Hi,
My name is Mark and I am looking for help with info.
My sibling was diagnosed with tongue, tonsil, and neck squamous cell carcinoma which is matstatic on the neck and tonsil and may be in the local nodes. T2N1 stage 3. He is 42 and a smoker.
From my reading it appears there are quite a few with similar experiences. I am begining to realize there are mountains of info out there and am looking for a more condensed version.
He is on the east coast and scheduled for an appointment 7-25 at U of Rochester. I have no idea of the rep or choices he may have in this location as I am on the west coast. I will be trying to help from here.
I gather from the discussion, the first course of action, surgery vrs other, dictates the treatment thereafter. At this point I do not know the seriousness of this stage with any sophistication. Three of course cannot be good, but I would think that the metastatic determination may trump this for treatment path. It appears that the primary is the base of the tongue.
Would like to know what approach you with similar complaints might take and where?? if you were in NY.
Any other help with information is much appreciated.
Mark

Hello Mark, Welcome here. It will help you a great deal to read and search the forum. Of course questions are fine, but if you read some of the past threads you will get even more info. The most important thing for him to do is seek competant care. The best outcomes generally are when seen at a top-rated comprehensive cancer facility. It is not policy here to make absolute recommendations about specific hospitals but he has several outstanding facilities within reach. Memorial Sloan Kettering is rated number two in the nation, Johns Hopkins is number three and Dana-Farber is number four. It would be in his interest to get to any of them.

Right now there seems to be a bit of a dispute as to radiation in combination with a couple of new chemo drugs VS surgery then radiation. He will need the advice of a tumor board and even then he may have to make a difficult decision.

I wish you and especially him well in the upcoming days. He will need the support you can give and indeed you will both experience the positive and the not so positive that comes with this event.

We'll be here for you.

Welcome Mark

I can't help with your questions but I wanted to wish you and your brother all the best as you begin your journey. He is fortunate to have your support.

Love from Helen

Mark, the information you can obtain from this Foundation is staggering. Hopefully you will have time to absorb enough to be a great support to him. One of the things that has helped me the most is "learning the lingo". Cancer treatment has a language of its own. It's great that you are there to help and support. Amy

Mark Welcome
I am glad you found this forum early.
Mark has given you the best advice for the stage of fight your sibling is in.
The absolute wisest thing to do at this point is make sure he does go to one of the top CCC`s.

Take Care
Marica

Hi Mark. Sorry you are here but glad you found us. I have vocal cord cancer and had surgery and then radiation which I am doing now. I believe it sometimes is different for types of cancer and what the medical team decides on.
Though I can't offer any help my prayers are with your brother, you and the family.

May God give you strength and hope,
Barbara~

thanks to all for taking the time to respond. Am spending the next few days reading, so any futher suggestions are appreciated.
I am having trouble deciphering the diagnosis if anyone can help. Dr. says T2 N1 stage 3, but calls the neck and area around the tumor as positive for metastatic squamous cell carcinoma??? Would this not be stage 4?? and the tumor is located at the base of tongue/ tonsil area and is 2.5-3 cm and friable?
Would the metastatic positive indicate a different treatment path?
Trying to find the bottom line to start researching toward the correct questions.
Thank you,
Mark

Mark,
I have stage IV SCC and about to begin treatment at the J P Wilmot cancer center otherwise known as the University of Rochester. As you will see from my posts and profile I live in Rochester I am also considering traveling if I have to. Feel free to contact me with any questions. I will answer from personal experience or ask the Doctors that I work with who are connected to the U of R.

Mark --

You have come to the right place -- and please have your brother sign on as well. The OCF web site is invaluable (and one of the best cancer web sites I have ever seen) and it will give him the knowledge base from which to make a decision.

Since he has base of tongue tumor like my husband, probably Sloan (NYC) and Hopkins (Baltimore) will recommend treating first with radiation and chemo, because of quality of life concerns from the rather drastic tongue surgery -- selective surgery would be done afterwards if tumor remains.

Wherever he goes for an initial consult, he should try to get a second opinion to help with his decision. We went to Sloan-Kettering (from Maryland) and felt it was well worth it. While they simply confirmed the initial diagnosis and presented very similar treatment options, it gave my husband and me the information we needed to start his treatment.

Good luck to both of you -- he will need your support in the coming months and it looks as if you are there to give it!

Gail

Mark, staging is not exact especially because we don't know yet how many nodes are involved. It seems that staging is somewhat of an art best left to the professionals. As far as treatment options go, stage three and four are fairly much going to be handled the same way. Radiation and chemo and then surgery, radiation and chemo alone, or surgery then radiation and chemo. The surgery first option probably results in more permanent side effects especially when the tongue is involved. Very good results are being reported with radiation combined with Erbitux, and this is pretty new stuff. Others have had very good results with radiation combined with other chemo agents that augment the effects of radiation alone. If he is seen by a ENT surgeon first chances are good he will hear "surgery first" That is why he needs to be sure that he is seen by people that are aware of the current trends and are very experienced with this kind of cancer. For now focus your energy on getting him to the level of expertise that will work best for him.

Another thing you could consider doing for him is in regard to finances and services for him. The treatment he will be receiving will result serious fatigue and probable lost time at work. He likely will qualify for SSDI, Gary here posted a link to the section in the SSDI rules for this specific cancer. Many people didn't qualify the first time they tried but armed with the correct information he should get 18 weeks minimum. Be sure his medical coverage is up-to-date and provisions are made to pay the premiums for the forseable future. Many loose their job over this and then are faced with paying COBRA rates for insurance. The complete treatment can run $100K to $200K (perhaps more) so loosing insurance is a bad deal. If necessary, start conversations with his creditors about extending time. If he has family of his own, preparing them emotionally and mentally for the upcoming battle would probably be of benefit. If you do what you can to lighten any load so that he can focus all his energy on beating this cancer he certainly would be better off.

Take care