Hey Gang...
I'm sure this intro will be the same as the thousands before me. But greetings from the newly diagnosed world - My name is Lisa!!

Recently Diagnosed with State 4 Pyriform Sinus / Hypopharynx (throat cancer).
All my initial tests have been completed and now I am off to see the chemo/radiation specialist to discuss treatment
One night while taking a shower one night, I noticed a lump on the left side of my neck. Called my regular physician and he gave me some antibiotics and told me to make an appointment with an ENT.
Next was a needle biopsy which came back inconclusive, then a CT scan with Contrast...which showed up "concerning" which prompted an internal biopsy..which concluded as Squamous caused by HPV.
However, the PET scan showed that it has not spread. My doctor has no idea why/how I got this as I've never been a drinker, smoker, nor have any health issues outside of being Type 2 diabetic.
As far as sickness - I don't get sick...colds/coughs, never had the flu shot...so this is a real sudden smack in the face.
My ENT is sending me to an oncologist and said that a feeding tube is in my future with Chemo once a week and Radiation 5 days a week with a mask.
I know I need to wait...but my head is spinning and everything I read to try to educated myself on only seems to be a toss up in the air as there are so many variables.
I have a lot of work ahead of me and thought joining a support group might be helpful on this road, so here I am. :-)

Welcome to OCF, Lisa! Im very sorry you have a need for our group! Im very glad you have found our site. We're the very best place you can go for info and support for anything relating to oral cancer (OC). Learning about your illness will help to make you a strong advocate for yourself.

Best thing you can do to help yourself at this point is to eat. Have all your favorites, desserts too Dont worry about calories or gaining a few pounds. During your upcoming treatments you will probably be like most of us and lose weight. If you're on the average or slim side having a few extra pounds going into this is a smart thing to do. Once you get going with treatments, you will need to focus on your intake as much as you can. The better you do, the easier things will be for you.

If you can, go for a second opinion at a comprehensive cancer center (CCC). They use a team based approach so all the specialists are on the same page. The doctors get together and discuss each individual case (tumor board meeting) where patients can attend and ask questions. This is how the US's top treatment facilities operate and patients who are treated at those places do better than those treated at small facilities.

As you share your bad news with friends, loved ones and co-workers you will have many offers to help you. People are genuinely good and you definitely will need help to get thru everything so its a good idea to take down their contact info and begin a list of helpers. Hopefully you will have someone who can be your caregiver. Anyone who has offered to help, take them up on it. Even if its just to drive you to your treatment one day a week, its a help. There are a million small things that can be done to make this as easy as it can get. Dont be afraid to speak up and ask for help! Anyone who asks what they can do, they really want to help so if you need a hand so give them a job. Take out the trash, do a load of laundry, walk the dog, mow the grass, pick up children or even playdates so you can rest, picking up groceries or cooking your family a meal are all great small things that add up to making your life easier in this difficult time.

Prior to starting any treatments make sure you see the dentist for a thorough check up. If going thru rads you will need to get flouride trays made to protect your teeth. You should also have a full blood panel done including thyroid and for men testosterone levels. Its very important you get this done before treatments so you and your doc know what your numbers should be. During and after treatments your numbers will be all over the place. Many rad patients for OC end up on thyroid meds due to the radiation negatively affecting their thyroid.

Hang in there and dont hesitate to ask questions. We'll do our best to answer and help you get thru whatever path this takes you.


PS.... Heres a few helpful links. If you havent already checked out the main OCF site, heres some links to read thru (or your mom can)...

OCF main site --- Diagnosis

OCF main site --- Treatment

NCI list of CCCs

US News Best Hospitals List

A lot of us get the 'Where the heck did that come from?' version of cancer ... it is what it is. You're in good company here, and already got GREAT advice from Christine. Listen to her! She means it! (I probably should've done more with those fluoride trays but we never could get 'em to work right ... but they would've helped.) The feeding tube won't be all that bad, though it limits your physical activity (so you don't jar it loose). You may not need to start with it, but by the end it's nice to have it already there. And like she said, eat up, eat up, eat up! And line up some drivers for those treatments ... after awhile you will NOT want to be driving yourself. Let someone take care of you for a bit.

This is the BEST support I found throughout the whole ordeal.

((hugs)) Everyone here is rooting for you!

My husband started with lumps in the neck too. It seems to be a fairly common occurrence. He was a big and strong man, so the diagnosis was hard for him.

You may need a feeding tube during treatment but it may not be long term depending on your ability to swallow post radiation. My husband had one for one and a half years post radiation because the scarring in his throat was severe. He managed to do all kind of things — including working for hours in his pottery studio (really just our garage) on a daily basis.

Maybe you can find out if you could have a visiting nurse at home. We had that I found her weekly visits, though short, very reassuring.

Please post if you have questions. I have you on my mind and I wish you a smooth journey through your treatment.