Hi Susan,

I'm sorry to hear that you are joining us but welcome. For what it's worth, my husband also has cancer of the tonsil with involvement of the soft palate and the base of the tongue. He had surgery first - and that WAS the recommendation of the tumor board at a comprehensive cancer center. Please do not think that you have screwed anything up here, you most definitely have not. Brian has already clarified that's not what he meant to imply.

Amy is right that we need to look forward, not backwards. Every case is individual and there is no universal treatment or one size fits all. Some kind of combination of surgery, chemo and radiation is typically done DEPENDING on the stage, level of invasiveness, nature and location of the tumor.

No 2 people have the same exact cancer so that's important to remember as well. While it's very valuable to share our experiences and treatments with each other, we are not there looking at the pathology reports and the clinical symptoms/medical history with the physicians, patient and family. You need to form a relationship with a medical team that you are comfortable with and keep our very well intended advice in perspective as just that. We're patients and caregivers who have been there and care enough to want to help each other but we're not your medical team. Brian has done all of us such a tremendous service with this website and his willingness to continue to share what he has learned over the years.

It's good to get a second opinion when you are able to do so but that's not always going to happen. You have one scheduled for next week so that's fine. My best advice to you is find out as much as you can about this disease and talk to the physicians about the pros and cons of any treatments they are recommending, but go with your gut when making your decisions and know that you did the best you could with the information you had available to you at the time. You're going to have enough crap to deal with over the coming months, don't add undeserved guilt to it.

As for the side effects, yes they are common especially since his surgery was only Sept 5th and it's still healing. Your husband has all kinds of swelling and trauma in his mouth right now. Jack experienced the nasel reguritation in the beginning until the swelling/healing all settled down and he learned how to position his head while swallowing. He also went for speech therapy to strenghten his swallowing and his soft palate. Swallowing is going to be a relearning process and some foods work better than others. Also he needs to take his time and not expect to rush through any meals. Brian makes a good point that future reconstruction is not your priority right now, it's getting started on the radiation/chemo.

I am happy to tell you that Jack's graph area did heal eventually and that they don't feel he needs the obdurator prosthesis as they originally thought 7 months ago. His speech is slightly more nasel than it was but you'd have to know him well to pick that up. Again, there are exercises a speech therapist can do with him on these issues.

They wanted to remove his wisdom teeth as a precaution but he refused because they were healthy and he was committed to doing the meticulous daily mouth care that will be necessary due to the radiation damage. That's also settled down into a routine that Jack is now comfortable with. It was explained to us that keeping the teeth meant a serious committment to the daily mouth care and as long as your husband is willing to do that it should be okay.

Radiation and chemo also cause major side effects so you need to ask what they are and when they are likely to develop. "What can we do to be proactive in combating these side effects" is a good question. You will want to ask about anti-nausea drugs, and the likely impact of radiation on your husband's swallowing. Jack had a PEG tube inserted because they knew his swallowing would deteriorate with radiation and he thought it was a godsend. It was just removed last month and the swallowing is a work in progress but getting better. Not everyone gets a PEG tube but if he doesn't you need to find out how he is going to maintain his nutrition and hydration during treatments.

The getting through it project has some great information on what I wish I had known so you should read that. Also the home page has wonderful information.

Please feel free to send me a private email and best of luck to you and your husband next week.

Hang in there, it does get better. Regards JoAnne