[quote=Uptown][quote=ak123] Hi uptown- they removed the feeding tube because he can now eat on his own. He just did the big surgery on 8/11 wouldn't it be too soon to do radiation? I worried about it getting close to the lungs too. They did remove them. Does that make a difference? [/quote]

I wasn't sure for your post which node the doctor felt would be cancerous versus the 2 the doctor was surprised about after pathology. The other 2 would indicate to me they didn't show up on any scans. That would make me suspicious of others and I would think radiation would be necessary.

Once squamous cell carcinoma gets a good blood supply, i.e lungs, it takes off. That's why I would want the most effective treatment available, which is chemoradiation.

As far as how quick after surgery, it depends on how extensive the surgery was. [/quote]

Hi Uptown,
All three did not show up on the ct-scans. During the surgery the doctor suspected one (not sure which one) and that one came out postive. Then 2 more were positive. I think they might recommend chemo-radiation. He told us that when he suspected one (we should do radiation) but iif there is more he might need chemo-radiation. He wanted to talk to the whole tumor board team re: the pathology report. We are meeting with the doctor on Thursday. Which chemo do you recommend?

Unfortunately, I can't really recommend something like that. I'm not a doctor plus my treatment was so long ago, I hope it's outdated.

[quote=Uptown]Unfortunately, I can't really recommend something like that. I'm not a doctor plus my treatment was so long ago, I hope it's outdated. [/quote]

Lol
Well cisplatin is still around! One doctor
Recommended cisplatin and another Erbitux. Did you have any postive nodes?

I had Cisplatin and 5FU. I was hoping something more fun was available. By now.

Look at my signature. The T2N2bM0. That is called TNM staging.

T2 is a tumor greater than 2 cm but no more than 4 cm.

N2b means multiple ipsilateral nodes, none larger than 6 cm.

M0 means no distant metastases.

There is a place to see this spelled out on the main website. You cha search for "staging".

Hi everyone,
This morning we met with the whole tumor board from 10:00 a.m. to 5:00 p.m. (we are beat!)

Their opinion was 6 weeks, 5 days a week of IMRT (Tomotherapy machine) (60 to 63 gy)

He will get 3 big bags of Cisplatin every 21 days. He will begin treatment on September 15th-he will go in for radiation and then chemo and have to spend the night at the hospital to monitor him and for him to stay hydrated with the IV. Did anyone else stay in the hospital while getting chemo? At first I thought that he would come home after chemo.

So the chemo doctor told us if we didnt do radiation or chemo the cancer has a 50% chance of reoccurence. If we do the radiation he will have a 70% of no reoccurences and if he doest chemo and radiation combined he will have a 78% chance of no reoccurences. Now we are wondering is that 8% chance worth it? I know the side affects of chemo are kidney failure, hearing loss, nausea, etc) I am worried about the Extranodal extension which makes me think yes chemo is necessary! I also read all of your stories and see what fighters you are! I tell my little brother about you guys all the time! (My friends online, my friends online *PS I would love to meet all of you one day, you are the nicest people ever and have taught me so much. I thank you all).

He went to their dentist (they had one in their facility) and she did an xray and she said that teeth will not need to be pulled out. He is going back to her on Friday to get the flouride trays made (also, she said that he will still need to see his primary dentist before radiation just in case he needs cavities filled) did you all fill cavities before radiation?

Also, do you all think that the surgery was the harder part or the radiation/chemo? He is healing very well from the surgery.

How long did the board discuss your case? It could not have been 7 hours? Did you have to wait quite awhile? Just curious.

It seems like the board recommended both chemo and radiation. What do you know that would support not following the recommendation?

My entire team was all on the same page. Whenever there were a decision with options, we all shouted NUKE IT! DESTROY THE BASTARD!

I wanted the treatment that took every advantage to kill the beast. If nothing else, I knew I would never lose a wink of sleep or spend a single waking minute wondering if more could have been done. If it returns, I will never look back and wonder if....

Your brother is very young and that was factored into the board decision. They took all factors into account. There was surely more than a century of doctor experiences in the room. If you trust them, don't over think the treatment plan. That said, you can always get a second opinion by a different group. If that would help ease how to proceed do that but don't second guess the recommendations. Good luck don

Just a very small note to add to what Don has explained so very well - re your question about Chemo and he nausea associated with it - my son did not have chemo - only radiation (after surgery) and he really had a difficult time with the nausea but he did get through it, so if you are considering the chemo decision based only on the possible appearance of nausea, it is possible to have nausea when only radiation is involved. However - not everyone has a difficult time with nausea and some can sail right through treatment with very little nausea. I know you have found the very best doctors associated with a very good hospital, and their combined years of experience and knowledge should be very encouraging to you and your brother.

Best wishes to your brother. It sounds as if the medical team are going to do very well by him but it would've been a gruelling day with the Tumour Board for you all. The surgery he has had is a bit of a nightmare but the hard part is over in a week or two while radiation and chemo drag on for weeks. It's like a blitzkrieg versus a slow war of attrition.

There's a sort of camaraderie in radiation and oncology centres and staff will take good care of him. He'll need books and videos and games to enjoy while the treatment takes its course. Writing a diary or blog helps too.

Writing a diary or blog as Alpaca mentioned is a great idea for your brother or for you. I wish I had done it because it mades it easier to check back when you want to refer to some specific item of care, and there is a blog forum here where you can start one. The Rad Tx Center that my son went to was really nice and very friendly. They allowed my son and I to visit the room where he would be getting his Rad Tx and they allowed him to bring his own music on CD that they could play for him during the treatment. There was a "cookie lady" that came everyday with cookies for everyone and a "hug lady" that gave everyone hugs who needed a hug. Also a beautiful Collie Dog with her trainer who visited people in the waiting room. I was sitting there one day feeling a little sad and worried and the Collie was sitting a few feet away from me and only approached when I made eye contact with her and sat next to me while I petted her . . and it helped. It was in that waiting room that I met a nice young man about my son's age who approached me after my son left for his turn in the "Rad Room" and said "Go to the Oral Cancer Foundation dot org - they can help." And I did and they did! There are many smiles available in the Rad Room. I remember one day hearing about a lady who put rocks in her pockets so that when the nurse assistants weighed her she could cheat about her weight loss! At one of my son's treatments, he asked one of the nice assistants to take a picture which you can see here:
http://webpages.charter.net/xila/paulrad.jpg

[quote=donfoo]How long did the board discuss your case? It could not have been 7 hours? Did you have to wait quite awhile? Just curious.

It seems like the board recommended both chemo and radiation. What do you know that would support not following the recommendation?

My entire team was all on the same page. Whenever there were a decision with options, we all shouted NUKE IT! DESTROY THE BASTARD!

I wanted the treatment that took every advantage to kill the beast. If nothing else, I knew I would never lose a wink of sleep or spend a single waking minute wondering if more could have been done. If it returns, I will never look back and wonder if....

Your brother is very young and that was factored into the board decision. They took all factors into account. There was surely more than a century of doctor experiences in the room. If you trust them, don't over think the treatment plan. That said, you can always get a second opinion by a different group. If that would help ease how to proceed do that but don't second guess the recommendations. Good luck don[/quote]

Hi Don- Sorry, what I meant by that was we met with the tumor board for a .5 hour, then we had to meet with dentist, then radiation doctor and then chemo doctor. Thats why it took us all day long.

I dont know anything that would give me reason to not follow their recommendations because of course what they recommend is whats best. After researching everything I do see that IMRT and Cisplatin is the best care for him. However, I wonder if the extra 8% chance of non-recourrence is worth the chemo. I worry about the chemo side affects.

I totally agree with you that we want to definitely do everything for this to never come back so that way we dont have to question our choices. That is why we are going to do the radiation and the cisplatin chemo.

Thank you for the advice because it is so true that we do trust the doctors and they are all so amazing with so much experience. I am definitely overthinking the treatment plan because im just worried about all the side affects.
His oncologlist doctor is the chief of oncology and his radiation doctor is the chief of the radiology department. We also have him at a great NCCC. We did get a 2nd opinion at another NCCC before my brothers surgery and they also recommended IMRT and Cisplatin. We called the other NCCC after the tumor board meeting on Wednesday but they werent available for 2 weeks and we dont want to wait. He will be starting his radiation/chemo on September 15, 2014.