CancerCompass message board discussion started by Kathy S. on 8/14/2002 http://www.cancercompass.com/message-board/message/all,467,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello. We are waiting for test about my younger sister she is only 31. The doctors told us that she has rare cancer in her throat that only older people get. She goes Monday to find out the name. Meanwhile we all feel so helpless. She also is 15 weeks pregnant. She has to decide on Monday what to do with the baby. We have been to so many doctors. We finally found a good one. We all feel so lost! I am running out of steam and I don't want to break down in front of her! I am so tired of waiting. Please help!!!!!! Kathy S. Wed, 14 Aug 2002 00:00:00 GMT So sorry to hear about your sister. Waiting is one of the hardest parts of cancer. It is very frustrating. Things that I have found that help are: 1. Researching while waiting. 2. Staying as busy as possible. 3. Prayer Take care, Dan Dan C. Thu, 15 Aug 2002 00:00:00 GMT My son was diagnosed in June with a Pontine Glioma high grade in Lubbock TX and they said that they didn't have a treatment for this tumor and that my son had maybe 1 yr. to live. They sent us to Houston to Texas Children's Hospital where he did 6 weeks of radiation and participated in a study using a pill form of chemo that was being researched. He didn't do well on this drug so he was taken off. His MRI after radiation showed 34% shrinkage but his MRI 8 weeks later showed no more shrinkage but the good thing it hadn't grown anymore. They told us they didn't have another treatment plan and sent us home...to wait. Wait for what? Our baby to get worse and possibly die? My son is only 8 years old. I just couldn't except that. I spent every possible second on the internet doing research and found a Brain Tumor Center in Durham, NC that is treating another boy with the same tumor as my son. Needless to say we are headed to NC this weekend for a consultation with this doctor to talk about treatment options. He agreed with us that we shouldn't sit around and wait and do nothing. In my opinion, time is of the essence. There has to be other options for you. What I am saying is don't just take one doctor's word for it. SHOP AROUND!! If there aren't any other options at least you'll know you tried your hardest. I will keep you and your family in my prayers...I also believe in the power of prayer. NEVER GIVE UP!!! Misti H. Wed, 06 Nov 2002 00:00:00 GMT I am 48 and one of the youngest in our treatment center being treated. So I wanted you to know that I can relate to that.(lol) But what I really wanted to reply to was what you stated about not wanting to "break down" in front of your sister. My wife and I have found it so much easier to allow each other to cry or grieve whenever we feel the need and sometimes we even feel the need together. This crazy disease is not just about pain and treatment. It is also VERY MUCH about feelings and emotions and EVERYONE affected MUST be allowed to deal with it in whatever way they deem necessary. ...(safely)When I asked my youngest son(17), if he would go to chemo with me one morning, he said, "No". I said, "don't you care about my treatment?" He replied, "Of course I do, but I don't want it shoved in my face! What are you going to do next, put post-its up all over the house?" After I left the house I realized, that was just his way of dealing with it all. Then I later heard that he had broken down in front of his friends. We ALL MUST DEAL WITH IT AS NEEDED. Maybe you and your sister should start by discussing the emotions of it. It might just help. I Hope So. May the hand of God be upon you! Tony S. Wed, 06 Nov 2002 00:00:00 GMT I found out in May that I had (depending on which Doctor I speak with) either non-small cell or adenocarcinoma. So this has been rather confusing to me. The only treatment I took was 13 radiation treatments which made it easier for me to breathe. I am in the process of finding another oncologist which I have but I also have to wait to see her. Meanwhile I am getting my teeth fixed which also was a wait. I also have done some extensive research and am taking some minerals, vitamins, teas and what not that I feel have been helping. So far my breathing has improved. I do not feel the tumors have grown which the radiologist said they would and all in all I feel pretty god. Everyone tells me how great I look. I am tired and I do rest when I feel that way. There is a great deal of waiting when you feel like your time is limited. Use it the best you can by getting better. Stephanie Stephanie P. Thu, 07 Nov 2002 00:00:00 GMT hi, i am new to the board. i came upon your message and realized that so many of us are going through this right now. my dad is 63, he has throat cancer, diagnosed 16 months ago. he's done radiation, chemo and a fairly new procedure called cyberknife. i've learned a couple things along the way that i would like to share with you: ask questions! don't be afraid to speak up - write them down so you don't forget them. the information isn't always offered to you. research and read what you can... what's new? what are other people doing? be informed. take each day as it comes. you can leave one doctor with optimism and another with diminished hope... it changes everyday. we're waiting for my dad's cat and pet scan results. i know that no matter what happens i spoke up and did what i could do. maybe i couldn't make the cancer go away but i was informed and stayed involved. that also helps to keep you occupied, there is no use worrying over what hasn't happened yet. your in my thoughts... jeanne d jeanned Thu, 31 Jan 2008 00:00:00 GMT