Hi, I'm Cindy from Wisconsin. On 10/16 I had a partial maxillectomy, 2 molars removed along with a tumor on my right palate/alveolar ridge due to squamous cell carcinoma. I have an obtulator mouth piece to help me eat, drink, and speak. My doctor says I have clean margins, but they are still suggesting radiation therapy for 6 weeks. I am very hesitant due to the complications both temporary and long term. I am already having problems with trismus, and have ordered myself a Therabite device to exercise my jaw. I joined this group to hopefully get some advice about whether to take the radiation or not. I will be 57 next week. I also have rheumatoid arthritis, lupus, and sjogren's syndrome which was diagnosed 18 years ago.

Welcome to OCF, Cindy! Im sorry you have been thru so much and have a need for our group. We will help you with info and advice.

I would suggest getting a second opinion, if possible from a Comprehensive Cancer Center (CCC). The physicians will all be working together on your case and make a group recommendation so everyone is on the same page. You are facing some difficult decisions. Our group is fellow patients/survivors and caregivers without medical backgrounds. This makes us able to help you with pointers, listen to you both good and bad and cheer you on. Unfortunately we are not qualified to decide about weather or not to do rads especially with preexisting conditions that could affect rads. While some patients struggle pretty much right from the start, there are some patients who sail right thru barely noticing any side effects. The lucky ones that have an easier time of it usually are the ones who are the best at focusing on their intake and hitting the daily numbers every single day. At 57, (Happy early Birthday ) you have many good years ahead of you to live a good long life rads or not. There are many, many pages of info to learn about your illness on the main OCF pages. This can help you with your decision.

Best wishes with your continued recovery and tough choices.

Cindy,

I would have to agree with Christine - get a second opinion at a major cancer center. Everyone is different, and we are not medical professionals nor do we know enough about your case to give you advise on treatment.

Yes, radiation is tough and many have long-term issues because of it, but if they did not get all the cancer with surgery alone, it can spread and you can be in a worse situation. I know many that were treated with surgery only and are fine, and others like myself that had surgery and radiation, and still had a recurrence.

It is a tough decision to make, and it is in your best interest to seek a second opinion with doctors that treat a lot of oral cancer patients. As Christine pointed out, there is a lot of great information on the main pages of the OCF website, take notes, make a list of questions to ask, but ultimately it is a decision you will have to make.

Wishing you the best!

Thank you so much, Christine. I am very lucky to be only an hour away from a CCC and that is where I am going. I just need to knuckle down and do what is best for me. I will be able to have my rads done in my hometown, if I choose to, so I do have options. Thanks again,
Cindy

You might want to check out the radiation machines they are using at the CCC compared to your hometown. Let us know how it goes. Do your research so you can ask questions about the type of radiation they will be using. Some machines are more precise than others.