Hello everyone.
I was on this website several times last winter following my SCC tongue cancer. I had 1/3 of my tongue and lymph nodes on the right side removed. As you all know, it was pretty rough, but I got through it very well I think. Tried to make a lot of changes for the better for myself in order to deal with the "bad stuff". Lost a lot of weight this year and feel so good about myself, and then,,,,, boom..... Another spot that has turned to cancer. This one is much smaller and the ENT feels like he got it all and clean margins 2 weeks ago with out patient surgery. I will see him this Fri to take out stitches and discuss my options. I feel like they will recommend radiation this time after recommending no radiation after the Christmas surgery. I am really drifting here, trying to decide if radiation is the right thing, or just keep "watching" it. How in the world are we ever sure what the right thing is? I just don't know how I can make that decision. I wonder about going to some cancer center but I don't feel that it would do any good unless they had a lot of experience with these SCC types of tongue cancer. Do any of you recommend a cancer center in the midwest for a second opinion? Just feel like I am drifting around not knowing what to do right now. Hope I feel better about making a decision on treatment after seeing the ENT Friday. Thanks for all your thoughts...

Big

I didn't have Rad ..And I will tell you There are days I wonder if it was the right decision and nights I dont sleep. I am only 8 months out so who knows, We never know what the future holds. There are people here who have had Rad and had reccurences and those without it with NO reccurence so I don't think there are any guarentess. I am sorry I couldn;t give you a better answer. BUT I understand the question ....Did I do everything ..am I doing enough ?? I wonder it everyday .


Shar

If it were me, and if they consider this a "recurrence", I'd opt for the radiation. All I had was radiation and chemo, and like Sharlee, sometimes wonder if I should have had surgery as well. I had many sleepless nights and struggled with insomnia for years.

I think the only logical thing to do is to go to a CCC and have a tumor board make this decision with you. Right now you have one doctor, with one kind of training, recommending for you. I'd rather have a dozen from different disciplines together offer me a plan.

Just to add my two cents here, I was treated at a CCC and had only surgery. I go through the same thought processes as Sharlee and Gary and so many other members. Brian's point about dealing with only one doctor is a very valid one.

You should be getting a second or even a third opinion and hear the recommendations of specialists that treat head and neck cancers. Surgeons, radiation oncologists, etc. My surgeon would not operate without me having a radiation oncologist see me first.

Good luck.

Jerry

Thanks everyone,
Brian and Jerry both said to go to a CCC. Exactly what do you mean by a CCC. I have a friend who has had breast cancer and she totally believes that the MD Anderson cancer center in Houston is the best. I would like to find someone closer to Missouri if I could. My dr had a tumor board discuss my situtation back in January and they recommended to watch it closely. I have already had 2 PET scans and the last one in August showed nothing, but here I am in Oct. with a reoccurence and removed it already. Just scares me to think with the PET scans and watching it closely. (every other month lately.) I still have another cancer. Makes me wonder if you ever feel any confidence in PET scans and CT scans. He tells me that the tumor board will review my case this time also. I guess I will know after tomorrow. Thanks again for sharing your thoughts with me. Sounds like we are all in the same boat,,,, never sure if you are taking the right path or not... Just eats at yoy doesn't it?
Margie

comprehensive cancer center

There are also NCI designated CCC's

Brian,
Do you have any recommendations as to where to go? I'm sure you know what I mean when I say everyone has the answers for me but me.. All my friends and co-workers think they have all the answers and they are sure what they would do if it was them... The thing is, anyone who hasn't had this, just doesn't know, they just think they do. It is much harder to figure out when it is yourself. You have been cancer free for some time then? I think this forum is so much help for all of us, we certainly won't agree on everything, but it is so good to talk to people in similar situations isn't it? Thanks

It's a function of comfort levels, and economic considerations.

I did not choose my treatment center based on geography. On the main OCF site there is a link to additional resources. On that page there is a section on medical databases, and in that, a link that says best hospitals. This is an annually updated list of the best from 1-50 in the US. (There are hundreds more, but if you are not in the top 50, I don't think you can be consdiered one of the best... even being number 40 or 50 is stretching that definition in my mind.) When I thought I was going to die, I sought out who was number one.... it wasn't close, but when you think you are going to die, whats a few thousand miles for a chance to change your luck?

I might add to my earlier post that I went to a comprehensive cancer center and had a superb team. I am almost 5 years cancer free today and still see the original members of my team for regular followups.

Just for the record it was my head & neck surgeon who recommended against having surgery, that my mortality rate would actually be improved with RT/ct only. I also had a concurrence of the other team members.

Chiming in with Brian, a CCC is the only way to go with OC and I credit them with not only saving my life but also giving me a decent quality of life as well.

It is a fact that we have seen many die here because they sought out local treatment (mainly for personal "convenience") from well meaning but inexperienced (even "trusted") care providers. This is an insidius, aggressive disease and requires that every measure possible be taken to combat it. It grants very few pardons for Tx or Dx mistakes.

There are no guarantees in life however. My sister went to MD Anderson and still died from lung cancer (chain smoking right through the terminal phase of her illness). However that had nothing to do with the quality of care at MD Anderson.