To those Newly Diagnosed - Pay Attention
I have posted here before, but I am hoping that those newly diagnosed will learn from my experience. I have learned that I did not handle things well. Live and learn.
I found out a year ago that I had RCC. My tumor was small and my doctor assured me it was no big deal at all. Almost like it was not even a real cancer. Assured me that I didnt need an oncologist, I would need minimal follow up and my chance or recoccence was less than 2%.
I am an analyst - so I am pretty intellligent. Well, little did I know, this was way out of my league.
Lesson 1 - Research - And that does not necessarly mean google everything. It means things like this site. Survivors that have been there. Trusted sites like ACS. Do your homework.
I had my surgery a year ago today. It was a laproscopic surgery. My tumor was small. They told me it was cancer. I was dumb. I didnt ask anything. Find out everything you can. Healthy ways to eat, signs to look for, take it seriously. You dont get do overs.
Lesson 2. Ask questions. Ask what kind of cancer specifically. Ask how aggressive - ask Fuhrman rating. Where exactly is it?
I was very sick in the hospital. I vomited all day, every day for 5 days until there was nothing but bile coming out of me. I didnt ask why. I just was sick. They came on my discharge day and told me it was cancer. I said ok. He said it was small and would probably never come back.
Once home - I developed a fever - extremely rare for me. I never get fevers - I was worried- I knew this was not right. I called the dr and he said no worries- gave me antibiotics for week.
Lesson 3 - If you know it is not right - then it isn't.
Since my surgery I have been in hospital for 3 - yes 3 kidney infections. All infections have been Strep B. I believe they are all from surgery. My kidney has not stopped hurting since the surgery. I have had hemotomas in my left side. There has been issue after issue. My surgeon has blown me off. Despite what he advised me, I went to an oncologist. He pulled my pathology report. The first thing he said was - I am not positive they got it all. Well being the idiot that I am, I trusted the surgeon I went to and moved on with my life.
Lesson 4 - Keep your records. Get them right away and keep a file. I never got my pathology report. I never looked at it. Why? Because I was dumb.
Finally I came to my senses after my last kidney infection. I went to a new surgeon. I have been on antibiotics for 7 weeks now. It it not going away. I went and got my pathology report myself.
I have an aggresive cancer and I have positive margins. My tumor extended beyond my kidney, so the positive margins were exposed to my abdominal cavity. My chances of recoccurance are high. When the new surgeon saw the pathology report, the first thing he said was " you have positive margins, did you know that?" when I told him no, he was shocked that no one went over the report with me, that no one explained what was contained in that paper.
Lesson 5 - You need to trust your doctor, but first you have to trust yourself to take care of you. If you do not take charge of your healthcare and be your own advocate then no one else will.
I hope that this will help someone. I should have been more proactive with my own health. I just didnt know better.
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