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My dad has RCC, I need information

Posts: 1
Joined: Feb 2007

Hello out there, I 28 yrs old and am new to this forum and new to the topic of cancer. My father was diagnosed with kidney cancer back in November and had a full nephroectomy (done laproscopically). At the time, they said it was the best possible situation...no spreading to any lymph nodes or anything. They said just follow up with the surgeon in 6 months. Now its 3 months later and based on some tests which came back abnormal(??) his doctor wants him to follow up with an oncologist and a nephrologist. Instead of a Stage 1 tumor, his doc said its Stage 1c which is similiar to Stage 3 tumor? Instead of a 15% chance of it spreading, now 50%. I wasnt with my dad when he went to his follow up visit and he doesnt always seem to get everything. Im in the process of trying to see if I can get him to let me go talk to his doctor because a lot of this doesnt make sense to me. Can anyone out there who has been through this help me a little? What are the usual tests after this procedure? What is the reality that in 3 yrs this will come back? I dont want to be dismal, but I also want to be realistic and be prepared for what we might be in for. Im scared.

lbinmsp's picture
Posts: 266
Joined: Jun 2006

First, I'm so sorry your dad now has 'the beast' as many of us who have had it refer to it. Followup for RCC should be every 3 months, initially, and then every 6 months, minimally for at least 5 years. Tests should include abdominal CT, complete blood work, chest x-rays and occasional chest CT as well. He should be seeing a good oncologist who has knowledge of RCC. Don't know where you live, but check your local medical society or university system if you've got one near you. RCC can and does recur even years after the initial diagnosis and it can and does recur even with an initial Stage 1 diagnosis. The only thing you can do is get regular followup to catch any recurrence early. Mine was diagnosed initially in 2001 as a Stage 1 - returned in 2006 to the right lung - sucessfully surgically removed. I am currently tumor free but am also back to 3 month followup again. God bless!

Posts: 2
Joined: Feb 2007

Hi, I am 20 years old and my dad was just diagnosed with RCC last week. He has not had any treatment yet and they are still doing tests. He see's his onocologist in a few days. He has a 10x11cm mass on his right kidney with nodes on it, a few nodes on his lung and slightly enlarged adrenal glands. The results from his bone scan and CT scan are not back yet. I don't know much about any tests or any thing but since we are in similar situations I was thinking you may want to talk. The best to you and your dad...

Posts: 1
Joined: Apr 2007

hey everyone, my dad was diagnosed about 3yrs ago. He had his right kidney removed after going through months of treatment of trying to save the diseased kidney. His surgery lasted 7hrs. Way,way longer than what it should have due to how inflamed the kidney was at this point. It then spread to lymph nodes which resulted in chemo tx, that he did not respond to and now is in his liver.He is only 56yrs.old I have been trying everything possible I could think of but his pain is not worth having him suffer. He is now at home on a pain pump and hospice comes in to meet any other needs, they truly are wonderful nurses. I am only 28 I just can't imagine life without him...I recently got a house and engaged and the thought of my father not being here sickens me. I work in the lab at the hospital so I tried to keep up with his care as long as i could get access to everything sometimes i could not or the doctors just blew me off. however, I will cherish every moment with him good luck to all of you! I feel as long as he is not in pain than I should not be selfish and know I will be with him again some day in a better life! We all will! God bless all of you!!!!

Posts: 2
Joined: Oct 2006

Bless your heart... You are WAY to young to be dealing with this. But keep up the hope. My husband was diagnosed with Stage III RCC in Mar of 2001. He was "clean" for 5 years... found it again in May 2006. He has been on an oral chemo and his cancer has not spread, and most of the existing tumors have shrunk up to 30% from the meds!! Unfortunately that med began causing too many other problems, so tomorrow he starts on a new IV chemo. But this is now over 6 years after diagnosis... just remember... people with recurring RCC just a few years ago were sent home to die, as there were no really effective treatments. NOT SO in 2007!!! They seem to come up with something better every few months. So just keep buying time... MAKE SURE YOU HAVE AN ONCOLOGIST WHO SPECIALIZES IN RCC... It is not quite like any other cancer!!! Who knows... 2007 may be the year they find the cure. I'm going to pray that your father walks you down the aisle, and watches his grandchildren get married too!! My thoughts and prayers are with you. Peggy

Posts: 2
Joined: Aug 2007

HI. I'm trying to find out some info on purchasing one of two drugs, Sutent or SORESENIB. I believe the latter is still in clinical trials. My uncle (in Cuba) was just diagnosed with liver cancer. It has metasticized to 3 vertabrae and his lungs. Our family in Cuba has asked us to get these drugs for him. I thought of purchasing through Canada, but Sutent is still out of my price range ($7k/28 cap). Any help or suggestions as to what I should do next or where to keep looking/searching? I think the saddest thing for me is to have never met him and the grief/stress my mother must be going through. I want to help her/him. Thanks! Mary

Posts: 1
Joined: Oct 2007

Hi - my mom has been diagnosed with RCC about a month ago. Fourteen years ago she had kidney cancer and it has now just come back. I recommend not paying attention to the stages because the more you read the more upset you may get. I also would advise to go to each and every appointment as well as get copies of every document/test/report. We are also in the process of getting a second opinion. Stay positive and pray.

Posts: 10
Joined: May 2006

Hi, my dad also has RCC Stage IV. He was diagnosed on Nov 2005 and has been doing ok with Sorafenib. They performed a nephroectomy of his right kidney and of one of his vertebrae (L3).They also found many nodules on his lungs, which have been shrinking with the medication. Unfortunately they found many tumors on his liver a week ago. He is not feeling good at all; high fevers,head aches,weakness,coughing, etc. Does anybody know if RCC in the liver is more agressive than in other organs? I am 27 years old and very scared of what might come now, pls help me! Thanks a lot.

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