surviving in fear

I had a lymph tumor removed in my groin which was malignant. The primary source is still unknown. I have not went through chemo or radiation. I have been seeing a sarcoma research specialist at Moffitt Cancer Center in Tampa. I had the lymph removed and also had a complete historectomy. My hormone receptors are so high, I can not go on any hormone therapy. So I have been in limbo for a full year and left untreated. They have found things on my quarterly CT scans, pet scans sometimes are ordered, but still nothing. The wait for the unknown is very scary. Sometimes it leaves me spinning in circles with my life.

After CT scans left me in limbo for Christmas, I decided that worry and fear are counter productive. Your mental health is more important than the medicine. Life is and always was unpredictable. Let it go, moment by moment to a higher power. Were not in control anyway.

Easier said than done! I would like to keep in touch with more who are going through the same battle. Please keep in touch.

windwm said:

I had a lymph tumor removed in my groin which was malignant. The primary source is still unknown. I have not went through chemo or radiation. I have been seeing a sarcoma research specialist at Moffitt Cancer Center in Tampa. I had the lymph removed and also had a complete historectomy. My hormone receptors are so high, I can not go on any hormone therapy. So I have been in limbo for a full year and left untreated. They have found things on my quarterly CT scans, pet scans sometimes are ordered, but still nothing. The wait for the unknown is very scary. Sometimes it leaves me spinning in circles with my life.

After CT scans left me in limbo for Christmas, I decided that worry and fear are counter productive. Your mental health is more important than the medicine. Life is and always was unpredictable. Let it go, moment by moment to a higher power. Were not in control anyway.

Easier said than done! I would like to keep in touch with more who are going through the same battle. Please keep in touch.

Dear windwm,
I can surely sympathize with your condition. I have an unknown primary source also. I have fluid in my abdomen that contains cancer cells. When I was first diagnosed, I had retained so much fluid (I didn't know what it was at first) I looked like I was 8 mo. pregnant. The less I ate the bigger I got. They ended up taking 4-1/2 liters of fluid off me, 3 the second time. I have had 3 different chemo treatments that haven't worked. I was then put into a research program for new drugs. I have been in it since April 2005 and now it is not working either. I have been thur this for almost 2 years now and being challenged every day. My faith, husband, friends and family have helped tremendously in getting me thru this. I'm not sure how long I can "keep on keeping on". What does your CA125 tests say? Mine have been all over the place. When I was first diagnosed it was over 2000. After first chemo it went down to 10. I was in remission for about 6 mo. and haven't been able to shake it yet. The only thing that I could possible tell you is to live each day to the fullest. Do no worry about the little things in life and make each day count. That is what I do - and so far it has made the peace in my life a lot better. Say what you need to say to people you love, don't leave personal things undone. You will feel better for it and know it has been taken care of. God Bless you.