I am Carol. My significant other, Tim, has been diagnosed with SCC at the BOT with mets.
FNA last year showed inflammatory cells so a round of antibiotics was prescribed. He had a tooth that had broken then healed so the ENT felt it might be an infection. So.. had the tooth extracted (he was in no hurry to get this done since it was not bothering him and the ENT didn't even mention cancer). Fast forward 1 year- back at the ENT and another round of antibiotics. 3 weeks later an FNA which then showed atypical cells suspicious for non small cell carcinoma. Next(2 weeks later) a needle core biopsy of largest lymph node. Results- non small cell carcinoma. one week later- PET with glucose. Showed very small BOT tumor with reactive lymphoid tissue. 2 large metastatic lymph nodes and several smaller right level 2 lymph nodes that are suspicious but obscured by the intensity of the first 2. The ENT did a scope and looked at the BOT and said "it appears as just a slightly different color and size as the rest, and "if he didn't know what he was looking for it would appear basically normal to him".
He is referred to radiology oncologist now. We chose a different one than "recommended" that is more familiar to me and highly recommended thru my medical contacts. This appointment is tomorrow.
We had been researching non small cell and thought it would most likely be lung cancer so all of this took us by surprise!! I guess at this point we really need a bit of hope that the treatment will be successful!
We are very anxious, of course, about the next phase. I have been trying to familiarize myself with all of this. I will be his caretaker during and after treatment.
So ..... I guess "Help" is what I am asking for!!

Non small cell at base of tongue???? interesting normally its squamous cell - I would ask them to double check that. I've read the small cell lung cancer can move up into the base of tongue area but that's very rare, are they saying this is a primary or lung mets? Assuming its non small cell that would imply non small cell lung cancer as well.
Regardless I would look for treatment at a CCC - why? Because they do cancer all day every day, and your husbands cancer if it is not squamous cell carcinoma and is in fact non small cell lung mets - is unusual in its location this would be another reason to be seen at a CCC (if possible) - and it should probably be a lung cancer specialist - not ENT because I believe lung cancers are first off - treated with chemo primarily (my mom died of lung cancer - her treatment was chemo, and then a few rad sessions to the head to hopefully zap any cells at may have migrated) and secondly treating it as a base of tongue would do nothing to solve the actual problem (lung cancer mets)

It is possible its squamous cell carcinoma - in which case you are in the right place - welcome - sorry you have to be here, hugs

I think I miss typed. The biopsy showed squamous cell. (the fna was suspicious for non small cell)

Hi Carol,
I'll just reply to let you know that I read your post, and that I also have a recently-diagnosed family member. My father just told me today that he has "cancer" - he didn't say any more than that, other than that he starts chemo/radio tomorrow. It sounds like it might be tongue cancer, based on his description.
Most of our communication is by email because we live on opposite sides of the world. But, in his email today, he asked me not to telephone him because speaking is painful. I;m guessing that pain that is strong enough to interfere with his ability to speak might mean the lump is quite big.
I'll look out for your posts.
I wish you well
Deborah

Thank you Deborah! I had read your post about your father also! I know with Tim that he isn't understanding all of the medical information being given to him, so he isn't conveying information to his family (only two daughters) very effectively. I will follow your posts, and I wish for you strength and some peace as you progress through this with your father.

[quote]But, in his email today, he asked me not to telephone him because speaking is painful. [/quote]
Hi Debo, Is it correct to assume that he is alone there and there are no relatives or friends who are involved with his cancer and treatments?

Hopefully, there is someone who is assisting or at least aware of what is going on. You really benefit having another contact than him as he appears to be the personality type to not wanting to "bother" family with his illness.

If he is the sole contact then press your Dad to get you onto the records as being able to receive and contact his care providers. That way, you can get the accurate and timely status from them directly if your Dad is not directly and accurately communicating his status to you.

Best to you, Don

Hi debo - I responded to your other post. He is going to need help if he's on his own. Hugs.

Carol -
you wrote - "I guess at this point we really need a bit of hope that the treatment will be successful!"

The fact that the tumor is very small is good from a prognostic and a treatment stand point.

If you are like me, you are probably wild to move forward after all the lost time. Getting a second opinion (especially if the treatment will not be at an official CCC) is probably worth it. It is important to get it right!

Best wishes - we'll do our best to help!

Maria

Thank you for responding Maria! The appointment today is in central Florida. I hear and read very good things about them, and I have had one family member treated there (prostate cancer).
We are anxious to hear what they have to say as far as the plan for treatment then perhaps go to Moffitt or even Shands for a 2nd opinion.
Tim is the love of my life, and I "found" him again 3 years ago at our 35th high school reunion. I will be by his side through whatever it takes!
This support group, in 2 days, has given me so much information, and hope. Thank you all for being here for us!!!
Carol

Carol,

I sent you a PM reply.

Welcome to OCF Carol!

I have sent you a private message (PM) as well. Please take a few minutes to review the messages. Take a look towards the top of the page in the center next to where it says My Stuff and click on the flashing envelope.

From what you wrote, I would highly recommend taking him to a large CCC. Luckily you have a major CCC right in your state, Moffitt is one of the best. Where you go really does matter! Especially if the case is complicated. You will want top doctors who have the most experience treating hundreds of similar BOT cancers. I see others have mentioned this to you so I will provide the CCC list in case you want to look further.

List of Cancer Centers

Best wishes!

Today is the final radiation treatment, and the 3rd chemo (cisplatin) was yesterday!! Tim has made it this far with REMARKABLE success.
His neck has just two small irritations on it. (Lotion or Aquaphor on his neck everyday after the 2nd radiation, then a shower to wash all of it off in the morning before the radiation - he used Olay body wash with shea butter. I mention this because the radiologist said that if he put him in a room with 10 others undergoing this same treatment-they would all hate him because his neck and skin are looking so good)
He is still able to eat (although everything tastes like cardboard). He forces himself to eat a small bit of something everyday. Crackers, or bread and butter or jelly, soup. Just to keep his throat used to swallowing. He is drinking at least 3 Ensure/Boost a day (he has found that mixing them with some milk or water makes them thinner and easier to swallow. Magic Mouthwash is awesome. He has lost only 11 lbs.
Zofran for the nausea seems to be the wonder drug for the cisplatin. I will let you know how this does over the next few days/weeks post the final cisplatin.
Davidcpa has told me told what we may expect over the next several weeks,so we are trying to stay prepared.
Anyway- I just felt that I should post some good news and possibly be of some encouragement to others. I cannot thank all of you on this site enough!! Reading your posts has gotten me through some bad days, and helped me hang onto the emotional rollercoaster of cancer and treatment!!

So awesome... hopefully he stays the same and sails through recovery. ;o) you are doing an awesome job as caregiver.

I'm just going to say Thanks for being an awesome caregiver; then I'll repeat what Cheryld said!