Hello to everyone. My name is Laura G. I am a 32 year old mother of 2 (ages 1 and 3)from southern Pennsylvania. I had been leading a normal, nonsmoking life. Over a year ago I developed recurrent, mildly painful ulcers in the same place on the side of my tongue. I thought they were viral. And cancer isn't painful, right? So after more than a year, I started seeing docs about them. About that time, one of the ulcers got bigger, uglier, firm and painful. I also lost a lot of weight (15#) without trying.
My local ENT assured me it was not cancer, but I had a biopsy on 10/13/15 of my rightlateral tongue which turned into a partial glossectomy when the frozen path return SCCA. My husband and I were shocked (and we are both physicians!) We were reassured by my local ENT that the cancer was "shallow" and that I would be fine. Nothing could have been farther from the truth! We decided to seek a cancer center and went to Hopkins where we met with both ENT oncology and Rad Onc. I had a PET which showed uptake at my tongue and on 1 or 2 lymph nodes, but because I was post-op, it could have been from the surgery. My CT scans were read as normal. We discussed the options of neck disection vs radiation and I decided I definitely wanted a neck disection - because I wated to know if there was any cancer in my neck.
Last week 11/7/05, I had a selective neck dissection and further removal of tongue tissue b/c I had several positive margins on my first tongue surgery. The surgery went fine. One of my lymph nodes in Level one was positive with a 3mm focus of tumor. My tongue was clear. This makes me a Stage III (T1N1M0), I think. I am recovering well from surgery. The narcs gave me a lot of nausea and I am continuing to lose weight, but it is improving somewhat. I highly recommend vicious lidocaine 4% if you can get it, for the recovering tongue (It really hurts!)I have been painting it on my tongue with a Q tip.
Our next big decision is whether or not to have radiation. I am still waiting for Tumor Board's recommendation. All of my reading seems to show that for my exact problem, radiation is "optional". No one would want to get it! So I wonder if there are things that make it more likely to be useful. Perhaps my young age..
I have been holding up OK so far, but the thought of radiation is scary. I think it will be way tougher than what I've been through so far. I am very small (100 #'s) so I have no more weight to lose, and I am sure I would need a PEG.
Thank you to anyone who takes the time to read my story. I have spent hours on this website and find it very comforting to know there are people who have been through this and who are going through it now. Reading stories and advice from REAL people seems more helpful to me sometimes than reading medical papers with numbers and statistics. Thank you so much for your time and I welcome any advice on radiation or any emails.
Very sincerely, Laura G

Laura,

I'm sorry you had to find yourself in this situation, but I know you'll get a great deal of support here. There are some parts of your story that sound familiar to me -- being told that "it couldn't possibly be cancer because it's painful", and being a nonsmoker in your 30's and therefore not considered to be at risk.

Even though my surgery showed clear margins and no sign of lymph node involvement, my H&N cancer team pushed strongly for radiation (I think in part because I was young and the tumor was poorly differentiated). You're right that no one would "want" to have radiation, but in hindsight I have to say I'm glad I had it (although at the time I thought I'd never say that!). I don't know whether your doctors will think it's advisable for you, but if they do, there are a lot of us here who will do what we can to try to help you get through it.

Please keep us posted as you go along, and feel free to bring up your questions or concerns here.

Cathy

Dear Laura, please consider that I am speaking to you as a caregiver to my husband [and also as a caregiver to my 19 mo. old and 14 yr. old grandchildren, whose Mom is on Active Duty in the Army] The fact that you are a physician And have 2 children relays to me that you are a very strong woman. You have a heavy duty decision to make. My husband[at age 63] had 30 IMRT txs- ending 7-8-05. He is fighting the results of rad, but he is also able to eat a variety of foods, work in moderation, help keep up with both kids, and cook everyone breakfast every am.He had a PEG also, and got it out as soon as he could get away with it[which was earlier that I thought it should be: by the way, I am 5" tall and weigh 105 and can empathise with your # situation:] This is more trivia than scientific info, but I want you to know that in our experience, radiaton can be survivable, and my hunch is that alot of people here will tell you to fight this fully armed.Hope you will continue to post and share with us your decisions, based on your medical education and your decision making process. Wishing you the best. Amy

Welcome Laura, It is a tough decision. Good god stay away from those medical papers! Radiation treatments are like climbing Everest you do it because it's there. Some of us went through pretty easy. Do what gives the best outcome.

Take care

hello Laura and welcome,

It is a tough decision, i also went to Hopkins and I remember that while i was waiting to see what the tumor board would recommend my surgeon asked me one question, "How aggresssive do you want to be"? He went on to say, "You are young and otherwise healthy i know you can take aggressive treatment if that's what you want to do? Well I thought about it for about 5 seconds, my decision was to be aggressive, I didn't want to think back later that i could have done more and i didn't. I don't know if i needed to be so aggressive, but i was comfortable with my decision, it was the best for me.

I had surgery, radiation and chemo it's been one year since everything ended and so far it hasn't come back. I love the doctors and nurses at Hopkins, they make you think you are the only one they are treating. You are in good hands, I wish you the best. Feel free to write me anytime.

Gina

Laura,
I just went through the hemiglossectomy and modified neck dissection, and faced the same post-op dilemma you are facing. I went through this site and other internet resources like a two year old through a bowl of cheerios, and because my margins were clear, opted not to radiate. If my margins had not been clear, or if I had perineural invasion, I would have radiated (I was a day away from getting my mask fitted when I made my final decision, as it is!)
My husband of 35 years put it in perspective for me, making my decision a lot easier..
"If it was me", he said, "what would you have me do?"
When I changed focus, it cleared my decision-making process enough that I could see through the wall of "facts" I had build around my disease.

May your decision be the best one for you,
Andrea

Hi Laura,

Yeah, I also remember the "can't be cancer because it's painful" reasoning about the lesion on my tongue that turned out to be cancer. As you can see from my "signature", I was stage II and had both radiation and chemo. I am fairly young (not as young as you) and in pretty good health otherwise and I was sure I could take it but I will say it's the hardest thing I ever did (including finishing and defending a dissertation!) and I am still in a long and wearing recovery (but I think I've had a slightly worse time recovering than most folks here).

It has really given me peace of mind, though, to know I did everything I could to fight this battle the first time. I don't spend a lot of energy worrying about a recurrence because I know I did everything I could. Like Gina, the ultimate question for me in making the decision about radiation was how would I feel if I *didn't* have aggressive treatment and the cancer came back. I know I'd feel I had sold my own life short because of fear of the radiation and I decided I didn't want to ever take the chance of feeling that way.

My ENT here strongly backed taking the aggressive approach--even when he at first disagreed with the rad oncologist hired by Roswell Park, who recommended that a "wait and watch" approach be used. The ENT's argument was very clear--that I was young and strong and I should do everything I could to try to beat this back for good so that I'd be cancer free not only at the 5 year "cure" mark but also 20 years from now. I ended up going to Dana Farber for a second opinion and based on what they saw as some risk factors of recurrence from the pathology of my tumor, they were much more firm in recommending radiation (and chemo, which I think is worth considering if you choose radiation since it boosts the effectiveness of the radiation by quite a bit). So I went with their recommendation.

It's a tough treatment, no question, but if you choose to have it you'll find plenty of support here from people who have been through it and all sorts of answers to questions you may have. Please do let us know what the tumor board recommends and what you end up deciding.

Nelie

Thanks so much to everyone for writing. It is very helpful. I am going to Hopkins tomorrow, so I may have a better idea of my treatment course after that. Thanks again to everyone for sharing. -LauraG

Laura, please let us know what's next for you. Take Care, Carol

After being a member of the site and hearing all the situations. My advise is get 2 options from top rated cancer centers. They see it all and can advise risks. Be aggressive to get this as early as you can. If it mestastesizes its a whole lot tougher and lower success odds. I did radiation to make sure I got it all and even thought I have had some side effects they are very subdued as time goes on and I am glad I did the radiation dispite the tough times it has and the minor side effects.

Hi Laura,

Welcome to the OCF aand good luck tomorrow.

I am one of the few members here that did not have radiation and/or chemo. The reason for this was that I was a Stage I with 30 clear nodes from my neck and no cells in my tongue resection. It appears that my biopsy got "it" all. After spending the last 7 plus months on this website, it appears to me that the vast majority of members have had either chemo or radiation or both.

I was lucky that I found my scc so early and thankful that I am a dentist and as a result acted so quickly. Believe me when I say that before all this happened, I didn't know much about oral cancer. What I have learned is that if I had any lymph node involvement or any cells in the disection, I would have gone for the "works" and used anything and everything that was available.

A second opinion, as suggested by John, may not be a bad idea. If you are interested, please email me and I can give you the name of my surgeon at Fox Chase in Phila. It's not that far from you.

My prayers are with you.

Jerry

Its true, a second opinion from another CCC is good advice. I ended up with two differing opinions (at first) from Roswell Park and Dana Farber. Some may see risk factors where others do not--it's worth getting as much information as you can.

Nelie

IMHO.
You only get one chance.
If you are a Stage III, blast that sucker with everything you can!
In any event we wish you the best Laura.
Take Care
Marica

Laura, I went in with the opinion that I wanted to do everything possible only ONCE. I had surgery (different area) IMRT rad and chemo too. That was more than three years ago. I can spit with the best of them and am in no way compromised in any part of my life. This is such a sneaky, nasty cancer that I stronly advise that you condsider hitting it hard. Rad is not always a nightmare. I did not have a terrible time. Yes, I was burned, but you know about good drugs, and I was never flat on my back. I also recovered very quickly. If rad is recommended, do not be fearful. You can do it!

I had my appointment at Hopkins today. I had a fluid collection drained from neck. The tumor board recommended radiation given the aggressive nature of the tumor, and my age. I am fine with this, and happy to have a plan. I feel up to fighting this with everything I can. Thanks for all the advice and encouragement that IMRT is something I can get through.
Besides fattening up over Thanksgiving, any advice before starting? I know I will need a PEG, and that's OK. I think it will take the pressure off me to have to eat when I don't feel up to it.
Thanks so much - Laura G

Laura, Best wishes with your treatment. You have come this far, you will get through the rest of it! And the good folks on this board will be with you the whole way. Keep us posted!

Andrea

Laura,

Yes, good to have a plan and have the wondering over with. Will you be having the concurrent chemo too? With or without it, this is definitely something you can get through and having a PEG will help, especially since you don't have much extra weight to lose. Definitely you should try to see how many pounds you can put on before it starts (and, especially if you don't have chemo making you queasy, the first couple of weeks of rad you should be able to eat pretty normally too). Buy your favorite fattening foods and eat, eat eat.

There are other things you may want as the phlegm thickens but nothing that you can't get later in the proecss. We'll be here to offer support!

Nelie

Laura,

I'm glad you have a plan underway for treatment. You're right about trying to put on a bit of weight now (and for as long as you can even after radiation starts). You didn't mention how much of your "normal" schedule you're trying to maintain -- if you're a physician with two small children I'm sure you tend to be extremely busy. I'd suggest having a contingency plan in place for the time when the fatigue, pain, phlegm and other effects start to kick in and make it difficult to keep up with your routine. If you have family and/or friends that can be available to help with errands, don't hesitate to call on them when the time comes.

I hope you are one of the fortunate ones who gets through radiation with minimal side effects. Keep up that fighting spirit!

Cathy

Hi Laura,
Glad to hear that Hopkins has come up with a plan. I would suggest that you ask your doctors whether there is any benefit to chemoradiotherapy vs radiotherapy alone. If you do a search of the news section of the OCF site for 'chemoradiotherapy', you will find a number of articles related to Phase III clinical trials that seem to show improved results with a combination of the two modalities. See
http://www.oralcancerfoundation.org/news/story.asp?newsId=430
for example.

I'd encourage you to gain some weight before the treatments start. Based on advice from members of this board, I gained 15 lbs. before losing 40 during treatment. You should meet with an oncological nutritionist to get advice on how many calories you will require each day and which formula would best suit your needs. I found that because I was taking so many painkillers, that I needed a formula with a lot of fiber built in. You may want to supplement with benefiber or some other water-soluble fiber that you can put down the PEG.

I would also suggest that you have the PEG installed before the treatments start. I tried to do without one and ended up getting fluids via IV because I was so dehydrated and couldn't swallow. Getting the PEG in that state was particularly unpleasant. In retrospect, I wish I had it right from the beginning.

One last suggestion, make sure you see your dentist before the treatments start. Radiation is tough on the teeth and preventive dental work might save problems down the road.

Best of luck with your treatments. - Sheldon

Hello Laura,

I had IMRT and had no side effects from it at all. Sometimes I wondered if the machine was on!!! I also have a peg tube (second one) It is no big deal. It sure helps me gain weight as I have swallowing issues. You can beat this just as many of us have.

All my Best, Danny Boy

Gain as much weight as possible now, you won't have a problem losing it through treatment, I promise! Keep that good, go for it attitude, you'll only have that to draw from at times through radiation. Do find out about chemo at the same time. The "medical papers have shown a little better results long term with both, concurrently. Because of my young age & good health at time of dx, tumor board said hit me hard & with everything available for the highest possibilties. I have 3 children & wonderful wife: a lot to live for & so do you! You can do this! Keep yer chin up! I am cancer free today & healthy as a horse! My life has changed in many ways, but mostly for the positive. Erik

Hello Laura, Sorry to have you among us. There are so many tough decisions to make prior to tx. There is more than one 'camp' about tx regimes. I chose to follow a very aggressive plan of chemo and radiation and NO surgery. My primary tumor was in the base of my tongue, and too large to remove without sacrificing most of my tongue. I had mets to left neck and scored a T4 before we began. University of Chicago was having good results with advanced head/neck cancers without surgery. Very aggressive chemo and concurrent radiation. My tx plan called for (seemingly)gallons of Taxol + 2 other drugs daily for 10wks. I got a week off, then went in for daily chemo and 2xdaily radiation one early, one late. This scheme for 1 week, then no tx for a week, then same again - in total 12 weeks of tx 6 on and 6 off. All that finished 11/03 and I am doing very well. But post tx damage remains.

I have very little swallow ability, though my speech is fine. Some dry mouth. I am consigned to live by a peg tube. Its kind of a boring way to eat, but I don't have to watch my figure!! When the rad burns healed I had marvelous new skin on the outside of face and throat, but lots of scar tissue and surface irregularity inside.

Gain weight now and hang onto it. Figure out a way to get twice your normal water intake into your system. I even did IV fluids at home during tx. Use the mouth wash from your rad onc. And often. Keep some narcotics that will go through your peg handy for the bad days. I think over coming the trials of tx is all about character - specifically angry character. I converted my fear and pain into additional determination. Besides, when my hair did grow back, the gray was gone! I can dominate conversations at the dinner table because I can't eat! Silver linings.... You can do this. My thoughts and prayers are with you. Tom J

Laura,

We faced a similar situation with SCC of oral tongue and T2N1M0. The tumor board consisting of 4 doctors at the hospital were the surgery was done left the choice to do radiation up to us. There was extracapsular spread on the positive node but only focally.

Subsequently we got second opinions from a cancer treatment center. The ENT and radiation oncologist recommended doing radiation (35 treatments, 70 rads) and the medical oncologist recommended doing 6 rounds of chemo with cisplatin. We decided on doing both the rads and chemo.

The radiation side effects have been hell and my family member has still not fully recovered. The treatment ended in mid July 2005.

We opted for both the radiation and chemo

Laura,

I too was relatively young when my ordeal started.I chose the rad route (IMRT).
Please read my signature below, it tells all.

Johns Hopkins is right up there with the best. Great choice. That really means a lot. Knowing that you made the decision to go to the best is something that you can feel confident about going forward and looking back.

My mindset at the time was like this.

I wanted to get rid of this rather than dance around it and wonder if I made the right decision. I felt that the best chance I had as a younger patient was to take the full course of treatment. So far I am proud to say that it worked for me.

I was just at the University Of Chicago today and met with my ENT. Nothing there. We are now going on a 6 month schedule. So the next time I go is the end of May. Wow, it really goes fast.

The only side effects from the rad is I get some pretty serious spasms in my neck. And I have a dry mouth during the day when I am most active. Other than that nothing. You have to make your choice and I wish you luck and am here to support you. I just thought I would chime in since I was relitivly young at diagnosis.

Good things, Peace, Love, and god bless
Robert, Christine, Alison, Robby, Tommy, Billy, And Scotty Hamilton

Laura,

I also live in southern Pa. I was diagnosed with tongue cancer in September of last year. I had the whole nine-yards. Surgery, and Chemo and radiation at the same time. I will be honest, the radiation was the absolute worst part for me. My physicians and my family and I decided to go the most agressive treatment route. I decided on it because of my age (40). If I had to do it over again, I would still go through with it. I think the benefits of radiation far outweigh the discomfort that I endured. The people at the treatment center and my family were with me every step of the way. I had a mask that I had to wear for my treatments. It has markings on it of where the radiation was directed on my face and neck. On the day of my last treatment, I PROUDLY walked out with my mask. I have it mounted on a wall in my office at work. I think of it as a big badge of honor. Good luck to you and best wishes for a full recovery.