New here, Dianna,They said "you got cancer" November they took half my tongue, said "they got it all"
All? Why don't they explain anything? Is it because I'm disabled and on ssi? Terrified and in pain.

Dianna, welcome to OCF! Im so sorry you have the need for our group. We will gladly help you with info and support. Hopefully by joining our online family it will help ease your mind so you dont have to be afraid. We have been where you are and fully understand the huge changes you are trying to adapt to.

Treatments and doctors can vary greatly from center to center. I hate to think you were not given the very best care due to being on SSI and disabled. The best thing I can advise is for you to read and educate yourself about your illness so you can be a strong advocate. An informed patient is able to ask the right questions and get the best care. If you are in pain, go see your doc and get something to help manage the pain. You have been thru a major surgery and recovery can take a long time. If you havent already been to see a speech therapist or speech pathologist, they could probably help you with your recovery.

Best wishes with your continued recovery.

Dianna, I sent you a post and then accidentally deleted it! I understand how you feel five months after surgery if you haven't been given enough information and support from the medical people. Do go to see your GP and ask for some help in understanding the cancer, in getting pain relief and assistance with your depression.

After treatment can be a very hard time when you feel you've just been thrown out into the world again with nothing to hang onto. People who haven't had cancer don't understand how the fear can overshadow our lives but people here DO know what it is like. We will support you.

It sounds as if you had successful surgery so hang onto that thought. The Cancer Society might have someone who can help you get through the post-treatment issues.

I wish you all the best.

Honey... you need to call your dr. and talk to him or her. We got it all -mdoesn't begin to answer the questions you should have answered for your.

Firstly I hope you were treated at a CCC... if not this might be the time to make a change to a different ENT. You need to see an ENT who deals specifically with oral cancer on a regular basis. Other ENT's know what they know, but unless they're experienced with OC - then there's a good chance they're not well versed.

That said. There are a few questions you should ask.

I'm assuming by your post they only did the tongue surgery? That's usually the first line of treatment which is great (scary and painful but great) did they also do a neck dissection?

This is something most experienced ENTs do. Often because this cancer can hide in the nodes microscopically and a few months later a node will pop up in your neck. So if you didn't have neck dissection then feel your neck daily (not obsessively just once a day) and get to know what is normal. Anything out of the normal you need to hightail it back to your ENT asap... no waiting.

You should know the size of the tumor removed, and your staging.
and you should have frequent follow ups particularly during the first year.

You also want to know the aggressiveness of it. (well differentiated, poorly differentiated)

I don't think that your personal treatment has really anything to do with you being on SSI - some specialists just have the - leave it to me - mentality. It's almost godlike in its prevalence - but the assumption that you should trust them completely and not ask questions is misleading. They are human, they make mistakes and miss stuff, and most importantly - while I am sure they have your best interest at heart when they have you in the room. They likely have scads of other patients that they feel the same way about. My point is knowledge is power. Only you or family can advocate for you so it's in your best interest to acquire a solid knowledge base.

So don't let him/her blow you off next time you see him. Simply start off with... I have some questions... and lay it out.
If they are reluctant to answer - unless they are tops in their field... I would find someone else.

This disease can be deadly.

hugs.

Thank you all so much for the replies! So grateful to read that I am not alone in my fear,anger,and depression. Everyday is a new one for sure. Working still on the signature, but thank you all.
Yes I do feel if I could get into a CCC, my outlook might be more positive. Living in a relatively small town, help is hard to find, Even to see a shrink! Had my first experience with "discrimination"
When someone walked away from me, when trying to ask a question, I got the strangest look. Man that hurt!

If you're in a small town you may have to re locate for any further treatment. There are services available to you - most CCCs have an affiliation with a hope house of some sort that would allow you to stay during your treatment. If it's drivable then you could travel home on weekends. Maybe someone else in town has to travel for treatments too. I would look into it.

I wouldn't take on rude person as the norm. Some people are preoccupied.

I'm an actor... rejection is my life. I've learned not to take it personally because 99% of the time it's not about me.

hugs.

Dianna, welcome to the family. I write out a list of questions that I have before the appointment and announce to the doctor that I have x number of questions to ask as soon as he/she comes in. Then I check off the questions as they are answered. The doctors know I have come prepared and they tend to make sure they have answered all my questions.