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