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.

@koke

At the very beginning of when I was told I had kidney cancer, I was thinking about a million different possibilities, asking myself ‘why?’. I asked my urologist surgeon ‘why’ I got kidney cancer. In a VERY stern voice he said, don’t ever ask yourself that question again!!! He said if they knew that answer they could cure cancer and they haven’t been able to! So…I pass his words of wisdom onto you…you’ll drive yourself crazy questioning ‘why’… so don’t! Stress, anxiety, worry….are not healthy and especially not healthy for our cancer. It’s one of the few things I can control so I don’t!
Easier said than done but for me, it’s become easier over time.

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Thank you. You are correct. I will go forward and not talk of this again. You are correct in that stress and anxiety are to be avoided. I have to follow your advice and I will share the advice I have given to my patients, with a saying that has been very useful. “Yesterday is history, tomorrow is a mystery, TODAY, is the day.” Each and everyone one of us, do well, today. Blessings.

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@goibib

Now you have me thinking. We also used to farm and so many pesticides were used including DDT which is now banned here. That never entered my head until you mentioned it and thanks for that. I am going to find out if there's a connection. Blessings

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At the very beginning of when I was told I had kidney cancer, I was thinking about a million different possibilities, asking myself ‘why?’. I asked my urologist surgeon ‘why’ I got kidney cancer. In a VERY stern voice he said, don’t ever ask yourself that question again!!! He said if they knew that answer they could cure cancer and they haven’t been able to! So…I pass his words of wisdom onto you…you’ll drive yourself crazy questioning ‘why’… so don’t! Stress, anxiety, worry….are not healthy and especially not healthy for our cancer. It’s one of the few things I can control so I don’t!
Easier said than done but for me, it’s become easier over time.

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@dougr19

It is three in the morning here in Oregon. Thanks for continued information. There is no history of cancer in my family of any kind. However, besides genetics there is environment. I live on a small farm and Am surrounded by nurseries. Between these nurseries and myself we use herbicides to control the weeds. I use them on my little farm to grow weed free hay for my horse. There seems to be a correlation between use of herbicides and renal cell carcinoma. I do not smoke nor drink. I have been a vegetarian for fifty years. However, known carcinogens are in my shed as I write this. Coincidence? I may never know. Now it is me rambling. Thanks so much for sharing. Each and everyone. Those who may just read these posts and those who share. Whatever your belief system is, I pray for each one. Blessings.

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Now you have me thinking. We also used to farm and so many pesticides were used including DDT which is now banned here. That never entered my head until you mentioned it and thanks for that. I am going to find out if there's a connection. Blessings

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@dsh33782

Hellow everyone. I'm a mentor and have been successfully treated for esophageal cancer in the last year, but today I got the results of biopsy on my left kidney indicating I have a growing mass on my left kidny called renal cell carcinoma. I have now been transferred to kidney surgeon and have first appointment on 9/14. The expectation is that he will want to remove mass if possible or remove the entire kidney. I have no symptoms at this time. The kidney tumor was found on last CT scans showing kidney tumor has grown 1 cm. I'll learn a lot more at first appointment with kidney surgeon, but I would love to hear from others who have been down this road before me.

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I have been reading each comment and came across yours. I see a surgeon this Monday (10/16) to see what is next after ultrasound and enhanced MRI Were done. Also for you and anyone else reading. I have been a physical therapist for 45 years. Interestingly, I used to work on an oncology unit. Now I am an oncology patient. If I can be of help to anyone as it relates to exercise, please let me know. Blessings.

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@goibib

Hi......I am sorry to hear what they say about the results of the MRI. I hope that when you see the surgeon on Monday he first does a biopsy to make doubly sure. Because mine was contained in the kidney they decided on treatment with the Votrient pill and a diet. Granted the Votrient makes me nauseous and I have lost a lot of weight (one of the side effects of Votrient) but I cannot lose my kidney as the other kidney only works a small bit. I don't want to bore you with my condition but I also have a genetic disease called thin Membrane Disease which put me into stage 4 kidney failure before the cancer came along. Where the cancer came goodness only knows. There's no cancer in my family.
Now I have given you a whole lot of useless information not regarding your problem.....but I truly hope they do a biopsy first to see if they can treat you and keep your kidney. Please keep us posted. Blessings.

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It is three in the morning here in Oregon. Thanks for continued information. There is no history of cancer in my family of any kind. However, besides genetics there is environment. I live on a small farm and Am surrounded by nurseries. Between these nurseries and myself we use herbicides to control the weeds. I use them on my little farm to grow weed free hay for my horse. There seems to be a correlation between use of herbicides and renal cell carcinoma. I do not smoke nor drink. I have been a vegetarian for fifty years. However, known carcinogens are in my shed as I write this. Coincidence? I may never know. Now it is me rambling. Thanks so much for sharing. Each and everyone. Those who may just read these posts and those who share. Whatever your belief system is, I pray for each one. Blessings.

REPLY
@dougr19

I had my MRI last night, it has not spread outside my kidney. However, after review from three physician’ it “seems” to be renal cell carcinoma. I now see a surgeon this Monday the 16th to decide the next step. The crazy thought I have, is I could lose a kidney and the mass could be benign. I have not obviously met any of you on the other side of these writings. However a kinship has been made. Blessings.

Jump to this post

Hi......I am sorry to hear what they say about the results of the MRI. I hope that when you see the surgeon on Monday he first does a biopsy to make doubly sure. Because mine was contained in the kidney they decided on treatment with the Votrient pill and a diet. Granted the Votrient makes me nauseous and I have lost a lot of weight (one of the side effects of Votrient) but I cannot lose my kidney as the other kidney only works a small bit. I don't want to bore you with my condition but I also have a genetic disease called thin Membrane Disease which put me into stage 4 kidney failure before the cancer came along. Where the cancer came goodness only knows. There's no cancer in my family.
Now I have given you a whole lot of useless information not regarding your problem.....but I truly hope they do a biopsy first to see if they can treat you and keep your kidney. Please keep us posted. Blessings.

REPLY
@dougr19

I had my MRI last night, it has not spread outside my kidney. However, after review from three physician’ it “seems” to be renal cell carcinoma. I now see a surgeon this Monday the 16th to decide the next step. The crazy thought I have, is I could lose a kidney and the mass could be benign. I have not obviously met any of you on the other side of these writings. However a kinship has been made. Blessings.

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That’s great it hasn’t spread! Going through this process was/is a mental nightmare and for me, praying kept me sane since there was/is very little we can do! Have the drs talked about having a biopsy to confirm it’s cancer? No other way to determine it is 100% cancer other than having a biopsy.
Koke

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@goibib

Hi. By now you will have had your MRI. I live in South Africa so there's a time difference . But if you have any results.. (and I pray they are good results) please keep us posted as you go along. Blessings for the biopsy.

Jump to this post

I had my MRI last night, it has not spread outside my kidney. However, after review from three physician’ it “seems” to be renal cell carcinoma. I now see a surgeon this Monday the 16th to decide the next step. The crazy thought I have, is I could lose a kidney and the mass could be benign. I have not obviously met any of you on the other side of these writings. However a kinship has been made. Blessings.

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Hi! I’m Koke, the person who started this post months ago! I so appreciate everyone’s comments, experience, questions and progress! About a year ago, my right kidney was robotically removed. I was so relieved to have the cancer out of me. I had a biopsy a month before confirming I had kidney cancer. Three months later, determined by a CT scan, the cancer had spread to a lymph node attached to my lung. I am taking a chemo pill daily and I have immunotherapy IV every 4 weeks. My life has completely changed. I am very very blessed with a large support group and I pray a lot! There is no other choice! I watch my diet, try to exercise and have a very positive attitude! All this helps me tremendously! I pray for all of us. I find it very helpful to read and talk to all of us who are experiencing RCC. And for those wondering….I have had a tremendous success with the drugs! The cancer has disappeared….I pray it ‘stays away’….I live one day at a time!
Enjoy your day….Koke:)

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@dougr19

Just having someone answer is a relief. So thank you so much. I am having my MRI tonight. No biopsy has been scheduled as of yet. I actually see a surgeon next Monday. My Blood work is fine. I feel fine. They found the mass by accident. I will continue to list my progress as this goes on. Thank you again for your response. Blessings to you.

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Hi. By now you will have had your MRI. I live in South Africa so there's a time difference . But if you have any results.. (and I pray they are good results) please keep us posted as you go along. Blessings for the biopsy.

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