Colleagues

Sorry for the confusion I am returning to work 25 days from now, 3 days a week and 2 from home. This means now I am 24 days out of RT, that will be 49 days or 7 weeks out of RT. I therefore going back to work 7 weeks after RT health permitting and ability to consume 2500 calories a day.

I have also started walking, a mile yesterday and rode my mountain bike today for 15 mins. I will gradually increase these, by say 100 metres a day just to give my tired body some great endorphins and strength.

Sorry for the confusion!

Hello, my name is Betsy and I am new to this site. The info here is fabulous as I am need of a great deal of it. I was diagnosed with SCC on the front rightside of my tongue, T1, in Sept 2002 and the tumor was excised with margins that were clear. I was told I did not require Radiation or chemo as it was "textbook" and the margins were clear. I was monitored every 3 months and last Sept. (2004) changes were noted visually and I had surgury to biopsy the area and again margins were taken. This biopsy showed only mild dysplasia and the Panendoscopy was normal also.

Then in May my Dr. noted changes again and did a biopsy on the office that showed severe dysplasia, followed in August by another showing cancer in situ. I was refered to The Head and Neck Oncology center in London, Ont. and I saw the Team yesterday.

The informed me that I had a mass in my neck (right) and that the cancer was more advanced then the biopsies have shown. Now they want me to have a Right Hemiglossectomy,right neck dissection, left radial forearm free flap reconstruction with a tracheostomy and a panendoscopy. I was floored as my surgeon in Windsor had told me that she thought I might need a laser of the area and that it was stage 0 or in situ.

It was a very surreal experience for both myself and my husband. Of corse my mind went blank when it came time to ask pertinent questions and they want to operate in two weeks followed by radiation. I feel like everything is spinning out of control and I still need a lot of questions answered.

I hope I can here from some of you guys that have shared in this very scary prospect it is important to speak to people who have faced the same decisions. In fact, I had a brother with the same cancer who was diagnosed in 1984-he fought bravely but died in 1990. He had multiple surgeries and RT and Chemo but the Cat came back. I think having watched him struggle has jaded my perspective on these surguries that they want to do on me and I am quite concerned about my quality of life after treatment. Can anyone help me? I am very afraid.

Thanks for listening, I look foward to any input.
Sincerly, Betsy

i am like yu betsy i had the tounge done with marginal and then they decided a week later to do a neck decection and found the one pinhead and now im watched every month and a pet scan to be done in a few months this is like im living month to month and with no treatment like yu wondr what my yrs ahead will be. also had a bro died like yurs he delt with it for yrs thanks for yur imput hugs rd

Welcome to the Oal Cancer Foundation Nigel,

Your posting was one of the most upbeat I have read in quite awhile. Keep up that great attitude and you will do fine. There may be some bumps in this rocky journey but someehow I feel
you will be able to handle all of them. Thanks for sharing the start of your journey and I hope you continue to keep us updated on how you are doing.
You are now part of one huge international cyber family. The bond is a strong one!!

Welcome Again, Danny Boy

Thanks Danny

I certainly feel part of the community and happy to contribute as I have a lot of time on my hands at the moment!

That will soon change. I am a keen camper and my motorhome and me will be off for a week very soon, nothing strenuous just driving to a site in the country parking up and chilling. I will be with my sister and her husband so safe hands, but lots of fresh air and a different enviornment for 6 days.

I then have my post treatment 1st check up, no tonsil, no lymph glands and a bloke who is determined to view life in a different way!

Keep attacking!

Betsy,

I had a simialr experienc with diagnosis. My current surgeion seemed to think he only had to talke out a small piece of bone and a couple of teeth followed by a skin graft(mny 7th) I wnet to another surgeion known for being more aggressinve but I had no idea what that meant. I found myself being told that I need a Modifed radical neck dissection, jaw resection and he is taking th floor of the mough since the scc is on both sides. Nothing has been said about radaition after but they are alwo talking trach and feeding tube for me. I was so upset with the diagnosis I too couoldm't come up with the questions I needed to ask. You had been through alot and the cancer keeps coming back. That too is my fear about the quality of life. Ihave been assured by othes that you will get through this after all what is the alternative? My fear too is that if I go through all of the pain that the cancer is going to come back. we have all been though so much I don't think I could take it if it came back. If you Dr. feels this is the best way to get rid of the cancer for good than I guess I would go for it. Ask someone who has been through this maybe a patient of the Dr. you saw and talk to them. You have to set in your mind when enough is enough. I wish you luck.I am still looking for another socotr for another objective opionion but htey want to do my surgery in a month. Best of luck.

Thank-you Ann,
Your message and those of many I have read thru here on the forum have helped a great deal in clarifying a path for me. I realize that I must fight this beast with all I have in order to live to see my kids grow up. I will call the Dr. who is going to operate and see if they can hook me up with another patient that has had the surgury I think that is a great idea. Lots I have read here has given me hope.

The good Lord doesen't give us more than we can handle so I guess I can handle this bump in the road! I was fortunate enough to speak with my brother's widow this weekendan she assured me that my brother had no regrets. In fact he wore his scars like a banner for Oral Cancer to get the people out there more aware of this type of cancer. So many people don't know how prevalent it is. Perhaps I can continue his mission in that department. If I can prevent one teenager from starting to smoke as I did at 13 it will be worth it. In fact I didn't get sick until 5 years after I quit.

I was very fortunate that I got to see the oncologist in London, Ontario just two days after my biopsy results in Windsor. The wait times for referals in Ont. are very long. My sister-in-law told me not to rule out divine intervention here!! And they want to operate in 2 weeks!

So I will have more questions for the surgry team when I go up for my pre-op assessment next week thanks to all the info on this forum and website. I will keep you all updated with my progess.

Thanks again for the support.
Betsy