Hi everyone, so glad I've found this site! I'm a 22 year old female in Australia and was diagnosed with SCC of the left lateral side of my tongue in september, after ignoring (....!) an ulcer on my tongue for about 6 months. Initially I thought it was just aggravation from a tooth, but I had a biopsy to remove the ulcer, which came back as squamous cell. Within a week I was in Brisbane (nearest capital city to where I live) and had a CT, OPG, chest xray and MRI which found that the cancer had spread to my lymph nodes. I had a tongue reconstruction and neck ressection which removed 5 levels of nodes. Results from the surgery confirmed the MRI scans that showed that the cancer hadn't spread to nerves (phew!) and essentially meant that I wouldn't be having radiation. (that was a good day in hospital ) I was only in hospital for a week and was very lucky to have one of the best plastic and reconstructive surgeons around- she specialises in tongue reconstructions!

3 months on I'm having monthly checkups as the doctors are unsure whether to give me radiation because of side effects and my age, but I'm keeping my fingers crossed. I'm almost at my normal speaking ability, but have lost feeling and taste on the left side of the tongue, and I've lost a fair bit of strength and sensation in my left shoulder and I'm still having nerve pain, but physio (and some very good painkillers!) are helping a lot.

I've heard conflicting reports of whether tongue cancer is rare/unheard of/common/unusual in young people, and I'm doing a lot of research to find out more. I'm completing my journalism degree and I'm keen to do an article on it, particularly from an awareness/prevention point of view, as I am a non-smoker but social drinker, and would never have thought that I'd have cancer at 22. If there's others who have been in my situation I would love to hear from you
This site is fantastic, I'll definately be a regular.
All the best to everyone,
Lozz

Lozz,

You appear to be doing so well, so well done. I can write on behalf of my sister and as a caregiver. She was in a similar position to you, had an ulcer which kept coming and going after treatments from her dentist. Finally in June 04 they did a biopsy which came back as negative, but in Dec 04 the ulcer reappeared and another biopsy was requested in Jan 05 which came back as positive. She had surgery in Mar 05 with a free lap reconstruction but was asked to do radiation as they had found that there were 2 positive lymph nodes. Also the margins taken were less than they would have wanted to take in one spot in an attempt to preserve the second salivary gland - and therefore speech. She had just turned 50 in Jun 05, a non-smoker, non-drinker. I had never heard of tongue cancer before she was diagnosed so I assume that whilst it existed, it did not seem to appear in the media in the same way that breast, lung or other cancers do. However, having discovered this site, which has been of invaluable, I now know differently.

I am glad that you got some time to recover from your surgery should they suggest radiation later. In retrospect, my sister did her rad & chemo treatments about 3-4 weeks after surgery when she was still poorly and as these treatments are very aggressive, it can certainly add to what is already a difficult situation.

I really do hope that you get a lucky escape from further treatment and wish you the very best with your degree. Keep plugging at it.

Will add you to my prayers!

Emily

Hi Lozz

Welcome to the board. Although I am so sorry that you have had cancer at such an unusually young age, it is good to welcome another aussie here. I hope you will continue to contribute because I'm sure you will be able to offer support to other young people.

Glad that you have received such good treatment. You obviously have a positive attitude which I believe is a BIG plus with cancer. This is a wonderful site. People here have walked a similar path as you and will help with any questions or worries you have.

I recall a young woman - around your age - from Holland who posted here in the past looking to communicate with other young people who had had tongue cancer. The search engine here may be able to help.

Looking forward to hearing that you are doing well, love from Helen

Thank you both for replying so quickly, I can already see that this site will be a great source of support and information for me, I really wish I had found it earlier!
Emily, I am so sorry and shocked to hear about your sister- I have no idea what it feels like to be a caregiver for someone with cancer but from seeing my family and particularly my mum go through everything with me, I think sometimes it's the caregivers who can suffer the most emotionally. The focus is all on the patient and in some ways it's easier to deal with everything if it's happening to you, because you are so focussed on getting better(and don't have much choice in a lot of things!), while your loved ones can't do much else but be there for you. I hope this site and your work with other cancer patients helps you in your grief. You are right about oral cancer being somewhat of an unknown cancer in the media, I had never heard of tongue cancer and from my research it seems like it is on the increase. My hope is to get my and other stories out there so people are more aware of it. (although trying to convince my friends to stop smoking has been amazingly difficult...)
Helen, thank you for replying- ggreat to hear from a fellow aussie! I will be on the lookout for more young people on here, thanks for the tip.
Look forward to talking with you both more often, thanks for your support.
Lozz

Lozz, I am sorry that you have had this to deal with at such a young age.

I will take a contrary view of what your doctor is saying. You didn't say how many lymph nodes were positive but radiation is advised when lymph nodes are positive. I believe you should get a second opinion from the best cancer center or large hospital you can get to. At such a young age you want to be as aggressive as you can. I wouldn't casually advise radiation, it is a serious treatment. However, it can be quite effective.

A second opinion is worth the trouble, please get one soon. I am not familiar with help organizations in your area but here are a couple of sites you might be able to contact.

http://www.qldcancer.com.au/

http://www.cancer.org.au/default.cfm


Take care

Lozz
I was not your age, but your story sounds alot like mine. I was 46 when I got the ulcer on my tongue. It seemed to get a little better then come back, I was trying to eat one day and couldn't because it burned to bad. I got to the dentist that day. He sent me for a biopsy and I had sugery a week later. On the 1st vist back to the Dr., I found hard lymph nodes. I had to really agrue with the Dr. to get him to check the nodes. I'm glad I did, he went back in and removed 5, 3 were cancer. After that he said lets throw everything at this, we don't want any regrets. I had radiation and chemo. That was in 2001. Not to say you have to get radiation or chemo. every Dr. goes after the cancer a little different. I did get along Ok, and if it does return I know we did everything we could. Hope you get along good, and sorry you have to deal with it at all. My doctor told me I was very rare and he didn't ever see this unless they were old men that smoked or drank heavy for years. After coming here I have seen alot of people that were not old not men and not smokers and drinkers. I had a little talk with him about this, if that is the way oral cancer is seen someone really needs to get the message out there that it can happen to people like you! I'm from the south where most everyone asked me did you smoke or drink. Which at the time really made me mad. People here also think that if you make the choice to smoke then anything that happens to you is your own fault. Good Luck to you!

Lozz,

Welcome to the OCF.

I'm one of those statistical, almost old man (60), who at age 59, non-smoker and very minimal drinker, developed scc of the lateral border of the tongue. Unlike you, my lymph nodes were clear. No reconstruction of my tongue was needed.

I agree with Mark about a second opinion about additional treatment. The reason I only had surgery was the fact that my nodes were not cancerous. Both the surgeon and radiation oncologist felt that radiation and/or chemo were not indicated in my case. I'm sure that if the nodes were not clear, I would have had additional treatment.

Good luck and please let us know how you are doing.

Jerry