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.