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Recurrance , 3 years clear, new spot

Posts: 3
Joined: Sep 2009

had stage 3Tb in May 2006, 10cm tumor removed along with my kidney and adrenal gland.
then on Nexavar for a year. that was so much fun. have been clear for 3 years.
then on my recent MRI, they found a 2cm spot on my right kidney. just had a cryo-ablation procedure, walked in, walked out the end of the day. i'm told this is a new primary and not a spread. really!

so the big question: is this the start of things to come. whats next, when, where.
spoke to a Urologist at the gym, not my MD. he told me when it hits the liver, expect it go everywhere else. chest lung is usually multiple spots.

hoping the next time its just a single spot again.

anyone out there have a recurrnace after a few years, then have the spot removed. then how the heck is the rest of your life. have you cashed in your 401K and thought about going to the south of France. i may consider this, next time i get a spot.

my personal email, feel free to use is: joe.falcone@prufoxroach.com

TroVax106's picture
Posts: 4
Joined: Sep 2009

Sorry to hear about your situation I had stage 4 rcc and enrolled into a clinical trial for a drug called trovax in 2005 and now cancer free. After a setback Trovax has been approved by the FDA to continue the trials and hopefully it will be more widely available and may be something you might be interested in looking into.

Posts: 49
Joined: Dec 2009

I've been searching the site for someone like you. I lost my right kidney Jan 06 after being told in Oct 05 I had cancer in right kidney. (found only due to bicycling accident) Almost exactly 4 yrs after being told the first time I was told I now have cancer in my left kidney (the say 80% sure it is cancer). I understand all the emotions you are going through. Will I see retirement? I can't quit work or retire early now because I must have the insurance. (female age 56) October was a very rough month and anxiety meds helped me get through it. After talking with 2 oncologist, family dr and urologist it has been decided to wait until March, do another MRI to see how big the spot is, THEN decide how to treat this thing. It has grown half cm in 6 months. (Oncologist didn't tell me last March it was there at .5cm) Now it is 1cm. I hate the thought of this growing in me but they say it is too small and too dangerous to go poking on it now. They say when it is larger they can then biopsy and cryo-ablation at same time instead of poking it twice. They said it is new cancer, not metastasized. Location is middle back of left kidney. No symptoms, feel great! Just emotionally a wreck. I didn't have any treatments or meds first time around. Shadow on liver and lung but PET scan didn't show them as cancer. Please let me know how you are doing. I need help in knowing from your experience what I should do or not do. Question I should be asking. Did they mention Von Hippel Lindau testing for you? Thanks and looking forward to hearing from you.

lbinmsp's picture
Posts: 266
Joined: Jun 2006

I can hear your fear and confusion - all well justified. I had Stage I RCC in June of 2001 treated with radical nephrectomy with adrenal gland removal. Path reports indicated 'all clear', no lymph node involvement, etc. My urologist followed me regularly, first every 3 months with blood work and CT's, then every 6 months. Just shy of my 5 year 'all clear', an early breast cancer was discovered. While undergoing a pre-treatment CT for that, they discovered 3 nodules in the right lung. Biopsy showed this was metastasis from the original kidney cancer. I had a lower lobectomy and have been tumor free now for 3 years. My doctors say that when there is a long stretch between metastases, we do 'better' than average (whatever that means). I did quit a very stressful job after the breast cancer/lung mets - figured one too many cancer diagnosis equated to enough stress. I simplified my life, am doing small work that helps pay the bills but haven't bailed on life. The key, I believe, is continuing with close followup. RCC is a nasty mean sneaky disease that can pop back into your life regardless of staging. My docs say 'if we can keep cutting it out we can keep you going indefinitely'. So - catching it early is critical.

Posts: 49
Joined: Dec 2009

Yes this is all very scary and confusing. It seems like my future will be full of worries when it comes time for another scan after I get this new cancer taken care of, and I will! My husband says I was in denial the first time but I was confident that they took it out and I was done with cancer, BIG SURPRISE! When a friend hears about the cancer they automatically poor out concern. I feel so good though! How can I feel so good and have cancer? Someone told me the other day that they would have never known by my attitude that anything was wrong. I have to keep up the spirits for myself as well as my loved ones. My husband and co-workers have seen me loose it but everyone else only sees the cheerful, strong me. I can't dwell on it or I'd go crazy but I do worry about the future. I wish I could leave my job but it is not possible now due to insurance. When I told a Dr this Saturday about my cancer and shadows on lung and liver his reaction was pretty scary. (had scope of my stomach for polyps) It is like I just told him I was dying in a year! That seems to be the reaction of lots of people ~ but I feel good!!! Do you get that kind of reaction? Did you have to take any treatments?

KCFighter's picture
Posts: 50
Joined: Jan 2006

reading your story really scares me, definitely brings it to the forefront...I try not to dwell on it but the worry is always there. However, it does bring hope to hear that you are doing well after 9 years! I'm on annual follow ups now. After 5 years, my doc is thinking annual follow ups will be too much. Not sure how I feel about that, as you say, close following to allow early detection is key.

I had stage I RCC which was treated by removing right kidney in 2006. Kept adrenal gland. My 4 year check up is in April and I'm getting nervous. My sub-type was chromophobe. Do you know the sub-type of RCC you had?

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