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photogman
photogman Member Posts: 2
edited March 2014 in Kidney Cancer #1
Hello, I'm a 48 year old male who was diagnosed on 9/3/2003 with RCC. I had surgery at Mayo on 9/12/2003 for a partial nephrectomy of my right kidney. Stage 1, Grade 3, 2.9 cm tumor. I was given a 96% chance of being alive after 15 years from cancer specifically. My cancer was caught incidentally and caused no symptoms. Chairman of the urology dept. Dr. Michael Blute performed a partial nephrectomy on me on a friday. I was discharged on the following Monday, my birthday. He said I will probably die of something else before cancer would ever return and get me. They said they are following 4600+ RCC patients now. I'm still scared everyday I wake up. The giant incision on my left flank is a constant reminder. I don't care about the scar. I can live with that. The biggest thing is everything I hear and read about RCC is that people really don't talk about a cure with this cancer because there are so many cases where it comes back 15, 20, & even 25 years later. That's what scares the heck out of me. I'm doing everything I can to be healthy and become more healthy from diet to exercise. I rely most heavily on my faith in God. That's the first thing I did when I found out I had cancer, I prayed, prayed, prayed and prayed. I would enjoy hearing from some of you! Thanks

Comments

  • photogman
    photogman Member Posts: 2
    correction: meant scar on my right flank
  • JoBubba
    JoBubba Member Posts: 8
    My husband is 52 and diagnosed with stage IV in May 2003. Has large tumor on right hip that they did RF ablation and embolization on in June, left kidney out in July (thankfully lapo.), golfball tumor on right rib, and numerous tumors on lungs. Just had another embolization on hip tumor 2 weeks ago. A lot of pain and slow recovery. Did high-dose IL-2 in Sept. and Oct. Appears to be working but he is overdue a followup due to hip problem. He is a fighter and we are prayers!!! Keep the faith. Prayer works! There IS hope with this cancer and research is always happening and new discoveriss being made. The kidney cancer assoc. website has good info. as does Steve Dunns cancer page. There's a brandnew journal for docs called kidney cancer journal which you can access through the kidney cancer assoc. webpage. I would stay abreast of things, even though you are free and clear right now. Remember that fear is from the enemy....and worry can only decrease your health. (I am an experienced worrying, but God is always working on me!) I will check this post another time to see if you replied. Hope this was helpful. You are not alone. FYI, we have a friend who had a large tumor on kidney over 10 years ago that was contained. He is doing remarkable and no signs ever of more cancer. I think he is in his 60's...and even shovelled the snow for me last week. Remember to drink a lot of good fluids to keep that one kidney functioning properly. Load up before you fly so you don't get dehydrated.
  • RobS
    RobS Member Posts: 3
    I can understand where you are coming from. My cancer was accidentally found because I had a kidney stone. I am only 25. I had a nephrectomy on Feb.13th 2003. This friday is my anniversary. The Dr. also removed my right kidney. All of it. 22 staples marked my side. But like you, I can live with that. My advice to you is not to be scared. You'll stop living a good life. Live your live to the absolute fullest and you'll start living the minute you stop waiting to die. Best wishes
  • Us2004
    Us2004 Member Posts: 2
    RobS said:

    I can understand where you are coming from. My cancer was accidentally found because I had a kidney stone. I am only 25. I had a nephrectomy on Feb.13th 2003. This friday is my anniversary. The Dr. also removed my right kidney. All of it. 22 staples marked my side. But like you, I can live with that. My advice to you is not to be scared. You'll stop living a good life. Live your live to the absolute fullest and you'll start living the minute you stop waiting to die. Best wishes

    Hello:
    My husband, Bill is having a nephrectomy on Feb 13, 2004. His tumor is 5 cm and smack in the middle of his left kidney, so we have no choice but to have the left kidney totally removed. While I understand your fear, you should talk to your doctor about it. You said you have prayed about this, well, in order to Have God answer you, you have to pray, then let Him handle it. As long as you hang on to your fears, He can't help because you keep taking the problem back. Read the poem "Footprints", it explaind what I mean. Once you ask God to help you, you have to trust He will, but you must be still to hear your answer. Be good to yourself, take care of you and as r_r said, live your life. Barb
  • dlecb8
    dlecb8 Member Posts: 4
    Us2004 said:

    Hello:
    My husband, Bill is having a nephrectomy on Feb 13, 2004. His tumor is 5 cm and smack in the middle of his left kidney, so we have no choice but to have the left kidney totally removed. While I understand your fear, you should talk to your doctor about it. You said you have prayed about this, well, in order to Have God answer you, you have to pray, then let Him handle it. As long as you hang on to your fears, He can't help because you keep taking the problem back. Read the poem "Footprints", it explaind what I mean. Once you ask God to help you, you have to trust He will, but you must be still to hear your answer. Be good to yourself, take care of you and as r_r said, live your life. Barb

    Had my nephrectomy a week after 911. I spent four days in the hospital. I made it a point to avoid pain pills as much as possible. After two years, I have pressure on a daily basis. I have a CT-Scan every year. The last scan showed a very small nodule on my lung. My surgeon advised me to get another scan after three months so we can see if there is a change in size. Take care, Dave
  • margurite
    margurite Member Posts: 2
    HELLO ,I JUST JOINED THE GROUP AND READ YOUR MESSAGE.I AM SURE THE WAY YOU FEEL IS THE WAY MOST OF US DO .I HAD MY LEFT KIDNEY OUT IN OCT. AND AM FEELING GOOD BUT STILL I WORRY. I JUST TRY TO STAY STRONG.MAYBE AS TIME PASSES WE CAN BOTH CALM DOWN ALITTLE ALL WE HAVE IS ONE DAY AT A TIME ANYWAY. GOOD LUCK TO YOU AND MAY GOD BLESS YOU AND KEEP YOU. YOU ARE WELCOME TO EMAIL ME IF YOU WISH. AT [email protected]
  • sr6686
    sr6686 Member Posts: 1
    margurite said:

    HELLO ,I JUST JOINED THE GROUP AND READ YOUR MESSAGE.I AM SURE THE WAY YOU FEEL IS THE WAY MOST OF US DO .I HAD MY LEFT KIDNEY OUT IN OCT. AND AM FEELING GOOD BUT STILL I WORRY. I JUST TRY TO STAY STRONG.MAYBE AS TIME PASSES WE CAN BOTH CALM DOWN ALITTLE ALL WE HAVE IS ONE DAY AT A TIME ANYWAY. GOOD LUCK TO YOU AND MAY GOD BLESS YOU AND KEEP YOU. YOU ARE WELCOME TO EMAIL ME IF YOU WISH. AT [email protected]

    I'm new to the group too. I just had my right kidney removed in Sept - had a 7 cm mass. Coming up on my six month CT and a little concerned. Cancer runs high on both sides of my family. (No kidney). Just curious what to expect and see how others are doing?
  • dejorgensen
    dejorgensen Member Posts: 13
    I had a right radical nephrectomy in Jan 1996 due to a lemon-sized tumor. I'm still perking along, guys, enough though I didn't really want to live (my employer replaced me before we even found out whether the cancer had spread. It hurt me a lot). So your will to survive should give you even better results than I got. I have a chest x-ray yearly and other assorted non-invasive tests (blood, urine), and I can do everything I used to do. I still have moments of uneasiness when a new "symptom" appears, but I wait a week and it usually goes away. If it doesn't, I see the doctor, and he finds out for me that it's nothing, and off I go again, happy. So far, so good. Like everything else in this world, it's one day at a time, and eventually they add up to 8 years, 10 years, 20 years.
  • hrhunt
    hrhunt Member Posts: 2
    Hi everybody I also am new to this group and am a long time RCC survivior. I had my right kidney removed in 1989 and perked along real well until the found a met in my left lung in 1997 when they removed my lower lobe of the left lung then 1 year ago they found another met tumor on my right lung and were able to remove it with out taking any of my lung. I opted into and am completing a research study using vaccine for the treatment of stage IV Renal Cell Carcinoma. So far so good. The university of MN is conducting the study and as many others I hope this is a good option for all. Thanks for letting me share. Ralph
  • jbella
    jbella Member Posts: 1
    hrhunt said:

    Hi everybody I also am new to this group and am a long time RCC survivior. I had my right kidney removed in 1989 and perked along real well until the found a met in my left lung in 1997 when they removed my lower lobe of the left lung then 1 year ago they found another met tumor on my right lung and were able to remove it with out taking any of my lung. I opted into and am completing a research study using vaccine for the treatment of stage IV Renal Cell Carcinoma. So far so good. The university of MN is conducting the study and as many others I hope this is a good option for all. Thanks for letting me share. Ralph

    Hi everyone. I writing on behalf of my mother 51 who was diagnosed Feb 18th 2004 with RCC. 9cm mass on left kidney with nodules on both lungs. She had the kidney entire kidney removed on March 5th and is doing well. We are scheduled for a follow up visit with our uncologist on April 2nd for treatment possibly IL-2. We are praying and have much faith. So far she is doing very well after surgury we are hoping for the best in the next months to come. Any commments???
  • joyful
    joyful Member Posts: 7
    Shame on you Digman!!! Your prognosis sounds incredibly great!! I was shocked to hear you say, you wake up everyday scared. Don't allow this to overtake you. Keep your mind on positive thiings, even if it means staying off cancer chat boards. cancer is not who you are. You are healed by the power of God, you have life and living. You had surgery on Friday and home on Monday, your Birthday! What a Blessing!!! Please, for me, someone who will be going through surgery soon, stay positive. Live, Help, Pray. Vacation, visit. Don't think of cancer every day because it is not who you are,
  • pattymooch
    pattymooch Member Posts: 3
    jbella said:

    Hi everyone. I writing on behalf of my mother 51 who was diagnosed Feb 18th 2004 with RCC. 9cm mass on left kidney with nodules on both lungs. She had the kidney entire kidney removed on March 5th and is doing well. We are scheduled for a follow up visit with our uncologist on April 2nd for treatment possibly IL-2. We are praying and have much faith. So far she is doing very well after surgury we are hoping for the best in the next months to come. Any commments???

    Hi. I too am writing on behalf of my mom. She is 59 with transitional cell, full left kidney removal on March 2 and 2 weeks later they did another ct scan and found several nodes in her lungs. I could really use some info on the nodes in the lungs. I feel pretty hopeless at times. I am trying to stay positive for my mom but i think she is feeling pretty bad.
  • BARBARATT
    BARBARATT Member Posts: 16
    hi , i had left renal cell carcinoma. i had a partial and my scar is from navel to shoulder blade. i don't care about the scar i care that i made it . 4 weeks today. i am afraid too. i have my post op appt. next thursday. i know i have to have blood work and scans for the rest of my life. i have fears but i am strong and i have people like you that give me help and hope that we can get through this together. i am new to the group too. this is my fist reply so lets chat . i am 49 and live in ny. my dr was head of nephrology. chief squier of columbia presbyterian hospital. my tumor was 3x3x3. self contained thank god.e mail me at [email protected] to chat more. if you want. be proud we made it.
  • babylinda
    babylinda Member Posts: 2
    BARBARATT said:

    hi , i had left renal cell carcinoma. i had a partial and my scar is from navel to shoulder blade. i don't care about the scar i care that i made it . 4 weeks today. i am afraid too. i have my post op appt. next thursday. i know i have to have blood work and scans for the rest of my life. i have fears but i am strong and i have people like you that give me help and hope that we can get through this together. i am new to the group too. this is my fist reply so lets chat . i am 49 and live in ny. my dr was head of nephrology. chief squier of columbia presbyterian hospital. my tumor was 3x3x3. self contained thank god.e mail me at [email protected] to chat more. if you want. be proud we made it.

    I was diagnosed with rcc, clear cell type on 2/7/04, spent a week in the hospital for pain control, scheduled for surgery on 2/17/04. I live a rural place and one of the 2 surgeons was on vacation and I had to wait for her to return before the urologist would do surgery, that is why the wait. My tumor was 8.0 cm diameter. Grade 2 and stage lll. The adrenal gland was univloved, unremarkable. 3 lymph nodes were negative for malignancy. The tumor invades into the renal vein. I was in so much pain due to pressure at the incision. It turned out I had an infection and the pressure was caused by all the drainage that had to drain out. I also have fears of it spreading. I have been having back pain, never had it before, but scans in xrays don't show anything. I was so depressed and in pain that I really wanted to die. I prayed to God and gave it all to Him, I am feeling better and go back to work on 4/2. I will do scans and xrays every 6 months.
    Linda