Who to believe...Who to trust...There are no magic bullets
I went to see the Dr Kaufman the oncologist at Walnut Creek Kaiser yesterday. He spent an hour explaining to me the type of cancer I have. He printed out some studies done and also the National Comprehensive Cancer Network clinical presentation on Mixed mullerian tumor. By the way, I do not have sarcoma (based on Dr Kaufman) as previously printed in my doctors notes. It is Carinosarcoma. Dr says it is much differnt than sarcoma. So all this researching and I was misdirected. He has a CT scan scheduled for weds night.
I cant grind over the time wasted, although there is frustration there.
There are not a lot of people who get this type of cancer. In one of the reports , they gathered info over 6 years with a TOTAL of 31 cases. This was not at one location. They organized the information thru a tumor registry. This is 31 people in the US over a 6 year period , it is not alot to study. I dont want to go into the details (too lengthy),some had surgery, some received chemo, some didnt make it to chemo, overall it has a poor prognosis. This I know, yet each time I hear it, it sets me back and makes my cry.
At this point I WANT the magic bullet-someone must have it.
Yet, I can only seek for myself, there is so much reading/researching/contacting people to do.
Do I listen to this Dr or that Dr or that health gruru? It makes my head spin.
I have learned, if I am not CRYSTAL CLEAR, I make no moves or commitments. That means I AM OFF CHEMO.
I am praying for Gods direction. Please pray along with me.
In the meantime I have found a docor who has a research and advocacy based practice. She does not give any treatments, but will help me to find, receive and refine treatments. She does not replace my physician, but act as a supplementary source. I am interested. I need a knowledgeable partner with a wide spectrim of contacts-doctors,nutrition,etc.
I have plenty of reading to do. I also must have the house clean and show ready each day...realestate agents have called to show the condo. It is difficult for me to get up and get moving in the morning. My left side/hip has kicked into painful action and I have a really hard time moving. I had an xray and it shows arthritis and degeneration-HOWEVER can not rule out cancer because of where it is located. I am scheduled for a bone scan ( to see if there is cancer).
I wish there was a hideway/retreat that I could go to , that would wash away all the breakdowns in my body.
For those of you who have called. I appreciate you caring and wanting to know. I just cant deal with the phone and repeating "the story"'
I have not forgot and dont you forget.
My name is Suzanne Robles and I am a cancer survivor.
I went to see the Dr Kaufman the oncologist at Walnut Creek Kaiser yesterday. He spent an hour explaining to me the type of cancer I have. He printed out some studies done and also the National Comprehensive Cancer Network clinical presentation on Mixed mullerian tumor. By the way, I do not have sarcoma (based on Dr Kaufman) as previously printed in my doctors notes. It is Carinosarcoma. Dr says it is much differnt than sarcoma. So all this researching and I was misdirected. He has a CT scan scheduled for weds night.
I cant grind over the time wasted, although there is frustration there.
There are not a lot of people who get this type of cancer. In one of the reports , they gathered info over 6 years with a TOTAL of 31 cases. This was not at one location. They organized the information thru a tumor registry. This is 31 people in the US over a 6 year period , it is not alot to study. I dont want to go into the details (too lengthy),some had surgery, some received chemo, some didnt make it to chemo, overall it has a poor prognosis. This I know, yet each time I hear it, it sets me back and makes my cry.
At this point I WANT the magic bullet-someone must have it.
Yet, I can only seek for myself, there is so much reading/researching/contacting people to do.
Do I listen to this Dr or that Dr or that health gruru? It makes my head spin.
I have learned, if I am not CRYSTAL CLEAR, I make no moves or commitments. That means I AM OFF CHEMO.
I am praying for Gods direction. Please pray along with me.
In the meantime I have found a docor who has a research and advocacy based practice. She does not give any treatments, but will help me to find, receive and refine treatments. She does not replace my physician, but act as a supplementary source. I am interested. I need a knowledgeable partner with a wide spectrim of contacts-doctors,nutrition,etc.
I have plenty of reading to do. I also must have the house clean and show ready each day...realestate agents have called to show the condo. It is difficult for me to get up and get moving in the morning. My left side/hip has kicked into painful action and I have a really hard time moving. I had an xray and it shows arthritis and degeneration-HOWEVER can not rule out cancer because of where it is located. I am scheduled for a bone scan ( to see if there is cancer).
I wish there was a hideway/retreat that I could go to , that would wash away all the breakdowns in my body.
For those of you who have called. I appreciate you caring and wanting to know. I just cant deal with the phone and repeating "the story"'
I have not forgot and dont you forget.
My name is Suzanne Robles and I am a cancer survivor.
posted by Suzanne at
10:11 AM
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