I'm new here - Oral Cancer Support - Survivor / Patient Forum

My husband has been diagnosed with a tongue SCC. T1 N2a M0. He bean in October with a swollen gland in his neck wich the GP said was due to having a cold it didn't go away and the GP said it goes down rapidly in children, but is slow in adults. After a few more weeks we made an ap[pointment, which took quite a while at the local cancer center at University of Miami in the Otolaryngology department. They did a needle biaopsy and it came back CSS. They did a scope surgery the day after Christmas to find the primary and we were lucky it is a small tumor at the back of the tongue. They said they used to remove them, but now spare the most they can and have equal success with radiation and chemo. Have spent a lot of time with PET,CAt etc scans and have a plan locally of 7 weeks of radiation five days a week and double on Friday of IMRT and a chemo cocktail once a wee4k for about 7 hours for the same 7 weeks of Taxotere, Cisplatir,Celuximab. They are using Amifostine to help preserve the salivary glands prior to radiation. I understand the Amifostine makes one very nauseous. I've read horror stories of getting your teeth pulled. They say no, but he needs a floride mouth tray to use daily. No concept of surgery at this point, possibly the nodes down the road after they shrink.
It certainly was a nasty holiday and the new year doesn't seem bright. I'm terrified for him. He is 56 in good health takes good care of himself, works out etc. He drinks socially and only in the past few years smoked one or two cigars a week.
I am so confussed on where to get the best treatment, wtih the highest success rate. We are getting a second opinion at Sloan Kettering, and a friend has a friend that was treated there several years ago and the head rediologist is now at Beth Israel. We are going there too. Here good about MDD Anderson, but don't know where to turn. All things considered it would be nice to be home with friends and support nearby, our own kitchen, and bed. We also don't want to postpone treatment to search, when maybe it is all asically the same. I'm just confused and over whelmed at this point. It was tough having things stand still over the holidays and it feels better making progress.
I'd appreciate any feed back.

Welcome and sorry that you are here, but this is the place to be for the best information about OC.

Your husband's diagnosis sound very similar to mine. The only difference is I had a neck dissection to remove the swollen node and several others before I started chemo/radiation treatments. All of the treatment centers you mentioned are very good. Getting a second opinion is definately the right course of action.

I live in Georgia and traveled to San Antonio Texas for my treatment. I'm active duty Air Force and we have a large hospital in San Antonio, Texas. This hospital is affiliated with MD Anderson, for cancer treatments, so my course of treatment was reviewed at MD Anderson. But you are right though, when I was going through treatment, my wife and I really missed being at home. I had no choice though, there was no IMRT offered near home for me.

Several folks around here have been treated at Moffit in Tampa and they say that is a good facilty too. I'm sure you'll get more replies here very soon.

Your GP certainly did you no favors...While many might suggest that the comforst of being around famiiar surroundings and friends might be helpful, I for one woud never let geography dictate where I when for treatment. This is a disease that can get out of hand very quickly if not dealt with properly. Given that, I want to go to the best hospital that I can afford to get myself to. I traveled across country to spend 3 months at MD Anderson in Houston. 8 years later, I certainly do not regret that decision. In essence I think you get one chance to make a good decision.

DSC,

My Dx was identical to your husbands except I did not smoke. I was treated at Moffitt Cancer Institute, a CCC which is located in Tampa. Dr Trotti, my RO, is one of the country's leading authorities on IMRT.

P.S. My GP thought my swollen nodes were Cat Scratch Fever and I went through 3 weeks of drugs before my wife made me go to an ENT that did a needle biospy. My ENT says my wife saved my life....I am holding him to that!!

DCS,

My situation was identical to your husbands. I was 57 but did not smoke at all. I cannot comment on Florida cancer centers because of lack of knowledge. His prescribed treatment plan is identical to mine.

Make sure he takes his anti nausea meds regularly rather than when needed. I had little trouble with nausea because I took them a couple of time a day for prevention and also when I felt the need.

The dental trays will help prevent tooth problems.

If you have specific questions, you can email me or I will give you my phone number to talk. He is in for a rough road, but fully doable. And we are here for support. I only wish I had found this site prior to my treatment.

Steve

DCS
We live in rural upstate New York where it is 50 miles one way to get to the small regional cancer treatment hospital. We went for a 2nd opinion at Memeorial Sloan Kettering Hospital. Thier opinion was exactly the same as our local Tumor Board Team of doctors.During complications after treatment we were able to go back and forth between the 2 hospitals and get the luxury of cutting edge knowledge and local care.
My husbands diagnosis followed a smilar pattern of missed diagnosis but once he was diagnosed treatment options and appointments came at the speed of light.
Always get a 2nd opinion from the best- MMSKC and MD anderson are the best.
Don't let comfort levels, family or money keep you from the best treatment. All the concerns can be worked out.

Caregiver to Gil -SCC rt. tonsil,lymph node involvement Stage 3/4 T2N2M0 dx 11/05, finished treatment 3/06, no reoccurence

DCS,
I was diagnosed with tonsil cancer in April 05. I was given amifostine and I tolerated it very well. I never got nausea and had a shot every day of the 6 weeks of radiation except for 2 days when my blood pressure dropped too low.

Rainey

Right tonsil, stage 3/4, tonsils removed, radical neck dissection, 6 weeks IMRT, 3 chemo treatments cisplatin

Hi there, Your on the right track by being on this site. To get the knowledge you get here it would take a long time on your own. Sloan and MD Anderson are the 2 top rated CCC's in the country. This is my 1st hopefully helpful post since my treatment ended. I have strictly been taking in knowledge from this site for 6 months. I hope this helps.

I went to my family doctor in May 06 for a sinus infection. Took 2 rounds of antibiotics to get it. Noticed a lump in my neck. Insisted on Biopsy and bingo SSC unknown primary. PET/CT Scan revealed BOT T2/N2b/MO. Went to local doctors in Las Vegas (both trained at MD Anderson), did research on the absolute best places for cancer treatment and went to MD Anderson for 2nd opinion. Started induction Chemotherapy consisting of Cisplatin, Taxatere, Erbitux (3 Cycles)in Las Vegas with direction of Dr Kies at MD Anderson (he had worked with the Las Vegas Medical Oncologist). Had excellent response to the chemotherapy with minimal side effects or problems. Went to Houston, rented an apartment and got 6 weeks of IMRT Radiation. The radiation was brutal but from what I understand "The Workhorse" of this cancers treatment plan. Dr Kies assured me that MD Anderson had the best Radiation Team in the US. That's what I want to hear baby. The BEST of the BEST. I finished my last treatment on 11/28/06. Today 1/10/06 I got the results of my 1st Post Treatment CT Scan and physical exam. I have a CCRR (Complete Chemical and Radilogical Response). I am obviously very happy with the results. I am convinced that a CCC (Comprehensive Cancer Center) is the only way to go. Do you want to be treated somewhere that sees a few of these cases or somewhere that sees or has seen thousands of these cases. DUH! I am also convinced that when push comes to shove the experience level of the doctors is going to make the difference in your initial success. Get the best care you can get if you have to go to Egypt. They say you only get 1 good shot at this so throwing the kitchen sink at it is appropriate

Ok...hijack time. Good for you deano! Now that you are contributing from the "other side" of the journey, you will amazingly see your progress speed up. Share the love!

Congrats.

Ed

When I went to a head/neck cancer conference last spring all the doctors emphasized:

"A neck swelling or mass should be considered cancer unless proven otherwise!"

All said they were all hearing far too many stories of misdiagnoses, trivializing the problem etc. etc. by GPs -- it seems as if many people have the same experience as above.

My husband went to Johns Hopkins for treatment (#1 otolaryngology dept. in country) , second opinion at Sloan-Kettering (on treatment, not diagnosis) -- had 33x tomoTherapy radiation, 7x carboplatin, amifostine all the way through (ugh!). He also had a complete clinical response and is doing great 16 months out. No surgery other than tonsillectomy which was when his cancer was diagnosed. His cancer was human papilloma virus-16 (HPV) positive, which many tonsillar/base of tongue cancers are (esp. in non-smokers).

(He is now in a clinical trial for a new therapeutic (curative) HPV vaccine at Hopkins, maybe in years to come it will be the cutting edge treatment but still years away, even if the initial trials are successful).

Gail

Thank all of you for your replies. We spent the week traveling to get various opinions. By the time night came I was too exhausted to get on email. We really like all the Drs at MD. Dr Weber, Dr Rosenthal(raidaology) and are flying back on Monday to meet Dr Kei for chemo. At this poit they are planing a pre chemo therapy and then radiation with IMRT. Their approach is toatlly multi displinary with everyone having conferences and having him see all types of doctors and dentists. We are hoping that the chemo can be administered here in Miami with Dr Kei's supervision (any comments)? We feel most comfortable with the IMRT being done by an expert at MD and plan the 6 weeks in Houston. We went to their adjacent hotel the Rotary House and it seemed nice. Met several people that had rave reviews of the treatment, doctors, and the support of the entire staff. Anyone have any comments on housing in Houston, and chemo at home? Thank you all. I know I will be here a great deal.

Hi, DCS. Sounds like y'all are on the right track. I just wanted to let you know that while John's Surgeon [Oncologist] is 150 mi. away, we have been able to do chemo at a hospital only 50 miles away. If you ask your MDA team to research a chemo Doc in Miami, they should be happy to do it. There is alot to be said for being at home, in your own bed, when you don't feel well. Amy

D C S --

Just FYI, a friend who is being treated at MD Anderson for breast cancer is having her chemo done at a hospital near her home in the Midwest (using the prescribed drugs/dosages from Anderson). She will then return to Houston for further treatment. So it can be done, and she's getting along fine.

All the best,
Leslie