I'm a 1 year survivor. I had a hemi-glossectomy in June, 2006 for SCC that was called stage 3 because of the size of the tumor. It appeared smaller and the surgeon called it stage 1 until he got in there and had to keep cutting to get clear margins.

Because of the size of the tumor, it was decided that I should get radiation. I was sent to University of Texas MD Anderson Cancer Center in Houston, TX for the radiation. I had 30 IMRT treatments.

With 4 left, my colon ruptured from adhesions caused by (they believe) pain meds. I wound up with an emergency colostomy. Though I was still in the hospital, post surgery, I finished my last 4 treatments. I was hospitalized for 2 weeks.

The worst of the radiation side effects, the ones that come after the last treatment, happened to me when I was still very weak from the gut surgery and I had a terrible time of it. If it were not for the awesome care of my wonderful husband, I'd not be at the computer right now.

The colostomy was reversed three months after the surgery. I had lost a huge amount of weight and, being a small person to begin with, I was very frail.

Never the less, 3 months after the reversal surgery, we went on a cruise to the Panama Canal and I haven't looked back since.

I have no evidence of disease. On Monday I will travel to Houston to see the docs there. If all goes well, I will not have to come back for an entire year, though my local ENT who did the surgery has me on a 3 month visit schedule now.

I did not have a neck dissection as there was no evidence of any involvement other than the tumor on my tongue. The radiation was a "precautionary" treatment in case a "microscopic cell was around"

Though the "cure" almost killed me, I'm doing quite well now. I've put back some of the weight I lost. I'm eating well and speaking remarkably well with just a slight lisp.

I was lucky to have been treated at MDA. They have a super oncological dentist there who made me a stent that I wore during radiation and it protected my salivary glands well enough that I never lost all saliva and now have enough that I am not bothered at all by dry mouth. I did lose 3 lower teeth which were deemed a "danger" prior to radiation.

I still can't tolerate anything cold or hot and even brush my teeth with warm water. Only the first bite of ice cream tastes good, the rest feels good. Having half a tongue prevents me from eating some foods like nuts, chips, dry breads and cake, but those are things I can live without. I am ever so grateful that the taste buds for chocolate and prime rib came back.

I hope to learn things here and to offer my experiences to help others. I've been posting to the H&N Cancer ACOR listserve for about a year.

Thanks for reading my rambling.

Congrats on the 1 year Janet. I celebrated my one year last week. Other than your ruptured colon, my situation is almost identical to yours although I did have the neck dissection as a precautionary measure. My life also is almost completely normal and I can't tell you how much it means to be able to taste again. Of all the side affects, losing my taste was the one I feared the least. Never knew how much I would miss my taste buds.

Thank you Janet, for posting a success story, in spite of all the horrible things you went through!
Well done to both you, and your husband, and thanks for sharing.

Brenda

Janet: As I've stated before, I LOVE to read these positive posts! They strengthen us and give us hope that we, too, will somehow make it!

Lois & Buzz in NC

Janet,

Congratulations and welcome to the OCF. Thank you for sharing your success story and I hope you continue to post here. Your positive attitude and experiences can help many who come here for advice and comfort.

I wish you continued good health and great check ups.

Jerry

Thanks all of you for your warm welcome.

This evening we visited a friend in the hospital. She had an emergency colostomy the day before Thanksgiving. We called and left a message that we did not want to intrude, but we were there if they needed us. Her husband called the next day and said she needed me. It seems that she didn't trust anyone to understand how she felt about the ostomy. She knew that I would shoot from the hip. I did and we cried in each other's arms.

I am so blessed that I have these opportunities to give back. So many people supported me, prayed for me and were there for me when I was so terribly sick that I just didn't want to wake up in the morning. By helping others with my understanding and perhaps some advice from one who has been there, I can repay all the blessings that were heaped upon me.

I think most of you can understand this.

Janet

The Kind of stories I like to hear, you sound like a remarkable person with a wonderful attitude and I am happy you joined this group to give others the support that they are looking for !


Shar