How many of you had your IMRT before surgery and what was the reason? We were told (as the second opinion) that Don could get the IMRT first and that would "get" the tumer on his tongue and toncil and we would be avoiding the much more invasive radical disection and jaw split. We would only have to have a modified for the nodes. I was concerned about surgury after rad because I read how the flesh is harder to work with after radiation but the Dr. said not to worry, he "made no bones about that" he was confident that the IMRT would kill the tumors and he was going in for the nodes. (Not his words exactly but...) Now 2 1/2 months post rad/chemo Don went in for the modified neck disection only to come out 45 minutes later. Dr did a biopsy on his tongue and it's still positive Dr said that only happens 1 in 20. It's persistant. Now he has to endure the major surgery, possibly even some jaw loss... bone from leg. Forearm flap. 8 hour plus day Monday April 12th. Doc said if he "had a crystal ball" he would have done the surgery first. I don't know if they will take less because of the tumor shrinkage or have to take all the treated area (and then some) They were so confident now I don't feel that. We're scared... And now second quessing. Now Doc says no more IMRT after but I've read on the bourd that some of you have had more. They said they gave him the max (70 grays) but I've seen some of you post 72. I need to know where to go from here if they say after surgery "we've done everything" I'M NOT DONE!!! WE'RE NOT DONE!!! Were any of you positive after RAD before surgery? What did they tell you? Doc told me, and Don's mom and dad that out of five people at this point only 1 will live past 5 years!!! We weren't ready for that! It sounds like the doc lost his confidece even before the surgery! We won't give up. I passed along one of the quotes from the board that really boosted him. Either 100% you'll make it or 100% you won't. And we talked about this surgery and how scary it is but then somewhere I think I found wisdom and said to him imagine someone in a car accident... What that Dr might have to work with. This is a VERY precise surgury that he has had time to plan. Just where the wounds are, how they will heal... how to help us with therapy..and as a bonus he'll be coming off a Easter meal and he's all Don's on monday morning! I'm looking for insight and rattling on now just the venting helps me. I wish I could take my computer to the hospital. Don is a 51 year old mill worker and has never touched a computer ( I'm working on that) so I'll need to be his voice here. Thank you all for YOUR strength. Gods speed as we all heal. Prayers are needed and welcome if you respond to my postings!!!!!

Well, Girl, you just gotta decide you`re going to be one of the five. Frank fought to stay alive for over 5 yrs..........We were an example of everything you do wrong.......he had regular radiation first, we were to shocked and dumb to yell second opinion..........he ended up 2 yrs ago, literally having the whole lower part of his face removed.......mandible reconstructed from leg,so a limp came along with that.......tongue was reconstructed and he ended up with a permanent trach. first surgery was 14 hrs plus, followed by 4 more surgeries. We never gave up and we never gave in, I truly believe our mental outlook helped us.....hell, I didn`t care how he looked as long as I had him alive, and I know you`re feeling the same way.......and I really think loved ones should be sedated for the surgery.......I never thought those hours would end...........remember, you`re in lots of peoples prayers.......love and Hugs, Dee

I am not an authority but this is my experience.

I had surgery first to remove a 4 cm tumor from tongue with neck dissection for 25 lymph nodes (7 cancerous) with forearm flap reconstruction / thigh graft. Surgery was on 2/26. I was in the hospital 14 days ... and I started radiation / chemo a little over 2 weeks after I came home. I am 2 weeks into treatment now.

As it was explained in my case, the fact that I'm 39 years old ... was a non-smoker, non-drinker ... and the tumor was very fast growing ... the preference was to take a very agressive approach of removing as much of the tumor first and then pursuing radiation. The fear was that if the tumor were to grow beyond the mid-point of my tongue, reconstruction would not be possible ... plus, there could be more complications post-radiation. It was a joint decision made between the surgeon, the radiation oncologist and myself.

However, I got the impression that every patient's case should be evaluated independently ... and that there could be instances due to either location of the tumor or size of the tumor where it might have made sense to pursue radiation first and thereby be able to preserve more of the tongue.

I know it's little consolation ... but I would try not to second guess at this point ... although I KNOW how hard it is not too. It will only cloud your judgement going forward and you still need to be clear headed.

I wish you much luck on your upcoming surgery. I wish I could tell you it was a piece of cake. It's difficult ... but, one day at a time, you'll see progress. Keep your spirits up!

Gina

Thanks Dee, I've read alot about your Packer. I'm so sorry. And your right I don't care how he'll look. I just want this damn disease to go away! For all of us. He is sooo strong. And I try to be when we're together (Almost constantly)I don't want to miss one minute of him. How precious that time is now. But I feel like I'm going to explode! I want to kick the hell out of something...or EVERYTHING!I want to scream at the top of my lungs... He can't see me like this. How did you handle it and I'm sure you must still feel that way sometimes. I've always been "anti-head-meds" but I've never felt like this. I NEED to be funtional. He can never see me weak now. This board helps sooo much. It kind of has a satuation effect as well as keeping a perspective of someone else is worse off.

Thanks Gina, You brought up another question I want to ask the Dr. Is it still on only one side? Yeah, it's too late to jump ship before surgery now..I feel like we did that in November and might be regreting it. But I want to be as Pro-active as I can from surgery on. I'm getting that feeling I had right after his dx... I'm driving an ambulance and no one told me where the hospital is! But if it's there I'LL FIND IT! Full speed ahead!

I was anti head meds too, until 2yrs ago when frank and I both developed PTSD.......I`ve been on them since....been there, done that with feeling like you`re going to explode, and i still alot of anger issues, would still like to see some people`s heads explode and this is coming from a Buddhist who doesn`t even kill bugs....but anger really got me through some rough times, it`s a great motivator.........I never wanted Frank to see how scared I was, I figured he didn`t need to deal with that too,the best advice I can give on that, is to continue to share your fears, there are lots of us who have been where you are now.......so hang on the Board and we`ll stay with ya.....Hugs, Dee

Hey Jeepster,
My husband, Dan, had surgery first, modified neck dissections (where they only took few from each side) and graft from leg to tongue. We got the call about negative nodes and were told "no radiation" and jumped for joy. Never knew to question that and less then 4 months later he gets an agressive neck tumor, thus throwing us into radical neck dissection where they couldn't get all the tumor to 8 weeks chemo/rad. Isn't hindsight something? While we were jumping for joy about no rad...that was exactly what he needed! So, don't beat yourself up...trust me it sure doesn't help. We will have testing on the 14th to see how the treatment worked on his cancer. Meanwhile, I have been on Xanax and Ambien for a few months. I never took anti-depressants before, but it has really helped me...that and belief that God holds our lives in His hands, crys and suffers with us. Hope you have a great support system...it has helped me tremendously as the caregiver and you guys are in my prayers!
Debbie

Thanks Debbie,
Hindsight, crystal balls...I am powerless. But I have my faith even though I get mad at Him sometimes, and I have found you guys. I believe He had something to do with that too. Anyone explain why we can't have more radiation? Seems to me it would clean up any strays, just like they explained if they had done surgery first. I'm looking into IMPT now...I found that info on this board...no Dr ever mentioned it. We started out with anywhere any price as long as it's the best. Thank God for good insurance. We started in Marshfield, went to Madison then to Mayo... came back to Madison.(All before any treatment)I mean once we picked we stuck to it...so far.

I can only speak to the radiation issue. They typically give a person their "lifetime maximum radiation exposure" in the area being treated. Even the skin is in greater risk of skin cancer as a result (after receiving radiation therapy one must avoid sun exposure and use sun block for the rest of their life).

They can re-treat certain areas under 2 conditions:
1. That the person hasn't received the full dose (some persons receive 50 cGy - if they received the full amount then they received the "boost" as well bringing the radiation to a total expeosure of 72 cGy). In other words, if you haven't received the full amount, they can come back later and give you the "boost". If they were treating a stage III of IV they likely gave the lifetime dose already;
2. In some cases they can re-treat if IMRT was used initially, but not in exactly the same spot.

IMPT is SO accurate that they give IMRT with it to have safe margins. Certainly worth investigating. I am not surprised the doctors didn't mention IMPT, although it has been in use for 10 years, only 2 facilities in the US have it. MD Anderson is spending 125 million to install one there. Whereas a LINAC is under a million.

There are many reasons why radiation has limitations. Among them is that it cause cancer and irreparable damage to the healthy tissues. When they determine the fractions (daily dose), consideration is taken to how much radiation the healthy tissues can absorb and their ability to heal between sessions. It's all about risk/benefit. When they exceed the maximum dose rate the risk exceeds the benefit.

And it's ok to be mad at God. If anything can cause a "crisis of belief", cancer has got to be at the top of the list. I am sure that God is ok with that too...

Thanks Gary, Can they give IMPT even AFTER IMRT????? It's a differant type of radiation and I understand almost NO side affects, so it would seem it wouldn't cause those longer term probs since it dumps it's load only on what NEEDS to die and doesn't lose any on it's way in. Simply put. I pray we won't need it.. just tring to stay a step ahead just in case. These things can't be set up over night. Karen