Hello,
I have been reading up on Oral Cancer and learning alot. I need to find out exactly what I have and how bad it is.

In October, 2002 I had a big cyst (that is what I was told it was) removed from my neck. When I went to get stitches out I was told it's cancer.
I ended up having a radical neck disection in December 2002 (right side only). They never did find the primary, they took out my tonsil and did a panedoscopy. I had 7 weeks of radiation on my right side of neck and mouth area that finished in April.

In August I went to dentist and mentioned about the little lump under on my tongue. I thought it was from the radiation. He did a biopsy and I found out it is cancer. My oncologist thinks it is the primary, however the surgeon does not think so because it came up after the radiation.

I just had an MRI and I waiting for results to find out what surgery needs to be done. I have been told they can not do any more radiation in that area.

Can anyone suggest questions that I need to ask.

Thanks,
SJones, Brampton, Ontario

You have certainly been through a lot already, SJones, and didn't need this! I would suggest asking about chemo. Also, depending upon the amount of total radiation you had, perhaps you could have IMRT which can target just one specific area, thus delivering less radiation. You are living the second-time-around nightmare we all fear, so know that everyone who reads your post will be pulling for you. Let us know how you are doing. Somewhere on this forum is a post by a woman who had to go back three times, but is alive and kickin'and here to tell the tale. Keep that in mind!

Dear SJones,
If you can, try to get a second opinion from another ENT. All doctors are not the same!! Some have much more experience when it comes to oral cancers than others. There may be other options besides surgery, like IMRT on the affected area. Don't forget to ask how surgery will affect your quality of life since surgery on the tongue can cause problems with swallowing and talking. Please keep us posted with you decision and treatments.
Wendy

My surgery is scheduled for Thursday. I have not been to see the doctor since the MRI therefore I don't know what I'm in for. I know the cancer is under my tongue, but I don't know what the plan is.

Spoke to my father on the phone this evening and he could not stop crying. This seems to be more difficult for him than me. I'm not sure what I can do to help him through this. He was not around during the first & second surgery. I'm just trying to be positive and believe I will get through this.

Hi S. Jones,
You truly have been through a lot already. As Joanna mentioned - find out if chemo or an alternative to radiation therapy would be an option for you. Some things you may want to ask about this surgery is how it will effect:
*eating/swallowing
*speech
*overall quality of life.
You may also want to find out about the risks involved, length of recovery time, therapy that may be involved afterwards and even any questions on swelling and pain. Ask anything and everything you can think of. There are no wrong questions to ask - and the more you are prepared, the better. It's a good idea to list all questions on a piece of paper/notebook - since it's so easy to forget to ask crucial questions as surgery time arrives.
As far as your dad - I truly feel for him. As a caregiver myself - I know the frustration and anguish he must be feeling. Tell him he is not alone - and that there are many people here in this forum who have gone through hellish ordeals and are alive and well, and here to tell about it! There are many caregivers here as well - and if he is able to - he can log on, and we're here to offer support and helpful advice. My thoughts and prayers are with you on your upcoming surgery. I know you will do just fine! God bless and take care. Write again when you can.

Thank you everyone for all your suggestions and well wishes.

My surgery was successful, 20% of my tongue was removed, mostly from the bottom right side, no other cancer found with the panendoscopy. I am doing very well. I can talk, not perfectly yet but everyone understands me. I can swallow, but only liquids right now. It hurts more to swallow the pain pills right now, so I am putting up with the discomfort. I go back to see the surgeon in 3 weeks. He said it will take a month to heal fully. I will ask about IMRT and chemo then.

'm still smiling and staying positive. I'm so glad I found this site and am meeting others who have been through similar stuff. I wish I found it sooner!
Thanks again, Sharon Jones

Sharon, I'm so happy to hear that everything went well - and there is no further sign of cancer!! Hearing that has got to be the best "therapy" out there! You made it through this part - and remember that the healing process takes time, but I'm glad to hear that all is well, and I wish you good luck and continued success on the road to recovery.