Papillary Renal Cell Type II
I was diagnoised with Terminal Renal Cell Type II Cancer, As of June 13th of this year.
My journey down this road began:
June 29,2008 I woke up and went to the bathroom and as I turn to flush the toilet I got the worst shock of my life. There was nothing but blood. I knew immediately I was in trouble. We went to ER and my blood was down to 9. After several test I was told that I had a severe bladder infection. But, I had no previous signs. A leision was found in the bladder. It was removed on my 5th day in the hospital.It was negative for cancer.
In August I had a follow up MRI. And a week later I was called back for a second MRI with contrast. And again I knew I was in trouble. On Sept. 4th I got a call from the Urologist that was put on my case. He told me I had an 85/15% chance of having Renal cancer on the phone.
He wanted to take the right kidney out immediately. I said you will put it back if it isn't cancer and he said no that they wouldn't do that.
So I went to U ofM Hospital in Ann Arbor MI. It was biopsied on Oct. 19, 2008 and found to be Papillary Renal Cell Cancer. It was decided due to my health and age 65 that it would be safer to do Radio Frequency Ablation (RFA) This was done on November 19, 2008.
Had follow up CTs for about 2 years and every thing looked good. In fact I was told last year that if my CT was as good this year we would go to CTs every 2 years.
Well on May 20, 2011 I had the CT. And when I went to my surgeons office later that day I got the bad news that I had cancer again in the same kidney. But above the RFA Area. It was thought to be a different cancer since this one was bulbous compared to the first tumor. It was decided to remove the kidney and not take a chace of a third re-occurance. The surgery was done on June 09,2011. They took the Right Kidney, the Peri-Sinus Fat Bed (Where the kidney lies in), and 17 Lymph Nodes. Of the 17 nodes 7 were malignant. Making me stage 4 cancer and it was determined to be a very aggressive cancer and it turned out to be Papillary Renal Cell Type II cancer.
We were told that neither Radiation nor Chemo touches this cancer. That basically there is no cure. They can only cut out the cancer if possible. Not good news. I was sent to a Oncologist only to be told that he can do nothing for me. No trials nothing.
Then I found this site but didn't find anyone with my type of Cancer. There was papillary but not Type II. But the others all had oncologists. So I decided to call the Oncologist's office a couple of weeks ago to find out exactly why I was turned away. It was then I learned that the cancer was also in my right renal vein.
No one needed to explain to me what that meant. I knew then I was and am in deep trouble. Becaause this mens that micro -lymph nodes are cursing through my blood stream.
I asked my Primary Doctor what do I tell people as to my condition. And She told me that the term to say is I have Terminal Kidney Cancer. She asked me if I had any goals I wanted to meet and I said the most important one was our 50th Wedding Anniversary. She asked when that was and I said 2½ years. She didn't have to say a word. The look on her face said it all. She told me that I may need to decide on quality to quanity of my remaining time. Eat what you want and enjoy what you can. This is really hard to take. Since I don't feel sick. It is really hard to believe that I am terminal. I am hoping to make it past 03-14-2014. But, I want to have my mind. This is the scariest part. I have seen so many people say hurtful things to their loved ones. It is easy to say that they don't know what they are saying. But, the person who these things are said to have to live with those negative comments. And if it is a child. I have been there and it is really hard to forget nasty and cruel comments. Especially from someone who is suppose to love you.
Next Friday I go for a 4 month CT. I am so scared the cancer will be spread all over. The June sugeryy too over 6 hours. The odd thing that the doctor wrote in his last update to my Primary Doctor and me is that if the cancer is back they will treat it racically with surgery and CHEMO. The latter blew my mind. Why Chemo? Especially if it doesn't touch this cancer????
My prayers are out there for all those suffering from any type of cancer. I am sorry this is so long but it feels good to get it out. My husband has blinders on. I feel bad for him because it is going to be a rude awakening for him. My daughter and son and their families are very much aware as to the situation.
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