Sheldon is putting up a story tonight bout a teenager who has been though surgery, radiation and chemo for oral cancer and is just now getting is life back together being a teenager.....

Shaylynn,

Being upset and angry is normal. We have all gone through that.

I have a different approach to what you should be doing now regarding eating. You apparently don't have your cancer staged yet. When this is done, a treatment plan will be made for you and I hope that will be done by a team of doctors at a Comprehensive Cancer Center.

If you are a Stage I, it is possible that your treatment may be limited to surgery only, as mine was. If that's the case and you don't have radiation and or chemo, any concern about gaining weight will not be needed. I lost only 15 pounds due to my inability to eat for about 10 days. I've managed to keep about half of that off in over 3 1/2 years.

So again, right now you should be concentrating on getting a treatment plan and once you have that, I'm sure you will get good advice from many here.

Good luck.

Jerry

So is it safe to say that a H&N surgen who specializes in H&N cancer would be a good place to start. Have him look at my scans...talk to him about options...needs to handle 100+ cases a year..What kind of things should I be asking him?

That's a good place to start but you may also want, depending upon your cancer's location, size, Staging, etc wnat to consult with a RO (radiation oncologist) and an MO (chemo guy) and definately want them to consult together before any Tx plan is agreed upon.

I Googled CCC's in Louisville and came up with the James Brown Cancer Center. It looks like they have everyone under one roof. Didn't dig deep enough to understand the total volume of patients. Just thought I would put that out there. Have a great Thanksgiving.

James Graham Brown Cancer Center at UofL.

A good CCC option to consider

They have a significant H&N cancer program and dedicated team with a case load of over 200 new patients a year.

Two cancer researchers from the team that developed the Gardsil HPV cancer vaccine are now at Brown and continuing their HPV cancer research there.

Thanks so much for the info! I will have to look into it! Why would my dr want to send me to Cincy if there is a cancer center here?

While it may seem an unnecessary hassle, I would go to Cincy as well. What kind of insurance do you have? I had Blue Cross PPO so was able to choose my own doctors.

In my case, I had all of the tests done at Stanford and then hand delivered copies of all of the tests to UCSF. In addition, I got an appointment with a surgeon at UCSF and had my case reviewed by both tumor boards before deciding on a final course of treatment. It is worth noting that I did this in an expedited manner so as not to impact the start date for treatment. My Radiation Oncologist at Stanford told me that it is important to start radiation ASAP. I listened to her and as soon as I recovered from surgery I started. I was diagnosed 2/22/08. Had the primary tumor removed by a surgeon on 3/5/08 and started radiation 3/27/08. Interestingly, the two tumor boards recommended different courses of treatment (UCSF did not think it necessary to do the Cisplatin).I ended up having the treatment done at Stanford but was reassured by having my case reviewed by the two tumor boards.

Have a great Thanksgiving! You will get through this!

Shaylynn,

By expedited manner, I mean I was very persistent with the schedulers. I called and often times showed up to get in the calendar if they didn't call back. I was always nice and would sometimes bring cookies, flowers, etc. but it was very clear that I was going to get a slot in the calendars, whether it be for an appointment with the Radiation Oncologist, the Oncologist or the Surgeon or to get a time slot in one of the multiple tests that are necessary.

I also had someone help me. There may be people who want to help you. This is a specific job where someone who is persistent and will not take no for an answer might be able to help you. The need to be overly pushy will pass once you have decided on a facility, a course of treatment, and have started the treatment.

Others may have comments that might differ from mine. I can only share my experience. It was good for me to be able to focus on "the next thing to do."

Shaylynn,

Everyone is providing great advice. I too had you same scenario. Ulcer on the tongue - wouldn't go away dentist sent me to and oral surgeon........

You can and will make it through this. There will be some tough times, but it is nothing you can't do. Just set your mind on the prize of being cancer free!

I am just a little over a year out from treatment and for the most part am doing everything I did before. My mouth is still dry, but I just drink lots of water. I can eat most things, but still can't chew everything like I used to. But I can taste pretty well and the best thing is that I am here.

I will keep you in my thoughts and prayers.

Cindy