effects of pelvic radiation

FRANTIC

Hello to all my semi-colon friends. As you all know me from writing in the past I have had colon cancer with radiation to the pelvis and chemo. I have been on no treatments since June 2004. I have developed this blood problem where my bone marrow in the pelvic area is not making red blood cells. The bone marrow in the sternum is making red blood cells. I went to Sloan Kettering in N.Y.city yesterday and needless to say was a waste of time. This has been an on-going problem for 8 months. Obviously if the bone marrow is not making red cells in the pelvic area it is radiation induced. The Dr. said if that is the case the damage is irreversible. It is called myelodysplasia. Has any one heard of that from pelvic radiation?? It is an incurable disease. The drug treatments for this disorder has not been approved yet by the FDA. Or the Dr. said it could be an immune system problem which he is going to do a blood test called haptoglobin. I told him I came to you in Nov.2004 why didn't you do the test then? I came all the way in here and got no answers. This blood test is test to see if the body is making anti-bodies to destroy the red cells. I told him I believe my oncoligist on LOng Island has already done these tests. I am beside myself right now. I have not gotten any answers.I see my oncoligist tomorrow and going to give him hell. I was sent to Sloan kettering to his buddy down there who still has no answers. I also need a tranfusion today. I asked the Dr. in the city what my count was yesterday and he said the HGB was 7.9. I said don't you think I need a transfusion? I said are you going to call my Dr. on Long Island? And he said no we will fax the labs. So when I left I got on the cell phone to call the Drs. office and set up my own appt. for the paper work to get transfused today. Amazing isn't it. Not only to deal with this colon cancer now to deal with this blood problem where there is no cure and was told it can turn into a leukemia. Now what?? I see the radiation oncoligist next week for a six month check up and he will tell me it is not from the radiation. Sorry to vent. Your friend Fran

johnom

Dear Fran,
I don't blame you for ranting.Why didn't they say something to you last fall? why do you practically have to draw the blood yourself to get it tested?
I just talked to a very old friend who has a tumor on his optic nerve. He was at Mayo's a month ago and they tested him and sent him home with the diagnosis: 'There is something going on in your left eye.' He is a physician. They called him 2 weeks later to tell him it might be a tumor, he should have more tests done.
I told him many people would not have gotten the second call and just suffered until it was much worse. The lack of information is the most frightening thing of all.
I'm sure you will have something to say to the oncologist tomorrow. Let everyone know what happens next. I suspect you will get a better level of service when you detail what is happening in specific terms.

nanuk

It is unfortunate that there is such wide disparities in treatment quality. At least you get to talk to your doctor..all I ever get is an assistant. It seems sometimes the more pro-active and determined you are about your treatment, the more the doctor avoids you because they don't have the time.. I'm sure there are a lot of cancer patients who simply die from lack of information..