Hi, I am Betsy and I found your wonderful website on Sept.9/05. What a great source of hope, inspiration and information it is.

I had SCC of the right lateral tongue removed in 2003 with clear margines. Tumor was 2 mm. Stage 1. I was told that chemo or RT was not needed by my ENT. She has been following up every 3 months with visual app'ts and Ct and bloodwork yearly and 09/04 I was biopsied again with margins that showed mild dysplesia. then I had a bite biopsy in May /05 as changes were visually noted and it showed severe dysplesia but no cancer. Then in August I had a whitish plaque at the surgical area and another bite biopsy that showed cancer in situ.

My Ent refered me to London, Ont. to the Head and Neck Oncology Center at Victoria Hospital. I was lcky to get in on a cancellation in 2 days.
After seeing the team, I was quite shocked to find that I had a mass in my right side of my neck. The ENT or my family Dr. didn't notice it.

Needless to say I was floored. He also told me that he felt the cancer was further advanced then the biopsy had shown and I would need a right hemiglossectomy and a right neck dissection and a tracheotomy and a radial free flap reconstruction. I thought he was talking to someone else! Then he told me the op would take 10 hours and that it would be the easy part! That ast 6-8 week post-op I would begin Radiation and possibly chemo depending on what the lymph nodes showed.

I also lost a brother to SCC of the tongue 15 years ago and he fought it for 5.5 years. He was 32 at diagnosis and 38 when he died. I was 43 when first diagnosed and 46 now. After all I saw him through I didn't even want surgury. That was until I found your website. The words and information I have read here has changed my mind. That and a conversation I had with my brother's widow on Friday night has made me realize that I must fight this head on and hit it hard. They want to operate in 2 weeks!

Again thanks to all of you brave people for sharing your stories and support you may well have saved my life!!!!

I will keep u updated as I begin this new journey.
Betsy

Dear Betsy

Welcome to the site although I am sorry that you are facing more treatment which must be very difficult for you personally having lost your beloved brother to the same disease.

It is fortunate that you didn't have radiation first time around as it will be available to you now if required.

I also had major spread to my lymph which was treated with a radical neck dissection and RT. Now, 27 months out from end of treatment, I am cancer-free.

It takes special strength to push on after what your family has been through, you will receive all the support you want from people here who have travelled a similar path.

Sending positive thoughts for your treatment, love from Helen

Thanks Helen, it is wonderful to here positive stories of survival and best of all to know I am not alone in this! I know that I have to fight like I have never fought before and above all stay positive. I think now I can do that with help from all of you.
God Bless, Betsy

Welcome to the Oral Cancer Foundation Betsy!!

This diaease has been missed dx often. Many of us have been through what you will be going through and survived. You can to!!!

The road ahead is no picnic but with a good attitude and fighting spirit you can do fine. Please post any questions you may have, someone with similer treatment will respond. Also you can use the search engine at the top of the page to read some of the older postings. The more you know the better prepared you will be.

I wish you the best of luck, Danny Boy

Thanks for the words of encourgement Danny Boy! I have been doing plenty of reading here the last 3 days and it has been very informative. You guys have a terrific support system here. I am so glad I found it.
God Bless you all,
Betsy

Betsy
Hi, I'm 13months out from surgery, no radiation or chemo, but I'm doing fine, if I can help in anyway please ask.
Sunshine, love and hugs
Helen

Hi Betsy,
Not much else to add. Welcome to the site and ask all the questions you need to get you through this. We are here to support you. Read the resource sections on the site and use the search engine on the forum. They may help you formulate your questions. Take someone with you to your dr appts and even record them if you can. Digesting all this info in the short time is mind boggling.

Take care,
Eileen

Hi Betsy. So sorry to hear about your recurrence. :-( It sounds like you have a terrific attitude that will get you through this! I had almost exactly the same type of surgery on 5/23/05. If I can be of any help don't hesitate to write me or private message me and we can email each other.

It has been less than 4 months and I have been back to work since 7/6 and am eating and talking really well. Physically, I am almost 100% as far as strength and endurance.

Hang in there. We are all behind you.

Jennifer

Betsy,

I forgot to tell you, the tracheostomy is annoying but you'll be fine. They will probably give you a humidifying tube that you keep up by your trache hole to keep it from getting dried out and clogged up. Use it and keep it by the hole as much as possible. This will keep them from having to clear out the hole. Also, not sure if you are worried about it, but most people can't even see the scar from my trache anymore.

Hang in there. The surgery is no fun, but your attitude and strength will help you heal quickly.

Love,
Jennifer

Betsy, there are many advances in treatment since your brother had to fight his cancer. Try not to look back at his experience. Stay positive and look forward every day. Best wishes, Amy