If I am asking to many quesitons or posting too many emails I suppose someone will tell me right?
My new issue
Some how I feel I have been swept along in this adventure without even knowing how I got here. The surgeon mentioned briefly that I had the perineural invasion. Next call I got was setting up multiple appts including with the Radiologist.
I liked him but now that I have recovered from my last visit where I was told all about the short term effects and the increase in survival rates by about 20% with radiation I am seriously questioning if this is the right course. I was told my case was taken to the Committee I assume it was a committee of doctors haha. No one has even mentioned the long term effects of radiation and frankly I am questioning whether 20% is worth what I believe might be even worst long term effects of the radiation.
When I try to speak with friends or family they take the you must do everything approach and then it is behind you but
I do not feel that is true.
Can any of you give me your thoughts? I know is this my decision but I handle issues by turning every stone.
Oh most important I got a little 1 yr old foster Schnauzer today, he had just a few hours to live at animal control. I am happier than I have been in months.

Knowledge is power Seda and you must gather all the information you need to make this decision.If your head is all over the place get someone to write all your questions down and ask them to go with you to your next appointment and make sure they all get answered.Most decisions about treatment are taken by a Multi Disciplinary team or MDT and the team is made up of a group of specialist doctors,nutritionist,radiologist cancer nurse specialist,and social worker.They review all your test results ,scans and x-rays and then come to a mutual agreement of the best course of action to gain the best result.Percentages are just numbers and mean nothing really, they are just a sort of guidline so don't get hung up on them.Your staging numbers look good but you really cant get complacent with this disease so i wouldn;t hold back on the treatment.

I would question the 20% benefit from Rad. Seems low to this gringo.

Great on the doggie save. With 8 cats, 2 dogs and a rabbit at our house; 7 cats, 2 dogs and 2 rabbits at my MIL's house and 1 live in office cat at my office, my wife and I can appreciate the glow you have right now from that SAVE.

Seda,

All I had was radiation so it had to be 100% effective. I considered chemo but got a no from three separate doctors.

Radiation is not that bad considering the chance of a third go round with this disease. I think it's an easy choice to make. If you ask me weather I would do radiation again if this thing came back my answer would be yes.

Seda

with 27 posts in two months, you are in no danger of posting too much. Even if you were, I have never seen anyone rebuked for asking too many questions. Ah, yes the feeling of being "swept along in this adventure without even knowing how I got here" - quite common. Like Liz & DavidCPA, my two cents is that radiation is a great weapon in this fight and not one to be scoffed at. Sure, it is the "gift that keeps on giving" but it has the best track record of knocking the cancer out. Trust me, if the worse case happens, and the cancer comes back, you will regret so much not having radiation. Heck, I had the maximum radiation and then started "should've could've" about my chemo and not taking the cisplatin only the Erbitux. So I'm with your friends and family on this one: you must do everything now because this cancer is unforgiving.
charm

Seda,
I'm certainly no expert but I believe Muceopidermoid Carcinoma prognosis is more a matter of the diagnosed 'grade', not the TNM staging.

Yours has been diagnosed as High Grade with Perineural invasion meaning the cancer is though to be invasive and has already invaded near by nerves.

I'm not sure where you are being treated, but if it isn't a top notch major CCC you might want to consider a second opinion from one.

I am assuming you have Muceopidermoid Carcinoma of the salivary glands and I would think you are wise have the radiation due to the perineural invasion, but that is question best answered by an expert CCC team.

In my opinion, when it comes to fighting this beast anything that gives you an additional 20% bump in your odds is worth taking and most of us get through radiation therapy just fine.

Please see the following reference info:
http://oralcancerfoundation.org/facts/rare/mc/index.htm

I know we are all different, but I was diagnoised with the muceopidermoid carcinoma. First biopsy was intermediate grade, but following surgery the path report confirmed it was HIGH GRADE. This made the decision easy, I had to have radiation. I didn't really think twice about it. I made it through radiation and currently do not have any significant negative effects. I wish you the best as you struggle with all of these decisions.

Sharon

Look at the 20 % as 20 % more chance to win your war. That could be added up to 120 % in your favor.

Seda,

Many of us live with the side effects of radiation, but I don't know anyone living with the side effects from death.

Sorry you have to make these decisions, but don't let the fear of something make you lose sight of what's important...living. Read the quote in my signature. I've never regretted any of the treatment decisions I made, even the one that disfigured me.

Eric

Seda:

First, congratulations on your new "baby." He will be such a comfort to you as you heal, which you will. As far as radiation, you will probably have side effects as so many of us do, but it sure beats the alternative. I hope you opt for the most effective treatment you can get, no matter what. I will be watching for your posts, and wish you the best.

julieann