I am a woman in my late 60s who has suffered from lichen planus, an autoimmune disease, for many years. Lichen planus patients have twice the chance of oral cancer as the general population. The doctor who has been treating and monitoring my lichen planus didn't like the look of my tongue on my last visit and did a biopsy (this was 7/31). It came back showing a malignancy. She sent me to the Oral Medicine clinic at University of California San Francisco, and I have an appointment with a head and neck surgeon on Monday (8/20). This doctor will examine and stage the cancer, and then I'll have an MRI. I've been told that I'll definitely need surgery and possibly radiation. I'm trying to read everything I can about this type of cancer, but I've just started and I'm feeling totally overwhelmed. And of course, scared and nervous and depressed. Is there anyone out there who has been there already and can give me some tips on what to expect, what to watch out for, etc. Thank you very much in advance.

Bobsgirl,

You've found the best place for information. I can give you what I know, but there are others who will also chime in.

I went to a Cancer Center to have my surgery. We have some people on the forum from CA they can probably give you advice on which is the best Cancer Center in CA. You do want a Cancer Center!!!!

I had a CT/PET Scan, biopsy then surgery. I didn't have an MRI. My tumor was on the side of my tongue towards the middle. My Surgeon took the tumor out until he got clear margins. I also had a ND there wasn't any cancer showing per CT/Pet Scan in the neck area, but my surgeon suggested an ND to be on the safe side. The way he explained it to me, cancer cells are so small that CT/PET Scan don't pick them up until they are the size of a dime. So I had the ND. The cut was from my ear to the middle of my throat. At our age we have one good thing going for us neck wrinkles, you can't see the scar.

I was on Roxyodine liquid for 2 weeks then I went to over-the-counter Tylenol.

I was scared, depressed and nervous, I'm the biggest baby going. When it was over and I was on my way home after spending 2 days in the hospital I thought this wasn't so bad. I scared myself half to death.

I do have a little lisp and when I talk fast my words run together. Before surgery I stocked up on ice cream I made milkshakes for a few days. Some foods like Mac and Cheese tasted terrible and so did mashed potatoes. My taste buds came back after a few weeks.

My opinion have the ND I know some don't agree with it. I go to one of the best Cancer Centers and that is what they suggested.

I hope all goes well, others will be along to give you more tips and advice. BTW I'm 65 I'm 3 years out.

Take care,
Connie

Hi bobsgirl,

I had tongue cancer and was treated at UCSF. It is a comprehensive cancer center so that's a very good thing (for what it's worth, they are ranked number 8 for cancer treatment on the US News and World Report for 2011). I had surgery to remove the tumor from my tongue, a neck dissection, radiation and Erbitux. I have been really happy with my doctors and the care that I've received. Once you have a treatment plan, you'll have a better idea of what you're facing. I would be happy to talk with you and answer any questions that I can (although there are others on this forum who are much more knowledgable). I'll be at UCSF Tuesday morning and Thursday afternoon next week. If you would like to meet for a cup of coffee or something, feel free to send me a message.

Best wishes,

Tracy

BobsGirl

In addition to all the good advice here on the forum, I recommend that you go to the OCF web site, (the link is at the top right of this page in blue : Oral Cancer Foundation) which has lots of information and pictures on radiation, surgery, chemo and every aspect of oral cancer treatment.
Just in case, here is the link
OCF
All the categories are on the right hand side, just click and learn.

I had lichen planus about 27 years ago but not in my oral cavity. I had it surgically removed and it never came back.

As for One thing to watch out for. Insist on a blood test for your TSH or thyroid hormone levels now before any TX. While the textbooks all state it is important, most doctors get it backwards and only test TSH levels months after TX. Since the range on lab tests for normal is not only super large but also incorrect, it's too late then. You want your TSH level to be the same after cancer TX as it was before TX. The only way to get that is to know exactly your TSH number. get a copy for yourself with the actual number.

Charm

Hello - I had a similar cancer - with the works... Surgery, neck dissection (40 nodes removed) I had one node involved - so I had chemo and radiation. Not fun but I got through it. they took a little over a 1/3 of my tongue and reconstructed it. Today I have a bit of a lisp when I get tired or my tongue swells - which it does ocassionally - (missing lymph nodes will do that to you...) but other than that I'm good. Surgery is a faster recovery than radiation. The advice everyone has given you is good - go to the best possible ccc - and be aggressive with your cancer. Hugs and welcome.