Hi, my name is Joy and I've been reading through these forums for quite some time now. I've been diagnosed with SCC, right lateral tongue, well differentiated, superficially invasive. Dysplasia is still present, surrounding the area of the biopsy. Excisional biopsy was done by an oral surgeon. Just saw my first ENT today and he tells me that I have 4 choices:

1)radiation
2)excise the affected part of my tongue, about 1/4 of it
3)excise the invasive component (the rest of the tumor and surrounding leukoplakia) with a laser
4)excise only the rest of the tumor, and keep an eye on the leukoplakia

I asked him about doing combinations of the above, such as 1 and 3, and he said that he felt that would be overkill, and I should be able to choose either radiation or surgery, and either one would take care of it. Radiation has a better chance of killing microscopic cancer cells, whereas with surgery you never really know if you got it all or if there are still some cells there waiting to spread. Of course, I guess you never really know until it has spread.

I have an appt with another ENT for a second opinion, but wondered if any of you have any comments to help guide me. My gut feeling is to have the radiation to be sure that I did everything I could, but after reading all your stories on this forum I hate like hell to have radiation if I don't really need it.

Any comments or opinions would be much appreciated.

Thanks,
Joy

Joy,
I don't want the heart surgeon to ask me if I want heart surgery...I am paying him to tell me what I should do. I would get myself to a top quality cancer hospital ASAP and let a tumor board of experts including a surgeon, oncologist and radiation oncologist decide what is best for you. How can they expect a newly diagnosed person to have the knowledge to make such a decision.

Danny G.

Joy
I had laser surgery in 01 and 03 for severe dysplasia with a lot of watchful waiting in-between.
Because the cells where poorly differentiated the Head and Neck surgeon, (after a meeting of all the relevant people) went for a partially glossectomy and a flap replacement to my tongue and tonsillar pillar. No-one mentioned radiation, but I had total faith that their experience and the fact that the whole team had discussed my case and their combined experience was working for me.
So I think as Danny says YOU should not be asked to make the treatment decision, YOU are not the Doc I feel you should at the very least go back for some more advice. Now I have learnt that the system in the USA is different from the UK. Is where you are being treated a comprehensive head and neck center, if not can you get a further referral for a second opinion?
Hope this helps.
Sunshine ..love and hugs
Helen

Hi Danny,

That's exactly how I felt when walking out of his office today. He seemed more worried about getting sued for recommending the wrong treatment than telling me what needed to be done. He even said "you have plenty of time to decide what you want to do--you won't die from this." I have a second opinion scheduled with another ENT Monday (although he is not with a CCC).

Helen,
The ENT I saw today is not at a CCC. He was recommended by an oncology nurse at the hospital where I used to work. I just found out, however, that my health insurance will pay for me to go to MD Anderson for a consult and treatment so I have been on the phone leaving messages for a lady named Bev in the head and neck cancer department to see when I can get an appointment. I've heard good things about them and they are the closest CCC to me (I'm in AZ).

Thanks to both of you for your replies.

Great decision Joy!

p.s Dump that ENT.
Marica

Joy,

I agree you would be better off getting to a major cancer center. This shouldn't feel like you're going into a restaurant and picking a treatment from a menu (with a waiter who can't tell you much about the choices)! You should have a team of cancer specialists who can do enough testing to tell you what treatment program has the best chance of working for you. I hope you can get to MDACC soon.

Cathy

Thanks for all your comments! I feel better now... and am definitely getting to MDACC as soon as possible.

Joy

MD Anderson is a great choice. You wil get the best and latest treament.

Thanks everyone. I have a tentative appt July 19th, providing all the medical records get there by tomorrow. Something else I thought of: if MDACC prescribes radiation, is it done there on the campus or is it possible to do at home? I am thinking about the cost for DH and me to stay in Houston. (of course we'll do that if necessary)

Joy

Joy,
The radiation at MDACC (where I was treated) is on campus. They have a social work department that can recommend inexpensive or subsidized housing nearby. Please contact them for help. Brian was treated in Houston as an out of towner so he knows more about that stuff than I do. There are several motels nearby that offer free shuttle to MDACC.

As great a cancer hospital as MD Anderson is, I do find that dealing with the head and neck section can be a bit frustrating. On Tuesday I had a CT scan, Xray and MRI in the new ambulatory center and not only are the new facilites beautiful, every employee I dealt with was wonderful. On Wednesday I had an appointment with my doctor to discuss the findings. First of all I had to wait ( as usual ) over an hour to see the doctor. Secondly, the results from the day before were not back yet, so why do they always schedule the Dr. appt. the same or next day? Worst of all I observed at least two different patients being told that they did not have an appointment that day...their appointments had been changed, but noone notified them. I thought that the front desk personnel at H&N could have been a little more helpful and sympathetic.

Having said all that, I got the all clear after 4 years and I am grateful for the place and to its doctors and other employees for saving my life. I do highly recommend MDACC but sometimes you need to be very patient and to be a squeaky wheel.

Best of luck,
Danny G.

Joy, im a patient at MDACC right now, and i can tell you that Dannny is right, you do have to be very patient, but i also know im very lucky to have these doctors here. if i can help you in anyway please let me know. do you have someone that will be coming with you? trust me, you have made the correct choice in coming here. good luck and let me know if i can help. linda

Joy,

I initially had similar SCC to yours in 2003 except mine was moderately differentiated. I went to a cancer hospital but the only option I was given was a patrial glossectomy. I wasn't smart enough at the time about cancer to ask more intelligent questions. I had a 25% removal in Nov 03 with no node involvement and had no problems with speech or eating afterwards. Got a clean bill of health on Dec 1, 2003. However I had no radiation offerred and right around Christmas 03, I had a recurrence that grew so quickly that I had to have a near total glossectomy in early Feb 04 with all the attendant speech and eating issues that are ongoing. Perhaps radiation would have prevented the recurrence. I'll never know but I want you to have the advantage of my experience. Radiation isn't fun but the loss of a tongue is far worse. Take it from me. Good luck

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Sorry I can't delete a inadvetant dual post.

Thanks, Danny, Linda, and Jim. Sounds like MDACC is somewhat typical of a large institution insofar as lack of communication. I'll keep that in mind, and my husband has no problem being a "squeaky wheel" even if I am not able. Linda, my husband will be coming with me, but I will definitely get in touch if I have more questions. Jim, I am so sorry about your experience, but I appreciate your sharing it and I agree, I sure don't want to take a chance on a total glossectomy.

Thanks,
Joy