Kidney cancer patients: Let's connect and introduce yourself

Posted by koke @koke, May 2, 2023

I have stage 4 kidney cancer. Taking target and immunotherapy drugs. Would love to connect with anyone who is going through the same process or has kidney cancer!

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

@irkah

How large was the tumor and its grade?

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Low grade about 2 cm

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@koke

Hi! I’m 63 and not sure if I my info will help or not. I had my kidney out last October. I was very tired and could hardly walk for about 2 weeks. I got up every day and pushed a little farther. Within a month, I felt good. My cancer has now spread to a tumor attached to my lung. I am taking a target drug and an IV immunotherapy drug. After 6 weeks, I’m pretty wiped out. The drugs are hard but if they kill the cancer, I’m ok with feeling lousy.
I believe in prayers and listening to God. You’ll find your answer! Koke

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How large was the tumor and its grade?

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@racing212

I had kidney cancer and 2 month's ago I was done in Rochester to get it removed. I has a mass on my kidney and they got it all and left the kidney.. I'm not doing any treatment. They're just watching it more

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What was the size of the tumor and cancer grade?

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I have had two different Kidney cancers and two partial nephrectomys... at age 62. Included rebuilding of my kidneys and issues with infections, sepsis and subsequent chronic heart failure with chronic kidney disease now from some of the infection damage. For tracking the cancer,
I started with CT scans every 3 months, with contrast. After the first year we went to every 6 mths and now at 4 yrs are shifting things a little , so still testing every 6 mths, but using MRIs and alternating with ultrasounds along with lab tests and chest x-rays. Oncologist and I are hoping to limit the radiation I'm receiving in every test. We have to be diligent, but also take into consideration other factors that can affect our Long term health .

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Interesting to learn that there is imaging for this and that until you have covered many possibilities, for example, of spread. I likewise started "by accident" having a cat scan of my back that imaged a "mass" on the lower lobe of the right kidney. I am hopeful that the mass will be benign.
My oncologist, who helped me with a melanoma over five years ago via chemo, is currently out of the country so, as you experienced, I may have several different types of imaging for different reasons on return. I am hopeful to get the next imaging as soon as possible after return. I am betting on early January.

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@stonejax

Diagnosed with mass on lower lobe of right kidney via a general back cat scan image. Would like to discuss ultrasound versus cat scan with and w/o contrast and MRI for diagnosis.

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It is conceivable that they will do all the tests. Contrast gives the best visual. In the past one month, I started with ultrasound that “by accident” found my kidney mass. Then I had MRI with contrast, followed by CT scan of my chest. They were each used to “hunt”for something different. US found it, MRI checked other organs, arteries and veins for possible spread of CA and finally CT of my chest to check my lungs. We are all on a journey each different, but ironically all the same.
Blessings.
Doug

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I would plan on it. Although I didn’t feel much like moving for many months, I pushed myself to do a little more every day! I believe this helps along with living and keeping a healthy positive mind. I’ll be praying for you! Koke!

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Thank you for sharing, and I am pleased that I may be able to play tennis and ski again depending on what I learn in Philadelphia at the cancer center of the University of Pennsylvania.

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@stonejax

I now have an appointment at U of Penn hospital in Philadelphia for a cat scan and to speak with an oncologist for January 2 (cat scan) and 3 (oncologist). So I am following your suggestion.

After reading articles on kidney cancer, I understand that there is an operation that can spare a portion of an impacted kidney. I suspect that you were found to have a greater than 7 cm size cancer mass and so the entire kidney had to be removed.

I have read some individuals are weak after their kidney is removed. But I believe that age is a factor in the degree of weakness felt. I am 73 but am active, play tennis and ski. I suspect that I may have to give up active sports.

I hope you are young and active after kidney removal.

Thank you for confirming that I am following the correct course of treatment.

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You are correct. My mass was larger and thus kidney was removed a year and 2 weeks ago. I turn 64 tomorrow and feel great! I recovered fairly quickly from kidney removal (about 4 weeks) but then confirmed cancer had spread to lymph node on lung. In March, I started cabo (daily chemo pill) and IV every 4 weeks and that wore me out for several months. The cancer has not appeared on any CT scans since July. So blessed! Since September, I’ve slowly gotten my strength back and feel more like my old self. I watch my diet and am building my activity level daily.
I pray, try to live a very positive life and enjoy time with my kids and friends. I feel blessed every day I wake and that alone makes me very happy. To me, I live a very spiritual simple life…the little things don’t bother me any more and I enjoy the simple moments in every day! In a rather unusual way, my cancer has drawn me closer to the people I love the most and has shown me how many people deeply care about me! I am blessed and pray for us all.
Enjoy today…Koke

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@koke

After it was confirmed by having a biopsy of the mass in my kidney that it was cancer and subsequently having my kidney removed, I continue to have a CT scan with contrast every three months to see if the cancer has spread. I have learned that CT scans are the best way to see changes in the kidney and the area it most likely spreads (lungs). When they thought they saw something on my liver, I had an MRI done with contrast. It seems to me that depending on where and what they are looking for, depends on the scan they order. X-rays are not definitive compared to a CT. This is simply my understanding.

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I now have an appointment at U of Penn hospital in Philadelphia for a cat scan and to speak with an oncologist for January 2 (cat scan) and 3 (oncologist). So I am following your suggestion.

After reading articles on kidney cancer, I understand that there is an operation that can spare a portion of an impacted kidney. I suspect that you were found to have a greater than 7 cm size cancer mass and so the entire kidney had to be removed.

I have read some individuals are weak after their kidney is removed. But I believe that age is a factor in the degree of weakness felt. I am 73 but am active, play tennis and ski. I suspect that I may have to give up active sports.

I hope you are young and active after kidney removal.

Thank you for confirming that I am following the correct course of treatment.

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