I was diagnosed with a stage I squamous cell cancer under my tounge and had surgery to remove in January of 2013. A PET scan in September 2013 showed an enlarged lymphnode which was removed and staged as a TXN2AMO. Not really a tumor but cancerous none the less. I am scheduled for radiation therapy and I am terrified. I want to know what to expect as far as pain and hair loss and all the other things that come along with it, I want to hear it from people who have experienced it, not what the cancer websites say to expect. I know that there are a lot of people on here with all different types and stages of cancer and I realize that some may experience more drastic symptoms than others, I just want to hear the experiences so I can prepare myself. I am really scared, afraid that I will lose my job, etc. Thank you.
Lee

So many things to share and believe me you will get many helpful posts.

It's helpful if you start a Signature Line and add to it as your Tx progresses. I will assume you will have concurrent radiation and Chemo. I will also assume you will have 3 bags of the chemo Cisplatin. If not tell us in your new Signature Line.

For get about the hair loss. Most likely the only hair you will loose will be on the back of your neck where the radiation will exit. It will mostly grow back.

Now onto the important stuff.

First thing I will tell you is everyone can react differently to this Tx but my comments pertain to the majority of people treated just like you.

Where are you being treated?

You need to see a dentist familiar with oral cancer and the effects of radiation.

You need to get all dental work done pre rad including perhaps replacing metal fillings.

You need to get fluoride trays made and start using them.

You need to get a hearing test to establish a baseline.

You need to get your TSH levels tested and record this number for future reference.

You need to eat all your favorite things now and often. I don't care what your weight is, eat like it's a contest as you will loose most of your taste early on and won't regain it until post Tx.

For most the first few weeks are uneventful, mentally challenging but physically uneventful. Problems usually start after the 2nd bag of chemo which is appx after 15 days of rad and they continue to get worse until appx the 3rd week AFTER radiation ends. During that period is when most find it difficult to concentrate and work. You will also need a Caregiver, someone to help you when you need it especially during the rough periods. Educate yourself and then educate your employer but I doubt you will loose your job.

Pain will vary and there are many pain med options and don't be afraid to use them. More on that as needed.

This cancer is 50% or more mental and this site is dedicated to educate you and to help you get thru this Tx and it's recovery. You may not like what we have to tell you sometimes but believe me it's better to know as much about this cancer and it's treatment as possible.

Please ask us ANYTHING!!!

Hi Lee, and welcome -- I'm sorry about your cancer but so glad you found us!

David just gave you the most comprehensive to-do list ever on this board. It will get you off to a flying start.

Job worries make it all harder. By far the vast majority of employers and co-workers are very sympathetic. If your employer is covered by the federal Family Medical Leave Act, your job is protected during up to 12 weeks of leave. FMLA applies if your employer has at least 50 employees within a 75-mile radius and you have worked there for a year and a minimum of 1,250 hours.

States and employers can require/offer more generous FMLA benefits. You should look into whether Florida has a state FMLA law providing additional security.

Hope this helps -- stay in touch!

Agreed as David and Mamacita mentioned. I see no chemo in treatment?

Employment, Income, and coninuation of Medical Insurance is a big concern, and how will one get these if no longer able to work, even for short term, is not often thought of. It was a big concern for me, being single. FMLA is only for job protection, but is not compensation for income. See about short term disability, which is 26 weeks, which can be extended to long term disability, if your employer has it. Mine also had managemny compensation for your salary, depending the years you worked, and mine was 75% of my salary, plus the Short term disability, so I lost no income, and I needed it because I could no longer work after my first treatment. Find out what your benefits package(s), contracts are, when forms, type of forms are required, and by what dates, and what updates are required, and doubt many will educate you, even HR. I know people who lost their jobs not following the rules, no updates, and extended their FMLA by one day by sickness or no sickness, its only business! I had to bring HR's "attention" at every step, by bedside in the hospital, what were my entitlements were, and knew them like a book, and received what was due, and wasn't asking anyone for sympathy payments, but only what I was entitled too. I even called the U.S. labor department, who made a three way conversation, and telling my employer I was right lol. When I was going through treatment the social worker even said to apply for SSDI, just in case, and laughed to myself. I wound up having to apply 7 months later.

Good luck

hi there - i love David's response its comprehensive. Try not to freak it's bad to horrible but you will get through it. As for the hair if your are a woman, and you are receiving it to you tongue and neck area then you may lose it from behind your ears down to your nape. Mine also thinned out all up the side of my head on my radiation side. I was able to pull it back into a low ponytail with a scrunchy and it sort of hid the baldness from the ears down then when I was a few months out of treatment and it was maybe 1.5 inches long I had extensions put in - it worked like a charm for about 6 months and then I had them removed and had a bob... good luck and welcome...

Lee, welcome to OCF! Glad you found our site to help you get thru everything thats coming up in the near future.

I have sent you a PM (private message). Look for the small flashing envelope next to the "My Stuff" tab and click on it. There you will get detailed instructions on the link on how to add a signature and to easily navigate the forum.

Read the forum and main OCF pages and educate yourself. An informed patient is a strong patient.

Best wishes with everything!!!

Hi Lee:
Haven't heard anything from you since your first post.

You mentioned fear of the pain and hair loss of treatment.

I had some fear also when diagnosed. Then when I found out I'm positive for HPV-16 that made it worse ... right up until I read (here) that HPV cancer is more easily treated and has better survivability with lower risk of recurrence.

A silver lining in that black cloud.

Stay with the forum, there's a lot of positive energy here.

Tony