Hey Susan, hope you are still planning on going for that second opinion to Sloan.
We were expecting to hear surgery too. (as I just mentioned in another post) especially because our first contact was with a surgeon. That didn't happen though. And if he did need surgery I would have felt very confident with this guy and that's important.
Dave is doing chemo and rad then will get re evaluated. They were pretty optomistic that the only surgery he would need(if any) would be on the nodes.
The tumor on the tongue has really shrunk as has the nodes and he still has more treatment to go. So, fingers crossed,knock wood,etc.

Everyone is different with their care but I think it is important to get well thought out opinions.

Susan, My situation is also like your sister's. The ENT wanted to do a 10 hour surgery, break my jaw & skin graft from the wrist. I was soo scared, I just said "OK" to anything. Good thing my sister took notes & asked all the questions. But I met w/the oncologist for needed radiation even after surgery. Thank God for her! She saved me from any surgery. She told me that she can "cure" me w/ radiation & chemo...& she did!!!! Of course I suffer the side effects of the TX, but needed no surgery. I had a mushroom type tumor on the back of my tongue & it spread to the lymph nodes. Radiation zapped it all! So yes a 2nd, 3rd. appointments are good idea!

Ashley, thank you soooo much for your response. It was what I needed to uplift my spirits. That is such great news that you were speaking in 2 weeks. It's so scary when they explain that surgery to you. Your like your going to do what? And it's going to work? I find it amazing. My sister not so much. She is still in a state of shock as is a lot of my family. I think once she goes for another opinion and they tell her the same she will accept it. She is very scared because they scheduled her surgery a month away and she thinks it is going to spread which I think every person diagnosed with cancer would think. I'm just not use to her being negitive like this and it frustrates me in my little head not letting her know. I guess like it hits me sometimes like holy cow my sister has cancer. It hits her more.
Pat, we are trying out hardest to get her to be seen at sloan but it has been very challanging. We send one paper they need another. They need this from the insurance and that which is taking forever. We even told them we would pay cash for her first visit and they won't make an appointment. It has become very frustrating for us and very upseting to her. Hopefully we will get her in there. We also sent stuff out to NYU. I still don't think she will get an earlier surgery date. I think they are getting her in pretty fast. Not to her though she wants it out yesterday. She is so agraid that she will be dead I. 2 years. That's all she keeps saying. It's very scary. I wish she would become positive.
Susan, wow no surgery for your husband that is amazing. I have a family member on my husbands side going for the same treatment as your husband at Sloan with the same cancer. He just finished the chemo and is going for rad on may 17. He is doing very well also. I really hope that we can get her into Sloan. She has medicade which is making it difficult. As of now we are going to keep the original surgery date June 2 until we can see someone else.

Also Ashley I will keep you in my prayers for no chemo or rads and a full recovery. Please keep me posted.

Susan,

I'm glad my story made you feel a bit better. Honestly, my surgery was not that bad. I ran a marathon yesterday and I would rather have my surgery again than run another marathon:) Ok, maybe not really. But the marathon was more painful!

My skin graft never, ever hurt. It was a little soar and itched a bit, but nothing I couldn't handle. It has been over a month and a half since my surgery and my tongue looks almost completely healed. Of course, I can't move it exactly the same way I did before surgery. It's coming along though.

I met with a Chemo Oncologist and a Radiation Oncologist last week. Great news! No chemo or radiation for me! The doctor removed all of the cancer and my prognosis is wonderful. I'm a very lucky girl! If oral cancer is caught early, which it sounds like your sister's was, then the survival rates are really good.

I can't blame your sister for freaking out. She's allowed. I still freak out sometimes too. It's like, "ok, now what?" She will do fine with surgery. The first week is the hardest, but she will be on pain meds. Thank God for great pain medication!
Let me know how everything turns out for her. And don't forget to take good care of yourself also.

Ashley

Hey Ashley,
Thanks so much for your reply! You really made me comfortable going through this surgery with my sister. Her surgery was 6/2 and she is doing really well. She is talking but sounds like she has cotten in her mouth because her tongue is still swollen. She is also eating any liquid she wants. I just hope that her swelling goes down soon and she will talking somewhat normal. She is also dying for a london broil on the BBQ..We will be going back for her follow up on Thursday which would be 2 weeks post surgery.. I believe they are going to tell her she will need radiation which is going to be hard for her. Between the recovery from surgery and then going through that is going to be very tough.. This is also very tough for me but i am trying to be strong and supportive. Again thanks so much for your post. It is very comforting to see how well you are doing after surgery!!