! You want lots of experience on your side, have that primary cancer found & dealt with. Don't wait & see. Get second opinions & take action! My best to you! Erik