Hi everyone! My sister was just diagnosed by a deep tissue biopsy. She recieved that about a week ago and for the last 2 days has been getting some eye pain and blurry vision. She had this to some extent before the procedure too on somedays. I was wondering if this is common or should it be something to panic about? She is panicing really bad thinking it is spreading. She has appt for head and neck surgeon on Monday to see the extent of the cancer (which we were told was not in the nodes during biopsy) and to discuss her treatment. Please any help would be appreciated I hate seeing my older sister so scared!

Susan, I wish I could give you some advice. But I won't even try. What I can offer is support and best wishes! Please keep us posted on your sister's progress.

D2

I hope she is being seen at a Comprehensive Cancer Center, or will at least have a second opinion from one as to an appropriate course of treatment.

Also, someone should be going along with her on the office visits because the patient can get so involved with trying to absorb the information that they just don't hear a lot of things.

Thank you both for your support. It means more then anything right now. She just recieved results from her PET scan and the cancer is only in the tongue. Does not look like any lymph nodes are affected. We are going to a CCC here in NYC and this surgeon his highly recommended. Her eye is still bothering her but with the news of the scan she has a more positive outlook.

Make sure that she gets to a CCC and make sure that she has a complete Team of Doctors to review her case!!! Semper-Fi Bob

Thanks so much everyone for your response. We recieved the results of her PET scan and it is only positive on her tongue.. WOOHOO!!! Such great news for us to hear..She will be going to a surgeon on Monday.

Well We went to Head and Neck surgeon today and he said the pain is normal. Says since she is inflammed it is all connected. He is concerned about 2 lymph nodes that appeared swollen on th PET scan. My sister was very scared today because of all the news she recieved. He recommends surgery but the tumor goes to her midline so it will be a decent amount taken out i would assume. Then he would take a part of her wrist and reconstruct her tongue. Says she has a 98% chance of talking and swallowing again. Believes she will have Radiation too..Whew Alot to take in for someone. She had a full blown panic attack and went outside as my mother and I asked questions. I mean is this possible? They can do this and a person can be ok? I think she might go for a second opinion she was kind of upset that it is going to take them 6 weeks to operate. She is afraid it is going to spread. This is so scary because you don't fully understand how they can do this and you could function again. She is in a state of panic as am I but dont tell her. I really wish she would come on this forum and talk.

Susan,

They can do this, and a person can be OK. Many here have gone through what your sister is now facing and have come out the other end to tell the tale (verbally). Is it a tough hand to be dealt? Absolutely.

Make sure she gets a second opinion (I had two second opinions) its what gives us some semblance of sanity that we are making the right decisions.

Tell your sister we are here for her (and you) whenever she needs a hand.

Susan,

My story is very similar to your sister's. I had about 1/3 of my tongue removed. The doctors took a skin graft from my leg to reconstruct my tongue. I had a bolster in my mouth for about a week. That was the worse part because I could not talk or eat. The bolster came off a week after surgery. Boy, did that feel good! It was still extremely difficult for me to talk and eat, but after about two weeks, my speech was back to normal. It has been a little over a month since my surgery and my tongue is healing up wonderfully! After a long day of work and constantly talking, I do slur my words a bit, but I know in time that will go away. My cancer did not spread, like your sister, and that is something to be so grateful for! I am meeting with a chemo and radiation specialist next week, but I am keeping an optimistic attitude! I can understand how your sister had a panic attack because I definitely exprienced that when I first found out about my cancer. The unknown is the scariest part, I think anyways. I am hoping this will give you some comfort! You sound like a really awesome sister....just hang in there!

Ashley

Susan,

I would also encourage another opinion. How far are you from Sloan? They have the best reputation!

Pat C