My 18 year old sister was just diagnosed with squamous cell carcinoma on the base of the right side of her tongue 10/08/13. She's had this "sore" in her mouth that wouldn't heal for close to 5 months before having it seen about. All we have right now is the diagnosis. We don't know the stage. I was hoping to hear from someone who has survived this that can offer information. As you already know, a cancer diagnosis is so so scary and we could use a little encouragement. Thanks so much.

Hi Rebecca, sorry for your news. If it is visible it's usually on the oral tongue (you can't see the base of your tongue which is in your throat).

I could feel a problem about 4-5 months before I was diagnosed as well. You can see my staging below. I had my surgery 2 months after seeing an ENT. I am a year out, and doing well. This is something that she can recover from!

Once you have more information (PET scan results, CT, biopsy) and a treatment plan, we can provide more detailed information.

Good luck.

Welcome Rebecca, most everyone here is a survivor or caregiver to someone with squamous cell carcinoma, which can effect the mucous membrane in various areas of the head and neck, other anatomical sites, and your susters sound like the base of tongue or oral tongue, both which can be effected by SCC, but are in different areas, one in in the oral cavity, and other oropharynx, and sometimes treated differently. When you get further info, update your profile signature with testing, bio, members can better assist you . Was your sister's biopsy tested for HPV?

Good luck.

The doctor who did the biopsy asked if she had been tested for HPV, but he didn't identify that as the cause. As far as I know she doesn't have HPV, but I'm just now learning that she had never been required to have Pap Smear so I doubt she's been tested.

Thanks for the clarification. I wrongly described it. Her's is on the oral tongue.

Has your speech or ability to taste and swallow been affected by the surgery?

Rebecca, welcome to OCF! So sorry to hear of your sisters OC diagnosis! She is so young to be going thru this, but her age is also an asset and will make this easier.

You have found the best place to get info and learn about your disease and how its treated. Educate yourself so you know what to expect and how to advocate for yourself. There is so much to do to prepare for treatments.

Check out the main OCF pages too. There you will find all the info you are asking about. There are sections for treatment, radiation, etc. Of course we are here to help you along.

Right now you need to focus on your sister's intake. She should be eating everything she likes and not worry about gaining weight as she will lose some during treatments. She should get a hearing test, full bloodwork including thyroid. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays).

Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is the daily intake. Every single day your sister needs a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If she skimps one day and thinks its ok she can make it up the next, she is wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push her to take in extra water to flush the poison from the kidneys.

When treatments begin, have her pay very close attention to her hearing. If she notices even the slightest change inform the doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent.

Those are just a few things to start with. We will be here to help you get thru everything. Lean on us and we will support you both.

Good luck!

Rebecca,

Welcome. Encourage your sister to join the forums. We are all survivors or caregivers. I joined right after my diagnosis in late August of this year and it has been a GREAT place to get answers....and support.

Hi Rebecca,

When I found out my tonsil swelling was cancer I was lost, dismayed, scared, and about 15 other adjectives, none of them good. It was all fear of the unknown as none of us know anything about cancer until it happens to us or a dear one. And right then, in the beginning that lack of knowledge can be devastating.

OCF is what brought me out of the fog and gave me some hope. It's like having a big brother or sister who takes you by the hand and says ... do this, now do this, and now this. Everything will be alright.

You made a great choice joining OCF, now get your sister to do the same, so she can start pulling herself out of the fog.

Welcome to the family.

Hi Rebecca - So glad you found this great place to be for the very latest in accurate medical information plus encouragement and hope from people who have been where you and your sister are right now. My son also put off seeing the dentist for about 6 months and when he finally did, he was sent to an oral surgeon who did the biopsy and sent him to an ENT who diagnosed the sore lump on the side of his tongue as SCC stage 2. The information on the main pages of OCF is most valuable and can help you and your sister to make a list of important questions to ask the doctor or for us here. There is every reason for your sister to survive this! My son is now 7+ years cancer-free and doing just great!