Well, today I saw the surgeon (ortholaryn..something?), had x rays of mandible, CT scan, bloodwork. My surgery is scheduled for two weeks from today. Doc was very upbeat (somehow I got the feeling he would be if alligators were literally chomping my toes! :-)
Anyway, he said he would not know the extent until the surgery, but just from the examination feels like it is in early stages. Will see if it went to lymph glands to know more. Plans to take part of tongue, part of bottom of mouth floor, and lymph nodes on one side. So here we are:

Question 1: He said I may not have to have radiation. I thought that was standard? Could he just be giving me information in small doses?

Question 2: He said I probably would be in hospital 3-5 days and mouth "packed"....didn't give any real details. Would someone please tell me first hand what this is like?

Another question (3): I can retire at any time and had planned to in May before all this came up. Given the doctor says I will be off work 5-6 weeks anyway after this surgery (and that is if no radiation)....what are your all thoughts about doing that having "been there"? I don't anticipate having nothing to do retired anyway...have bought a new home to move to and need to get on to it, have grandchildren to babysit, etc. But what are your thoughts and experiences on that one?

Hello, JJ. I am so glad to know that things are moving so quickly for you. The waiting around time is sometimes the worst. As to your questions:
1. I have learned that sometimes when there is no spread of the cancer to the lymph nodes, radiation is not given.
2. I had a tumor removed from inside my mouth, not as extensive as you will have, but I needed a trach and a PEG. You might want to ask about those. If what you want to know is about pain, I did not experience any that a little medication the first two days did not take care of. After that, no drugs were necessary.
3. This is where I can speak with authority. Our plans to retire VERY early were realized and as so many people said, I don't know how I ever had time to work. I would recommend that you go for it. Not only will you be freed from the worry of returning to work if you don't feel like it, I guarantee you will find a gazillion fun things to do, and with a new house, you will be way too busy for a job. If you do not depend on your employer for insurance, I am sure you will have a great time being retired. If you garden, for example, you will be feeling better just about when it is time to get those seeds and plants in the ground. Seriously, JJ, I can highly recommend retirement.

JJ-
Your experience so far sounds similar to mine. My tumor was under the right side of my tongue. I had a biopsy done by an oral surgeon. The margins weren't clear, and he referred me to an otolaryngologist (ENT oncologist)who did further surgery on my tongue and floor of my mouth. The area was grafted with Alloderm so I wouldn't be tongue tied. The graft is incredible. He stitched a bolus (packing) over the graft to protect it. The bolus was like a pillow between my tongue and the floor of my mouth. It wasn't bad... I could talk, eat a full liquid diet, swallow, etc with it in. It was removed one week after surgery along with the drains from the neck dissection.

My tumor was small, the lymph nodes came back all clear. I was staged T1,N0,M0 so I did not have radiation. I see the ENT every other month for a check, so far all has gone well. My next appointment is in March, after that visit he will schedule chest xray, ct and lab.

As someone who had it relatively easy, I have to say healing took a long time. It was frustrating to have difficulty talking, and I still tire of talking and sound different when I am tired. Pain was tolerable with liquid roxycodone the first two weeks I was home, I was able to take lortab after that. I was off work for four weeks, worked half time for 3 weeks, three quarter time for 1 week, then full time as tolerated. Some weeks I made it all week, others I would take off a day mid week to catch up. I had a ton of sick leave, had never used any of it in 15 years, so I didn't push myself too hard. I am glad I took the time to heal, I am also glad to be back to work in my "new normal."

Hope this helps!

Sincerely,
Lisa

hi,

in regards to 1. If the tumor is small, and the surgeon gets good margins, or if it does not extend into other tissue layer, and if there are no lymph nodes involved, then you may not need radiation.

I had a tumor removed from the side of my tongue and 1/2 my tongue was removed; no lymph nodes were positive for cancer, but the dr removed a lot of them (67)- all on one side of my neck. The cancer was staged as T2, N0, MO.

But sometimes it has been referred to as stage T2-3, because it was on the big size, and was a little deep, was close to the center of the tongue (which increases the odds of moving to the opposite side of the neck,)and although the doctor got clean margins, the margins were not extensive, and cell structure was moderately differentiated. Also it seemed to be more invasive/growing downward into deeper tissue which some say is more of a concern than a tumor that is growing outward.

After surgery, based on the good results of surgery (got all of tumor w/margins, no lymph involvement), our surgeon said radiation was not required. He took my case back to the tumor board where the opinions were divided over whether to do radiation or not. The doctor left the decision up to us. Wow! What a tough choice. We consulted with other doctors, including one other tumor board which was split. The opinions given to us were that Stage 2-3s are a gray zone when it comes to radiation - there is no clear cut evidence (no studies or statistics) that radiation improves the outcome/chances of survival/risk of reoccurance, etc. Whereas with Stage 1, or small tumors with no lymph involvement, radiation usually isn't required, and with stage 3-4s (larger/or spreading cancers) rad. is done.

So, every case is specific. So ask lots of questions as to why or why not do radiation.

Good luck!
ps. I am now almost 4 months out from surgery and I am happy to report that the scars on my chin and neck have improved so much! Its not so noticeable. When I was in the hospital in October, I never would have guessed I'd look this good (or this normal) in only 4 months! So don't get discourage everyone, there is hope!
michelle

Hi JJ, glad things are moving quickly for you. In my humble opinion, since you were thinking about retiring this year anyway, why not go for it? I was 44 when diagnosed with tongue cancer (it was also in two lymph nodes in my neck), had 26 years service in with Fed Government. I had surgery in May 2002, radiation through end of August, speech therapy, physical therapy to help with neck pain and to open my mouth again, finally decided to put in for early retirment in March 2003. It was a big decision, I enjoyed my job and the people I work with, plus we have two kids to put through college, however, I feel I made the right choice. In the future, I might do some volunteer work or get a part time job close to home. God Bless You and try to take it all one day at a time!!!!
Carol

JJ,

My final diagnosis was T2, N1, M0. I had a 40% partial glossectomy and right side neck disection. The margins were clearly defined and clean. Of the 46 lymph nodes removed 45 came back clean. The one that was positive for cancerous cells was (in the words of my surgeon) encapsulated, very small and closest to the tumor. He explained that the cancer was contained well within the node and it was in the very earliest stages. For these reasons, and other factors, he didn't believe radiation was indicated. I placed my trust in him to do the surgery and I agreed with his reasoning.


Your second question: I needed to have a trach put in and was doped up pretty good for a few days. They did a "radial forearm free flap reconstruction." In other words they cut a piece of my left forearm and rebuilt the tongue. My surgery was on a Friday and I was discharged on the Monday of the following week 11 days later. I was heavily medicated for two days. By Weds I wasn't asking for pain meds anymore. My discharge was actually delayed two days because of a mixed up with the home health care. The delay actually helped in that I was able to leave the hospital without the trach. and only a nasal feeding tube left to deal wth. As a priest my biggest concern at that point was my ability to speak. Within a month I was comfortable enough with my speech to return to the parish and preaching.

The question of retiring can be looked at alot of different ways. I woud suggest this for your consideration: would retiring earlier than you wanted to be something you welcmoe or would it be better to return to work for a short while after the surgery to reclaim a sense of returning to your "normal life" first? No one can answer that but you. Many of us have spoken here about wanting to feel normal again. But for each of us what we need to do to get there is different.

If you do choose to retire earlier than you expected by all means enjoy the unexpected extra time away from workinig with those grandchildren of yours. I suspect they will help you feel "normal" faster than anything else.

My prayers are with you as you head into your surgery and then enter the recovery stage of your fight.

Peace,

Fr. Mike