Hello everyone, My name is Andy and I too am newly diagnosed with SCC. I went to the Dr with 1 enlarged lymph node, and instead of doing a biopsy, they removed it. Well, that came back positive with SCC and now later this week, they are going back in to do a tongue base and back of throat biopsy to try to find the primary. At the same time they are doing the biopsy, they are going to insert a peg tube before I start the chemo and radiation therapy they have for me. I am actually hoping that they can find a primary source somewhere. I have had both an MRI and Pet/CT scan, that the Dr said showed a small blip in the tongue base. Just turned 38 3 days ago, and have never smoked. Even the Dr's found that weird.

Andy, it is good that you have found this place. There are people here who can answer from personal experience just about any question you will have. Do not overlook the main OCF site where there is truly a wealth of information. Some of the days ahead of you may be rough, but you will get through them just as we have. I wish you all good luck.

Hello Andy
Welcome to the forum.
I know this is a scarey time for you, we have been where you are. We can help with all the little things that the Doc`s just forget to tell you .
eg. bulk up now while you can eat, you will lose weight and you need any reserves you might have.
Make sure they use amifostine, it helps save the function in your salivary glands, a BIG quality of life issue.
As Joanna advised, spend time researching the site, the information you will find is invaluable.
We found our way here part way through the treatment and I really wish we had known then what we know now!
Post any questions you have Andy, someone here will have the answer you need.
I know there are a few postings of questions to ask your Doctor, very helpful.
Most important , take someone with you to all appointments , there is no way you can take everything in. I taped most of our Drs Appointments and was amazed when I played them back. I had forgotten so much that was said . Maybe that was just me!!
Let us know how you are doing, email if we can be of any help. As you can see we live in Atlanta, Lawrenceville actually.
Take Care
Marica

Andy,

Welcome to the neighborhood! I am sorry you had to find such a great place but also glad you have found one of the best sources of information as you are beginning this journey. The road will be bumpy but well traveled. Arm yourself with as much information as you can so you can do the best possible job guiding your way.

Ed

Andy, to the above helpful advice, I would add the following: Get a calendar that you can carry with you, and enter on each day, who you saw, where you were,when you started a medication etc. This is especially helpful if you have to deal with an ins. co., plus down the road a bit, you may need to refer back to a date and you may not remember it. There will be lots of support here for you when you need it. Amy

Thanks for all the support and information. I have spent hours over the pasy few days looking at all the info. Many thanks for all the help.

Andy

Andy,

Make sure you ASK about amifostine, it may help save salivary gland function. Salivary gland function COULD be a post radiation quality of life issue. Keep in mind it is not always well tolerated. I believe 50% is the number that has been floated around by Brian.

Glenn

Hello Elocia,

Welcome to The Oral Cancer Foundation!!! Glad you found us but sorry that you had to. I can't add much to what already has been posted. I can tell you the road ahead may be bumpy at times but you can beat this like many of us have. Remember to measure your progress in weeks not days.
Also ask your doctor what type of radiation and chemo drugs they are suggesting and why. The more info you have the better decisions you will make.

All My Best, Danny Boy

Hi Andy,
Welcome to the board, but sorry you need us. I had an unknown primary with mets to one lymph node in the neck. My RO said sometimes the primary shows up during radiation but mine never did. They didn't do a Pet scam, but not certain pet scans existed back in 1997. CT scans never found anything. Just wanted you to know that while rare, unknown primaries do exist. Keep us posted on what they find.

Take care,
Eileen

andy, hang in there. you will be amazes at how strong you are! there is treatment out there,and while some of it is awful, always remember that you will come out the other side of this-stronger, happier and more aware. i'll keep you in my thoughts. fivepets

Thanks for all the positive info and suggestions. I have been reading alot of info. I do have a question for the radiologist when I meet with them in 1 week. If after the biopsies if a primary cannot be found, do you think they will use a more targeted IMRT or conventional to treat the whole area from my neck bone up?

i was 40 whan diagnosed in april. i had one lymphnode under my jaw and could not find primary until a petscan found large uptake in oropharynx.i had 30 imrt treatments to primary region and to the node. node did not desolve with rad. so i had a neck dissection one month ago.i also had a tonsilectomy before radiation as all my doctors thought this was the primary.i feel like i came through all this pretty well except for 15lbs. lighter(good thing)and a stiffneck for now.this is a great site for knowledge and support.i pray all will go well for you and your family.ihave a great wife and three small children that have really helped. you will find in the next months how many good people you know that really care about you.to answer your question they will not use imrt if they don't find the primary.i hope they can find it the imrt is very good therapy. good luck and stay positive. mo

My husband Barry was disgnosed in June with Stage IV tonsil and base of tongue SCC (tonsil was the primary) so hopefully they will find your primary when you have your biopsy. He was also a non-smoker, they said the cancer could be caused by exposure to another carcinogen, a genetic tendency, or virally-induced -- turned out to be the latter.

He had 33 radiation treatments with tomo-therapy (jazzed-up IMRT with even closer focus) plus 7 chemo treatments (carboplatin as a radiosensitizer) at Johns Hopkins and is now 3 weeks' out from treatment and doing pretty well, though we will not know for about another 5 weeks how successful the treatment was, when they will evaluate and do scans. No surgery other than a tonsillectomy (negative margins except BOT).

You will see a lot a variation on the forum as to treatment protocols, even with similar diagnoses. At Hopkins IMRT is used even with unknown primaries, however the treatment plan is different in that more areas are radiated. Everyone gets concurrent chemo, usually cisplatin or carboplatin, the latter sometimes with Taxol as adjunct.

Read on the OCF web site about various treatments and the potential side-effects and ask for clear answers as to how they will help ameliorate them (most cannot be avoided). My husband used amiphostine all the way through but many cannot; the average at Hopkins is apparently about 1/2 to 2/3 of the way through treatment before problems like rashes, lingering nausea etc. build up -- however even this reduced use is supposed to help with salivary function. His is fine, very little apparent effect. However throat is sore and still healing, so has eat soft things. He lost weight (everyone seems to) but mostly at end when he had two successive infections; he put on some weight before starting treatment, you might try as well. Barry never used his feeding tube, it actually failed (fell out) right near the end -- but it might have been helpful later when he had infections so it is a good idea to have one inserted.

Good luck, it is no walk in the park but you can do it!

Gail