Hi Terry,

Wow, great news. Congratulations.

My experience has been as follows. 30 nodes removed April 6th. I was numb from my ear to the midline of my neck. I never applied anything to the scar and it has healed perfectly. It is still visible, but fading.

My numbness has been decreasing over time and my ear and earlobe are back to normal. The numbness still exists from about an inch below the ear to the midline. The only time that I'm aware of the numbness is if I touch the area or something rubs against, like a shirt.

You mentioned your shoulders and neck in your first posting. I can tell you that I now have 100% mobility back in my shoulder and very minimal discomfort when I reach my arm straight up. This too, shall pass.

I don't expect that the numbness will ever go away and I am more than willing to LIVE with it the way it is. What a small price to pay for being cancer free.

Good luck on your recovery and again, congratulations on the great news.

Hope this helps.

Jerry

Jerry,

Don't assume the numbness will always be there. I found the healing process and nerve regeneration to be slow at times, but the entire area around my incision did get full normal sensation back eventually -- no more numbness, no more "pins and needles".

Cathy

That is great news Terry! I bet you are so relieved to get that report!!!

I was wondering how much time lapsed between the completion of your chemo/rad and your surgery? My Mom is considering a consult from MD Anderson for the removal of the nodes. She stopped her IMRT and chemo 3 weeks ago and her local oncology group will scan her in 2 months. They don't feel she needs to consider surgery but I want a 2nd opinion on this issue. I wasn't sure if she should go to MD for the consult before the 2 month scan or afterwards. So I was curious of your time frame and when the doctors decided on pursuing the surgery. Thanks & congrats on your promising pathology reports!
Tami

Hello everyone thanks for your posts.
I had asked my ENT yesterday about my muscles? in my neck and upper chest area hurting at times and feel like they want to pull my head down and the only relief was to sit back in a chair with head support or lay down (not flat ) with head support. He told me that because of the way he had to take the nodes out (in the mass they are in he had to stretch some of the muscles and scrape some of the mass off of them. That is why I get the sensations I do and this will eventually go away WITH TIME.

That seems to be the answer to all my questions I aske the doctors it WILL GET BETTER WITH TIME. The road to recovery was hard. Reading what people are currently going through reminds me of what I went through. I really don't remember to much of it because I was so drugged up from pain killers.

When I was first diagnosed I was given options of surgery first and then do rad/chemo (surgery on tongue to remove tumor and neck dissection to remove nodes plus future reconstructive surgerys) or do the rad/chemo first and then do the surgery. My husband and I decided to do the rad/chemo first and I had in the back of my mind that if the rad/chemo did their job I would not have to have any surgery.

My last radiation was sometime mid may. (My memory is not as good as it once was and I have a hard time thinking sometimes (told it is a side effect from radiation and may get better with time)

I saw my ENT the first week of june and we scheduled the neck dissection for July 12th. I was scared and my mom kept pressuring me not to have the surgery. We scheduled another appointment with the ENT to talk about concerns at the end of June and at this time I could not talk again due to mucusitus.

We decided to postpone the surgery for a little while because I just needed more time to. I also saw my radiation and chemo doctors and they encouraged me to do the surgery because that was the planned treatment.

I could not believe how I acted when I look back. I have always been strong for my children when they needed surgeries for differnet things like it was nothing but when it came to me no way. We scheduled another appointment 5 weeks later.

It was the longest 5 weeks I have ever had!!!. I kept feeling my neck and still having issues with my tongue and throat. I talked it over with several people some from this site and others who my ENT recommended and people that I met who have been there. They made it through it fine and I finally got it through my head that I had to do all that I could to make sure I got rid of this awful disease!!

It has amazed me on all the different cancers there are and how many people have or know someone who has/had cancer.

When we went back at the end of July and talked to my ENT and told him that we decided to go on with the surgery he was glad. He said he wanted to be sure that I would still be here in 5,10,15+ years.

I have followed along everyones stories (most of them) (some I have a hard time understanding what is going on) and my heart aches for all that have/had and are going through this. No one deserves this. It does changes things and people and I guess there has to be tragedy to bring people close together to help where there was not a need to before.

Life may not be all that it is cracked up to be but I will try to help others all that I can and be a shoulder to lean on. I pretty much was that kind of person and now I have more doors open for me to help.

everyone take care and we have to live life one day at a time and smell the roses. (btw I lost my sense of smell during rad/chem but it is coming back!!)
Love
Terry

Thanks so much for your story Terry....it gives me inspiration for my Mom's recovery and I will be sending her your last post to read. I wish you many years of health & happiness!! Thanks again for taking the time to post your story.
Tami

Tami,
I also just remembered my chemo doctor who never sugar coated anything. She was always up front with everything from how I would feel to the hair loss. When she told me to have the surgery and if it was her she would I asked her why and she said that she sees cancer all the time and knows what people go through.

The best thing is to fight it hard with all you got and since I already been through the hardest part and was still here I should go on with the surgery.

If the cancer comes back and I didn't have the surgery I wouldn't have done enough. Plus the survival statistics are not as good if you get it again. That is what they told me.

I hope you mom can get on this site and read read read. She is not the only one that is/has/will go through this.

She has to be strong for her and her family. I pray that she recovers well and from my understanding it is just her and her husband in Texas. Maybe it will be time for a move closer to family?

I will keep both of you in my prayers. Keep in touch
Love
Terry

P.S. I also remember everyone telling me that it will get better. I would be feeling so bad and would not believe them but I am a lot better than I was. Keep the faith in your doctors and if you feel like you need a second opinion you have every right. That is what saved me was the second opinion when they first found the lump in my neck!

Cathy...thanks for the encouragement on the numbness. I certainly will welcome the feeling back, if it happens.

Terry...happy to read what a great attitude you have.

Jerry